Parenting A Child Who Has Chronic Fatigue Syndrome
There is no greater frustration for you as a parent than to stand by and helplessly watch your child suffer. The indescribable pain and anguish that you feel in observing your child crying and begging for the agony to stop seems to reach down inside to the depths of your own soul and tear it asunder. As a loving parent, you have the strong desire to remedy your child's agony by moving heaven and earth to find a solution to his dilemma. However, there are times where there are no answers or resolutions to a predicament. You can do nothing to accelerate the process or help end the duration of CFS. There may have been some minute indicators that your child was ill. . . a low grade fever, complaints of muscle aches, or a sore throat. No specific symptom being any more unusual than that of having a bad flu. You treated the manifestations with the normal routine in addressing the viral infection and then waited it out. But, what you didn't count on was the extent and degree of illness that your child was suffering within. He started to gain or lose a drastic amount of weight, complained of aches and fatigue almost constantly, and couldn't do much of anything except sleep. You began to get very concerned that something more severe than a flu virus is going on. He was not getting better and your instinct was telling you that your child was feeling much worse. It is time to get some advice and help from a professional. A trip to the pediatrician doesn't convey much hope in diagnosing what is wrong with your son. He has no idea what is affecting him. All that can be stated for sure is that this situation is more than the flu. The doctor may have given you a prescription to try to see if the virus will clear up or may have ordered tests for various diseases to surmise some type of diagnosis to what is happening within your child. He orders you to come back at another time to get the tests done. You go home with your child totally exhausted and asleep in the car.
Once you are home, you begin to review this predicament in your head. Your daughter doesn't appear to have the energy to undergo any sort of examinations. You realize that these tests are necessary to help detect what is wrong. You are put in a position of deciding how to motivate her to go through with the exams. How can you possibly expect your sick child to understand that she has no choice but to go through painful tests just to figure out what is wrong with her? All your daughter can do is lay in bed and beg you not to make her go through with the examinations because it hurts too much just to get out of bed. Your heart breaks into little pieces looking into her big eyes full of tears. What can you do? You keep asking yourself if there is any other way that your child can be diagnosed other than putting her through this ordeal. How about asking your physician to see if there is any other course to attempt other than the tests? The doctor says no and you have no alternative except to go along with her wishes for the painful exams. It seems as if you are betraying your daughter in having to bring her in for the exams. She sobs all the way to the physician's office partially out of being in pain and partially out of fear. You have decided to be by your daughter's side to reassure her that everything will be okay while the tests are being done. Your child winces at the extreme pain she is suffering with while the procedure progresses and it is at that moment that you can see just how brave and strong your child really is. Your parental love for her makes you question if you have made a wrong decision in allowing the doctor to invade your child's body with chemicals and needles. However, as an adult, you can understand that these examinations are necessary to aid in discovering what is wrong with your child. It just doesn't seem fair that your child has to go through so much torment. Isn't it bad enough that she suffers every day and now has to endure more pain and anguish in going through with these diagnostic exams? The tests get done and she is so fatigued and pained that all you care about is getting her home to bed. Your priority is your child. You acknowledge that she went through a massive ordeal to go through with these examinations and waiting for the doctor to come back into the examining room to talk with you about the tests seems almost inconsequential.
You discover that your physician has received the test results a few days later and there are no conclusions that can be drawn about what is wrong with your son. Meanwhile, he is getting weaker and weaker. There is little to no appetite and his coloring is getting paler and paler. What is the next step? Your doctor suggests that your child go to a specialist. Little do you realize at the time, but this simple recommendation pyramids out and introduces you to many visits to various specialists. By the time you have gone to all of the miscellaneous doctors, your child can no longer stand to be in a physician's office at all. He bursts into tears at the idea of having to be a human pin cushion again. It takes every ounce of internal energy and strength to get yourself "hardened up" so you won't fall apart in seeing how emotional and upset your child is at the process of going to another specialist and what he has to go through in that office. You are having an unnerving feeling that you are betraying your child by allowing him to endure such intense pain over and over again. It almost appears that he is becoming more withdrawn and fatigued at every visit. Your child no longer desires to be close to you once you get home and wants to be left alone. Your son perceives that you have definitely done irreparable damage to his confidence in you as a protective parent because you permit the specialist to inflict pain on him. The worse part is that all of these office visits have concluded different diagnoses from different types of specialists. There is no conclusive evidence if he is or is not afflicted with a life threatening disease. The test results show a viral type of infection but there is no specific type of virus that the specialist is aware of that would cause these varied symptoms that your child exhibits.
An infectious disease specialist may base a diagnosis on one of the specific symptoms such as a parasite or similar type of infection. Common sense tells you that this isn't the cause all of her symptoms. This doctor recommends another specialist who may tell you that there is nothing wrong with your child and that you are just spoiling her. She is acting out to get attention. This physician recommends a session with a psychiatrist. By this time, months have passed and you are getting so desperate for someone to help your child that you will try anything that any doctor suggests. The psychiatrist may conclude that your child is depressed and should be on some sort of medication. You keep asking who wouldn't be depressed going through what your daughter has been coping with. She is very ill, not getting any better, and no one seems to know what is wrong with her. No one seems to understand that you sense that something is definitely and seriously wrong with your own daughter. Your faith in the medical field has been shattered and you conclude that you are now back at square one months later. No one knows what is wrong with your child and no one seems to care. She is getting weaker and other symptoms are surfacing that are making her life more painful and intolerable. What do you do? Where can you go to find out what is actually happening to your child? How can you stop this nightmare from continuing?
You could contact a major hospital to ask if they have some sort of pediatric specialist who handles infectious diseases or you may be fortunate enough to discover a chronic fatigue clinic in your area. The physicians you decide to seek out should be knowledgeable about chronic fatigue immune dysfunction syndrome and its symptomatic effects on a child's system. You could ask to speak with the doctor before you decide to make the trip to see him. You should feel totally secure in your decision to proceed with this visit. It may mean that you will have to travel out of state to get your child some help. Nevertheless, you should ask yourself if the diagnosis is worth the temporary inconvenience to both yourself and your child. Can you stand living in limbo any longer? Could you keep living in this chaos? Wouldn't it be wonderful to actually know what is happening to your child?
Explain to your son that a trip may be necessary to finally detect what is actually agonizing him and that it will mean more tests and examinations. You should instill hope in your child that this could be the end of enduring these painful exams because this doctor may be finally able to tell you what he is suffering from. If you discuss the set of circumstances with him, it will aid in producing a more cooperative attitude about going to the clinic or hospital. You shouldn't expect that your child will jump at the chance of going to the clinic or hospital. Try to be empathetic to his suffering at the hands of uninformed physicians in the past and why it would be so difficult for your son to believe that this excursion would be any different than any of the other doctor's visits. It may take some coaxing on your part to make this visit a reality since he will be initially uncooperative and disagreeable. There will be some concessions that have to be made in traveling with your sick child such as setting up a temporary bed in the back seat of the vehicle you are traveling in or making more stops than you normally would to complete the journey. Your son may be overwhelmed with the vastness and antiseptic environment of the clinic or hospital. The staff persons who work at these places are usually very empathetic and sensitive to children's needs and will try to accommodate your child and you in making this visit a pleasant one within this set of circumstances. You may not be able to accompany your child as he is tested over and over again, but you can contribute to his or her loss of fear by encouraging a positive attitude and keeping him smiling as much as possible when you do see your child. Keep reminding your son that it will all be over soon and then you can go home to rest. A child requires love and support from his parent when trying to be brave and not scared. If you have a young child, bring along his favorite toy, blanket, or pillow so that he can tote it along shuffling back and forth to the tests with him. It will give some extra security when you are away from your child. It will be exceptionally nerve wracking for you to sit and wait while your son undergoes the exams, so be sure to either take a relative or friend along for support for you as well as your child and/or some type of reading material, needlework, etc. Whatever you select to take along should be portable and something that will keep you occupied for long periods of time. The best way to pass the time is to be hopeful that you will get some sort of direction and answer as to what is making your child ill. Your son may have to spend the night at the facility so that more detailed testing can be done the next day. If this is your situation, be sure to prepare your child for the overnight stay. He may wish for you to be there and some institutions will make accommodations for parents in the child's room. Some do not, so you may have to stay in a nearby hotel or motel for the night. Reassure your child that everything will be okay and be sure your son is as comfortable as possible before you depart from the hospital if you aren't allowed to stay in your child's room.
After the testing has been done, you may have a meeting with a specialist who will already have a preliminary diagnosis for you based on the immediate results of the examinations that were done on your child. The strange thing about this syndrome is that once all other diseases have been rejected through the process of elimination as the causes for the symptoms, the possibility that your child is suffering with chronic fatigue syndrome is confirmed. You will have a sense of relief and some of the anguish will be alleviated once a diagnosis has been made. However, the next step in this journey is what this means for your daughter to be sick with this syndrome. The answers you may get from your doctor won't be exactly what you wish to hear. Your daughter has contracted a disease that is not fully understood and there has been minimal available research done on how this illness affects children. One of the definitive conclusions that have been reached by researchers and physicians alike is that if your child has a bout with the syndrome early in her life, there is a possibility that it will occur again later on in her life-usually the middle years. The initial onset of the syndrome is the lesser of the two occurrences in time length of tolerance and in intensity of symptoms.
Another perception is that children tend to have a shorter length of time that they suffer with this disease as compared to adults. Some children will be ill one day and wake up feeling energized and healthy the next. It is very unpredictable to determine when your son will be well again but it will happen. Your doctor may explain to you that there isn't very much that can be done to aid your child's agony since the root of his infection is viral. There are no prescriptions or any type of drug that will boost the immune system enough to overwhelm this viral infection. He may have some medications and/or therapies that can be tried to alleviate some of your son's intense muscle aches, sleep problems, or digestive complaints. You will have a lot of questions that your specialist may not be able to provide answers for and you could end up feeling very dissatisfied with the diagnosis after all. It is almost a mixed blessing to discover what is going on with your child but then to not be able to do much to help him in getting well. The physician may make an attempt to explain to your child what is going on in his body and what to expect in the future to relieve some of your son's anxieties. Your journey to ascertain the cause of your child's illness has now been found. The doctor may tell you to get a physician in your neighborhood that he can confer with about your son and that some remedies can be tried on him to relieve some symptomatic pain. There has been no verifiable cause for this syndrome except that it is viral in nature and there is no cure. Where do you go from here? What can you do to help your child get better?
