Just hearing those words is enough to make me frustrated. Granted, frustration is generally one of my go-to emotions so it’s probably not all that surprising.
I’ve been thinking more and more about resting and pacing since a number of flares have left me feeling considerably worse over the last couple of years. This came to a head when I finally received an additional diagnosis of ME a little while ago. My mum had ME, so she knows, and all of the advice about helping you get over it as best as possible is learning how to rest. To truly rest.
This is my problem.
When I was younger I went to see a specialist EDS physio. She’d always tell me off for not resting when I complained of feeling too exhausted and in too much pain to function. I was honestly confused. I spent all of my free time in bed, I didn’t do half the things I wanted to do. What else was I supposed to be doing? Or, I guess, not doing.
Not work in bed, apparently. I would be (what I thought to be) resting all day, but in fact I was doing the opposite. At the time I was studying for my Master’s (the first time round) and setting up my own business. I was plugged in 24/7. So even though I wasn’t physically moving all that much, this wasn’t the looking after myself I thought that it was.
The worse my flares get, the more I’m realising that intellectual stimulation (and even just sound and light) is as fatiguing (and when I mean fatiguing, I mean the long-term consequences lasting days or weeks from a single ‘overdoing it’ event) as going out for a boogie. God, I haven’t been out for a boogie in years. I should go out for a boogie.
I just…I don’t know…I find it so hard. I’m trying to make that switch in my mind that going from “just being in bed and not doing the things I want to do IS resting, damnit” to “no, seriously, you know it’s not”. And the thing is, I know. I really do.
I’ve been at this long enough to know when I’m pushing my body beyond its limits. A friend of mine said to me yesterday (I love her and I know it was with the best of intentions) that I need to stop letting my health stop me from not achieving what I want. And that if I want it enough, I would be able to.
If only it was that easy.
Honestly, my determination and desire to do and achieve all the things I want to is a massive double edged sword for me. To the point where I push through and push myself to a point where I know I shouldn’t because I’m bored as hell, worried that I’m not fulfilling my potential and not achieving or doing the things that I want to. I guess that’s why I still try and do as much work every day as possible. I need to feel like I’m not just sinking and ‘giving in’ to my illnesses.
I’m not that bad at physical pacing. I rest more when I’m out, take the wheelchair more often, and I’ve (mostly) stopped doing the whole ‘well, I’m using my energy being out, I might as well make the most of it!’ thing that pushes my body over the edge. What I really struggle with is when I’m resting at home. I’m pretty much always in front of a screen. I’m either studying, teaching myself to code, writing, talking to friends or bingewatching. Mostly bingewatching. My brain isn’t good at stopping. It never has been. It’s getting to the point now, though, where I am having to spend a few hours a day curled up in a dark room with no computer at all because everything just hurts too much.
In fact, I was at a loss for what to do today and so instead of resting I’m writing this blog post. Because I’m a grownup and sensible and aware of consequences. Go team me!
The thing is, I’ve got particularly painful gastritis from a dodgy probiotic I took a couple of weeks ago (I’ve got to wait until Monday to see my GP again to get tests once it’s too long for it to just be ‘acute’), barely slept and did some studying this morning. I can feel my body is at the point where it needs to just stop for a bit. But I’m bored. I’m so bored. I hate resting. I just…can’t sit here all day. I need to do something.
My stress levels are also through the roof at the moment. I think this last flare has mixed with my general concern about the future and I’m becoming increasingly frustrated about it. To mitigate this I’ve started a regular anxiety meditation and have spent the last few days practicing serious self-care, but I think the enormity of my desire to be well enough to go back to work is overwhelming me a little bit. And so keeping busy by trying to do things during the day is my way of coping. Unfortunately, I think it may be to my detriment.
So what’s to be done?
Well, there’s two ways of looking at this. Pacing, so that you avoid the boom and bust cycle that makes crashes worse, and resting. True resting.
I understand how to pace. I actually do it pretty well when it comes to activities these days. There’s some practical and helpful tips here that may be of some interest. A lot of people recommend keeping a diary or a spreadsheet of activity levels so you can see where you’re using your energy and make sensible adjustments. My friend Colin made us a fancy colour coded spreadsheet and we both said we’d track for a week. We only lasted a few days. It didn’t seem practical for the constantly changing things that we did. But I’m not a spreadsheet person. I hate spreadsheets. To the point where at my last job I was allowed to just write and then we had a project manager calling me up to ask me what I was doing so he could fill it in. I’m good at seeing and determining patterns in what I do. My old therapist told me I was the most self-aware person she’s ever worked with. So I have that going for me. I know when I should be doing things and when I shouldn’t. I’m lucky that I also know when I’m self-sabotaging and when I’m not trying hard enough. But honestly, my problem is mainly that I try too hard and end up hurting myself in the long run.
Where I’m falling down is true resting. And I know I need to be better and stricter about it, but I have a block for some reason. I genuinely think it’s because of the frustration I’m feeling at the moment (which, yes, I know only makes things worse), but I know that if I want to have a good chance at feeling better I just need to get over myself and do it. So I’m going to try. Promise.
Someone seriously needs to open a kind of country house thing for people with chronic illness to go and relax, get away from things and focus on feeling better. That’s not an effing yoga retreat. Like a convalescent home for excellent and fabulous young people.