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 want 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.

Explaining pain

Describing how much something hurts has always been a problem for me. I’m not good at it. The last couple of weeks have basically been hell on earth. The whole “working extra hours to make up for not having had any work available to do for a while” situation is pretty horrible. I’ve reached the point where I can’t do anything in a day apart from work and sleep. Well, not sleep as such. Rather, be horizontal while my body does its best to prevent me from sleeping by feeling like my skeleton and muscles are trying to climb out of my skin. When I compare this to even just a few weeks ago, it disturbs me how much and how quickly things change.

During that few weeks ago, there wasn’t as much work available so I was working fewer hours and shorter shifts. I was able to go out for walks some days, do yoga almost every day, go to meetings and rehearsals for Beltane Fire Festival and have a brain that functioned during (most of) the rest of the time I was awake. I was also able to sleep at night, at least for three or four hours at a time. I didn’t feel ok by a long shot (I have no point of reference for “ok” any more anyway) but I was able to do these things even though it was really tough going at times.

Two weeks of longer work days later and I am profoundly exhausted, with a body in constant revolt. I can’t sleep for more than an hour at a time and I usually only get three or four hours sleep a night because my back and legs hurt so much that genuine rest becomes an impossibility. There has been a lot of Deep Heat, a lot of frustration and a lot of crying. There have been a few times that my husband has found me curled up in a ball on the couch and asked what’s wrong only to be met with me bursting into tears and gasping “I can’t” over and over again, because those were the only words I could find. Everything is a blur. Nothing makes sense.

The thing is, when I’ve tried to explain how bad the pain is, I get stuck at “It’s really sore”. On the inside, I’m screaming. Constantly. There is a cacophony of violent explosions accompanying every moment of every day to the point where I am a mess of adrenaline and insomnia, triggering panic attacks because the pain won’t stop, won’t ease up, and nothing helps. It is genuinely terrifying. It’s kind of making me crazy. But all I can put into words is “It’s really sore” or “My legs hurt” or “My back hurts”. How much? A lot.

I’ve never been able to find the words to express levels of pain. When I was a child, I broke my right arm a couple of times. I was simultaneously adventurous and accident prone – a worrying combination in a small human. I don’t think I ever cried, even the second time when the break was so bad that I needed an operation to fix it. My mum remembers the doctor at the hospital poking and prodding my arm (I’m sure he was doing something more scientific than that, but we don’t remember the details), asking how it felt. Apparently I just sat there calmly, white as a sheet, and quietly said “It’s ok, I think”. It was far from ok, but there was a disconnect in place between my body and my brain. I didn’t know how to explain the way it felt that the bones inside my arm were in the wrong place.

When I was 15, I broke my leg. The break was somewhere in the midst of the workings of my knee so it didn’t show up clearly on an x-ray and the doctors didn’t actually realise it was broken for about three months. In the meantime, I had been walking around on it, in excruciating pain, but still walking. I seem to lack the internal mechanism that makes people stop doing things when a part of their body is causing them agonising pain. I sort of just keep doing things. It’s like the pain and the doing of things aren’t related. When it became apparent that my knee was not getting better, I was referred to a specialist who moved my leg in uncomfortable directions and asked how it felt. I remember saying “It doesn’t feel…right. It’s weird” because I didn’t know what else to say.

Two weeks ago, I hurt my wrist moving storage crates. For a few days, I couldn’t move my hand at all. It was bruised and swollen. I had neither the energy nor the time available to go to the hospital to get it checked out (taking time off work to do this is not something I can afford right now). I promised my understandably worried husband that if I didn’t regain any motion in my hand in a week, I would go and have it looked at. Thankfully the swelling and bruising has gone down and I can move my hand again, but it still hurts. A lot. Except I don’t know if it hurts a lot like a thing that is healing but still hurts, or if it hurts a lot like there’s something seriously wrong. I can’t tell.

Having M.E. has widened the chasm between how I feel and how able I am to express how I feel. I can talk about it in abstract terms, as I often do here, and I can talk about the effect that physical symptoms are having on my ability to do things (like sleep at night and stay sane) but I still get stuck at “It hurts” when trying to articulate physical sensations. Contrary to what you may assume, I am reacting with neither denial-induced bravado nor admirable strength. My strange relationship with pain is a genuine one, with all its confusion. It’s like the feeling part is separate from the thinking part and they don’t share a common language.

