Matthew's story

From: Denise, Matthew's mom, East Coast, USA.

At age 11, my son was an excellent student. He attended our local school for science and math classes and chose homeschooling for the rest of his academics. He was also a competitive swimmer who excelled in backstroke and breaststroke. He would glide through the water effortlessly and come in body lengths ahead of the other swimmers.

Two days after his 12th birthday, in January 2005, he and his brother both came down with a respiratory infection. They were put on antibiotics but 3 days later Matthew's sinus infection had progressed to pneumonia. He was having a lot of chest pain and trouble breathing.

Little did we know that this was just the start of his troubles. After treating the pneumonia he had to be treated for bronchitis and then he had to be treated again for the sinus infection as different antibiotics are needed for different sorts of infections. During these weeks he still had chest pain, lots of fatigue, could not get well and could not to school or swim practice.

We were very fortunate that our family physician absolutely believed Matthew when he would explain how badly he felt. Tests were run, more treatments tried, but day after day Matthew was tired. Actually he was more than tired – he could not feel rested no matter how much he slept. He was sensitive to light and sound, he hurt all over, his head ached all the time, his chest always felt as though someone was sitting on it and his brain felt like tightly packed cotton. He had trouble finding the words he wanted to use or used words he did not mean to use.

The school was pretty reasonable about his extended absence. His science teacher sent home Matthew's assignments without any problems. Matthew was very conscientious about doing his school work and keeping up with it although the energy required (physical and mental energy) left him so drained that he would spend the rest of the day quietly sitting or laying down.

The math teacher however, was reluctant to continually send home Matthew's work even though our doctor said in no uncertain terms that Matthew was not well enough to attend school. When she did send work it would be the equivalent of 10 days to 2 weeks worth at a time and Matthew would push himself to learn the material, do the work and get it back to her within 2 days – he did not want to be behind!

I would see Matthew's fellow swimmers when I'd take his brother to swim practice and they would ask about him and ask when he would be coming back to practice. Matthew could not bring himself to even watch practices or meets. It was too hard to see people slacking off or complaining about what there were told to do. It was too hard to watch them not make the most of what they were capable of doing. It was a painful reminder of what he could NOT do.

When some of his strength returned and he felt a bit better, Matthew wanted to get back into swimming. It would have been difficult to return directly to practice in his weakened state so in mid-April the head coach began working with him privately. After just a couple of weeks, Matthew was ready to return to team practices and he soon was back to being the fastest in his group.

The first swim meet of the summer was held at the start of June. Matthew's results were spectacular. It was impossible to tell that he'd spent 3 months ill at home, unable to go to school or to practice. (He had, in fact, finished the school year from home. He tried going back one day and slept 16 hours out of the next 24 and was lost in serious brain fog for days.) While most of the other swimmers struggled in their events, Matthew got championship times right away. He had a couple of other meets that month and, each time, he improved his times.

The month of June went well enough healthwise that we scheduled a trip with grandparents for 10 days in July. Hindsight is 20/20 they say and I should have seen that at the end of June Matthew's health was going downhill again. His sinus infection recurred, at the start of the trip was he was on antibiotics again and he was easily tired again. During the trip his energy faded, foods were tasting strange to him and his chest hurt again. After we returned home his health continued to decline.

By the end of July I calculated that, since January, we had been at our doctor's office at least once a week. Our doctor continued to be supportive and to believe us. I have since learned how fortunate we were to have such a supportive physician. At this point he and I each, albeit separately, came to the conclusion that Matthew had an adolescent version of Chronic Fatigue Syndrome/ME (or CFIDs/ME). I scheduled a visit to someone who knew about Adolescent CFIDS/ME only to be told to take Matthew home as there is not much to be done for these kids but some of them get better.

The new school year started in mid-August. In addition to Earth Science and Algebra, Matthew was taking a computer keyboarding class (and homeschooling for the rest). Shortly after the school year began, Matthew noticed his heart racing and felt close to fainting. For a month he wore a heart monitor and (of course) had no similar episodes during that time. But he felt very cold even though it was a hot summer. He was exhausted every day when I would pick him up after his 3 classes. He would do his homework immediately, take a rest, do his schoolwork with me and rest again – usually for the remainder of the day.