As a parent, you have a responsibility to unconditionally love your child-even if your daughter is chronically ill. CFIDS doesn't discriminate adults from children. Your child is sick with a virally based infection that she had no obvious participation in contracting. It came to her and has invaded into the immune system for however long it desires to be activated. You must comprehend that you are not at fault either for your daughter being ill. A parent can't foresee or protect her child from everything out in the world. You can only do what you can do and feel good about the amount of safety that you do provide for your daughter. There is no blame in this predicament. Chronic fatigue syndrome has just happened to enter your child's life. You must accept this affliction as a temporary part of your child's life and cope with it. Ignorance and denial will only extend the misery that your daughter is now confronting.
The first step is to evaluate and reprioritize your child's life. There are many factors to consider in helping your son be as comfortable as possible with this syndrome. Physically, he will have many symptoms to contend with and may be very miserable most of the time. His body is fighting a viral onslaught and when the antibodies in the system combat a foreign substance, it causes physical pain and aches. You will detect that your child complains about varied things happening in his body. It may be very frustrating to see your son suffer so much and there is not too much that you can do to help him feel better. There are a few things you can do to remedy some of the uneasiness that he may feel. Communicate the sentiments that you are trying to understand how much it hurts to be in his body and you want to help him feel more relaxed. Attempt to be as empathetic as possible towards your son's situation. You should try to fulfill the doctor's suggestions in helping your son to be more at ease by attempting the physical therapy that you can do at home on your child. Taking warm to hot baths or showers can temporarily relieve some of the muscle aches. Your child may need to take a pain reliever for his aches and pains and you should consult your doctor on what's best to get for him. You could keep his bedding and bedroom cleaned up so that his environment is fresh, crisp, and comfortable. How about bringing a television into his room temporarily if he requests it? The intense light from the set could bother your child, so it is not a good idea for him to watch television for extended lengths of time though. You may need to monitor his diet and see what foods tend to aggravate or initiate an upset stomach. His dietary needs will change day to day as food allergies set in. It is not unusual for your child to develop allergies to foods that he may have never had before. Elimination diets work well in trying to determine what is causing his digestive problems. Take out one type of food for a few days and see if the upset continues. Keep in mind that he may be able to tolerate these same types of foods a few weeks later. They should be reintroduced to the diet very slowly and gradually over time.
There could be nights where she may sleep from twelve to twenty hours straight through or could be up all night with CFS-related insomnia. You may have to attempt to keep yourself awake to cope with your restless one even though you have to work the next morning. You have to understand that your child needs you, especially now that she is tolerating this syndrome. She could be very fearful and anxious especially if awakened with bad dreams. It may help to relax your child as much as possible first and then to talk about how she is feeling. You may discover that your daughter has some type of physical discomfort that is causing a disruptiveness in her sleep pattern. Don't attempt to force your daughter to go right back to sleep. Let her rest in bed for a while maybe looking at a book or listening to soft music. Her body needs to have a relaxing time to allow the body to loosen up. Eventually, if sleep is meant to come, it will in its own time. Sometimes, your child may be awake for the entire day and night but will make up for the lack of sleep in the next few days. It will be entirely dependent on her systematic makeup having chronic fatigue immune dysfunction syndrome. Your child will be so fatigued combating the syndrome that sleep usually comes to pass out of nothing but sheer exhaustion. You should not be overly concerned with CFIDS-related insomnia unless it continues for a length of time where your daughter is not getting any sleep at all. Don't wait more than a few days to consult your physician if this situation should occur. It could indicate a more serious sleep related problem could be happening in his or her body than just this syndrome and its symptoms.
Your son may begin to talk about dying and have a fear that this is what is really happening to him. It is very scary to any child of any age to fathom the actuality that he is chronically ill with no idea of when it will end. There may be a sentiment that this disease is somehow terminal since the doctors can't really help him. On top of these thoughts running through his head, his bodily systems are depressed and not functioning properly which inhibits the chemicals in the brain. Once this happens, your child could feel very moody, remorseful, and melancholy. He may get more pensive and discuss unusual apprehensions and concerns that were never talked about before the sickness set in. In turn, he may introduce religious and spiritual discussions about the Supreme Being and what your child may have done "wrong" to have this befall on him. You should not be alarmed at this introspective and pondering attitude that your son may have. It is very common for any sufferer, adult or child, to think morbid thoughts since there is nothing but fear, worry, and anxiety in having any chronic illness. Our experiences as human beings is that most chronic illnesses end in a terminal way, not that the sickness lasts indefinitely based on the length of the viruses' activation within the body. You should try to explain to your son about the variety of diseases out in the world that are fatal, and that this sickness isn't one of them. He may be hesitant in believing you because there may be a sentiment that you are trying to cover up the facts so that he won't be upset or scared. This would be a good time to deliberate about your specific religious beliefs and how your tenets would apply to this specific situation. There needs to be some kind of spiritual reassurance that the Almighty would not forsake your child by making him suffer needlessly. The spirituality that your family holds true plus the religious beliefs that your household practices should provide some sensation of relief and support so that your son will be more assuaged, subdued, and satiated. Reaffirmations of wellness and love can contribute to his positive attitude about someday getting over chronic fatigue syndrome.
There will be many different emotional extremes that your daughter will go through in regards to coping with this syndrome. Fear, denial, anxiety, bargaining, and anguish are just a few. As a parent, you should be aware of the fact that a lot of the fluctuations in emotions are normal for someone who is learning to adapt and adjust to a chronic illness. She has to go through all of the feelings that any adult would in the same situation. The biological basis for some of the chemical alterations in the brain causes some sensations, however, most of the demonstrative pathos that you will encounter is from your child's inner turmoil of having her life turned upside-down. It is very important to be understanding of your daughter's distraught over being sick for a long time. She is used to recovering from colds, sore throats, or flu in a limited amount of time. It may seem as if she will be sick forever and that no matter how much reassurance is expressed, there is no end in sight for ending the misery. The same questions will be asked over and over again, "When will this go away? When will I get well again? When can I have a normal life again?" You will see more withdrawal, anger, tears, and yelling the longer the duration of CFS. These emotions are necessary for your special one to experience and work through the passions that are surfacing within herself. Gentle encouragement through emotional discussions, quiet moments of hugging, or even allowing solitary time can help your child express what he or she is confronting internally in her own way. She may use body language, words, or eye contact to expose or release what emotions are pent up inside of her. Hitting or yelling into bed pillows is an alternative way for your daughter to express anger without hurting herself, someone else, or breaking something. Your child should be advocated to let the tears flow if she begins to cry and you should explain that it can sometimes make her feel better to let out these feelings. There may be times where she will wish to be left alone and is exceptionally quiet. You should acknowledge these occurrences by respecting your child's right to privacy and reaffirming that if she wants to talk later that you are and will be available to talk. Only a child's parent can truly sense out what she requires when in need. There is comfort in knowing that you are providing a nurturing reassurance and love in understanding and comprehending your child's emotional demands. Try not to expect too much from your daughter on a daily basis. The trauma of being chronically ill plus coping with her parent's and family's expectations of still being the same old person can prove to be very overwhelming. Your child understands on some unconscious level that she is not capable of living life the same way any longer. There are pent-up frustrations from being ill and having everyone treating her differently only makes the situation worse. Your daughter may look the same since being sick but won't act the same. You could contribute to clearing away some of the misunderstandings and disagreements by perceiving that your child has emotionally altered to accommodate this disease. She will not react typically to daily habits and events. Stress seems to be around every corner and she will have some kind of reaction to it.
Understanding is the key tool in helping your child cope with CFIDS. You may detect that when he or she is irritated or frustrated, it is almost as if your child is picking for a fight or confrontation of some kind. Diffuse this time bomb waiting to happen by acknowledging his negative attitude and that you would feel the same way if you were stuck in bed all day and night with nothing to do and being so sick while all of his friends and family are out having a good time. Try to get your child to talk about what's actually bothering him. An alternative to arguing if the talk gets too heated is to leave him alone in his room to cool off for a while. You can cope with your son's emotional swings by using common sense and intuition. However, communication is vital in dealing with these emotions. If you don't help to expose the anger, frustration, resentment, denial, and pain within your child, there could be more serious problems ahead for the both of you to contend with. Never take for granted that you comprehending the full intensity of what your child is thinking or feeling in dealing with chronic fatigue immune dysfunction syndrome. The only person who can truly understand what your son is going through is another person who is dealing with the exact same situation. Every individual suffering with this disorder is experiencing an individualized journey with this disease. No person's suffering is exactly the same.
A teen may react a lot stronger to his or her emotions as compared to a child-thanks to puberty. If she feels that there is no one to talk to about tolerating CFIDS and all that this encompasses, including the effects it has on her social life, melancholy and despair could set in. Over time, these buried emotions could intensify to such a large degree that she loses touch with reality and withdraws into her own secluded world. You may never have or take the time to notice. You could perceive the withdrawal as part of her way of coping with chronic fatigue syndrome. Your child could contemplate suicide as a way to cope with the physical, emotional, and mental anguish that she is suffering with. She may ascertain that this seems to be the only sane alternative to the insanity of coping with this disease and also combating the pain. No child deserves what she is battling when it comes to this syndrome. It makes logical sense to have a better grasp and awareness on how your child is feeling or what is going through her mind. How do you do this? How can you prevent this predicament from happening to your very sick child? Communicate on a regular basis! Your daughter is never too big to stop giving gentle hugs to, a kiss on the forehead, or holding her hand can go a long way in expressing the love that you have for your sick child. You could do something special to create a sense of intimacy so that you can introduce a feeling of safety and closeness to your daughter. She may feel comfortable enough to confide in you about what it is like to tolerate this disease. All you can do is to try to comprehend how complicated and frustrating it is to live with this ailment on a daily basis. Temper your own personal opinions about the subject and express positive reinforcement and support for your child emphasizing that she will get through this time with your love.
