I can literally feel my body shutting down and I don’t know what to do except cry hysterically. That hurt my rib so I’m writing instead. I thought it might be helpful for some of you who are struggling with similar things to know that you’re not the only one and having these feelings of anger, sadness and resentfulness are totally normal and ok.
Yesterday was my birthday and I spent the day with my friend Lucy (yes, you’re mentioned on my blog again – I await the excited text!) eating, theatregoing, eating, chatting, walking and doing excellent impressions of Veruca Salt. Seriously, I play a precocious musical brat very well. Quelle surprise.
Today I went into town on the tube to have a meeting, lunch with my mum, and then went to buy a new pair of glasses. By the time I got home my right shoulder was killing me (because I stupidly used a bigger bag than I should have), my knees were starting to buckle, my stomach was killing me and I had a massive headache. Within a few minutes of “stopping” (read: getting into bed) I felt my body do the thing it does when I finally stop pushing and let it rest. It just crashes. I can feel it happen. It’s like the life force is slowly being sucked out of my body. I spent about four hours lying flat on my face in the pitch dark because I couldn’t stand any light or sound. Except when I realised that Serial was back and I needed to listen to the first episode. It was excellent, as usual, but my head hurt so much I kept drifting in and out.
On top of all of this, I had something a few days ago that I think was off, and since then I’ve been suffering from stomach pains that I haven’t had in over a year. A few years ago when a bunch of my newer problems started my digestive system pretty much stopped working and I couldn’t eat anything. The pain was almost at that level. I’m hoping that it goes away soon, especially because I have worked so hard and have been (relatively) strict on a pretty restrictive diet to help me be able to eat again. In fact, I’d almost forgotten about stomach pain entirely, it was such a non-issue. I know I’m probably overreacting, but I’m really worried that (because my body is stupidly sensitive and one bad thing can cause problems for a really long time) I’ve got more problems to deal with now on top of everything else. On the plus side, there’s always that silver lining of being glamorously slim as a result.
The thing I find so weird is how I can get on with things through sheer force of will. I can push myself to go out and do things and manage and cope(ish). I can run off of adrenaline and be out in public and stuff. I can keep going. I can commit to doing things and then forcing myself to do it. Of course, that’s only if I’ve rested up before. But you know what I mean. It’s so weird how my body seems to find that capacity to do things. It’s just the payback. Within such a short time of stopping. I remember when I was working at Virgin, I told them that if I was in the office I want to be going from meeting to meeting. I need to be constantly busy. If I wasn’t, I’d go for a walk or do something, anything, because I knew that as soon as I stopped my body would crash. And crashing really isn’t conducive to anything. Again, I know it’s the whole boom/bust cycle, but sometimes just to be able to get on with things, you need to push. If I didn’t push, I’d do nothing. And aint nobody got time for that.
At times like this all I want to do is cry. I feel like I spend my life resting for small activities and the rest of the time recovering from those activities. I’m in so much pain that I can barely put it into words. I want to be sick. I want to scream. I nearly threw my laptop at the wall but not having a job means I can’t really afford to replace it. God, being ill ruins everything!
I’m fed up. I keep pushing and keep trying to do thing, and I manage to do them pretty well, but the payoff is often me feeling absolutely horrific. It’s no way to live. I try to stay as positive as possible. I stretch (well, the kind that us EDSers can do), I meditate, I’m (mostly) ‘kind’ to myself (although I have way too high expectations of myself, apparently – I don’t see why I should have to lower them – well, I do, compromises and being realistic), I (mostly) eat well, I try and exercise and I work really hard every day at doing all the things that I should be doing to try and feel better and get on with my life. But my body doesn’t seem to care. I know that’s the nature of chronic illness, and I hope that you can agree from reading my blog that I generally try not to be a massive negative Nancy and get on with things as much as possible. But sometimes it’s all way too much and I fucking hate it and want it to stop. Because I can’t even sleep through it. When things are as bad as I feel now, I can barely do anything, let alone things that distract. I feel like a brat, but all I want to do is stomp and scream that it’s not fair. I’ll get over myself soon enough, but I’ve been dealing with this stuff for nearly two decades and it’s fucking weighing, man.
The hardest thing is knowing that there’s very little that can be done. I’ve seen all the specialists, tried all the meds, done all the things. It’s pretty much up to me to just get on with it. I’m lucky to have the support of great family and friends (as well as all the people that read my blog) but it doesn’t change the fact that essentially I just have to wait for my body to get over itself and decide to give me a little bit of respite.
On the plus side, I happen to have an Ocado food delivery coming in about ten minutes and I have some granola, almond milk and berries in there. It literally took me two hours to get out of bed to go to the loo, so cooking anything is totally off the table. I also got a new book that is supposed to be hilarious. It’s called “Look who’s back”, and it’s about Hitler coming back in 2011 and his hijinks. If anyone has any excellent cheery-uppy books they could recommend, please leave them in the comments!
So yeah, I guess there wasn’t really much point to this post, but I needed to do something rather than cry right now. Le sigh. I do feel calmer. Yay for cathartic blogging. All I can do is end by saying that I’ve learned that feeling like this isn’t a sign of weakness. It’s totally normal and understandable to struggle. We’re often expected to portray an insanely positive side of everything on social media, and while I agree it’s important to share how I manage to cope, I strongly believe it’s really important to share when I’m struggling too – because it happens to everyone.