Crashes, books, openness and acceptance

The crash-ness of the last few months still hasn’t lifted (bad news) but cause it’s been going on for a while I’ve sorta-kinda managed to find a rhythm with it for now (good news). Bed is where I’m spending most of my time these days and when I am up (by ‘up’ I mean ‘able to sit’) I have between six and eight hours when I’m able to do things a bit. Four of those hours are spent working from home and the rest of the time is when I fit everything else in.

The local charity I volunteer with has a big fire festival coming up at the end of the month (so excited!) so there’s been lots to do in terms of online stuff and social media (which I’m responsible for), which makes me happy and doesn’t require me to go anywhere or move about much. My actual ‘going anywhere’ has involved a few hours on one day each week with my lovely group of volunteers and I’ve even managed an extra couple of hours some weeks for additional meetings. Being able to get out of the flat once or twice a week has been amazing. Being sick and not able to go out much, as well as being a disabled person in a very much able-bodied-person’s world, can feel so isolating. It’s so good to be around people and be involved in something with such a feeling of community, even if it is just for a few hours a week.

It’s been a bit of a struggle trying to fit in ‘normal’ stuff that involves not-sitting. Showers have been an every-other-day occurrence and they’re absolutely exhausting. It takes about an hour to recover from standing up for ten or fifteen minutes so it’s like “Five minutes after getting all lovely and clean, I am now roasting hot and sweating again”, which is a bit annoying. Cooking is a thing that happens once or twice a week and even then it’s only quick food that doesn’t take more than about ten of fifteen minutes to prepare. Cous cous and sauteed mushrooms is my favourite munch right now and it’s so quick and easy to make! Housework is a total impossibility these days so I am endlessly grateful to my husband for doing ALL THE THINGS and keeping me fed. I honestly don’t know how I would manage if I was on my own. Like I actually don’t know. I wouldn’t be able to. Every day I take some time to go through in my head the things in my life that I appreciate and that list is pretty damn long right now.

I keep thinking back to a few months ago when I was able to go for walks and do yoga. At first, thinking about that made me sad and angry cause I’m not very mobile at the moment, but I’ve reached a place where I can feel hopeful instead. I keep reminding myself that there are peaks and troughs, crashes and periods of comparative remission. I’m at a low point right now but I know that it won’t last forever.

It’s really difficult not to feel frustrated when I’m not able to do things though. Frustration comes naturally. Turning that around and trying to find a place for myself in my current circumstances that allows me to feel productive and happy is more of a challenge, but I feel like I’m getting there. This is the longest crashy time I’ve had in ages and I still have those horrible moments of waking up at 5am in a complete panic that THIS IS IT and I’m going to be like this forever, but I’ve stopped pushing against those moments and started accepting them, sitting with them, letting them happen, then working through them.

“So it goes” has become my mantra lately. When I’m feeling angry or upset or stressed out, I remind myself that this isn’t forever, that there will be better days. I don’t know when those days will be, but there have been ups to balance out the downs before so I know that they will come again. In the meantime, I’m focusing on what I can do in the few hours a day that I’m able to do anything. And I’m reading a lot. Reading is a wonderful escape and Google Play Books has become a very good friend of mine. Not only are there regular eBooks, but there are lots of discounts happening all the time and even free books. FREE BOOKS.

Any other sick peeps out there who haven’t yet tried reading books on your smartphone, totally give it a go! It’s weird at first but I find that being able to hold a small, light device in one hand instead of an actual book (I have real trouble holding books open when I’m super tired and achey) makes so much difference, as does being able to read in a completely dark room on a dim low-contrast screen cause I seem to be really light-sensitive these days.

The other thing I’ve been trying over the last little while is being a bit more open about my condition in my every day life. I was never secretive about it or anything, but I did have a tendency to say I was fine when I wasn’t and struggle to accept invitations even though it was incredibly difficult. I don’t mean I’ve started inflicting my medical history on everyone who invites me to a party (cause that would be horrendous) but I have started saying “I’m not doing so well at the moment” when asked sincerely how I am, instead of saying “I’m ok” while struggling to sit up and hold the phone to my ear.

Instead of panicking about looking flakey and not knowing whether to accept or decline invitations, I’ve started saying “I don’t know if I can make it cause I’m having difficulty getting out and about at the moment, but I would love to be there and I’ll let you know closer to the time if I can come along”. To my utter surprise, people have been cool with this and haven’t actually stopped talking to me or decided that I’m an awful person for not being ok all the time. Who knew? (Maybe every sensible person in the world, actually, just not me).