Chronic fatigue syndrome will cause many alterations within your personal relationship between you and your child. If you had a tight, close knitted bond with your son, it may become more intimate or this disease could shatter it. If you were distant and stoical, CFS will enhance this objective to a degree where you may never have any type of true alliance again. You may also discover that a positive outcome of your contention with this syndrome may result in a coming together of you and your child where there was no real communication before. There is no absolute, final, solitary conclusion that can be drawn about your battle with this affliction. All you can count on is that your connection with your son is in a fragile state of balance. It is up to you and your child to decide how vital your relationship is to the both of you. If you choose to keep working at the association and accept that no matter what the changes are that you will experience together on the journey of coping with this sickness, you will never give up on each other. The bond of love and caring that the two of you have will carry you through the worst of times ahead. It will take a phenomenal amount of patience, sympathy, and will power to support the two of you through this ordeal. It could be that you both are extremely close and always could count on the fact that no matter what life trials you had to endure, you both felt you would and could get through them. Now you have discovered that this disease has been so intrusive to your relationship, you aren't sure if your bond will ever be the way it was before chronic fatigue immune dysfunction syndrome entered your lives. Your son doesn't seem to care one way or the other about your alliance-there is only concern for his welfare. He doesn't care about your perspective on anything any more. You are at your wits end in trying to cope with your sick child and how much your relationship has changed. There may not be much of an attachment between you and your son right now. You may detect that there is even more distance and silence than ever before since he has been ill. The love that you have for your child is instinctively motivating you to attempt to reach out to him in this time of need. Remember, it is never too late to demonstrate your love for your son. You can begin by making an effort to open the lines of communication between yourself and your child. Talk and listen to each other. You can initiate a conversation about anything to do with the illness. Try to comprehend his set of circumstances and empathize with your son's plight. You may start out slowly with expressing your feelings and thoughts and gradually develop into showing physical signs of your love for your child, maybe a touch on the hand or a pat on the head. It will take time and lots of patience but you can reach some kind of understanding between yourself and your son. Your expectations of your relationship with your child have to change if you expect to sustain the association that you have. You can no longer count on him being the same individual that you have raised and loved. He is undergoing many alterations and adaptations in trying to cope with this disease.
You can contribute to aiding in her evolution by being more open minded in what you can expect from your daughter. She isn't capable of performing physical duties, carrying out mental chores, or expressing the turmoil deep inside as she used to be. You have to accept this as reality and that your child may not be the same for quite a while or maybe never. No individual can go through CFIDS without having some kind of residual alterations in her inner self. Love the person that is in front of you. You shouldn't keep some old image of who your child was and use that as some kind of standard to compare her to who she is now. Your daughter is still the same person deep inside. You will detect that you will have no choice but to adapt part of your life style to accommodate your child's if you plan on aiding her for the duration of this illness. There is no greater love than a parent's love for her child. Your love for your daughter will guide you and help you to do or say the appropriate things. Believe in yourself and your child and the love you have for each other! Don't expect anything is the best rule of thumb in dealing with your sick one. If you don't set any kind of serious or steadfast expectations, you or your child won't be disappointed or disappointing. The recognition of what she is coping with and how hard life is now for her should be a constant reminder to you of why your child has altered. You should show equal interest in your sick child as compared to the other children in the household. She may not be capable of participating in outside activities or even minimal family events such as having a meal at the table. You may find yourself bothered with having to cook and serve meals to her in bed. Your child could be house bound for an indefinite length of time and not able to attend school. Again, you are perturbed because you have to make trips back and forth to the school to get her work. Your sick daughter may want to go to bed at an unreasonable hour and require your help to do so. It may be an inconvenience to you because you are exhausted from working all day or were getting yourself ready to go out for the evening. Now, you have to stop what you are doing for yourself and help her. If you want them to be, all of these situations should be disturbances that are acceptable to you. Allow yourself to perceive and accept these disruptions as part of your adapted life style in having a sick child. It isn't anyone's fault that life is the way it is. You or your sick one have no control over the disease but you can manipulate your reactions to it. Your life styles shouldn't be ruled by your child's clash with this disorder-just adjusted.
Your child will have to adapt his expectations of you as well. Your son may think or feel that he is totally incapacitated with this syndrome and could rely on you as a panacea. You are assumed to be there if he wants a friend or someone to talk to. If your child requires some form of physical aid, it seems that you are the only one who can possibly help. There should be limitations that are enforced to uphold some sense of normalcy in the home if it should be that your sick child is disrupting the entire household with his incessant demands. There are some personal tasks that your child can do for himself while in bed or couch ridden that will not require your constant aid, such as with personal hygiene issues or getting out of bed to change the channel on the television set, and you should expect that he contributes to helping out by attempting to do them.
Your daughter must comprehend that you are empathetic and understanding to her plight but you have a life to lead as well. You cannot be at her beck and call twenty-four hours a day. You have lots of major responsibilities to fulfill and shouldn't be expected to put a halt to all of your life to be there for your child. Your daughter should be encouraged to empathize with your role in this situation as well. You may have a job, household responsibilities, relationship issues, and personal goals to attend to besides abetting her. How can you be expected to put everything aside just to be there as an assuagement for her? It is impossible. Your child may not be able to comprehend or imagine what it is like to have all of your obligations. You can attempt to explain to her that you may not be there all of the time because you are busy focusing on getting other things accomplished. Sometimes you will need help to get everything done because you aren't a super human who can do everything. Your child can contribute by being patient and understanding when you are occupied doing something else. You can stress that when she sees that you are busy doing something else and what your child needs at the time can wait then she should be calm and patient until you are ready to address her request.
Your son's expectations of who you are as a person may have to be altered as well. There may have been no previous issue with you having some personal time to yourself or in you going out for the evening with your companion. Now that your child is sick, he may expect that you shouldn't and won't have any quiet intimate time or a social life at all. From his perspective, a parent is supposed to be there all the time when illness strikes. This viewpoint may have been a reality when he had a cold or sore throat because it was a short time frame before he got well. Since your son has a chronic disease, the situation is a bit different. You can't be expected to be in the house constantly with your child. It isn't healthy for him or you. You need to replenish your own energies to be capable of sustaining yourself during these trying times. He will become so dependent on you being there and if you are the sole support constantly attending your child, there are no opportunities for your son to intermingle with anyone different. Your child would be inhibited from having any type of social interactions not only because of chronic fatigue syndrome but because there is never any chance for anyone new to come into his life. Both of you deserve an opportunity to correlate with another human being. You shouldn't feel guilty at the idea of leaving your child with a sitter, family member, friend, or neighbor so that you can go out for a walk, run errands, work out at the gym, or out to dinner with your spouse. It doesn't make you any less of a parent for paying attention to both your needs and your child's needs to socialize. If you require some quiet, alone time, then tell your son that you need to have a "time out". You can reassure him that you will be nearby somewhere around the vicinity of the house. If he is old enough to tell time, set a clock or watch near his bed or couch and specify the exact time that you will be available to fulfill his demands. You can explain that he should ask you now for whatever he needs because once it is your "time out", you won't respond to anything that he may request. You need to be very adamant and steadfast about not being disturbed during this time unless it is an absolute emergency. You should describe in detail what you consider an emergency situation to be as your child's interpretation could be totally different than yours. It is okay to have some respite time for yourself. Do something enjoyable to satisfy your own desire to rest and relax. Put your feet up and watch your favorite television show, take a long bath, read a book, do some needlepoint, or have a long cup of coffee while reading a magazine. Whatever you enjoy doing to make yourself relax should be the agenda for your "time out". You may even consider allowing your child the luxury of having the same "time out" scenario. He could have some private time when you are not invading his space so that he can enjoy some total privacy. It is very invasive for your son to have you constantly in his area even though he requires your help. There is no feeling of complete seclusion-ever. He doesn't have the comfort to listen to music that he likes unless the head phones are on his head.Your child may want to write in a journal or diary, feels uncomfortable with you hovering around him, and interprets your presence with the idea that you are spying or being nosy in trying to find out what he is writing. The situation could be that he wishes to talk privately with a friend on the phone and feels awkward about it because you are in his domain. He may not wish to be rude, disrespectful, or make you mad by asking you to leave the room so he can talk freely. The concept of allowing "time out" for him would remedy some of these uncomfortable positions that you would find the both of you in. You should use the exact restrictions for his "time out" as you do when you request it. There should be no deviations so that you both feel equally satisfied with your agreement.
You may not have the feeling that you can confide in and talk with your child as much as you used to since she has become ill. Every time you walk into the room, your daughter turns over and acts as if she is asleep. You may attempt to begin a conversation out of concern because she seems to be withdrawing more and more but your child doesn't respond in the way you expect. You may become frustrated because she isn't paying attention to you or is half answering your pointed questions. Your temper is flaring and a one sided disagreement erupts. You end up feeling very frustrated and angry that your daughter is shutting you out when you are trying to talk to her. It is so hard for you to be objective and see that you have brought on this frustration and vehemence to reverberate back onto you. It would be much more comfortable for everyone involved if you lightly hinted to your child if she would like to talk first. If she doesn't, fine. Attempt to talk to her at a later time.
Another suggestion would be to wait until you are asked to have a conversation with him. It could be that your son is feeling very dejected about being sick and is bored with being house bound and plainly desires some privacy or quiet time. You should respect this wish and patiently wait until there is some indication from your child that he is ready to talk with you. He may call out to you to get him something and then may initiate a conversation at that time. Don't attempt to force discussions if your child is too fatigued to have one as this will only result in frustration for you. He can't control the fluctuation of low and lower energy levels in his body. It could be that when you feel like having a talk, your son is so tired that he can't do or think of anything but sleeping or resting. Be respectful of how much rest that his body requires. One of the most vital things that your child's body requires to get well is rest and sleep. His immune system can't keep up the internal clash with chronic fatigue syndrome if there is no minimal build up of energy, no matter how little it may be. Encourage rest and sleep!
