“I’m sick and tired of being sick and tired.” Yeah, that pretty much sums it up. I am not dealing with my Christmas relapse, or recovery setback, or whatever one calls it. When you’re on a long recovery and finally feel like your head is starting to be above the water, life is starting to have a feel of normalcy, you’re back to work (part-time, and it’s tough, but still, beats 7 months completely off work) and you feel like the end of the tunnel is in sight, a few more months, all the efforts and frustration are paying off.
And then, a crappy sequence of events, some under my control, some not. Having to abandon my guests at the table on Christmas Eve. Reaching the end of my two-week vacation and thinking “there’s no way I can go back to work on Monday, I’m in worse shape than before my vacation”. OK, add another week. Reach the end of that one, and more crap (literal crap, threatening to engulf my coworking space) accumulates, so yeah, guess we had better add another. And another. And another.
When does this stop?
In the end, I was off nearly two more months. I was able to crawl back to work three weeks ago, but of course, bad timing: I wasn’t expecting to be out of commission in February, I was expecting to be “nearly fine”. So I had days of training planned. A singing workshop. Cancel? Maintain? Use vacation days? Try to compromise? Never mind the details – the cycle of frustration continues. I can see I’m not yet back where I was at in October. I feel like I keep lowering the bar, and I keep hitting the wall that tells me it was still too high.
At some point after my accident, I told myself “OK, this will take 6 months to a year of my life. I’ll deal.” — now, in addition to being less well than I was 3 months ago, I have to face the fact it’s going to take longer than that. Longer than that to be back to work with my usual workload. And worse, I’m understanding that “back to normal work days” is not going to be the end of it – but the start of what comes next. Reconstruct the rest of my non-work life. Falls at judo? Not before I’m properly back to work, for example.
Right now I think I managed to get myself to judo once since my Christmas crash. I haven’t been back to my singing rehearsals. I’ve put most of my social life on hold. I keep saying “no, no, no” to myself.
Of course, I wouldn’t be painting a fair picture without mentioning everything I’m figuring out. I’m learning a lot. The importance of rest, the importance of sleep, the importance of going on a daily walk. The importance of not pushing myself, of saying no, of making cancellable plans, of leaving things on the back-burner. Yeah, I was doing that before. But this is a whole other coat of paint.
I’m bored, I’m frustrated. I miss my old life. Everybody is understanding, and I’m so grateful for that. Everyone gets it: health first, rest first, listen to your needs and limits, take it easy. But the problem is I don’t want to. I keep having to fight myself to not overdo it.
This afternoon I came home early from my singing workshop. Skipped the afternoon. I need to be able to work tomorrow. So I skipped the afternoon. Everybody was super supportive about my decision. Except for me, that is.
After a quick tour of the garden with Oscar (he’s still hanging in there, although he had two seizures this last week – we increased his meds) I did a bit of my jigsaw puzzle but it was quickly clear that even that was too much for my poor brain. So I flopped on the couch, wrote a bit in my journal, and lay down and closed my eyes, because I felt tired, brain a-buzzing.
And this is what I realised: needing to rest feels like punishment to me. It makes me miss out on the fun things of life. It feels like a failure in self-management. I overdid it again. And of course, as all this is in the “invisible illness” department, I get hit with a bout of imposter syndrome every now and again. Am I really that incapacitated? Am I maybe not as unwell as I think? Am I confusing tiredness with lack of motivation, a moral failure? That’s the story of my life regarding tiredness, by the way: I have spent decades (hi, undiagnosed ADHD) interpreting tiredness as lack of willpower or motivation. Pushing myself through it, because there’s no objective reason to be tired, right, so that can’t be it, it’s probably an excuse I’m giving myself because my mood is down or I just don’t want to face something that’s a bit uncomfortable.
The result is that today I really struggle to tell the difference between lack of motivation, where it can make sense to push oneself to get going (especially with ADHD) and tiredness, where it is absolutely not a good idea to push oneself (especially with post-concussion syndrome).
I’m fed up of having to manage all this. Fed up of crashing, fed up of making mistakes and forgetting things, fed up of brain bugs, fed up of not being able to do the things I enjoy, fed up of having to pay so much attention.
And all this, whilst being pretty much certain that I will make a full recovery. This is still what a typical recovery pattern for post-concussion syndrome looks like. The timeline is uncertain. But the destination is pretty well known. I feel extremely lucky that all this is expected to be temporary. That I will recover. That is not the case for people living with chronic illnesses or disabilities. It’s a different can of fish, but my experience this last year has clearly given me a greater understanding of what it is like to live with limitations that are “not expected” by the world around us. It sucks.
So, this is me being fed up with all this. I am out of patience. I am tired of the frustration. I’m sick of having to hold myself back. I want to fast-forward to when all this is done with.
I wish I were somebody who liked naps and idle time. Really. It would make things so much easier if when I felt tired, I could go “ooh lucky me, I’m allowed to take a nap!” — but unfortunately, my brand of hyperactivity pulls me clearly in the opposite direction. I want to do, do, do, and do more.
Taking care of myself is a difficult task. It is not easy. It actually takes a lot of energy. A lot of energy to not do. To stop. To be cautious. To say no – to myself, mostly. To watch the days and weeks and months go by and the pile of pots on the back-burner get larger and larger.
Here I need to insert something hopeful or optimistic or reassuring because I don’t want you to worry about me. I’m not going to stop doing everything I can to ensure my recovery goes as well as possible. I’m lucky to be in good medical hands. But I’m fed up. And right now, if you want to be supportive, I think that is what I most need recognised. How frustrating and discouraging it is that it’s taking so long, that I can still do so little, with March 17th just around the corner. This is not where I hoped I’d be.