In an attempt to apply some sort of logic to the whole thing, I checked out one of those pain charts that helps you rate the severity of pain from 1-10. This did not help. I couldn’t get past trying to be objective about it and thinking stuff like “If a shark bit my leg off, that’d probably be a 10 so maybe the way I’m feeling isn’t that bad”. Even when I was screaming into my pillow and shaking because of the blasts of adrenaline coursing through my body from HOW UNBELIEVABLY SORE everything was, all I could think was “Well, it’s not a shark bite and I’m not dying, so I guess it’s ok”.

I have no useful conclusions to draw here and this is all pretty stream-of-consciousness because I haven’t slept properly in a while and I have at least one more week of this level of activity to get through before there is likely to be a drop in work availability again and I go back to a “not enough money but less severe symptoms” situation. I need another job so much. I am looking. I am ALWAYS looking. But it’s not easy to find something with a flexible schedule, fewer hours and more money. Just keep swimming. Just keep swimming…

I feel it’s worth explaining here that simply taking time off work or working fewer hours is not an option, as I do not get paid unless I am actually working. Rent and bills don’t pay themselves, people. Sometimes, however unfortunate it may be, “lack of any other option” is a valid answer to the question “Why?”.

Things that change and things that don’t

The theme of my thoughts this past while has been fluctuation, as my last two posts might have not-to-subtly hinted at. My 5am pain-induced wake-up calls this week (thank you, body) have been accompanied by the kind of free floating cognitive weirdness that only happens when I wake up after not enough sleep and know that even if I manage to doze off again once the painkillers have done their thing, I still won’t get enough sleep to adequately make it through the following day without relying on coffee as necessary fuel because I have to stay upright with a functioning brain until I finish work at 9pm.

Slightly off-topic, but I feel like I need to address my consumption of coffee here for the people who tut and shake their head and point out that you just feel more tired when the caffeine wears off. I know. But sometimes I have literally no other option than to do whatever it takes to not fall asleep in the middle of a shift. So shut up, coffee nay-sayers, and be happy that your life doesn’t not necessitate the use of beverage-based stimulants. Mine does. Deal with it.

Ok, back to fluctuation and 5ams. The annoying little part of my brain that sometimes dwells on minor but frustrating things is still reeling a bit from catching up with a friend who I hadn’t seen in a while and being asked, in (I assume) the most loving and genuinely interested way, why I haven’t yet done this particular thing that I’ve been planning for a while but that is wholly dependant on me having time, energy and money to do. I tried, through a patient smile, to explain and justify and segue neatly into talking about something else because I felt horribly awkward, as I always do when I have to vocalise (yet again) all the reasons why M.E. makes a person operate on a different type of schedule from a healthy person.

Thing is, when I consider stuff that I want to do or plan to do (as opposed to stuff that I absolutely need to do to be able to pay the rent and bills), it rarely happens in terms of “I’ll do that thing before work, then this other thing after work, then this different thing tomorrow”. It’s more like “I have a day off on Saturday so I’ll do that thing then and the rest will have to wait until my next day off”. I plan in blocks of weeks, not days, because I have to. It’s not that I’m always unable to do something-as-well-as-work in a day, just that I’m generally not able to do anything big. And if I do, it’s a one-off because that level of activity is not sustainable.

Take this week, for example. On Monday, I worked an evening shift. I was able to go for a walk after work, which was lovely. I felt all “Hey, I got this!” on Monday. On Tuesday, I worked the afternoon and evening, logging in at 1.30pm and finishing work at 9pm. I felt alright afterwards, so I went for a walk, which does incredibly therapeutic things for my back and legs which do not like sitting up for seven and a half hours at a time. On Wednesday, I woke up, worked the afternoon and evening, then went back to bed. I couldn’t do anything else. I was exhausted. On Thursday, I had to go out and pick up a prescription before work, then had a full day at work and went to bed at 11pm, two hours after finishing my evening shift. This is the equivalent of a person who does a 9-5 job going to bed at 7pm. On Friday, I had a dilemma. I needed to go food shopping, which would definitely be pretty horrific to attempt after another full day of work, but which I might not be able to do at all on Saturday because my body was close to reaching the point where it would not do anything that involved walking. I opted for horrific rather than not at all. Then I slept for 13 hours and spent Saturday pretty much immobile, aching and exhausted (but still productive, because laptop and internet).