You should be on guard of instigating conversations out of boredom as well. It isn't fair for your child to be your captive audience when you are bored with being in the house with her. Try talking into a tape recorder about your feeling during this block of time. When you rewind the cassette at a later date and listen to yourself, you will detect that most of the way you felt was because you were lonely and needing attention yourself, not bored. Instead, you could get on the telephone with a relative, friend, or neighbor while your child is resting or sleeping. How about talking to your plants instead? They would love to have some attention and the best part is that they will respond to any tone in your voice with growth. You can actually see that your input is contributing to their life. Your pet would love to have some attention from you too. You may discover that just petting the animal while you are talking to her will satisfy your need to have someone listen to you. The best part of this solution is that your child doesn't end up resenting you for making her your enslaved sounding board.
One of the difficult issues to cope with when your child is sick with chronic fatigue syndrome is if your child is capable of attending school and how can he or she attend within his new adapted guidelines having chronic fatigue immune dysfunction syndrome. The decision of if your child is capable of attending classes is a simple one. He will obviously exhibit signs of fatigue and exhaustion. Your son may be so weary that he can't get out of bed for any length of time. If you and/or your child's doctor think that he isn't competent enough to tolerate going to school at all, you should secede to the choice and be totally confident about the decision that you have made. If either you or your physician may feel that your child is able to attend school part time for a while and think that this selection is a workable solution for your child as well as the school's administration, you may be sadly mistaken. It will take a lot of work and coordination on both of your parts to have this situation benefit everyone involved. You will detect that your intuition or knowledge of your son's depth of illness doesn't really account for much when dealing with the decision of attendance in school. Most states by law require a child to attend school or to receive schooling of some type, so if you don't cooperatively follow these guidelines, you could put yourself in the position of being prosecuted for neglecting your child's educational requirements even though you have an adequate reason for keeping your son home from school and even have his doctor's permission to do so. You will have to find an alternative to his attendance in the classroom since he is too ill to even make it to the school building itself, let alone to a class. This issue of finding an option to suffice the law plus your child's current set of circumstances will create an ongoing battle between the school's administration and you. In the past, your child could have been previously absent from school if he was dealing with a childhood illness or cold. The entire process was very simple. You took him to a doctor to be examined and then got a doctor's note to excuse your child from school or you wrote the note to the school yourself after the physician told you that your son has to stay at home to recover. The note was brought to the school and your child's absence was accepted and excused until he returned to classes. This scenario was uncomplicated and both you and the school's administration understood the rules and regulations in how to deal with this situation. There was a complete comprehension of the process from both perspectives of having your son out of school sick. Now that your child suffers with this disease, the actions are totally different. If you are fortunate enough to have a physician who is totally aware of your son's plight, he will more than likely coordinate with you to confront the school's administration in aiding your child's temporary transition out of the school system. If you aren't as fortunate, this set of circumstances is an uphill battle for you and your child. The school's administration will require some sort of documentation to validate that your son has this specific illness. Most educational institutions aren't even aware of what CFIDS is, so even if you are providing corroboration, there is no guarantee that the administration will understand it or take it seriously. You may be expected to provide further information or data about this syndrome to extend your validation to the school that he is truly chronically ill.
The initial step in dealing with this situation is once you are positive that your child won't be attending school because of total bed restriction or even if she is able to go to school part time, you should set up a meeting with the school principal. As the authoritative representative for the school, she needs to be made aware and kept apprised of your child's situation. You want to be sure to receive some kind of acknowledgment from the principal that you are making an attempt to notify her that you are not intentionally ignoring your child's educational needs. The principal could then suggest that you have a PET (pupil evaluation team) meeting to discuss your daughter's case in detail with himself or herself, a special education teacher, one or two of your child's classroom teachers, his or her physician, a psychiatrist or psychologist, and possibly the superintendent in attendance. This meeting will clarify some of the restrictions and guidelines that the school has to follow by law in providing your daughter an education. There may be talk of testing your child to see how much mental and psychological dysfunction is now present now she is sick. Try not to be too touchy about hearing this supposition. She does need to be evaluated to distinguish if there are any abnormalities in comprehension so that there are no inhibitions to your child learning efficiently. It is common for a parent to be a little overwhelmed and intimidated by this entire process. Don't let the subconscious fears you may have had in your past experiences with teachers and their authority color or daunt your attitude in dealing with this conference. You should have an assertive, aggressive stance in sustaining your daughter's education. She does have a right to receive this education even though she is sick and you are her representative in acquiring this opportunity at this meeting. You will have the chance to listen to everyone's input about what they feel would be a viable alternative to your daughter attending classes on a regular basis. Then, it will be your turn to speak openly and honestly about your child's wishes for her education. You are the mouth piece for the expression of your daughter's desire to learn and she will be counting on you to stand up for her rights to an education. It may be the consensus of the school's administrators that your daughter should attempt to attend school even though you know that she isn't capable of such a feat. It is up to you to try to convince the panel of how incapacitated that your daughter really is. This task can cause you to become a little emotional and maybe a bit too aggressive out of protection for your child's weakened condition. Keep in mind that these administrators don't know what is directly happening with your child because they don't live with you and they don't actually see on a daily basis how much this illness has destroyed your child's life. It is important for everyone involved to be concerned with your daughter's welfare first and foremost. All in the meeting should come to some kind of conclusive ongoing plan in how to cope with addressing an education for your child.
Another conference may be in order and the date should be set at the conclusion of this meeting and you should be made totally aware of what the agenda of the next discussion is. During the time that you have from this meeting to the next, there may be a question on if your child should be attending school in the interim. Be sure to bring up this issue before the conference is convened and be sure to elucidate why your son will not be in school. If you are fortunate and everyone in attendance agrees that other educational alternatives are necessary then the special education teacher will probably be the person who will direct the process from this point forward. You shouldn't be shocked that your son will be receiving services from the special education department. Attempt to forego labels or preconceived ideas of what you may have considered a child to be who requires special education. A child with special needs is an individual who requires some adaptations in his learning processes or procedures to be able to receive an education. Your son is now one of these types of people. You will be considered the most valuable link that your child and the special education teachers will have in successfully providing and executing the services that he may need. You should have a meeting with the special education teacher who is involved with your child's case. It will provide a forum for the two of you to get to know each other a bit and to discuss specific demands that your son may need. Your discussion should be concise and to the point so not to waste any time for either or you. He should provide some format to what the procedure will be that the three of you-yourself, your child, and the teacher-can coordinate and make workable. It is important for you to be very objective and honest in talking with the special education teacher about your child's abilities and expectations. You should also bring up any hesitations that you may have about his learning incapacities. This discussion would be an opportune time to express any personal anxieties about what your role may be in providing your child a workable solution to an alternate educational experience. There could possibly be a suggestion that a tutor could come to your home and work one on one with your child while he is house bound. The school system will pay for the tutor under a mandated and funded program run by the federal government. It may be a viable solution for your child to have someone come to the home to teach him. You may consider a foreign person coming to your home as a sort of invasive alternative to the problem of educating your child. However, this option may be the most beneficial for your son. He can receive proper tutelage. Your child will also have the sensation that he is still actively involved in going to school except that the teacher comes to him instead of it being the other way around. Be sure to assert any concerns that you may have about the tutor to the special education teacher at this time during your talk, so that there will not be any future misunderstandings about the tutor's role in this entire proposition. The tutor and the special education teacher would meet, ahead of sending him to your home, to cement a planned curriculum for your child. He would be responsible to coordinate teaching materials and homework with the special education teacher. The three of you would set up a pre-designated time schedule so that everyone involved would be alerted as to when the tutor was coming and what would be expected from your son when he was at your home teaching your child. When you are asked which times are best for your son, try to keep in mind the time of day when he is more rested and has a clearer thought pattern. For some, the ideal time is in the morning and for others, afternoons are better. If you aren't sure, you may need to pay more detailed attention to your child's body clock for a few days to see if and when he is the most attentive and alert. The most beneficial thing that you can do to help aid the special education teacher and the tutor is communicate on a regular basis with the both of them.
You should take advantage of the time that the tutor is with your child by busying yourself with other tasks. How about tackling the household chores that won't interfere with their lessons? You could also go outside and do some gardening or take a short walk. While the tutor is with your daughter, this time could be considered your "time out" and you could rest and relax while they are busy. The tutor will probably request that you don't disturb your child or her when they are having a session. She requires your child's undivided attention when they are having a class. It is common for your daughter to be very distractible while suffering with chronic fatigue syndrome. You can understand that if you are hovering about the room listening to their session out of curiosity you can be the reason for your child not focusing on her lessons. This action would undermine the goals that you actually want your daughter to accomplish. If you wish, you could discuss your daughter's lessons with the tutor after the class is finished. She may wish for you to help your child with her homework. You can and should encourage your daughter to do work that the tutor leaves for her even though she doesn't seem interested in doing homework because of her fatigued state. It may seem ridiculous to have her try to get some work done but this type of therapy helps your child to focus on a task to improve concentration skills, gives her something different to do, and boosts self-esteem for doing a job, even if the assignment is half finished or incorrect. Your child will sense that she did accomplish something substantial when the rest of her day seems to be wasted on sleeping or resting. You may observe that she may be using too much of her valuable energy from resting and sleeping on doing the assignments. You can monitor if the homework tasks seem to take too much out of your daughter and speak with her tutor about cutting back on some of the work. Coordination and cooperation are imperative to the commitment of having your child's educational needs satisfied.
