Sometimes you have the kind of health blip where you just have to curl up in bed, turn off all the lights (even if you mostly live in the dark anyway) and hide under the duvet. And that’s ok.
I’ve always prided myself on my ability to ‘push through’. When I was younger, that was almost always to my detriment. Pushing through would come at the expense of everything else, and in my attempt to ‘work and live like a ‘normal’ *rolls eyes* person’, I would push myself so hard that I would inevitably crash for months at a time to the point I was unable to do anything at all.
As I’ve got older, I’ve got better at trying to work better within my limits, but the problem is, in order to do pretty much anything I want to do (work or socially), I have to push my body. It’s frustrating but it’s the reality of my life, and I have to make calculated choices about every single thing I do.
This means that I’m weighing up physical crashes with activities that still feel less that I know I’d like to be doing. It means that I have to work almost entirely from my bed, part-time, and can’t do the same things my colleagues do.
And sometimes, the emotional impact compounds the physical, and it all becomes a big mess of sad.
The other week, I headed up to Manchester to meet with my mentor and spend a couple of days following her around. Aside from the physical trial (heading to Manchester and back over the period of 2 days AND doing stuff), it was seeing all the things I could be doing and realising that my body just isn’t up to it that really hit me hard.
It’s something that I usually have to actively force to the back of my brain. Trying hard to be proud of all I do (including learning to rest – coz not doing is just as important as doing for someone with chronic illness) has been incredibly difficult, especially when I know it’s such a fraction of what I’m actually capable of.
In the last year, I’ve had a number of amazing things in my life that I never thought I’d have, but it doesn’t change the fact that I literally spend nearly all of my time alone, in bed, in the four white walls of my bedroom. And sometimes that just gets on top of me, especially when I’m having a hard time physically.
Knowing that for my health I need to stop and recover only compounds the issue. I get frustrated but am too tired to tantrum, so I throw something soft on the floor and yell “GRRR IMAGINE I’M HAVING A TANTRUM RIGHT NOW” because that’s just as effective, obviously.
My family usually give me 24 hours to ‘feel sorry for myself’, but this has been going on much longer and that’s ok. Looking after your mental health when your physical health is so precarious is difficult. Looking after your mental health when your physical health is so precarious that it causes your mental health to deteriorate is a whole other kettle of fish.
The biggest problem I have is that no matter how hard I try and no matter what I do, I can’t figure out a solution. And I hate that. Even my therapist is frustrated because it’s just a case of ‘getting on with it’, and sometimes I just don’t want to. I don’t want to push to the back how I’m feeling. I don’t wanna keep going and feel worse. I don’t want to push and try so hard to not produce or do things in the way that I could. I don’t want to feel like I’m not living up to my potential.
Living with chronic illness is like constantly grieving, especially if your health changes or deteriorates over time, as mine has. I started a ‘Real Job’ at the same time I got assaulted which really buggered me up physically, and I haven’t recovered from that 6 months later because I just ‘kept going’ after giving myself a couple of weeks when I was physically incredibly bad.
I’m grieving for all the things that seem within my grasp but just aren’t. I’m relearning the boundaries of what my body can do and figuring out the safest ways to try and push them a bit. I’m grieving my memory, I’m grieving the time when my pain wasn’t everywhere, I’m grieving the quality of my work, the quality of my life.
And sometimes you just need to shut down for a while and do that because even the people who are supposed to be able to help can’t do anything. Usually when you feel this ill, you go to the hospital. But there’s no point. You’re left in a limbo with so little support (from the medical side) to figure out how to live whilst trying to quieten the voices in my head that say ‘you could do so much more’.
So it’s about damn time I indulge those feelings. Because they suck big time and it’s totally ok to say that and feel that and hate it all.
And now, if you don’t mind, I’m curling back up in bed.