A couple of weeks ago, when I was still in St Helena, I climbed what I am considering a mountain. Sure we drove halfway up and walked the rest, but even so, I climbed way further than I have climbed in the last few years. Even two months ago, walking to the supermarket sent me to bed for two or three days. So, as you can imagine, this is a huge success for me. It finally feels like I am coming out the other side of my epic, two-year crash. So of course, I am feeling very jubilant and excited about it. But these are not the only emotions I am feeling – which might come as a surprise to some. So let’s delve into some of the mixed emotions I am feeling at my seemingly improving health.
Excitement
Okay, let’s start with the most obvious thing. I am really excited to be feeling stronger, to have a larger energy packet and to be able to do more things. Some of the hardest things for me about being sick are the intense loneliness, the fact I don’t feel like I achieve anything worthwhile, and the lack of rootedness in the city I live in. Now that I have some more energy, I am doing my best to try and rebuild some networks of friends and get a connection back with the city I live in (difficult with COVID still around, but easier when you have more energy). And that is exciting. As a naturally quite social person, it’s just so nice to feel as though there are new projects and connections on the horizon – after a few years of feeling powerless to change anything.
Fear
This is a big one. There are a lot of things I am afraid of, or nervous about, and perhaps the main one is that my improving health won’t continue; that now I am back home, with all the stresses of caring for myself, money and Covid, that my health will once more decline, and the newfound hope for some months with more energy will be dashed.
And, even if it does continue, what if I overdo something, out of excitement, and set myself back again? It’s so easy to get carried away and do too much – and I really don’t trust myself not to do that. The more energy I have the more reckless I become, and I know that about myself!
I have spent the last two years with very little social contact, met very few new people and, as a result of needing to be pushed in the wheelchair, I haven’t even been out very much by myself. Much as a lot of people found when they came out of strict lockdown, it is scary to be faced, suddenly, with the need to talk to new people. Equally, it is scary to throw yourself into new situations, especially in a language in which you aren’t that comfortable. And when you think that the longest lockdown in the Netherlands was maybe three months, you can imagine that coming out of at least two years of that sort of lifestyle is somewhat of a shock, to put it lightly!
Am I just lazy?
One of the questions that runs through my head a lot when I have an upturn in health, is whether I am lazy and this is all in my head. Why is it that when I am feeling happier I have more energy? Should I just be getting therapy and going running?
I do know that it’s ridiculous to think these things, and they have very simple answers. Frustratingly, when I have more energy and am more able to do things and see people, I am happier. That’s not such a shock. And it’s not like, now that I have a bit more energy, I am magically cured: I still have daily migraines, post-exertional malaise etc. I am still sick. I think it just comes from years of ME being portrayed as “yuppie flu” and being told by doctors that I could be cured if I didn’t imagine myself to be sick. Even years into having ME, I still question my reality, especially when I have a sudden increase in energy, despite the fact I am, to anyone who knows me, very obviously still sick. And when I have more energy I question this more intensely.
Should I be looking for a job?
The other big question that plays on my mind is when I should start looking for work. In the last month, I think I would have had enough energy to work one day a week, in the right job. But it’s so hard to know if this health peak will last. When and how will I know if this is a random good month, or a new energy baseline? The last time I got a regular job on a health peak, I made myself so sick working that within six months I had been forced to move back in with my parents, for a while. And whilst I need the money, I really don’t want that to happen again!
Navigating around these issues is really difficult when your health begins to get somewhat better. When should I start working, how often and at what job? Add to that, I am a 27-year-old with very little on my CV and an illness that many don’t understand (and for me, personally, also living in a country where I am not fully fluent in the language), finding work is a very daunting prospect. Having access to more money, however, is a very exciting prospect – which is the flipside.
It’s a big change
I think what I am trying to say is that sudden changes in health can be difficult to adapt to and navigate through; and acknowledging this does not mean I am not grateful for it.
In the space of two months I have gone from a weekly average of about 5,000 steps, to walking 4,000 to 5,000 steps a day, on about half the days of the week. Unsurprisingly, I am going to be facing new challenges, and big changes in what I can and cannot do.
That said, I know it’s okay to take time to adjust; to wait and see if this improved health continues; and to feel scared – even when the changes themselves are positive.
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