If your child can attend school on a part-time basis, the special education teacher will be the person who will coordinate your son's class work with his teacher's assignments. He may have to attend some classes in the special education classrooms. This situation could be difficult for your son since most children consider special education as strictly for sufferers of Down's syndrome, mental retardation, emotional disabilities, etc. This attitude stems from society's interpretation of what it means to have special educational needs. Furthermore, your son may be ridiculed and made fun of by his classmates for having to go to the "special education room" for classes. You can't help make your child feel any more at ease about this situation except for listening to his thoughts and feelings and trying to make your son understand that this situation is necessary for a temporary time period to supplement his regular classes. Emphasize the fact that if he didn't have the special education department involved, how would your son attend school at all? You could suggest that if his classmates are making fun of him, it is out of ignorance to this ailment and to what this disease is doing to him. Ignorance breeds apprehension and fear. They are probably more afraid of your child, not out of being in the special education classroom, but because they could catch what your son has and end up going through the same situation. Over time, your child may discover that he is having a harder time trying to concentrate in classes that he does attend, so it is critical that he notifies the special education teacher when this starts to happen. He may have to spend more and more time in the special education classes instead of his regular classes and could possibly be forced into having to be home schooled for a while.
Another alternative that goes hand in hand with learning in the special education classrooms for a part-time student is to attend school only for a pre-specified time frame. The school's administration would have to approve the agreement that the special education department sets up with your daughter to attend classes in the mornings or just afternoons. Obviously this schedule would have to accommodate your child's requirements to rest as well as satisfy the school's academic policies. There would have to be some sort of mean proportion involved to make everyone happy. If your child can attend school on a part-time basis, you may detect that she is having problems with communicating with teachers about their expectations of her performance in the class room. The teachers are treating your daughter as if she is not sick at all and can't understand the mental incapacities and complexities of chronic fatigue immune dysfunction syndrome and how they are adversely affecting your child. She may even be considered the butt of some teacher's jokes or even picked out in class to represent some sort of lesson. The teachers could even pull your daughter aside and state some inconsiderate comments that aver how she may not see that your child as really being sick. These same teachers could even approach the principal or special education teacher and confide that she thinks that your daughter is faking her illness. You and your child can prevent or diffuse any misunderstandings or opinions by approaching each and every teacher on a one on one basis or having a group meeting about your daughter. You may find that asking for a meeting with all teachers involved plus asking a special education teacher to attend will add a sense of authority and respect to answering any questions that any or all of the teachers may have about CFS. They may tend to believe her more than you because of her position in the school system and the teachers know and respect this person for who she is as an individual that they work with on a regular basis. You should discuss what this disease is and how it is affecting your child. There could be mention of your daughter's adaptation to this sickness and how she is not the same individual that used to be in class with these teachers. The previous expectations that the teachers may have had for your child will have to be altered and decreased to fit into the new life style that your daughter now has to live.
Subject matter may also be an issue that has to be addressed. Your child may have loved science in the past, but can't comprehend the complexities of it now, so he has lost interest in the subject. There are many mental dysfunctions that will occur along his journey with this illness and these symptoms could come and go with no notice. Your son will probably be very aware of how his interests have changed since he has been sick. Your child will get very frustrated and agitated over not being able to seek knowledge within previously comfortable subject matter. You can help with this situation by encouraging him to consider new areas of study that are directly or indirectly connected with his previous interests. If he liked science, suggest studying about health and disease. This subject is something that he is directly connected with at this point in time. He could learn about antibodies and what makes the immune system in the body work. This initial contact could lead him into wanting to know about genetics, viruses, or a detailed explanation of why an immune dysfunction happens.
There are a number of ways that you can help your child by inspiring interests in new areas of study that just takes a little imagination. How about some library books to read on the subject or a video to watch? You could try to find some audio tapes that she could listen to and then respond to what has been learned by creatively painting or sculpting from her bed or couch on a bed tray covered with a plastic sheet. If you find yourself perplexed on what to do, contact the appropriate teacher at your child's school who teaches the subject and she can offer suggestions to you on what to try for alternatives to her favorite subjects. She may even offer some of the school's materials on this subject to you so that you can borrow and return them at a later date. The teacher may be so intrigued by your daughter's dilemma that he or she may offer to create some kind of subject matter on her own time for you and your child to utilize. It will take some effort to find the correct path to take but eventually you will become more in tuned to your daughter's interests.
As you can already tell, you will have to take a very active role in your child's adjusted requirements. It will be very hard since you have to work and don't really have a lot of spare time to be running around to meetings at school and having doctor's appointments. However, you are the only one that your child can depend and rely on for help. Your son's well being is one of the most important things in your life and with all good intentions, you should want to do everything that you can to aid your child. It is difficult to get time off of work to attend a doctor's visit or a school meeting but it is not impossible. If you see your child as a priority in your life, you will find a way to deal with this situation one way or another. You may consider that if you have to attend every meeting and/or appointment by yourself, you will surely get fired for taking too much time off of work. Your co-workers and boss will only be so understanding and empathetic. Your spouse could alternate attending commitments with you so that neither one of you loses too much time at work. One could apprise the other of what happened at the meeting. It may be that your mate considers the child rearing in your family as your responsibility however, he or she is your son's parent too. Your cohort is equally responsible for your child's welfare. This alternative offers equal responsibility in coping with your child's demands and requirements. Your child's activity level is minimal and lethargic now he is sick. Your son is fatigued and listless with no interest in doing anything. He can slip into a melancholy state of being if there is no stimuli for him to respond to on a regular basis. The mind is bored with nothing to stimulate it and the body is tired and weak with no regular exercise. You can help by providing some sort of daily activity that he can do and be successful at trying to accomplish. Watching television or playing video games will not provide the necessary mental exercise that your son requires. These activities provide a temporary escape from reality but do nothing to fill up your child's need to stimulate his imagination. While your son is bedridden, you will need to concentrate on activities that can be done from a laying down to sitting position for short amounts of time that don't require much effort. How about a short game of cards to get the mind to focus and also to exercise his hand and eye coordination? You could try a board game but it would have to be one that doesn't require a lot of concentration or time. Dig out some of your son's old childhood games and play a few. What about painting or drawing? If your child is really fatigued, art can be a good outlet for him. There is no specific amount of time that he has to spend on creating any type of project. You may detect that even though your son hasn't painted or drawn since he was little, it is the perfect activity to do now he is in bed. A picture can be started and left for as long as he chooses to ignore it, and then your child can pick up right where he left off.
Little ones like to blow bubbles! How about making some homemade bubbles and wands and have a contest to see who can blow the biggest bubbles? Or you could consider blowing sugarless bubble gum bubbles (if your child is sitting up in bed) to see who's bubble would break first. Blocks, dolls, and trucks are some of the items that she could play with in bed or on the couch. Playing with clay, if your child's hands don't hurt too much from fibromyalgia, is good for hand coordination and exercising the imagination. You could suggest a subject to sculpt, such as the family cat, bunny, or dog, and have him or her make a statue of it. Your child may want to create a magnet or decorative statue to put in her room. She may want to make a bust of you to give to you as a present. The best suggestions are to think of ideas that your parent may have done with you when you were a child sick in bed. A local craft store will contain hundreds of ideas on small craft items that you could make together or that your child could do alone if you can't think of anything that would be appropriate for your child's interests. Keep in mind that she may not be able to tolerate some odors and textures of craft materials.
One of the cheapest and most appropriate ideas is for you to read to your son no matter what his or her age. Climb into bed and cuddle him while reading. If he is too big, place a chair by the bed and read a story that will have your son using his imagination while he listens to you read the story. The intimacy of having your parent read to you is something that no child ever forgets. It is a sign of love from parent to child. What a gift when he is sick! You could act out a play together with the two of you reading various parts in different funny voices. How about learning a foreign language together from audio tapes that you borrowed from your local library if you are dealing with an older child? You could rearrange photo albums together and discuss the relatives which could lead to keeping a journal of all the things that are happening in your family and creates a family heirloom for future generations to treasure. There are so many activities that you can do with your son even though he is ill. It just requires that you use your imagination a bit.
As your child's energy level minimally increases and she is more awake than asleep, you should reconsider the activities that your daughter is now doing to see if she could attempt to do something that requires a little more concentration, memory, and comprehension. It may be appropriate to rethink some of the activities to evaluate if they are too "easy" or "boring" now that your child is able to focus a little longer and understand more of what she is hearing and seeing. You could introduce things to do that are a little more arduous. Your daughter may be able to offer suggestions to what she wants or prefers to do from her bed or couch. When you hear these ideas, it is a good sign that your child is getting stronger and more interested in life. You should continue to sustain the food for thought that you have been providing for your child on a consistent basis. She will still require your aid in retracing her steps back to total mental awareness.
However, physical activity is just as important as mental. Your son may be incapacitated and too weak to get out of bed and his muscle tone is getting worse and worse. He may have been extremely active and now is very sedentary. His body needs to have some kind of stimulation to keep the blood flowing properly. It is detrimental to have your child exercise while sick with chronic fatigue syndrome. When he uses all of his energy to exercise, there is a massive draining process that happens in his body and your child regresses into total exhaustion and can't move at all. While he is bedridden and seems to sleep more than be awake, you could offer to give him muscle stimulation by massaging the body. The massages can provide extra circulation and relief from muscle pain and discomfort. You should be sure to get him out of bed at least once a day even if just to sit on the edge of the bed or to stand beside it. It is important to keep his body functioning with some type of stimulation even while ill. Doing bent leg lifts, squats, and lifting light hand weights can be attempted if your child feels up to it so long as he only does a few repetitions at a time and doesn't overdo. It will be difficult to gauge what is too much from your perspective since your child will be trying to prove that he can still do what he used to do for exercise, pre-CFIDS. Your child will obviously be pushing himself to make the point that there is nothing that he can't handle no matter how sick he may be. You may find yourself reminding him that pushing his or her body will only result in a relapse and that isn't what he would want just to make a point. As your son begins to gain some strength and energy, you can introduce activities into his daily routine that incorporate an increase in extending his physical prowess. A walk around the house or a trip up and down the staircase could be all that your child can handle now that he is out of bed and desiring to move around a bit. You should monitor his activity level and remind your son that it is normal to feel weak and clumsy when he is trying to get back on his feet. Your son has been stuck in bed or on the couch for so long that his muscle tone is drastically reduced or non-existent. He shouldn't feel badly if a walk around the room is all he can muster up at this point in time.