In the space of a week, I had a day when I could work a bit and walk, a day when I could work a lot and walk, two days when I could do nothing but work, a day when I worked then did another Big Thing because I had no option but to do all that in one day, and a day when I could hardly move. Today’s level of activity is yet to be determined, because the pain alarm woke me after 6 hours sleep. Fluctuation. My work schedule is pretty similar this coming week, so I’m probably set for more of the same. Or more of the different, as it actually is. I have some fun stuff planned for the next few weeks, but it’s ALL happening at the weekends, and it’s a do-one-thing-per-weekend kind of situation.

So when someone says “That thing you were talking about a while back – have you done it yet?” my mind goes into overdrive drying to figure out a way to explain why I haven’t done it yet, or why I’ve been working on it in small chunks which don’t look like progress to the outside world but really are to me. And then I wonder why I feel the need to explain this and why I can’t just say “No, not yet” and let it go, letting people think what they want because really, it shouldn’t make any difference to me what anyone thinks about anything I do or don’t do, or when I do or don’t do it.

Today, I’m allowing myself to focus on the things that don’t fluctuate, the things that are consistent and secure and comforting. The white cat that squeaks and purrs and nuzzles his back into my body in bed until I put my arm around him because he likes to sleep like a human. The black cat that makes a point of sprawling out across my phone or my book or the remote control for the TV to make sure that she gets all my attention without competition from inanimate objects. The goldfish that dart to the top of the tank when I get up in the morning, because they know that it’s time for breakfast. Speaking on the phone to my parents and forgetting for a few minutes that they live in a different country. Seeing friends who talk about science and art and politics and religion and not about sickness because, to them, I am not defined by a thing that happened to my body without my permission.

And my favourite non-fluctuating, consistent, secure, comforting thing. Standing on my tip-toes to hug my husband, who is more than a foot taller than me, and him wrapping his arms right around me and in that moment I feel small, but in the best possible way. I am reminded that some people understand and whether I can walk or not, or sleep for four hours or thirteen hours, or am smiling because I can do things today or crumpling into a broken mess of tears because everything hurts so much that I just can’t, I am loved and accepted and believed and understood and supported…and sometimes, that is all I need.

M.E. Awareness Day and that time I climbed a hill

The day I climbed a hill

May 12th is M.E. Awareness Day. Perhaps I should be wearing a blue ribbon, or covering my Facebook page in blue ribbons and appropriate hastags. Maybe I should have one of those coloured wristbands that say “Look! I support this thing!”. Perhaps, as a person who actually has M.E. and is therefore already painfully aware of it, I should be fundraising or engaging in some form of public activism. Maybe I’m a being a bad sick person for not doing all of these things, for not spending today pouring my energy into educating the masses about myself and my life and the lives of other people with this condition and how there is so little support available for us and how hopelessly difficult it is to even ASK for help because illnesses with fluctuating symptoms are so often ignored, trivialised, misunderstood and forgotten about, because people who have those illnesses exist in grey areas and fall through the cracks time and time again.

It’s not that I don’t want to do those things or don’t care about them. It’s just that having this illness has taught me that sometimes the best thing I can do for myself is to prioritise my own health, my own body, my own wellbeing. So I’m writing this, partly for the few people who may see it, but mostly for myself, because there are SO many things that I only say here, in this context, in a place where I don’t have to preface accounts of my experiences with a detailed description of what the last nine years has been like and what it all means. When I think about M.E. awareness, I think about all the things I don’t say, all the things I don’t talk about, because talking about them in non-M.E.-related spaces, in every day life, takes too much energy and too much effort, and causes too much stress and anxiety and frustration.

Having been off work all week (due to the company I work for on a zero hours contract not having any work available for me to do), I have been able to sleep when I’m tired, rest when I need to, wake up naturally, get up when my body is ready to, arrange every aspect of my existence around how I feel and what I’m able to do at any given time. In short, I have been able to prioritise my health and my needs – a strange silver lining to living with the intense fear caused by financial insecurity. I like silver linings. I look for them all the time. I usually manage to find them.

So, the other day I climbed a hill. It was not the biggest hill or the steepest hill but it was a hill. I walked slowly and I stopped often to rest. I was exhausted when I reached the top, but I reached the top. I sat down next to the reservoir I had climbed to and savoured the view I had earned (see picture above). I dipped my fingers in the clear water then I wandered through the forest for a while, mud clinging to my bare ankles, twigs working their way into my hair. I met some free range sheep and their lambs and big fuzzy bees buzzed lazily around my head on their way to the next patch of flowers. I cut my finger on a fence that I was leaning on because walking got too difficult for a moment and my calf muscles ached and I felt a familiar stab of envy when people on mountain bikes whizzed past me and when the clouds cleared and the sun came out, the light hurt my eyes. But all I could think was This is the biggest hill I have climbed in nine years and it is INCREDIBLE.

