Chronic debilitating fatigue.
Now I don’t mean being tired, tiredness and fatigue are very different things. We all get tired, our lives are busy, we put far too much pressure on ourselves to perform at school or at work. To be the best mum, dad, wife, boss, friend, son, daughter. Life can be tiring. But after a good nights sleep or a couple of early nights you can guarantee to feel much better.
Fatigue is different. It is extreme tiredness resulting from mental or physical exertion or illness. It makes you weak, not just physically but mentally too and it is debilitating and doesn’t go away with rest.
I pace everything, instinctively. If I walk the dog then I have to sit down afterwards. If I have a busy day then I have to keep my diary free for a couple of days afterwards. If I do an activity that uses a particular muscle or group of muscles I know that a) I can’t keep it up for long and b) there is a high probability that the strength in that part of my body will be next to useless for a couple of days. I have to prioritise the management of fatigue or it may just swallow me whole.
For my daughter we pace her day for her, as she grows she is learning better to rest before the onset of pain and fatigue but she needs support with this. She has four planned laying down rest breaks every day at school. Her teacher combines typing with writing and sometimes she has to have a scribe. She has regular movement breaks planned into her days and spends at least two afternoons at home each week resting so that she can manage life the rest of the time.
For my son fatigue has slowly stolen his life over the last 12 months.
A year ago my son was attending school in year 7. Excited about his future. He danced at the local dance school and had been selected to join their ‘crew’, where he had been an active member for six months or more. He was described by his form tutor as on of the most popular boys in the year, although a little chatty, and he was in the extension classes for all the core subjects.
Around this time he started to enter a flare of fatigue. This had happened before in years 3, 5 and 6. The worst episode being in year 6 but after a few months we always rode it out.
His pain gradually increased, he was becoming breathless, a little more dizzy, clammy and stairs were becoming his enemy. The cues were subtle but they were there. Like any teenager he pretended he was OK, if he did then he would be OK, right?
I spoke to school. They didn’t see the signs. At all.
He struggled for the rest of the school year getting through the days and crashing at home, sleeping more and more and often being unable to communicate by the time he reached the front door at the end of a day.
We told his consultant. We told his school. Again.
We worked really hard to build his stamina over the summer with the help of physio but in the process he broke and dislocated his wrist which didn’t help. Going back to school in the Autumn was when he really started to fall apart. This time I was on it. Emails and phone calls to school. Re-sending OT reports from the previous year that were never actioned. They would have to support him, help him to get through. Detention after detention came for not concentrating, chatting or forgetting his books which added to his school days and made him even more tired. At this point I’m pretty sure I began to be known as ‘that parent’.
We started dropping him to the bus stop and collect him at the end of the day just to help that little bit. We persevered with school. And they issued him with a medical card and lift pass. And he carried on pretending he was OK in front of his peers, resenting the teachers for not understanding how much effort he was putting into just being there and drowning in their comments about how he looked OK, needed to try harder, that he didn’t help himself. In truth they just didn’t see.
Then one day he called me from the bus on the way home after a detention and said to me “Mum I can’t do this anymore”. I found the bus he was on, got him off and brought him home and put him to bed, he slept for nearly 24 hours.
After a couple of weeks at home resting he returned to school. I prayed that this time that he would be OK. That the couple of weeks at home was enough. The first day he slept for 3 hours in the medical room and they called me to collect him.
I talked at length with his consultant and she decided that to get him to school each day, even for a short time, would be a good thing. Everyone said to encourage him to do more. I would drop my two younger children at school go home to in a bid to wake and dress my son and drive him to school. By the time we got to his school 25 minutes away he would often be fast asleep. He would then go in for a lesson, rest for an hour (well sleep) and try to get through third lesson without falling asleep again. As the weeks went on all he did was come home crawl into bed and sleep till the next morning, often missing dinner. It had been months since he had seen a friend outside of school and the last time that he did he passed out. I longed for the days that he would come home late and when I tried to contact him he would have let his phone battery die because he had lost track of time in Costa chatting with his girlfriend. I longed for that kind of worry.
When I dropped him in the mornings I would often drive away sobbing as I questioned my decision to leave him there and when I collected him he would often walk back to the car limping as his pain had flared throughout the day. It got to the stage where 12 hours a week in school was killing him and a third of those were spent asleep or resting. Some days I would spend two and a half hours in the car just driving my kids to and from school. He was surviving on Red Bull and he was learning nothing.
Then one evening he couldn’t cope with me asking him to pass me a knife and fork because it was all too much, he broke down.
What was I doing to my son.
From this point he hasn’t stepped a foot in school. That was four months ago. To be honest for the two months prior to this in which I was ferrying him too and from school he actually has no memory of being there at all. Perhaps that is a good thing?
We have worked to slowly eliminate most day time sleeping. It hasn’t been easy. At first I would literally follow him around from room to room to keep him awake. If he showered I would find him spark out on my bedroom floor because he didn’t have the energy to dry himself or to get dressed. When making a cup of tea I found him fast asleep on the kitchen floor by the fridge. It was relentless.
I persisted and his Dr referred him to a fatigue team.
I tried to teach him, sometimes this would involve me simply reading to him, or being the scribe for his ideas. I taught him the structure of an atom while he was laying flat on the floor with his feet up the wall to combat the dizziness. We had to revisit things and break them down for them to sink in. I would sit up till the early hours learning the KS3 syllabus and planning what we should cover so that when he felt OK I knew exactly what to do without wasting his limited energy while I thought about what to cover next.
When his school attendance was around the 40% mark I contacted the participation officers at the borough to initiate home education for him. A panel sat and the service started soon after. We are slowly building up his capacity to sit and to concentrate for 30+mins in one go.
In the last four months we have managed to cut his night-time sleeping from 16+ hours to 12-14 hours. Although this very morning he slept for 15 hours and when his tutor arrived I couldn’t physically wake him, as I sat him up his eyes were rolling back in his head. To be able to achieve this we have had to cut all physical activity and pace ev…ery…thing. There are still good days and bad. The hope is that the good days will get a little better and the bad days less so.
For now we are taking baby steps.
No teen would choose to live this way. To spend every waking hour feeling like they are wading through mud. For nausea and tiredness to become their normal. For standing upright to be hard, hard work. To spend all their time with their mum! For even their hair follicles to hurt. For the pay off for tying to concentrate for 40 minutes on school work in one go to last for days. For looking forward past the next few days to seem an inconceivable thought.
For all the professionals that may deal with someone like my son who has fatigue. This is more than tiredness. It has a real impact on families and on lives. Pushing through does not work, it feeds into the boom bust cycle increasing fatigue over time. No amount of positivity will magic him better, if it did he would be have been well months ago. Listen and know that there is a much bigger picture than you can see in your snapshot of time with a student or patient.
I hope that I can write soon with our victories, the successful interventions, of how life for my son has propelled to a whole new level. For now we are celebrating the baby steps.