In mid-late September, a sinus infection flared up and was unrelenting. Given his medical history for the year, we began to wonder if it was the same infection that had never been fully eradicated. The fatigue and headache intensified, the sinus infection would not go away and Matthew was out of school again. That year his teachers were very understanding and sent his work regularly but the new school nurse was another matter.

We had to provide proof over and over again that he was unable to attend school. Each time I took him to the doctor for a note for the school, l Matthew was wiped out for days. The light and sound sensitivity increased, smells bothered him tremendously, the headache was constant, he hurt all over, his sleep was disrupted and unrefreshing, he had intense brain fog that hurt. His short term memory was getting worse. He had trouble finding the right words. He could barely go up and down the stairs for meals. And all of it got worse and worse. The brain fog was so bad that Matthew withdrew from Algebra. It was a horrible blow. Matthew had always been an excellent student in math of any sort but the cognitive dysfunction was such that he could not process new math concepts. In fact, Matthew was so debilitated that he was not able to go back into the school at all that year and completed his school work from home.

Over time I was able to educate the school nurse about Matthew's illness but it took many months, lots of doctor's visits and enormous amounts of my emotional energy. I took her materials on CFIDS/ME, I explained that the course of the illness is different for each patient, the duration is unknown, treatment is hit or miss and not always successful. I explained to her that none of us wanted Matthew to be sick – least of all Matthew! He would be at school if he could be but he COULD NOT. He wants to be educated – he values education greatly but he could hardly set foot outside the house for any reason – so being in the school was not possible.

At the end of the school year we moved to another part of the country. We traveled by car. Matthew was so weak at this point and his balance was so "off" that he had to put his hand on someone's shoulder to brace himself when walking in unfamiliar areas. It is hard to retain one's dignity when you are a teenager and have to lean on your parent for physical support. In the hotels and restaurants we stopped in along the way we got unusual looks. Going up stairs was very difficult and tiring. Fortunately the apartment we moved into only had a few steps up to it.

I was lucky that summer to speak to another specialist in CFIDS/ME who, while he could not take my son on as a patient, said he would be wiling to advise our family physician. He also recommended seeing a cardiologist for the episodes of total physical impairment that Matthew was having. During these times Matthew would be rendered motionless and speechless for up to half an hour and his arms and legs would be as cold as cold can be. It would then take at least 40 minutes to recover enough to be able to stand up or speak. I had witnessed these episodes often enough to know that they were exhausting in and of themselves – for Matthew (and for me to watch them). The specialist also recommended physical therapy to work on cardiovascular strength. The cardiologist did a full examination and put Matthew on medicine for the Orthostatic Intolerance (manifested by these episodes of immobility), gave us a medicine to try for the CFIDS/ME and provided us with the referral to the physical therapist. He also sent us to a geneticist for evaluation of Matthew's hyperflexible joints.

The physical therapist is a gifted woman. She is thorough in her assessments, she is also very kind and gets the best from her patients. She has had Matthew chart his activity and pain levels after each session, has given him exercises (stretching and strength exercises also) to do between sessions and she understands full well that Matthew can not get to physical therapy as often as most people in physical therapy. His (and her) diligence paid off and have resulted in increased strength for him but no change in energy level.

My diligence eventually paid off in December when I received a call from the specialist I had spoken to that summer. I had sent a letter detailing all of the things tried and done, what successes we had had and where we still needed his help. He gave us an appointment for February.

The appointment was lengthy and thorough. It was good to see Matthew connect so well with the specialist in terms of shared sense of humor and other things we had in common. While the appointment was exhausting it was surprising how quickly the appointment time went by. We left with a thorough diagnosis (CFIDS/ME, Joint Hypermobility Syndrome, Orthostatic Intolerance, movement restrictions, transformed migraines), with new things to try, new goals for physical therapy and a return appointment in 6 weeks time.

Thus far we have found no solution to this illness so we live each day as we can. Matthew works hard on his academics but with a heavily impaired memory and thick brain fog his progress seems slow to him. If he works too much in a day his headache and brain fog becomes even worse and he can't help but be irritable. (Even at rest the brain consumes about 20% of the total energy of the body- hypertextbook.com/facts/2001/JacquelineLing.shtml - which helps to explain why people with the intense, debilitating fatigue of CFIDS/ME have cognitive problems.) It is hard for him to get out and about – his sensitivity to light, to sound, to smells make going places very hard for him.