It is important to try to get your child to sit outside and breathe in some fresh air and absorb some sunshine. Natural sunshine contains vitamin K which can only be obtained through her body directly absorbing the sun's rays. Some sufferers have a photophobic reaction to sunlight that requires them to avoid any contact with direct sunshine. If this is the case with your child, you can set a chair under a tree or in the shade so that she can at least get some fresh air into his or her lungs. A porch or deck with some kind of roof to block out the sun may be the only place that your son or daughter can comfortably sit for any length of time. Your child will be able to tell by her own intuition when she is ready to go outdoors. Don't force your daughter to go outside if she isn't ready to attempt to battle the exterior elements. It will take some extra energy and inner strength to get outside and have her body adapt to the various sensations that come from being outdoors. As time passes and your child gains some more strength, she may wish to take a short stroll outside around the home. Someone should accompany your daughter as she may not have adequate tolerance to accommodate to being outside for the entire walk. There should be a schedule of minimal progression in the increase of physical activity that she may have over time. A stroll around the house could lead to a promenade up and down the street which could progress to a walk around the block. These procedures may take a few weeks to a few months to a few years to accomplish but she will eventually achieve the goal of walking. Other strenuous activities such as contact sports, biking, or playing tennis will have to be put on hold for the entire duration of chronic fatigue immune dysfunction syndrome. Vigorous energetic activities such as these can take too much energy to do and your child doesn't have the capacity to handle that kind of strain on her body. An admonition is to take baby steps with your child in attempting to perform any kind of physical activities. For example, if she has a strong desire to try swimming, you could take her to the pool and she could just sit in it. The next step would be to have her hold onto the sides of the pool and stretch out her arms and legs in the water. You could provide a float for her to sit or lay on that would provide some sort of buoyancy as she waded into deeper water when she felt stronger and more confident. Eventually, your daughter could attempt to swim when she felt strong enough to do so but it would have to be very short distances.
It will appear that your child is on his way to recovering from this sickness once he can go outside but that isn't necessarily true. The syndrome causes the body to have fluctuations of "good" days and "bad" days. He may have the initiative and desire to go outside one day and be violently sick the next if he steps out of the house. Your expectation level should be flexible where your son's performance is concerned. All of the activities that your child simply took for granted on a daily basis now have become almost impossible feats to accomplish. Appreciate the smallest accomplishments that he can do and praise him for making an effort to try to do them even if he isn't successful at accomplishing his goal. There should be some kind of acknowledgment from you which can act as motivation to encourage your child to try again even if his first attempt at doing a task is unsuccessful. Your concern for your son's safety will become a dominant issue now that he is ill with chronic fatigue syndrome. You could have anxieties and apprehensions about not being able to protect your child from catching this disease. You feel that you could have done something to prevent the onset even though you know that supposition isn't true. He is fragile, helpless, and dependent being ill. You are a responsible parent who wants to protect his child from any unnecessary harm or detriment. But, what can you do to prevent any further loss in your son's life as a result of coping with this sickness? You can accept that this viral onslaught will end someday in his future. However, until that day comes, you are the person that your child will rely on to keep him safe from any insignificant inflictions. Your son can regulate any internal, emotional, and mental restrictions in making himself sicker. However, your child doesn't have the capability to check every single contact that he makes during a day to be sure that he or she is safe. There is not enough energy in his body to do this since every ounce of energy is used just to survive on a daily basis. Your child will require your help in making sure that his living area is safe and not pernicious to his afflicted health. He will need for you to survey his living space for any hidden dangers that could cause him any undue injury. You will be able to safe proof your home now just as you did when your son was a baby with some minor adjustments. Household chemicals are still poisons, except now instead of worrying if he will swallow them, it is if he will inhale their fumes. Turning handles on pots and pans is necessary so he doesn't get burned if dizziness overtakes him in the kitchen. How about shutting cupboard and closet doors? Your son is very clumsy when out of bed for any length of time and could hit his head by accident. You could keep all stairs clear of any unnecessary debris so that he won't fall down stairs as a result of tripping over shoes or other objects. Keeping the bathroom sink, tub and/or shower area clear of breakable items such as glasses, bottles, razors, etc. will prevent any accidental cuts if your child should lose his grip on an item.. You can prevent many of these types of injuries by considering all common sense ideas in safe proofing your home.
Another problem could be that your child has a lot of dizziness on a regular basis which means that she has to have help to perform personal hygiene issues. It is hard for you to be there whenever she has to use the facilities because you could be in the middle of doing something else and may not have a whole lot of time to help out and wait around for her to finish. Furthermore, you sometimes feel like you are invading her privacy while she is indisposed in being in the same room. You may consider installing bars in the tub or on the bathroom walls near the toilet to give your child something to hold onto or lean on when she is in the room so that you can wait outside for her to finish. This alternative also allows a bit of personal privacy and self-sufficiency for your daughter because she can do what needs to be done without help except to enter and leave the bathroom.
He may have problems with going up and down stairs especially if he is confined to a downstairs bedroom and the bathroom is upstairs or vice versa. It may be an intense struggle to get him upstairs because you literally end up having to carry or support him all the way up to the second floor. You may consider other alternatives that would be easier. How about temporarily installing a riding seat to get him up and down without having to constantly lifting him? You may consider installing temporary bathroom facilities downstairs so that climbing upstairs isn't necessary.
There are many simple environmental issues that you will find yourself questioning and addressing around your home. Allergic reactions can be triggered by insignificant smells or odors that may have never been a problem before or were non-offensive in the past. She may have been able to tolerate you or your spouse's smoking in the home. Now the smoke causes your child to become instantaneously nauseous, dizzy, and light headed. An alternate resolution for all, outside of quitting, is to smoke outdoors and to make your home a smoke free environment. It is healthier for all of your household members and you will have some minuscule private time when you are outside smoking. It will be an inconvenience to go outdoors of your own home to smoke, but isn't it worth your child's health to do so? Is it fair for her to be devastatingly ill over something that she can't avoid if you are smoking in the home on a regular basis? You control this situation.
Your son may constantly smell a moldy odor in his bedroom that was never noticed before. Your house may be meticulously clean and you could feel that he is indirectly insulting your cleaning abilities with saying such a comment. You search around the room and detect a minute amount of mold growing around the window. You can't believe that he could honestly be bothered by such a small amount of mildew. Yet, your child can't seem to breathe comfortably and is constantly complaining. What should you do? It is best to clean the area with a non-smelling product so you won't contribute to the already impertinent smell in the room. Natural cleaning products seem to work best for all sufferers as they have no odors or chemicals to cause any allergic reactions.
Your child could have a reaction to the feather pillow that has been slept on for years. You will have to replace the pillow with one that is non- irritating for her. While you are considering replacing the pillow, it may be beneficial to substitute all of her bedding materials at the same time. The mattress, sheets, pillowcases, and blankets could contain some type of batting or material that causes a negative reaction in your child's respiratory tract. She could also have a skin irritation erupt from a sensitivity reaction to the bedding.
Potpourri is a common fragrance used to scent the rooms of your home. It may be devastating to your child's nasal passages and sore throat. He could end up being stuffy, dizzy, and complaining of constant head and chest pain. How about trying a natural deodorizer, like hanging up branches of eucalyptus, instead? Some types of flowers may have a less intense odor that your child can tolerate. Experimentation is the key to discovering what will and won't be permitted. A natural foods market may have some alternatives for scenting your home that are less invasive for your child.
The lighting in the living room or den may be too brilliant for your child to tolerate. She complains of violent, intense headaches and spots in front of her eyes when in the room. You could try replacing the light bulbs with a lower wattage one to see if it would make a difference. If not, you could try to replace the bulbs with incandescent or tinted bulbs to see if a softer light would help. You may detect that your daughter favors the lights being out more than on to make that room is comfortable for her to visit. If it is at all possible, you should concede to her wishes. Her body instinctively is protecting itself by wanting to avoid harsh lighting. Besides, a small benefit to having the lights out means that you can save on your electric bill.
House plants may be pleasant to look at but all have a discernible odor to them. Your child could find, in walking by one, that it makes him or her very light headed and dizzy. Obviously, you should move the plant so that it is not in your son's way while he is in the area. Yet, you can't follow your child around every room in the house playing "plant tag". A viable solution to this situation would be that you may have to keep all plants outside of the home and enjoy them on your stoop, porch, deck, or patio. You should be aware that some plant odors can come into your child's room via an open window. Be abreast on what types of plants are near his bedroom window and replant or remove any that seem to be causing any problems. You could discover that disposing of your plant life altogether is the solitary resolution to keeping your child breathing freely.
The noise level in the living room in the evenings could seem like an enormous melee to your child's sensitive ears. You know that you can't expect the entire household to quiet down just because one of its members is ill. However, you can keep the hullabaloo to a minimum. The rest of the family could be considerate to her situation and agree to not playing the stereo, television, computer, or video games loud. They should want to encourage her participation in family based activities and can by listening and showing with their actions how much they want her in the room.
The most devastating discovery for the entire family could be that your child is now allergic to your family pet. You will have to decide if the intensity of his sensitivities merit the pet going to live at a relative's or friend's house for a while. The solutions could be to simply limit the time that he spends with the pet and that your child must wash immediately after handling or being near the animal. You should keep your pet as clean as possible with regular baths. Remember that some allergic reactions can come and go from one day to the next so it is imperative that you don't automatically assume that you can't keep your family pet and have to get rid of him. Try to make arrangements with another person to temporarily care for your pet instead of giving him away if there is a severe problem since this reaction could disappear the next day.
Cooking smells can also nauseate your daughter. What once smelled appealing now reeks of distaste. You can aid with this dilemma by keeping her out of the kitchen while cooking is going on or installing a ceiling fan to help aerate and dissipate the odors quicker. You should comprehend that her appetite can be affected by the degree of stomach upset that she is contending with smelling this food. It is important for your daughter to keep up her appetite while fighting CFS because she needs the strength and energy that his intake of food provides so eliminating these types of odors is necessary.