Recently, a friend suggested I come along to her martial arts class cause she thought I’d enjoy it. I had an insta-panic about how to handle that, took a deep breath and said “I’m not able to do things like that cause it’s a bit much physically, but it sounds really fun. Tell me what it’s like” and we were able to have a chat about it without her feeling bad for bringing it up and without me feeling useless or like a negativity cannon.

I’m not saying I never feel crap for not being able to fun stuff that other people are doing or that I never have sad times when I miss out on something exciting, but I feel like I’ve taken a big step towards a place of acceptance. There will be better times and worse times and long drawn-out boring nothing-happening-cause-it-can’t times, but I’m pretty sure I can handle it.

Extra snuggly hugs to anyone else out there who is going through a crashy time right now <3

I did some things, two days in a row

So here’s a thing. Both yesterday afternoon and this afternoon, I was able to go out of the house for a few hours. I didn’t do anything particularly strenuous but I was moving around, being social, organising stuff and not just slumped in the corner. Right now I feel not so great. Things hurt. My neck, back and legs are generally achey and sore to touch. Getting comfortable is tough, but it’s not so bad that I can’t cope with sitting up and using my laptop for a while. I’m pretty wiped out but not moving-through-treacle exhausted.

I don’t have anything insightful to say about any of this. I’m just really happy to be feeling even just a tiny bit better than I’ve been feeling over the last few weeks. It’s too early to tell if this is an actual lift out of the recent crash I’ve been experiencing, but still, yay!

A parting gift of wise words

My parents came over to visit for a few days. Frustratingly, their visit coincided with some major relapse action so I was not in a good way. I so desperately wanted to be ok and do normal-person things, cause I only get to see my parents a couple of times a year and I miss them a lot. We did some stuff. We went out for dinner one evening, which I was able to do (yay!). I tried to go shopping with my mum another day but I ended up having a total crash, complete with an uber-migraine that still hasn’t gone away three days later. Most of the time, we just hung out and chatted. It’s lovely doing that and I appreciate it so much, but I would love to be able to go places and do things with my family and not feel like I’m dragging them down to my level of inactivity.

I forget that when people who don’t see me all the time witness me in full-on illness mode, it can be kind of shocking. As they were leaving today, my dad said “I know your life doesn’t always allow for it, but when you’re struggling and you can’t keep going it’s ok to just give up and stop. You don’t have to keep fighting all the time”.

Sometimes I need to be reminded of this. I know that somewhere along the way, somewhere amidst all the messages from the world that everything can be thought through or fought through, I have internalised this bullshit idea that I am not good enough unless I keep going! and keep fighting! and try harder! When you have an illness that is so often reacted to with the erroneous assumption that you just aren’t thinking properly or wanting enough to be well, it is difficult to remember that it isn’t actually that simple.

If anyone reading this is also in need of a reminder, here it is. When you need to stop, it is ok to stop. When you need to rest, it is ok to rest. You should not be ashamed of not endlessly being able to keep fighting and struggle on and be the ‘strong and inspirational’ kind of sick person that society tells you that you need to be to make yourself acceptable. Take care of yourself. You are important and worthy and loveable and loved, even at your lowest.

Sleep, or not, and frustration

There’s not going to be anything deep and meaningful about this post. I just need a little rant. More than anything right now, I would love to actually sleep. I doze off at night when exhaustion overtakes pain, sleep lightly for about three or four hours (because pain) then wake up again (because pain, again). Sometimes I’m able to drift in and out of sleep for the next few hours. Sometimes I’m not. Because pain.

The super frustrating thing is that I’m not even able to do nice relaxing things that, when my symptoms aren’t so severe, help me to sleep for a bit longer. I’ve attempted really gentle yoga, but it hurt too much to do and it hurt too much afterwards. I’ve attempted short, slow walks, but I don’t have the energy for that right now. Anything I do just causes more pain and makes everything worse.

I feel like a zombie and I know that this wheel will eventually turn and I’ll start to feel a little better again but this past couple of months has been properly dreadful. Coping with work, just getting through the day, is an absolute nightmare. I’m trying so hard not to feel unhappy, but it’s all really getting to me. I wish this wasn’t how things are.

Rules and fighting and getting by

In my experience as an individual, a part of society and a consumer of media, many people seem to assume that when you’re sick or disabled, different rules apply to you. They believe that you must be in receipt of help that they, as non-sick able-bodied people, do not get. They believe that excuses and allowances are being made for you that are not being made for them. They believe that you are supported in situations where they have to support themselves. This is not always or often, but only sometimes, true. Obviously it depends on the individual’s circumstances, but for many of us, different rules do not apply.