Seriously, I cannot put into words what a Big Thing this has been for me. If you read my last post which details how different a really good week, an average week, a below average week and a pretty dreadful week are like for me, you will notice that climbing a big hill is not mentioned in there once. It is an unusual occurrence (in fact, a unique one so far in my non-career as a person with a chronic illness) and when I managed it, it felt like cause for celebration. It felt like something I wanted to share. Except I didn’t share it. I didn’t talk about it. Because I knew that every good thing I felt would be shattered into a million pieces as soon as just one person inevitably asked “So are you feeling better?”.

Better is such a loaded word to a person with M.E. When someone asks if I am feeling better, my mind goes into freefall just trying to create a point of reference for an answer. Better than yesterday? Better than at 1am when I cried myself to sleep because the pain in my back and legs was so severe and unrelenting? Better than at 5am when I woke up, crying again, to take pain killers? Better than the last time I couldn’t get out of bed by myself? Better than a couple of months ago when I went camping for a night and it was beautiful sitting under the stars with my friends? Better than that alright week I had a while back when I was able to work 26 hours at home over the course of 5 days and still go for walks in the evenings? Better than that time I ended up in hospital because I was so profoundly exhausted that my body freaked out and went to war against its own cells? Better than when I first got sick and for 6 months I could only stay awake for an hour at a time? Better than before I got sick and used to get up and go running in the morning before work? Better than a healthy person? Better than a person with terminal cancer? Then I awkwardly mumble something like “I felt alright that day” and change the subject because continuing the conversation about how I’m feeling is just too much to cope with and I feel ungrateful because it could be so much worse.

The flipside to “So are you feeling better?” is a more accusatory statement – “So, you’re feeling better?”. Almost a question, but not quite, and almost impossible to respond to because of what isn’t said afterwards, but is thought and referred to later when people selectively remember that one day I climbed a hill or that one week I worked longer hours than usual or that one time I went camping or that one day they saw me wearing make-up and pretty clothes and smiling a lot. So, you’re feeling better…why can’t you get a job that doesn’t involve working from home? Why do you have problems with money all the time when you’re able to do these specific things occasionally and should therefore be absolutely fine every day and able to work full time? Why do you still say you have days when you can’t work or walk or feed yourself? Why do you need to take the lift instead of the stairs? Are you really THAT sick? Are you really sick at all? Couldn’t you just decide to be able to do things every day? Shouldn’t you be trying harder to get better? Is this all just in your head? Are you lying or exaggerating or delusional? Sometimes these things are said out loud and maybe when people say “So, you’re feeling better?” they don’t always mean it with an underlying accusation, but the thing is, when you have M.E. you become conditioned to hear unspoken assumptions because you have heard them spoken so often and they have broken you down little by little over the years.

I have become accustomed to separating my life into areas where it is not problematic to talk about the things I can do, like this blog and conversations with close friends, and areas where it most definitely is problematic, like Facebook or general chat with people who know me a-bit-but-not-really-well. I have responses prepared for when friends I haven’t seen in a while ask “How’s your health?” and I smile and say “Same as usual, good days and bad days” then talk about something else. I have responses prepared for when people who don’t know anything about M.E. ask “If you’re sick, how come you’re able to do (insert random task here)?” and for when people say “Have you tried (insert long distance science here)?”. I also have a response prepared for people who understand, people who get it, when they say “You climbed a hill? That’s amazing!”. I say thank you and I hug them and I appreciate the hell out of them for not assuming anything beyond my truth in that moment.

So that is what M.E. awareness means to me today. It means not having to explain or justify or educate. It means being able to celebrate an achievement without every aspect of my existence being judged. It means being able to embrace every part of myself and my life without the assumption that one good day or one bad day is indicative of the nature of every day. Right now, that is all I want. Not to have to separate my life into different spaces for different subjects, with varying degrees of safety for my sanity. That, to me, would be worth so much. That is all I ask for today.