If you take the time to consider all of the possible environmental intrusions that your child now has to contend with being ill with chronic fatigue immune dysfunction syndrome, you will find that you have that many issues to find solutions to if you want to make your home safe and livable for your child. These situations are under your control and you can find agreeable alternatives to eliminating them for the most part. Your immediate family will the most important mainstay in your sick son's duration with this ailment. He has grown up in a household where his or her parent or parents, brothers, and sisters are vital to his growth as an individual and person. The unit has always affirmed and upheld the conviction that no matter what happens to one person in the house, everyone else will be there to lend support and love to the sick one. You have experienced and acknowledged that this commitment to your child in need is now your family's reality. Some family members may be accepting while others are in denial about your son's bout with this syndrome. It is a normal reaction for anyone to have disbelief at the idea of a child being chronically ill. Children are perceived as growing, exploring, and healthy beings rarely sick with anything serious. Usually the only illnesses that a child comes into contact with are the normal childhood sicknesses which don't usually take a long time to recover from for most children. Some people even think that if a child is diagnosed as being chronically ill, then he was born with the disease and it is just beginning to surface now. There almost appears to be some type of mental blockage in a person's mind to try and comprehend why a son, daughter, sister, or brother could truly be this afflicted. However, your child is very ill and requires some love, support, and understanding from everyone in your household. You should gain a general consensus from the entire family on where everyone stands in regards to his beliefs about your sick child. If his or her brother or sister doesn't think he is sick, that is their opinion and it should be acknowledged for what it is. A brother, sister, or sometimes even a spouse, could be jealous of all of the extra attention that the diseased child is getting from you. Yet, if you ask him if the sick one is feigning to be ill, you probably would get a negative response. All a family member has to do is live in the same household to comprehend that the ailing child is not faking or looking for attention. There is a definite recognition that he is very melancholy and that there is no way that he could or would disguise any healthy behaviors with being so ill. The entire household can help your child by being empathetic and understanding to his plight. It may mean a family meeting is in order to discuss what this disease is and how it is affecting your child. It is your family's choice if they want to discuss the sick member with or without him in the room. No matter what is decided, be sure to let the ill child know ahead of time that he will be talked about so that he doesn't feel persecuted or neglected in being omitted from the roundtable. Everyone's input is important to grasping how this situation affects the entire household. You should talk about your child's physical afflictions and discuss how his activity level has literally been put on hold. Your ill child can no longer do many things that the family has seen him do in the past. They unconsciously may expect that he can still perform daily functions but are very frustrated that your child isn't doing things now to the degree that he achieved previous. Your family could discuss how it feels to have your son this ill and how they think he feels about being sick. It is important for everyone to have a clearer comprehension of what is and has happened to your sick one. Everyone needs to see that this illness has already affected them just by expressing how they feel and what they perceive his situation to be. You will hear and sense that there is genuine concern for his sibling and a desire to know when he will get better. The more significant topic you should be heading for in the talk is how the entire household will have to change its attitude about your sick child. Everyone should contribute to his well being by cooperating and loving the member who is bedridden.
These changes in attitudes are just the first step to helping because there will be many other alterations that will have to follow. At this point in the discussion, it may be a good idea to list what the family sees as changes that have to occur to be able to help your daughter. After this list is formulated, you will begin to understand where there are important topics that have been not thought of yet or ignored. As a parent, it is your responsibility to make everyone aware of how many alterations in their thinking have to be made and how difficult this will be on the entire household. You can suggest that everyone take a minute to consider each level of changes that everyone has to help make to be able to contribute to the well being of your sick child. One of these changes is your daughter's physical abilities. Everyone may have been used to seeing his or her contribute to family times by participating in all family activities. It may have been expected in your household that everyone get together to have special moments as an entire unit. All of you know that she isn't able to do very much at all any more so a better understanding of her situation has already developed without anyone really focusing on anything. Your ill child requires family connections even more now that she is sick so the idea of neglecting her from special times shouldn't even be considered. It may be agreeable to everyone that your sick one is able to select which events that she can participate in or want to do. If someone requests her presence and she refuses because of a sickness related excuse, than that refusal is permissible. Common sense should be everyone's measure in sizing up an activity and your sick child's participation in it. Everybody should sense if your daughter is resting on the couch and the rest of the family decides to play a basketball game in the yard and goes out to eat ice cream sundaes afterwards, then the probability of her participation in this event is impossible. Yet, your daughter is able to get up out of bed, walk around a bit, and seems to enjoy her sibling's company most of the time but still refuses to eat at the table with everyone else. She is getting used to eating meals in bed alone which means getting your sole attention at dinner time since you are her only dinner companion. Then, you can base a conclusion on all of the obvious facts and request her presence at the table with everyone else. Sitting at the table with everyone else doesn't require that much effort since it is for a short period of time. It is understandable that she does have limited energy and she can't control the level of how much pep she may have. Nevertheless, she does have to cooperate in some type of activity no matter how minimal to foster some kind of merit in getting out of bed every day and having some type of contact with his or her siblings. Your child's activity level is diminished but not gone. Even if she is bedridden and sleeping most of the time, the requirement to have some kind of mental and physical activity is essential. Your child's body, mind, and soul all need some motivation to stay alive and focused to contribute to her well being. You can't expect your sick one to get better if she is concentrating on the negativity of being chronically ill or the family keeps inquiring as to when she will recover and be the same old relative that they remember.
Life has become more complicated and frustrating for him and the rest of the family in having to cope and live within hisr limitations. Your child has not become some type of foreigner-he is still the same person who the family loves and cares about. Your sick son just has many more restrictions to what can be accomplished and completed in a satisfactory way based on his standards. Nevertheless, life does go on and your child should be sensing that he is some part of that forward motion within the household. He is still capable of doing some movement no matter how sick. If your son is shut-in and stays in bed the majority of the time, he can sit up and stand up (maybe with someone's help) to help his body keep functioning. There are many types of minimal exercises that can be performed from a lying down to sitting position in bed or the couch. Mental stimulation can come in many forms such as art projects, audio oriented materials, visual arousals such as puzzles and videos, etc. Your ailing son will require a positive, happy, and clean environment to help keep his spirits up. He can contribute to sustaining cheerful surroundings by being incontestable in getting well and being as strong as he can.
There will be times when your daughter may have a difficult time in being positive within her circumstances. Still, she should maintain a level of self-encouragement and self-motivation that requires no dependence on others and is rooted deep within her being. She alone must find a way to live with this syndrome and all of its afflictions. No one, not even his or her family, can take away the burden of suffering with this sickness. The acceptance will come in time and she has to discover a way to keep positive mentally and spiritually positive and as healthy as possible. As time passes, your child will become stronger. However, it will be at a snail's pace. Her activity level will increase in small increments. You will notice that your daughter will begin to have a renewed interest in life and everything that is happening around her as she returns to recovery. Yet, she will be hesitant about approaching movements that used to be easy and taken for granted pre-CFIDS. Since so much time has gone by and your child has been so inactive, her self-confidence has been shattered. There is an internal feeling that if she can't do the activity any longer why even try to do it. If the activity is attempted and she fails, there could be a feeling that she may never be able to do this task ever again. However, she should be encouraged to try if her hesitations tend to inhibit her participation in an event that she does feel and think can be done but may be scared and fearful of failing. You will detect that as she is getting stronger and attempts to perform more and more pursuits, your daughter will gain more self-respect and self-esteem which will in turn support her limited participation in life. The family can be a wonderful support system for your sick child if everyone can cooperate and carry the belief that she will get well with time. It will be exceptionally frustrating and irritating to live with this sick individual, however she is a member of the family who is suffering on a daily basis. Your afflicted daughter requires love and understanding from everyone in the household not anger and alienation. The most important thing a family member can do for another is to love her unconditionally-especially in these circumstances. Your child will be emotionally and mentally best equipped to overcome this syndrome if the family can commit to her with no conditions or expectations. Life with this person should be cherished and everyone in the home should feel very fortunate in having this sibling around to love. The rule of thumb in considering the family's participation with an activity is that your ailing daughter can still do things with the family however the activity may have to be altered to accommodate her needs. There are many things that she can do if the activity rate for her is kept to a bare minimum. It will just take some careful planning and thinking to figure out what she is currently capable of performing and requesting that the rest of the family cooperate with the adjusted plans. There could be some resentment from her siblings in having to constantly conform their interests and activities to fit the sick sister's activity level. These thoughts and feelings are a natural reaction and they shouldn't be chastised for thinking and feeling this way. It is hard for them to understand that life has changed and the method the family has done things in the past doesn't work any longer. You can explain your sick child's perspective on not being able to do the things that she used to do in hopes that the other members of the family will empathize and rethink their viewpoints.
