I am currently on sick leave again and am feeling quite down in the dumps. I have been struggling with my health since our week away, and the return to work this September has hit me harder than usual. A school classroom is not really the ideal working environment as the sensory overload is difficult to cope with, and this term is a particularly long one. While I am at home on enforced rest, I thought it would be a good time to write a little about my chronic fatigue journey – although don’t judge me. I know that my coping mechanisms are not necessarily the best, but I have to do what is best for me!

Apart from the usual childhood ailments and a spell of glandular fever in my 20’s, I had always enjoyed good health and, as an adult, had only ever had a handful of days off work. That all changed in November 2015 when I caught the flu. It was the first time I had ever had it and I was completely floored. I spent a full week in bed, but it didn’t occur to me to do anything but return to work when that week was up. I somehow managed to slowly get about half way there (it’s normally a 10 minute walk) before coming to a complete standstill. My legs just wouldn’t work. I sat on a wall and phoned in to let them know what was happening. Luckily, a colleague came to collect me, took me home, waited while I phoned the doctor, and with an appointment miraculously obtained for an hour’s time, dropped me off at the surgery. The doctor assured me that it sometimes took a couple of weeks to recover from the flu and signed me off for another seven days. After that I continued being signed off and didn’t go back to work until the following September.

Those nine months were terrible. Initially even going up and down the stairs was a struggle, and apart from going to the surgery, I didn’t leave the house. Reading was tiring, talking was tiring, my arms ached too much to hold knitting needles. I was sent off for blood tests which all came back clear, and I was diagnosed with post viral fatigue. Beyond that I was given no information or advice – presumably because the doctors themselves didn’t know – and I had to resort to google to find out what it actually was, what the prognosis might be, and to try and navigate a way forwards – and to be honest, it didn’t look that positive! I was grateful that my children were all teenagers (my eldest had just started university and my other two were of an age to be able to get themselves to and from school and extra curricular activities, and to help around the house) as if they had been small I really don’t know how I would have coped. I always remember the day when my younger son asked whether there was something that I wasn’t telling them because he was so worried that I just didn’t seem to get any better.

Progress was painfully slow – I almost needed to relearn how to walk again – and it really was a case of (excuse the pun) one step forward and two steps back. When I eventually returned to work on a phased return, it was so difficult that the timetable the occupational health adviser had drawn up needed to be completely rewritten as I couldn’t cope with being there for more than an hour at a time – and even then needed the next day off to recover! Luckily the leadership team at the time were incredibly understanding and it took almost the whole of that academic year to work my way up to the part time hours which I am doing at the moment.

Since then I have had three more big relapses – in 2018, 2020 and again in 2022 – which sent me right back to square one. I was able to bounce back slightly quicker than that very first time, although I was still off for 3 – 4 months, followed once again by phased returns (but at least in the spring of 2020 everyone was off work for a while so it didn’t cause quite such an inconvenience!!). Luckily I have managed to avoid such a big crash since then, and I think this is partly because I am better at pacing myself and recognising when I am reaching crisis point, and partly because I no longer feel so guilty about taking a few days off to get myself back on track. In the past I have been so guilty about all the sick leave I had taken and so desperate to prove myself to not be ‘the ill one’ that I kept going longer than I should have done to try and keep my attendance better than anyone else, whereas now I am of the opinion that a few days off when I feel the symptoms worsening is better than pushing on and being off for months. (Hopefully my bosses would agree!)

Anyone with an invisible illness will know how hard it is for other people to understand. If I mention being exhausted, colleagues will inevitably say, “Yes, I’m really tired too” (and I’m sure they think I’m making a fuss about nothing because they’re not taking time off for it!), and if I had a pound for everybody who has ever said “but you look so well!”, I could probably afford to take early retirement! So I try not to go on about it because no one wants to listen to me complaining, but that means that often nobody even knows that I’m struggling until it’s too late.

In the nine years since I was first diagnosed, I have seen many different doctors and had many sets of blood tests, and the help that I have received from them has continued to be nonexistent. Even when so much time had passed that it stopped looking like it was just post viral and mutterings were made of it being CFS, all they ever did was sign a sick note and tell me to try and take a short walk if I could, but mostly just rest – except for one particularly unsympathetic doctor who, at a point when I could barely get out of bed, asked me what I did at home all day (nothing – I couldn’t!) and then suggested that it really would be much better for me to get straight back to work. (I made sure to never see him again!) I asked about referrals and was told “What’s the point? You know the blood tests are clear. There’s nothing wrong with you that we can treat.”

Left to my own devices, walking, when I have been able to do it, has been my salvation. After each long relapse, as soon as I had reached the point when I was able to leave the house, I would don my fitbit and obsessively monitor the number of steps I could manage, gradually trying to increase them. It was an exciting moment when I finally made it to the park 5 minutes down the road (although it took me a lot, lot longer than that to get there and I had to sit and recover on a bench for about half an hour before I could even think about the painfully slow return home), and even more so when I could finally reach a footpath! (We are lucky in that we live within striking distance of a few good ones.) My wonderful daughter used to spend ages sitting with a map, a ruler and a piece of string, measuring out the distances of the paths and trying to combine them to plot out different walks that wouldn’t be too much for me, and to create a bit of variety in what were otherwise miserable times. 