As I was reaching the top of my hill (and it does feel like MY hill now), I encountered an elderly man who looked like he might have been a mountain goat in a past life. He paused as our paths crossed, tipped an invisible hat to me, and said “It’s beautiful up here, isn’t it? Away from all that?”, nodding towards the city below. I grinned and replied “Totally worth the climb”. He returned my smile and said “You enjoy it!” before continuing on his way. I whispered into the air, into the space he left behind him, “I will. I already am”.

I’d like to end with an X Men quote, because I can’t think of a good reason not to, when Charles Xavier tells Erik Lensherr, “There’s so much more to you than you know, not just pain and anger. There’s good in you too, and you can harness all that. You have a power that no one can match”. To my friends out there with M.E., to anyone reading this who can relate to any part of it, I hope this (completely out of context from when it was originally said) quote means something to you too because we’re all harnessing something inside of ourselves to make things happen. And we all have our hills to climb.

Fluctuation, perception and more PACE trial ridiculousness

So you might remember back in February, I posted an entry called Someone at the M.E. Association said something accurate and wonderful about the PACE Trial. Today I found, through an online friend with M.E., another pretty shocking piece of evidence that the PACE trial is not the great shining beacon of hope, recovery and reliable science that it is so often presented as.

If you have 13 minutes and 5 seconds free right now, please watch the video above from MEAnalysis on YouTube. It talks about how the measurements for recovery (sorry, I mean “recovery”) are based on vague questionnaires where the slightest improvement in score (or, weirdly, a score actually getting worse) is presented as proof of the effectiveness of CBT (Cognitive Behavioural Therapy…yep, being presented as a cure for a physical illness). It also discusses the absolutely shocking manner in which results were manipulated to give a false impression of health, improvement and ‘recovery’. I knew the PACE trial was a little bit dodgy, but I genuinely had no idea it was quite this ridiculous.

M.E. is a condition where the severity of symptoms fluctuates. I’ll use myself as an example by comparing what a really good week, an average week, a below average week and a pretty dreadful week are like for me…

A really good week
When I have one of these (they’re awesome and I’d like more, please!) I am able to work for about 20-25 hours from home, in shifts of mostly 4 hours but sometimes 7 hours. Work starts in the afternoon or evening, doesn’t involve any sort of physical movement and I can cope with sitting in an upright position with only a moderate amount of pain. I can tolerate having my computer screen at about mid-range brightness. Between two and four nights a week, I’m able to go for a walk after work and, providing there are no hills involved, I can walk for anything up to 5 miles. For real. Amazing, right? I’m also able to manage a trip to the supermarket and possibly an evening socialising. I can get up shortly after I wake up, am able to open the curtains right away even on a sunny day without the light being too painful, and can hold a conversation while there’s another source of sound in the room (like the TV being on, or music playing). I only need to take pain medication when I’m going to bed, not in the middle of the night or throughout the day, and only wake up once or twice during the night because of the pain in my back and legs. This is ALL completely reliant on being able to rest during the day when I need to, go to bed when I’m tired and wake up naturally when my body is ready to wake up. One long day, late night, early morning or experience of disrupted sleep throws everything into turmoil.

An average week
I’m able to work for about 16-20 hours from home, in shifts of four hours, in the evening. Again it doesn’t involve physical movement but sitting in an upright position will hurt pretty much continuously and feel very tiring. Wearing a headset and mic to use the phone feels restrictive and uncomfortable, the sound coming through it hurts my ears and if someone has a loud voice, it’s mentally jarring. I need my computer screen to be mid to low brightness or it hurts my eyes and causes headaches. I’m able to go out for a walk of maybe a mile or two, slowly, about once or twice a week and can manage a short trip to the supermarket and an evening or a weekend afternoon socialising, providing I don’t have to do anything else that day. It takes about an hour to be able to get out of bed after I wake up and I have to wait a while before I can cope with opening the curtains. Holding a conversation while there’s another source of sound in the room is difficult but manageable. I need to take pain medication before bed and also in the middle of the night perhaps two to four nights out of the week. I wake up numerous times throughout the night because of the pain in my back and legs. Again, this is all completely reliant on resting when I need to, going to bed when I’m tired and waking up naturally when my body is ready to wake up. One long day, late night or early morning results in a worsening of all symptoms and a real struggle to physically cope.

