It’s been over a month since I’ve written here. It hasn’t been a good month and I have wanted, needed, to write and to put things into words but I haven’t been able to. Maybe 8am on a Saturday morning when I’ve been up since 5am after four hours sleep and work starts in six and a half hours isn’t the best time to try, but it’s the time when the words want to be written. So this is going to be pretty much uncensored stream of consciousness and it will flit between first and second person, because that’s what happens, and I will probably sound angry and crazy, but I promise it will end on a high (of sorts) if you stick around long enough to read that far.
As I said, it hasn’t been a good month. It has been below average. Leaving-the-house-once-maybe-twice-a-week kind of below average. Insanely-exhausted-all-the-time below average. Pain-that-I-can’t-even-describe below average. I am bad at putting this stuff into words. Work has been getting harder to cope with and I honestly don’t give a fuck at this point if anyone is reading this and thinking “At least you have a job” or “At least you can work” because, you know what? Fuck you if you think that, if you don’t grasp that for some people ‘able to’ is irrelevant, that necessity is all there is, because there is literally no other option for that person in that situation.
I have to work from home because I can’t reliably leave the house at a specified time every day (or any day). It’s just the way things are, so I have the job I have because I can work from home, part-time, and get through it. It’s a zero hours contract and for part of the year there is just no work to do, which is terrifying, but for some of the time I have an income which I can almost afford to live on. I usually say what I feel like I’m supposed to say about my job, that it’s not that bad, it’s ok really, I don’t mind it too much. Fuck that shit. 99% of the time, I hate it. It makes me miserable. I do a job that makes me miserable for a company that seems to view its employees as without value, as less than human. I have looked for alternatives and I am still looking, but when a job has to be something you can do part-time, from home, without early mornings or long hours, where time off doesn’t result in disciplinary action, and that still pays as close to enough as such a job can pay, options are limited.
I find it all kind of hard to deal with when work is the ONLY thing I do, as it has been recently due to me not being able to do anything else (I would say “work and sleep”, but I don’t sleep very much these days) and the ONLY thing I do has pretty much no positive aspects. It is reinforcement layered upon reinforcement of so many fears and frustrations and intense feelings of being completely and utterly devalued and it cannot simply be walked away from or avoided. When I’m not as physically wrecked, I can do other things outside of work that make me feel happy and excited and positive so I don’t dwell on how much work pisses me off. I find it easier to get through the shitty stuff when I have good stuff to focus on. When walking isn’t a thing I can do very much and going outside and seeing people are pretty much off limits, positivity is more difficult to maintain.
At some point over the last month, I basically lost my shit. There is no more pleasant word to describe it, really. I started having anxiety attacks which lasted longer and longer each time until I was in a heightened state of anxiety almost constantly, the entire time I was awake. Rationally I know that a lot of that had to do with the physical stress of being exhausted and in a great deal of pain all the time and not being able to rest when I need to – my body is a little adrenalin factory – but when it’s actually happening, and I’m also feeling down (understatement of the year) about things, it is very hard to rationalise. Or if I can rationalise it, it doesn’t seem to make any difference to what’s actually happening in my body and brain. There was a lot of crying, a lot of hyperventilating, a lot of resorting to old coping mechanisms that I’m not going to talk about here because I don’t want to have to put trigger warnings on my blog.
Because I couldn’t afford to take time off work and had to keep getting through every day, no matter what, I ended up experiencing something horrible that I’d not felt to that degree for a long time. I felt like I was two people watching each other – one was the terrified, panicking, crying, self-harming mess of doom and the other was calm and numb and analytical. God, this is hard to describe. I don’t mean that I literally believed myself to be two separate autonomous entities. It was more like having two completely opposing perspectives simultaneously, to the point where I could genuinely hold two contradictory viewpoints at once. Not like “I feel bad eating meat but I want this bacon”. More like “I have no control over anything and I’m completely falling apart and I don’t know how to put anything into words or express any of it or make sense of anything inside or outside of my own head and I constantly have an uncontrollable urge to rip myself apart BUT I know exactly why this is happening so I can put a lid on it and choose to feel nothing for as long as I have to, to the point where I kind of forget how to feel things”.
I’m going to interrupt myself here to make what I feel is an important point. All the stuff I’ve been describing, I know there is very specific terminology around it and I know that I haven’t used that terminology. That is a conscious choice on my part. Sometimes people find their way to my blog via medical search terms and while the things I’m talking about here are real and valid and honest, they are not the general topic of this blog so I don’t wish people to find their way here while seeking information about those things. I hope that makes sense. It probably doesn’t. Anyway.
One day, a very clear thought arrived in my head, like a beam of light cutting through fog, or a knife in the chest – “I am not a real person”. I can honestly say, that scared the living shit out of me. Not the idea that it might be true, but the fact that I’d thought it at all, even just in a fleeting way. Whatever little bit of my brain was still functioning rationally at that point was like “Whoa, you need to sort some shit out while you still can”.