When I first became ill, I had to take time off work. I didn’t want to, but I had no choice because I couldn’t sit up by myself, never mind walk or drive or actually work. When I was diagnosed with M.E. and all the unpredictability the diagnosis came with, I was honest with my employer and I asked if there was an option to come back to work part time when I was able to. I was told that there wasn’t. I could either work or not work. There was no in between. I have since been told by a lot of people that an employer shouldn’t or can’t do this, but at the time I had no idea as I had never experienced anything like this before and I didn’t know where to turn for help apart from the union I had joined, who were of no use at all for advice or support as apparently I hadn’t been a member for long enough. That’s just the way it was. Deal with it. Rules are rules.

When I look back on this, I catch myself thinking “Why didn’t I fight?” and then I remember that the simple answer is I was already fighting every day. I was fighting to sit up, to get out of bed and crawl to the bathroom before falling asleep again for the rest of the day and waking up in agony.

I left my job because I had to and applied for Disability Living Allowance. My application was turned down. To this day, I have no idea why. I was unable to get an answer from anyone. I went to the Citizen’s Advice Bureau. I actually WENT there and I remember the experience as something like an acid trip with added pain and having to sit down in the street because I couldn’t walk any farther. People glared at me in disgust and passed in a wide circle around me. With the help of the very kind and concerned volunteers at the CAB, I appealed the DLA decision and was refused again. This was before the days of the ConDem government and their friends at ATOS. This was back when New Labour were rewriting the rules about what it meant to be sick or disabled.

When I look back on this, I catch myself thinking “Why didn’t I fight?” and then I remember that the simple answer is I was already fighting every day. I was fighting to sit down in the shower and wash my hair and drive five minutes to the GP surgery and walk the fifty-or-so steps over flat ground to my doctor’s office.

I investigated the possibility of applying for Jobseeker’s Allowance but I was told that I wasn’t eligible because I couldn’t actually work. I remember thinking “I know that”, but I was desperate and I didn’t know where else to turn. The people at the Jobcentre advised me to apply for DLA because there were no other options available to me. The same rules apply to everyone.

Before this, I had never encountered a difficult situation that I couldn’t work my way out of so I decided that I would simply choose not to be sick, decide not to be sick, behave as if I wasn’t sick. This is what we are so often told, after all. If you are still sick, it is because you want to be or you’re not trying hard enough to get better. If you want something enough, you can have it. If you fight hard enough, you can win. Illness is a battle with your own body and your own mind, or so we are told. I have always been stubborn and determined and self-sufficient and I truly believed that I could just not be sick and everything would go back to normal. This was not the case.

I looked for work doing anything that I would be physically able to do, but there were no viable options and money was running out, so I decided to go back into education because I would at least have income in the form of a student loan. My disabled students advisor was amazing and I had one tutor over the course of two years who was genuinely supportive. The rest treated me as though I was making excuses or being dishonest, even though I didn’t ask for extra help or extra time or anything that required any effort or consideration on their part beyond the acceptance that sometimes I wasn’t physically able to attend lectures but would always catch up by myself and turn in assignments on time. There were rules and if you were unable to follow all of them, you became a non-entity, unworthy of even being listened to.

When I look back on this, I catch myself thinking “Why didn’t I fight?” and then I remember that the simple answer is I was already fighting every day. I was fighting to drive across town and attend lectures and tutorials and turn in assignments and stay out of hospital.

After I finished my course, with an A as my final grade, I started my own business because it was my only option for work. Having been living on nothing but a student loan for two years (which was better than nothing and better than homelessness) I had no money, but somehow my photography business worked until it didn’t. Until the recovery time I needed between photoshoots became too long to work enough to earn the amount of money I needed. Until I was physically unable to carry my gear and arrange my equipment in my studio. Until I would spend an hour after each shoot shaking and sweating on the bathroom floor, throwing up from the amount of caffeine and questionable internet-purchased ‘energy pills’ I’d consumed to be able to work in the first place. Until I stopped being able to sleep at all, partly due to the pain caused by the physical exertion of working and partly due to the sheer quantity of stimulants that I needed to stay awake during the day. My health was my lowest priority because it had to be but there are rules for self-destruction too and when you realise that you’re following every single one of them, it’s time for something to change.

As luck (or something like it) would have it, I found a job that I could do. It was only part time but was done from a desk in an office and shifts were booked each week, so (in theory) I could work more when I was able to and less when I wasn’t. It didn’t always happen that way as the amount of work that was available didn’t always match up with my needs, so I worked when I could and had no money when I couldn’t. As luck (or something like it) would have it again, my employer started offering the option to work from home. It was still the same job but it was more manageable, although it was still a zero hours contract with no guarantee of work. When there is no work, there is no money. When there is work, everything else must take a back seat, including my health. Even zero hours contracts have rules and if you ‘choose’ to work on a zero hours contract, then following those rules is your ‘choice’. Ignore the fact that sometimes, for some people, choice is an illusion because the only alternative is no money, no food, no home, no anything.