I know that I am lucky that my CFS is only mild and that many people have a far more severe form than me – how they cope I can’t imagine – and I know that there are worse things that I could have, but it doesn’t stop me getting depressed by it. I am able to go out to work – albeit part time – although by 1 o’clock when I finish, I am completely drained and I go straight home to bed for a couple of hours to recover. I don’t sleep for the whole time, but once I’m awake I’m usually too tired to move and so lie and listen to BBC Sounds or Audible. I get up feeling groggy and although often all I want to do is watch TV, I try to limit my screen time for later in the evening when I really am done in, and instead do short bursts of reading, knitting/crochet, or writing something for this blog, although I find it hard to concentrate, and I’m always aware that I need to keep a bit of energy for making something to eat and washing up!

At weekends, I aim to go out for a walk – usually heading off to another town/village on Saturdays, and staying local on Sundays so I have more time to rest and recover for the week ahead. I aim for about 5 miles, a distance I can manage without too much ill effect, and this always has to be done in the morning so that I can still be home for an afternoon sleep! I find that the mental exhaustion from work and the physical exhaustion from a walk to be fairly equal in terms of bringing on symptoms. In both cases, as the morning goes on, I can feel the increased muscle ache slowly washing over me like a wave (although it does sometimes suddenly hit like a tsunami!), and I become more and more light headed and foggy, until I reach a point where all I can do is lie down.

I choose to prioritise walking in my free time, but this is at the expense of everything else. My house is a pigsty – it’s all I can do to manage the very basics –  and my garden is an overgrown jungle. I put on the blinkers when I’m at home and have got used to not noticing the mess and the cobwebs, and only very close family see it anyway.  The thought of anyone else stepping over the threshold fills me with horror! I never go out in the evening as I have no energy left by then. I’m too exhausted to talk and I find it difficult to listen and take in what people are saying, which is not ideal for socialising. Add to that the sensory overload of being in a busy environment and it is far too much at the end of the day. Naturally introverted, the last nine years have definitely made me worse. When I am walking I can forget all of this though. Despite the aches and pains, when I’m striding along I like to pretend that there’s nothing wrong with me. I tell myself that I am beating this condition into submission because I am invincible! Walking is essential for my mental health, and that’s far more important to me at the moment than a tidy house. 

It’s only been this last year that I have finally managed to work my way up to some of the 10 mile walks that I have been cataloguing on this blog, but they have to be carefully planned and usually only take place in the school holidays so that I have extra time to recover. There needs to be a mid morning drink stop (usually just a flask although a cafe is nice, depending on where I am) and I also need to have a longer lunch stop with a proper sit down half way through. I have some great little foldable foam mats that I bought cheaply on Amazon so that I can just plop myself down anywhere when I need to!

I focus on the good bits on my blog posts, but by the end of these walks I can barely move and am often dangerously light headed. I have to focus very hard on putting one foot in front of the other so I don’t fall over, and if my daughter is with me, I frequently have to hold on to her arm (which she hates but patiently puts up with). After such walks – and also on the rare occasions where I throw caution to the wind and live life to the full by having a whole day out, such as to London or our recent trip to Cambridge – I suffer very badly with post-exertional malaise. I lay awake feeling as if I have been hit by a double decker bus. My whole body is wracked with muscle and joint pain, the glands in my neck hurt and it’s impossible to sleep. It will take several days to recover. And let’s not get started on the ill effects I suffered from my week away!

In theory I know that I probably shouldn’t do it – and all the advice online says that it’s important to not push through the fatigue – but to me it’s worth it. After nine years of this horrible condition I am absolutely fed up with constantly being careful and I want to have a bit of normality back – just sometimes! Even though I know it could be worse, it doesn’t stop me getting frustrated with living half a life, heading home early to make sure that I am in bed by 2 o’clock at the latest when everyone else is out and about enjoying their day, always being mindful of not overdoing it. Unfortunately, in my determination to try and do as much as possible, I sometimes forget that I am treading a very thin and dangerous line between keeping active and pushing myself back into a relapse, and I know that it’s foolish of me to think that I will always bounce back quickly – until, like now, I am staring a relapse in the face and wishing that maybe I should be more careful!!

So, it can all be a bit rubbish and I feel very down a lot of the time. It’s easy to get overwhelmed by it all and that’s partly why I started this blog. In my personal diary, the good bits in my life tend to get lost amongst the stress and anxiety and the black cloud that often hangs over me; the stuff that I don’t want to burden other people with. In contrast, I wanted this blog to focus on the positives – the moments that are great, the magic that can be found all around if you just slow down and look. So, although it may be a bit sugar coated and not a completely realistic reflection of my life (but then most blogs probably aren’t!), I enjoy thinking about what I might write, I enjoy really looking around at my surroundings and stopping to take photographs that I might include (and before this I very rarely took photos), and I enjoy the writing process (although, even though I am writing this for myself, as I press publish I do worry that anybody else stumbling across it will think that my writing is terrible, and wonder why I have chosen to put it out there to the world!)

I don’t know what the future holds. I think I’ve given up hoping that my CFS might miraculously disappear, and I know that a relapse is likely to always be lurking around a corner, but this blog is a reminder that I’m doing ok, that there’s still lots of enjoyment to be had, and that life, for the most part, is pretty good.