Thing is, when I have months like this, it reminds me that no matter how much I want to not be sick, how much I try to not be sick, how well I look after myself, I am still sick and there is a possibility that I might be sick for a very long time. I have days and weeks and months when I am less sick, but I still have days and weeks and months when I am really, properly, can’t-ignore-it disabled as fuck. That’s just how it is. I don’t like it. I don’t want it. But it’s true. It is what it is and constantly living in a state of hoping, wishing, trying to make it go away and then falling apart when it doesn’t is not any way to live. Another quick “Fuck you” to anyone who tuts and sighs and shakes their head at me for being defeatist. This isn’t defeatist. It’s realistic. It’s honest. It’s living in the actual world, not indulging in a desperate string of self-delusionary tactics of distraction. One day I might get completely better and that would be amazing. One day I might get a bit better and that would be pretty awesome too. But also, I might not. And I need to be ok with that as a possibility.
So I made a decision that I was going to do two things that I’d been thinking about doing and planning to do for quite a while, but had been waiting for the right time to do. I’d been waiting to feel better (which I do sometimes, but then I don’t sometimes too). I’d been waiting to save up some money (which I can’t, because any time I do, work runs out and so does money). I’d been waiting until doing A Big Thing would feel less terrifying (which I’m starting to think it just never does, really). Fuck it though. There is no right time. Sometimes you just need to do A Big Thing (or two) and feel secure in the knowledge that at least something is changing and that is better than standing still. Doing is better than wishing and wanting and hoping.
First Big Thing. My husband and I have been planning to start a business for AGES. Due to not being in a position to take on any debt, it has to be self-funded. We had decided that, because of my health, it would be something that we started and allowed to grow as we had time, money and energy to facilitate that. It would be as low-pressure as starting a business can be and it would happen alongside paid employment. The important thing is, it would be a source of income (however small at the beginning) that felt worthwhile and positive. As soon as we decided to just go for it and we set the wheels in motion, I felt a weight lifting. The pressure in my head got a little less. With every step – registering as self-employed, creating our website, looking for the most appropriate bank account and insurance etc – I smiled a bit more. I still couldn’t really get off the couch for any length of time, but it didn’t matter. And it actually doesn’t. While my husband will be handling the practical side of the venture, I’ll be handling the administrative side. This is A Thing I Can Do, even when I can’t walk. Give me a spreadsheet and some numbers and my world becomes a good place for a while.
Second Big Thing. When I was 18, I went to university to study forensic psychology, something I’d wanted to do since I was about 12 or 13. About 6 months into my degree, I realised that while I was passionate about the subject, it wasn’t the ONLY thing I wanted to do to the exclusion of all other things. I didn’t feel ready for such a specific career path. I wanted to do other things, be other things, explore myself and my place in the world. So I did just that. Even after I became ill at 24, I kept doing that. I regret nothing. It’s always been in the back of my mind to return to studying, but I didn’t think it could ever be financially viable or physically possible with M.E.
Except it is. As of next February, I will be studying for a BSc (Honours) in Forensic Psychology, part-time through the Open University, with the assistance of a part-time fee grant (Scottish government, there are no words for how much I love you for making this possible). The degree will take six years and even though I had a minor “Holy crap, I’ll be 40 by the time I finish that!” moment, I calmed myself with the realisation that the time would pass anyway and I may as well fill it with something that I really wanted to do. The funny thing is, at the age I am now and in the situation I’m in with an illness that I may be stuck with long-term, there’s no fear. There’s no opportunity cost. There’s no pre-determined necessary career path, no pressure, no worry that I’ve chosen the wrong road or the right road at the wrong time. There’s just a love of a subject and an opportunity to immerse myself in it while still being able to work as much as I am now. And my shitty job is less important, in the grand scheme of things, than it was before I decided to take a couple of giant leaps.
This post is really long already and even if no-one has read this far, it doesn’t matter. It feels deeply cathartic to have just been able to express all this and put it somewhere outside of my own head. It feels good to share some positive news as well as all the venting. I feel relieved. There is a lot of relief going on right now. Before I stop typing and make another cup of coffee (work now starts in five and a half hours) I want to share one more thing that has made me happy recently.
In the midst of a month where staying upright and putting one foot in the front of the other has been insanely difficult, I managed to do it for part of an afternoon last weekend. I went to Pride with a group of friends and I walked the entire route of the parade. It was exhausting and painful and difficult. I went home straight afterwards and slept for a few hours and I still haven’t recovered, not even slightly, but I still did it. I’ve only been able to get out of the house once since, for a quick trip to the supermarket. I’ve had horrendous cabin fever all week because I’m still beyond exhausted from walking through town last Saturday. I discovered new muscles in my legs and pulled them. But I still did it.
There are few things in life as beautiful as being able to say “I did that awesome thing”. I want to be able to say that more. Sometimes I’ll still be saying “I have to do this shitty thing”, cause that’s just how life is, but I’ve made some big choices and it feels like doors have opened, even if I’ve had to hunt for them and kick them down.