I was, for a short period of time, in receipt of housing benefit which, as most people know, is all about rules. You must provide the following documents in the following format but the following date, even though they will be lost, repeatedly, and you will end up unable to pay your rent because of someone else’s negligence. Sometimes, you have to guess what the rules are because no-one will tell you when you ask, and even though you try to follow them, they will be changed at a moment’s notice. I found myself, on numerous occasions, having to go to the council offices in town to hand in documentation and forms because it was the only way I could be sure that they would be received and processed, and even then it often didn’t happen in the timescale which had been previously stated. It didn’t matter that I had to use public transport because I couldn’t park close enough to the council buildings and I couldn’t afford a taxi and it didn’t matter that I would collapse in the street from exhaustion, because there are rules and exceptions are not made for anyone.

I also received Working Tax Credits for a while, but this was not sustainable as it required me to know, a year in advance, how many hours I would be working each week and how much I would earn over the course of a year. This is basically impossible when you are sick with an illness that has fluctuating symptoms and are self-employed or working on a zero hours contract. There was very little room for error without being assumed to be intentionally committing fraud and potentially having to return money that I had already needed to spent on food and rent and heating. My life did not fit into the small spaces I was permitted to occupy by the rules.

I have been in debt and I have been bankrupt. Not because I was frivolous or irresponsible or bought lots of clothes or went on holidays I couldn’t afford or ignored future consequences in favour of immediate indulgence. It was because I was sick and didn’t have enough money to live on or the ability to make enough money to live on or access to help that I desperately needed and asked for and tried to find. Society says that I should be ashamed of debt and bankruptcy and I was, but I’m not any more and I refuse to be. I have managed to rebuild my self-esteem and stop feeling like I would be better off dead because I was a non-person anyway, treated with suspicion or dismissed as dishonest or useless or stupid or a failure. I wish things hadn’t reached such a low point, but the fact remains that they did, no matter how hard I worked or how much I tried and wanted and needed and believed and fucking FOUGHT.

Many people seem to assume that sick and disabled people are given things because they are sick and disabled. They believe that there is always support for us. This is not the case. There are many of us who have no choice but to live by the same rules as people who are not sick and not disabled.

Talking about this is not an exercise in self-pity. I don’t need to be reminded of all the good in my life because, believe me, I am fully aware of it and I appreciate it every day. I don’t want people to feel sorry for me or tell me how strong I am or how I’m doing so well for a sick person. I don’t believe that my problems are the worst in the world – far from it – and I don’t expect sympathy or even empathy. The truth is, I don’t even expect support any more. I don’t ask for it and I am no longer angry that it doesn’t exist for me. I just want it to be known that there are so many people living in the grey areas between the cracks in the rules because we have no other option.

When you look at us and catch yourself thinking “Why don’t you fight?”, please remember the simple answer is we are already fighting every day.

Stuck

One of my greatest blogging dilemmas is whether or not to write when I don’t really have a huge amount to say. Since my last post, I’ve basically been feeling frustrated as hell. I wanted to be feeling a bit better by now. I wanted things to have been swinging in an upward direction, however temporarily. But I don’t and they haven’t. I’m still pretty much stuck with hardly being able to leave the house and really struggling to do anything for any length of time that requires sitting up. It amazes me just how much I’m able to do while lying down or slumped against a pile of cushions (necessity is the mother of invention) but seriously…I just want to be able to make plans that don’t involve the words “maybe” or “hopefully but probably not”.

I have no words of wisdom or meaningful philosophy at this point. I’m just kind of bummed out. I know that having a condition with symptoms that fluctuate means that there are going to be some pretty low times, but when the low times happen I can’t help but being annoyed, especially when they last for this long. I’m being sensible, pushing myself a bit (necessity, again) but not too much, getting on with work at home, trying not to feel angry about missing out on things that I really want to do, endeavouring not to be driven too crazy by how much my entire body hurts, but urgh, it’s hard.

I’ve been toying with the idea of asking my husband to film what it looks like when I’m really ill, when I can’t move or speak and breathing is difficult because it takes up too much energy, but I can’t bring myself to record that and make it a real thing that I have to deal with outside of the times when I have no option but to deal with it. I want to be able to show people what M.E. looks like on the bad days because those are the days that no-one sees and the days that are the hardest to describe. But right now, I don’t feel like I have the emotional strength to dwell on things being that bad, because at the moment, they are that bad.

I don’t know. I don’t have much to say right now. I just want to not feel like this.

The month when I kind of fell apart but then some awesome things happened

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.