Matthew does his physical therapy exercises every day and goes to physical therapy each week. He tends to spend the rest of his days reading when he can, doing his academic work, and spending time on the computer. He is a player moderator on an online game, he is part of an internet group of young people with CFIDS/ME, and he researches topics that come up in his studies… He has chosen to spend a lot of time this year focusing on philosophical and ethical questions. (I did say that he wants to be educated, didn't I?) It is educational for me to see which parts of his brain are affected worst by this illness. While he can do a lot of deep philosophical pondering, his ability to progress in math is seriously impaired. His ability to lay down new memories is impaired as well. We have found that going over material a couple of times and setting it aside can allow it to filter through. This method isn't fool proof but it allows Matthew to work towards success.

Meeting other people who have CFIDS/ME or care for people with CFIDS/ME is difficult because those with CFIDS/ME usually cannot get out often. Even when they do get out there are few outward signs of illness and the PWC (person with CFIDS/ME) usually wants to do what they came out to do and get back home to rest as soon as possible. Matthew has contact with the people in the online group that he chats with as well as some people we met at a conference.

At the same conference I met other parents of young people with CFIDS/ME and we have formed a support group online. These people have been a lot of help to me. At the return visit to the specialist my older son was diagnosed with mild CFIDS/ME but a very intense case of Orthostatic Intolerance. Other families in the group have experience with some of the medications we are trying and have readily share their experiences. We share victories (big and small ones), struggles and information we find. Knowing we are there for each other is a help in and of itself.

So our torturous CFIDS/ME journey now has a new detour added to it with my older son's diagnosis. And while we now know what my older son's medical problems are, we are going through a difficult time stabilizing him. He has pushed himself hard this year to go to school and do well. He has had to give up swimming also as he only has the strength to go to school. The cumulative effect has taken quite a toll on him. He is another highly motivated, intelligent student who is struggling to succeed this year because he too has short term memory problems, brain fog, and additional problems related to very inadequate blood flow to the brain and blood pooling in the extremities.

It is easy to tell that when other people see my children they think "but they don't look sick…". This illness is not marked by external signs. Matthew has grown like the proverbial weed and is over 5'10" at the age of 14! My older son is not quite as tall but outwardly looks perfectly healthy. Lots of people have lots of suggestions – do a little more each day, try harder, get lots of sunshine… While well intentioned, these suggestions do not help. If someone with CFIDS/ME does too much at any time there is a serious payback and they are often confined to bed or a chair for days, weeks, even months for their increased efforts. The best analogy I have found is from Encounters with the Invisible: Unseen Illness, Controversy and Chronic Fatigue Syndrome (Southern Methodist University Press ) by Dorothy Wall who has CFIDS/ME:

"Why can't you just try to walk a little farther each day? One block this week, two blocks next?"

How can I tell her? I'm in a different country, My language, this new language of the disoriented body, makes no sense to her. …

"It doesn't work that way." " I am like a car with one piston. If you try to drive twenty miles one week, thirty the next, you'll just blow the piston. To drive farther you need to repair the car."

The problem is that no one really knows how to repair this car – the person with CFIDS/ME. Something that works for one person may not work for another one. Unfortunately many patients and their families are not taken seriously and therefore don't get the care they need. As to trying harder – the amount of physical and or mental energy expended by someone with CFIDS/ME may not look to be much but their reserves are so limited and we don't know how to replenish them. And while most of us love to be out in the sunshine, the light sensitivity that many people with CFIDS/ME have, makes being outside – even with strong sunglasses and a broad brimmed hat – excruciating. It would be so nice if the solution to this syndrome were as easy as these suggestions.

Physical therapy has been very beneficial for their cardiovascular strength and easing their movement restrictions. We have also found a very kind person (who was a nationally ranked swimmer for many years) to work with Matthew on swim technique. While Matthew cannot work on his endurance or speed he can work on his technique. (When he is well again he hopes to add the endurance and speed.) Being horizontal in the water (a position that is easier for his Orthostatic Intolerance) coupled with the buoyancy of the water to support him, means he can focus on his technique. When I watch him glide through the water with his long, clean strokes I focus on his intention of getting well. I hope he (and his brother also) gets well soon.