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.
I’ve only just found your blog but reading about your sons fatigue brought me to tears. My son had a very similar journey through comprehensive education, it was a tough journey and reading your experience has made me realise I don’t think we’ve had chance to grieve for the life he should have had. His attendance was just 30% and that 30% wasn’t even in lessons it was in a unit for children with special needs where initially they had two rooms, one for those with health/anxiety issues and the other with behavioural. A new member of staff joined and insisted Tom go to the start of each lesson to collect work. This was madness, it was a large campus and the reason Tom was in the unit was because he couldn’t walk around school. She was horrible to him and even spoke to me like a two year old when I went to collect him. Tom was ringing me from school in tears asking me to pick him up as he couldn’t cope with the pressure. He was by now very depressed and anxious as well as fatigued and in pain. That was it, he never went back but it took a year to get any home tutoring, eventually we got 5 hours a week! He was a year behind in his GCSEs by now and often missed lessons or only did half a 45 minute session. However, I want you to know things have improved if only a little. Tom got 4 GCSEs 3 b’s and a c! I was so pleased but at the same time a little disappointed, he’s a very bright boy who was expected to get 12 top grades. He has since completed a Btec diploma at college despite only 37% attendance (only meant to be 2 days a week anyway). Last week he started a foundation degree in Computer Science at the same college. He’d never have coped with uni as their campus is so spread out here and he could never manage in another town awAy from home. All his lectures are on one floor and using a wheelchair we are hoping he will succeed. He had three full days last week and has slept ever since but hopefully he will manage going forward with just a Monday and Wednesday attendance. If he can achieve this he could do an extra year and get a BSc. So it can be done despite fatigue, pain and limited attendance! I still worry about his future as I don’t believe he’ll ever manage a full time job but who knows, maybe his condition will improve once he’s stopped growing? You have to have some hope don’t you? It helps you carry on. Best wishes to you and your family.xxx
Thank you so much Kathy,
I think when you are in the midst of this you are often too scared to look to the future, you are often so wrapped up in surviving that you don’t often realise how hard it actually is. It’s not until you look around and see other children of similar age going out living their lives that it breaks your heart a little.
I am so pleased Tom has achieved so much with the odds stacked against him, you must be so proud. I pray that he can balance his energy levels with his learning and manage to have a life now that he is at college. I feel that sometimes all A does is sleep and log on to his online lessons then he needs to sleep again!! I keep saying that it has to be better once he is not using all his energy on growing!!!
But you are so right – hope is what gets you up in the morning. Our kids are amazing 😉 Love and hugs. S x
Hi Sarah, great blog! Unfortunately a terribly common trait with our inherited conditions. Chronic fatigue is one of the symptoms I have with Hereditary Neuropathy with Liability to Pressure Palsies (HNPP) – the sister condition of Charcot Marie-Tooth syndrome. It can be terrible, because it can either be there all the time or strike when you’re in the middle of the road! But it must be even more difficult seeing your child with it and trying to help them. Well done for writing this blog.
Hi, I read a lot about HNPP when I was diagnosed as I had an inflammatory element to my neuropathy that baffled everyone 😉 thank you for taking the time to comment, it means a lot. X
Sending big, big hugs! I felt like you were describing my teenage years (which, if I’m honest, made it quite hard for me to read!). Thankfully, the school that I went to until upper high school was really supportive and understanding. But they were a small school, and didn’t offer the last few years of high school, so I had to transfer to a different school to complete my last two years. They were not so helpful or understanding. I was ‘that’ student, the one that always needed extensions for assignments, was always missing school, was always sick… And my Mum was like you – she became ‘that’ parent, the one always getting into contact with teachers to ask if a class could be held on the ground floor, instead of the third story (with 6 flights of stairs to get there), or whether I could be released from class *xyz* a little early each week, so that I could make it to the other side of the school in time for my next class…
I graduated (even with missing a lot of of my exams – I got medical certificates and they gave me marks based on previous work), and went to University the next year. I made it through the first year by literally sleeping every moment I wasn’t in class… but it just wasn’t sustainable.
I wasn’t diagnosed until after then (it took nearly 7 years for me to be diagnosed with dysautonomia and CFS/ME). Diagnosis was a big relief – even though they couldn’t do much to help my symptomatically. At least now what was wrong with me had a NAME!
Hang in there, the both of you. Keep looking for answers. Keep doing what you can, even if that means your son is doing schoolwork on the lounge room floor with his feet up the wall!
And while you’re supporting him, make sure YOU are getting support too. A friend, a family member, a professional counsellor – *someone*! It’s not easy seeing someone that you love being so unwell, long-term, and not be able to do much about it. So make sure you take care of you too <3
P.S. This bit?
"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."
That bit almost brought me to tears, because I KNOW how hard it is when you're dragging yourself, FLOGGING yourself to try to get through the day, and yet there are people saying, "You just need to try harder!" There will always be people like that, people who are just totally oblivious to your struggle; the kind of people who, even if you explain, will just never, ever 'get' it. They're the kind of people that you don't end up keeping as friends. Friends will care, will try to understand. Those that don't end up just drifting away…and that's THEIR loss!
Sarah, thank you so much for taking the time to write this. I couldnt respond when I first read your comment because it brought me to tears, not in a bad way but because you just ‘get it’.
Even with lots of my friends I skirt over the details, when ‘Oh he’s having a bad day today’ or ‘I couldnt manage wake him for his tutor today’, is about as detailed as the explanation gets. I don’t admit how much not being able to wake my son after 15 hours asleep scares me, how I lay in bed at night worring about what the future holds for him but at the same time telling myself that education is over rated and that his health is far more important. That I notice groups of teens out at the weekends and long for him to be part of that normaility again. My husband and my mum are amazing, they hear everything warts and all.
Your journey is very similar to my own, I never knew what was going on for me growing up and a diagnosis came as a huge relief! But because I’ve been there too and I dont know if that makes it easier or harder?!? I know that it makes me fight for my kids more.
hugs, Sarah xxx
For anyone else reading this comment Sarah writes at https://reflectionsofabear.com her blog is brilliant – check it out.
I have Ehlers-Danlos, dysautonomia, and autoimmune diseases. I am, now, where you are–instinctive pacing. I have been, nearly, where your son is, and it is a horrific way to live. Few people can believe it, fewer still understand.
If you haven’t already done so, I would suggest a full thyroid panel (not just the TSH). When I felt this tired, I was both hypothyroid and anemic. Narcolepsy is a possibility, as well as mast cell activation disorder.
Having lived with profound fatigue leaves me ever grateful for the relative energy that I now have. I can fool myself into thinking that I am almost normal. Until I spend time with people who actually ARE normal and see just how much more alertness and capacity they are blessed with.
Thank you for taking the time to respond. I like you have not been in that place for a long time, not since I found out what was happening for me medically and learning the tools to manage. Despite knowing what we know our son doesn’t seem to be improving at the rate we would like. I hope they live up to my expectations 😉 We are awaiting our appointment with the fatigue team where I have a list of questions growing longer every day. I strongly suspect lots of the things you have mentioned. You are right, sometimes I think I’m doing really well, having a great day, full of energy and positivity. Then an OAP overtakes me walking and brings me back down to earth with a bump. Hugs. Sarah xxx
What perserverence all round…I too, hope to hear the positive story to come. For now, sending you and your family much love x
Thank you Sheryl. Today that victory was an outing to the shops to stock up on smart water… even if he has slept all afternoon as a result. We just keep smiling and celebrating those baby steps. Hugs, Sarah x