Another alternative may be to set aside special time when the family (without your sick child) can go and do activities that they want to do most of the time but can't because they feel guilty asking or suggesting the activity knowing that their sibling won't participate. You could have a sitter, another relative, or friend come by to watch your ill son while you are out with the rest of the family. It is important for the entire family to understand that they shouldn't feel awful about having fun while their sick brother is home in bed sick. Your ill one knows and understands that everyone else's life has to go on even though his life feels like it is on hold. He will probably encourage you to go on without him. It is a normal reaction for anyone who is unhealthy to be hesitant about being positive about other people's lives going on around him when there is nothing absolute in his immediate future for him to look forward to. The entire family's alternative to avoiding the guilt everyone feels in going without him is for all to hesitantly change their minds and stay home to accommodate your ailing child. This reaction is not the healthiest answer for your sick one and will obviously not make anyone in your household really feel any better. It doesn't make sense for anyone in your home to play the martyr and do something that he isn't really comfortable or happy doing just to alleviate a guilty conscience. His true emotions will surface in the future one way or another. Your sick one may begin to sense that because of his illness, everyone is miserable and unhappy. His attitude will become more and more despondent as one by one the family members begin to demonstrate signs of alienation and anger towards him out of their own frustrations in living with someone who is sick and causing so many changes in their lives. Your diseased child may become very downhearted and dejected and will withdraw from the family more and more. It is not his fault that chronic fatigue syndrome has invaded his body and indirectly he may think this is the family's way for punishing him for it. He could even get so depressed and dejected that solitude is the only way your child feels any solace from his brother's or sister's constant persecutions. The solution to this entire situation is to be totally honest and open with each other about the limits and boundaries that your ill child feels and knows are apparent. The entire household should admire and respect the strength of character it takes for your son to abet everyone to go and participate in the activity without him. You can also set up activities that he can do as an alternative to what the rest of the family is doing. An example could be that at your summer family outing while everyone is playing sports related games and swimming, your sick child could be the person who documents the event with taking photos or video. He could also act as a referee or scorekeeper for the games that others are playing, monitor the food table and refill empty plates, lay on a swim float at the quieter end of the pool, etc. There are many enjoyable tasks that he can do which won't require much effort and can be done from a sitting position. It is vital that your sick one feels just as much a part of the family unit and the shared activity as he did before becoming ill and being included in the fun can contribute to his self-esteem and self-worth to the event and his family. Specific activities will have to be addressed individually as each event has its own set of restrictions and limitations. You need to be honest and communicative with each other so that there are no expectations as to what he can do with the family. Respect your child's requirements for minimal activity that won't disturb his current energy level as it takes so long for him to reach the same level of activity again.
Another issue to contend with is household chores. Your family may not be able to assimilate that your sick daughter appears to be perfectly rested, lies in bed all day, and doesn't have to lift a finger to do any tasks like the rest of them. Resentment surfaces and trouble begins for everyone in the household. You may even observe that one of your other children will feign being sick so that she can get out of doing chores like your CFIDS afflicted one. How do you handle this particular situation? You can definitely understand why they perceive the situation the way they do. Your sick daughter may not have the capability to do chores at the onset of the disease. But, as this individual gains strength, there is no reason why she shouldn't contribute to the household chores. You will have to closely monitor her and give this one tasks that require the least amount of effort. A family meeting to evaluate and justify why she is getting this preferential treatment may be in order so that everyone comprehends the balance of responsibilities until your sick child feels well enough to take on more burden.
Distant family and friends are another group of individuals who has to contend with the issue of chronic fatigue syndrome and how it impacts your family. Don't think that just because these people do not live in your household that they aren't affected by your ailing child! Grandparents, aunts, uncles, cousins, all of the other relatives, neighbors, and friends will offer their opinions and sentiments about your son and his bout with this mysterious illness. Some may have negative feelings while others could be supportive and caring, You may be told by your friends and kin many suppositions and conjectures about what this disease is, where it came from, and how you can help your child get better quicker. There may be lots of criticisms of the treatment that your sick one gets from the family. It is up to you to decipher which people you wish to associate yourself and your family with during this difficult time. Your immediate family doesn't need any excess stresses in coping with their adjusted life style. It is their decision to consort with distant family members and friends who will help and not hinder your household's abilities to aid your afflicted child. You and/or your immediate family may also find yourselves playing the role of educators and mediators. The distant relatives, neighbors, and pals may not be aware of what this disease is so out of ignorance may say or do things that offend you and your family. You should try to make them aware of the limitations that your son now has being ill and how difficult it is to contend and live with this disease affecting one of your own. Give them pamphlets, articles, or books about chronic fatigue syndrome to read and discuss the changes that have occurred in your son since he or she has been sick. Communicate the family's requirement for understanding and empathy in regards to your sick child.
Arguments could erupt over distortions and misunderstandings of your child's inability to ward off this illness and the attention that you and your family shower on her. Your immediate family could be put in a defensive stance because others are too quick to judge what should or should not be done to help your diseased one. You or your immediate family should never be put in the position of defending your stance on how you are coping and living with your sick daughter as well as how she is treated within your home. It is wonderful that they are concerned for your child's welfare. Nevertheless, they can't even imagine how strenuous it is to live with someone who is so ill unless they have experienced the exact situation themselves. A comparison of living with someone who has a totally different disease does not resemble any similarities with a person who copes with this syndrome. You and/or your immediate family should keep in mind that these people are perceiving and comprehending everything they see or hear from a distance. If they had daily contact with your family and your unhealthy child, they would have no problem in understanding why your household reacts and does as they do. If it was hard for your immediate family to apprehend that your daughter was chronically ill, imagine how perplexing it is for this group of individuals. They may have minimal contact with your child as is and now they are expected to understand why she is constantly sick with many varied symptomatic problems. Your household can be empathetic to their ignorance and displays of emotion since they had to experience the same variances in feelings themselves when they initially discovered that your daughter was seriously ill. A little understanding can go a long way in helping everyone who wishes to be involved with your household and its dilemma. Relatives, neighbors, and friends can play an alternative role in your household's scenario of coping with this disease. You and your immediate family can contend with providing immediate relief for your sick one when her demands must be fulfilled. Yet, there are times and occasions where you and your family require some respite and help for yourselves. In these instances, these people can provide some assistance to you, your family, and your ill child. Everyone will want to do something to help your daughter but may not be aware of what her immediate needs are now she is ill. There could even be a fear of being near her because these individuals could think that they could catch whatever viruses that your child has in her body or maybe even carry the viruses to other members in their families. Your immediate reaction to their hesitations should be understanding and empathy. You and your family may have had the same vacillations when you were confronted with providing sustenance for your sick one. Your relatives, neighbors, and friends will need to confront their own fears in their own time. If your family expects instant cooperation, it probably won't be a reality for a while. However, you could have some surprises and they may be able to maintain a cognizance of the situation that you are coping with quicker than you may think. Once they are comfortable with the idea of aiding your ailing daughter and being around her, you can suggest that they start spending some time with your sick one. These individuals may anticipate that your sick child is able to do things and act the same as she did pre-CFS, so you and your family should be clear on explaining what your child's level of activity is and what can be expected from her. The relatives, neighbors, and friends may anticipate the devastation that the syndrome has inflicted on your daughter but discover that once they spend time with her, this predicament is worse than they expected. They will make statements that indicate that this child is not the one they knew and she is a lot sicker than they thought. It is a hard issue to confront and deal with when reality becomes actuality. A child that they know and love is chronically ill with no indication of when she will totally recover. You and/or your immediate family will have to monitor their expectations of what your sick child can do with them. Since neither activity involves much effort or energy to do, they may anticipate that she can go out with them to do some shopping or go to their house for a visit. Their perception of the situation is that your child can do anything so long as it is not something that will tire her out. It may be hard for them to understand but you must explain the complications your loved one now has suffering with chronic fatigue syndrome. It isn't as simple as she going or not being able to do or go someplace. There are so many entanglements with his or her allergic reactions, dizziness, fatigue, etc. that going to either place may be impossible at this point in time. It may hurt their feelings to hear this disclosure and they may consider this type of decision was based on some resentment or criticism that you have towards them as being competent caretakers for your child. You could suggest that they sit for you and your family when you require some help and hiatus from caring for your sick one if they wish to do something to contribute.
Any extension of relief for your child should be a gradual process since your relations, neighbors, and friends will have to get used to caring for your sick child. This situation is not the same as watching him or her when he was healthy. Your ill one doesn't have the capability to do many things that most people take for granted as second nature. He may require some help with personal hygiene issues and may not feel totally comfortable with having a grandparent, neighbor, or family friend helping out. It will take time for your sick son to gain confidence and trust in whoever takes care of him. Your relatives, neighbors, and friends can provide a type of nurturing that you and your family can no longer do since your sick child has absorbed all of the energies that you and your family can oblige. Whoever comes into the home can emit a new sense of verve and vigor to your son that can supply some more of the positive thoughts that he needs to have to get well. Their presence contributes to broadening your child's social horizons and bequests a sense of caring and concern for him. Your son will appreciate the visits and look forward to when they will come again. He will carry on some semblance of normalcy and connectedness since the relatives, neighbors, and friends are coming to your home to specifically be with him and sustaining some kind of a normal routine. They should be encouraged to do the same kind of activities with him that you and your family do, except that each person could have a specific, special personification to do with your child. Grandparents could have the special privilege of being the sole story tellers and book readers for your sick son. Family friends may be the artistic partners and cookie bakers. Your friendly co-workers would be the paper football and video game cohorts. Neighbors could fulfill many agendas from playmates to baby-sitters. Everyone should have some specific role in connection with your ill one. It will make them feel extremely special to share in aiding your sick child. Your son will feel loved and cherished in having so many people who consummate an active part in his life.
Recovery rates, under the best of circumstances are totally uncertain. Some children recover quicker than others with no warning. There are children who are sick one day and wake up healthy the next. There is no predictability in when your daughter will conquer this disease. All you and your family can do is to follow your intuition and do the best that you can for your child. If you question your physician's directions, communicate and detect what it is that you are not comfortable with and try to clarify your ill one's situation. Seek out specific clinics and specialists that are familiar with this affliction. They are out there and you will have to look and search for them. There needs to be hope and positive thoughts from everyone in and outside of the household to promote focused healing for your ill daughter. Remember that she is still the same individual that you all loved before the onset of CFS. All that she wants is to be respected, loved, and cared about just as before she got sick. Patience, love, and sympathy do play a major role in combating this illusive syndrome. You are a family and the priority in this predicament is your child and her welfare. Set aside your own judgments and condemnations about this situation and love your child. You should be very grateful that this viral infestation is not a fatal one. Every time that you or your family members become frustrated in coping with your sick daughter, imagine what life would be like without her in it. Can't you cope with a little inconvenience in your lives right now to help your ill daughter? You, your sick child, and family will discover early into this chronic journey that cooperation, understanding, and empathy are a requisite to coping with this set of circumstances. Successfully hurdling the obstacles that CFS will bring into your relationships will be difficult and try your patience with each other to the limit. The love that you and your family members have will contribute to a successful outcome for your ill daughter. Never doubt the depth of your love for your child. The intensity of this love you have will sustain her throughout this entire ordeal. Have faith in this love and what it can accomplish for you and your afflicted child. A miracle could happen!