Due, where’s my spoons?

Anyone with a chronic condition will probably be familiar with this idea. The bad days. The ‘oh crap, why?’ days. The days when it’s all a bit too much.

It’s often hard to explain to people who don’t have a chronic health problem exactly what it’s like. I’ve noticed over the last couple of years that fatigue seems to accompany just about every chronic health problem – whether it’s mental illness, genetic joint disorders, CFS itself, specific organ diseases, the list can go on – and it’s hard to explain just how debilitating that can be.

Right now, I’m achy and hurting. I’ve definitely been in more pain, my breakthrough pain relief is doing an OK job and normally I’d be dealing with this perfectly well. Hell, I’d probably be finding ways to make myself laugh and forget about it all.

The problem is that I’m too tired for that. Not just ‘ooh, could have done with an extra hour in bed’ tired. I literally cannot think about anything except sleep. I’m working away at the work that my supervisor has finally found for me feeling quite proud about what I’m acheiving. Yet my eyes are dragging down no matter how hard I try, my brain is so fuzzy that I have to triple-check everything just in case and even with the checks I’m not entirely sure that I’m doing stuff correctly. I’ll have to go back over my work when I feel better to make sure that it’s OK. It’s like someone has pulled a plug somewhere and all my energy has gone away. I woke up feeling like this, it’s only getting worse as the day goes on and I’m just hoping that I can stay alert enough to drive safely later. The tiredness is making me crabby and irritable, it’s making it harder to deal with the pain and I know that the nausea and headache that I have are from the fatigue rather than an actual virus. Thankfully one of the side effects of the painkillers seems to have been getting rid of the shivers and chill that come with this.

It doesn’t matter how much caffeine I take in or how many little walks I take, the fatigue isn’t going away. In my head I know that it will lift in a day or two and I’ll be back to ‘normal’. I also know that it will happen again, possibly for no reason at all. When I get days like this but I know that I’ve done things the day before that triggered it, I don’t mind. That whole spoon analogy is brilliant – borrow spoons from tomorrow and you’ll struggle tomorrow. I don’t mind borrowing spoons if it’s for something that I’m really going to enjoy. Today someone snuck into my spoon drawer and stole half of them. That’s the unfair part.

Knowing that in a day or two I’ll feel much better is fine, but it’s sometimes demoralising to know that it will happen again. And again. And again. The most frustrating part is that these are the days that I am least able to cope with the knowledge that this is going to happen again.

I don’t know whether I’m making any sense with this. I don’t even know whether it’s helpful to be writing it down – I’ll reassess this in a couple of days when I’m feeling better. It’s just that it’s often so hard to explain to people who have never encountered this just what it feels like to be inside my body right now. And I know that there are some people on my f-list who know exactly what it feels like, even though they don’t have EDS, because you have something that does exactly the same to you and usually at the least convenient moment possible.

Hopefully tomorrow my spoon drawer will be intact. That is the thought that is keeping me going through today.

Just to make my life complete, I shall start venturing into the Canadian medical system on Monday. I have an appointment to register with a doctor. After three and a half months, it’s probably time, right? After all, I haven’t seen the inside of a hospital for four months now! Oh, my new doctor is going to rue the day she picked up the phone for me 🙂 Either that or be wildly excited about meeting a relative of the only family with two osteogenesis imperfecta siblings in the country. They’re in medical journals and everything.

My poor new doctor. Hopefully she’ll at least give me my flu jab before she runs away in terror.

Enough whining. I need to find a happy place. Perhaps I’ll have a Merlin-and-SJA-marathon tonight (if I can stay awake long enough!).

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