I haven’t had a good week. I haven’t had a ‘good’ period for a long time. Last Saturday I was feeling ropey but dragged myself out of the house to go and see my local football team play. It was a lovely sunny spring day, a vital end of season game and despite not feeling great I’m determined to have some pleasures in life even if I have to pay for them afterwards. That’s what I tell myself every time just before a crash. 

The stadium is ‘only just down the road’, a ten or fifteen minute walk but is in fact a kilometre away which for a healthy person really isn’t far but for a bazzer it’s a very long way. Unfortunately I still struggle to remember that. The game itself was exciting with lots of goals and the win meant that Worthing FC will be in the playoffs at the end of the season with a chance of promotion for the second year running which is a fantastic achievement. 

But the walk there and back, the stimulation of the game itself and two and half thousand people all shouting and cheering, along with chatting throughout to the two gentlemen sitting either side of me (one very drunk!) meant I used up an awful lot of energy that I simply didn’t have. 

Sunday, Monday and Tuesday were a complete write off. I’m slightly better today but I’ve been literally exhausted, absolutely hanging. My internal battery plummeted to 1% and was telling me to plug in a charger, if only that were possible. As always the complete depletion of energy has been accompanied by a strange and unpleasant, hollow ache in my limbs which is incredibly debilitating in itself. I have had a headache all week and the really painful aching in my body brings with it my old friend malaise, as is often the case. The glands in my throat have been swollen and painful and my mouth and tongue felt sore. My already troublesome lower back pain has become much worse and the old injury in my wrist (no vulgar jokes please) aches unbearably. Maybe worst of all is feeling like death but being unable to sleep properly which exacerbates all the symptoms. 

I’d like to state again that I’m very grateful that my symptoms are not as bad as many other people’s. I’m not bedbound except on my very worst days such as this week. My normal level is that everyday domestic life is enough to keep me tired and achey. Once I do anything more, especially things that involve leaving the house my internal battery starts struggling like a flickering light bulb. I may not crash that day and I may be able to be unusually busy for days on end before it has its revenge, but it will have its revenge. The most frustrating thing is that the frequent delay between exertion and consequences means you never know how much is too much until it’s too late. I’m pretty sure that going to football was actually just the straw that broke the camel’s back after a busy and very stressful period recently. 

It’s the same old cycle that bazzers are told not to fall into. Boom and bust. Acting ‘normally’ on your better days and abusing your body’s faulty battery until it gives out. But it’s not just special occasions that cause me to crash, it can be unavoidable daily chores. The school runs, cooking, making packed lunches, helping with homework, doing the washing up and a thousand other little things that need doing if you own a house or have children. Daily life itself. Add days out on top of that – and that could simply mean a trip to the supermarket – and it’s almost impossible to keep on top of my symptoms. 

I think one of the things that instantly put me off wanting to read about my illness and made me shut myself off from any discussion is that after I was diagnosed I was bought a book about pacing, the regular rests you are meant to take throughout the day. When the book arrived it looked daunting. It was A4 size, contained 337 pages and made me feel tired just looking at it. The index itself is eleven pages long- I’m not joking. 

The book itself tells you to be very regimented about your life. Keep diaries and log books of your symptoms, change your daily activity schedule accordingly and make sure you pace regularly. Well I thought that was the gist because I didn’t read it. From a brief flick through it seemed to be telling me that I needed to be even more restrictive on my body and mind when I already felt imprisoned and all its instructions were too much to take in. 

But now I’m in the right state of mind to address my illness (and other things in my life which are contributing to it, but that’s another story) I’m starting to understand why that is. Let’s be honest, a book of that physical size and content about chronic illness would be a slog for a healthy person and I was put off even before I turned the cover. I am now flicking through the book properly for the first time.

It is undoubtedly correct in some things like its description of feeling like taking one step forward then two back and the delayed onset of symptoms but then gives you lists of tasks you need to do, activity diaries you need to keep, instructions to stop doing everything if your symptoms increase, suggestions of resting completely for a month or more (totally unrealistic) and charts warning about the consequences of not pacing properly. 

Unfortunately my responsibilities don’t care about rigid pacing schedules and the big football match doesn’t care when my activity log says it should be played. This is where I start to lose interest. It’s simply not feasible to rest in such a regimented manner because life doesn’t allow it, certainly not as a parent, and looking at someone’s hypothetical activity chart makes me want to stab myself in the eyes with a pencil. I might be cynical here (I am quite a cynical person) but it seems to me that the author has somehow managed to stretch telling us to rest continually for 337 pages, which fair play to her is quite a feat. 

However, I did keep diaries myself after I became ill for much of the first three years. Proper diaries relating my symptoms and thoughts, for work initially because I was worried they thought I was faking it but also because at that point I was undiagnosed and wanted to keep records in case they could help find out what was wrong with me. I’ll publish extracts from it soon from around the time when I first became ill until my diagnosis as it’s interesting and sad to read my descent into chronic illness. After that period they’re basically a repetition of one similar bad day after another. 

I also kept a separate log with a scale to try and document my daily symptoms in a easily understood form which I eventually refined to:

1- Feel almost normal, able to function, go out, walk for exercise, behave normally. Still a bit tired but very much in the background. Never happens. 

2- Tired and maybe achey, but still able to go out and function. Feels like I’ve had four or five hours sleep. This would count as a good day. 

3- Knackered, aching, no energy to do anything but sit down. 

4- Zero energy, aching, mentally and physically exhausted, unable to do anything, need to lie down. 

5- Completely exhausted mentally and physically. Aching badly, feeling rotten and unwell. Unable to function at all, not even read a book.

So when I spoke to my family or received the tiresome weekly welfare call from work checking up on me I could simply tell them that I’d had a bad week of 4s and 5s, like this week has been. But I stopped doing that eventually, even while I was still off sick from work for the two years before I lost my job. I quickly came to think what’s the point? I’m ill every day and it’s tedious repeating the same old symptoms every week in the expectation that there will be some progress. I ended up simply telling my manager each time she called and asked how I was, ‘well, I’m still alive’ and that’s what I often tell people to this day if I can’t be bothered to explain or if they’ve just asked out of courtesy.

This is it you see, it’s ongoing and relentless. It’s an endless, unavoidable cycle of exertion and crashes and it’s unrealistic to believe you can form rigid schedules that will be able to mitigate these because life goes on and things need to be done. Chronic barry doesn’t care about our responsibilities and our responsibilities don’t care about chronic barry. You really have no choice but to roll with it and take the pain and even though I know it will make my symptoms worse I insist on still being able to have some pleasures in life, which is why I’ve bought myself a ticket for Sunday’s big playoff semi final. I hope I will feel a bit better by then and will deal with the new inevitable crash when it comes because otherwise what quality of life do I have? You may have taken away my health but you won’t take away my spirit. Fuck you chronic barry and come on Worthing!

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