A below average week
I’m able to work about 12-16 hours from home, in shifts of four hours, starting in the evening. Although this doesn’t involve physical movement, sitting in an upright position is absolutely exhausting and my entire body aches the whole time. Wearing a headset and mic to use the phone hurts my ears and my head, and the sound coming through it is excruciating. Even with my computer screen at its lowest brightness setting, it is painful to look at and causes headaches. I can maybe manage one or two very short trips out of the house in a week, and only if I don’t have to walk very far and can go really slowly. A visit to the supermarket is overwhelming, exhausting and painful. Socialising is not an option. I takes about two hours to get out of bed after I wake up, and I need physical assistance with this. Holding a conversation while there’s another source of sound in the room is impossible. I need to be in near darkness to do anything that involves my eyes being open. I have to take pain medication before bed, during the night and possibly during the day. I do not get more than an hour’s sleep at a time because of the pain, and the sleep I do get is not restorative in the slightest. If I don’t get to rest when I need to, go to bed when I’m tired and wake up when my body is ready to, I literally can’t function.

A pretty dreadful week
I am physically incapable of doing anything beyond lying in a dark, quiet room. Everything hurts, severely and constantly, to the point where even medication makes very little difference. It is pretty much hell.

If you didn’t know me and were to observe me during a pretty dreadful week followed by even a below average week, you’d assume that there was some sort of recovery going on. If you were selective about when you assessed my symptoms and did so during a pretty dreadful week followed by an above average week, it would be easy to say “Before, you could only lie in a dark room and were unable to walk unaided. But now you can work 25 hours a week and walk for 5 miles at a time. You are getting better so whatever you did during this week has resulted in an observable improvement”. It would be easy to ignore the fluctuations for the sake of convenience or to support a theory that you were seeking evidence to support. Your assumptions would be wildly inaccurate.

I know this is getting to be quite a long post, but there’s another issue that I feel it’s important to address. That is the issue of subjective perception. Considering the scales used in the PACE trial are based on self-assessment questionnaires, I’m sure it would not be wrong to assume that an individual person’s mental state, based on anything from what kind of week they’ve had to how much they’re being told by an outside source that they should now be feeling better, would alter the results of that self-assessment. Let’s revisit those really good, average, below average and pretty dreadful weeks…

A really good week
I feel extremely positive and basically wonderful because I can actually DO stuff! I feel hopeful, excited and enthusiastic about everything I am able to do. My raised level of physical capability is a novelty and it reminds me of times before I became ill, even though my ability to do ‘normal’ things is still vastly reduced.

An average week
I feel pretty good because I’m able to do the things I need to do. As I tend to veer towards the positive in all situations because it’s my natural state of being, I celebrate my achievements (however small they may seem to a healthy person) and my mood is generally happy. If you were to ask me if I felt ‘better’ without mentioning that you meant ‘better compared to before I had M.E.’, I would probably grin and say yes.

An average week
I’m living my life and getting stuff done. Even though it’s difficult and I’m exhausted and in a lot of pain, I’m still making it through the week so I still feel like I’m getting somewhere and things could be much worse. There’s still a lot of positivity because there has to be, right?

A below average week
I might feel kind of down during a week like this but because I’m aware of just how much worse things can get, I can usually manage to muster up my game face and accept the challenges. Fear comes into play here because I’m not able to work as many hours, so I have less money, which can threaten my security in a big way (remembering that, at best, I am still only able to work part time from home). Raised levels of pain affect my emotional state too so I tend to feel fragile and more sensitive, but I remind myself that it isn’t like this ALL the time, so I can make it through the darker days and 4 o’clock dreads with only minimal amounts of anxiety attacks and hardcore crying fits if I have emotional support.

A pretty dreadful week
Basically just overwhelming fear and crying interspersed with moments of giving myself a severe talking to about how I should stop feeling sorry for myself, then feeling more useless because I’m not being my usual strong, positive self. I’m utterly terrified because I can’t work at all or earn any money. Because I find it difficult to form coherent sentences during these times due to my brain having forgotten how to do thinking and talking, I can’t express how I feel so it’s difficult to ask for emotional support. A sense of loss, of deep all-encompassing loss, smothers every moment. Dark days, people, dark days.

People often talk about how emotional state can affect physical symptoms, but don’t tend to consider so much how physical symptoms can affect emotional state. If you asked me about my illness on a really great day, I can guarantee that you would get a positive and hopeful answer focused on the good stuff. If you asked me on my worst day, you would get crying and swearing and more crying, if you even got a response. On an average day, it would be more like “It is what it is, and I’m dealing with it. There are so many wonderful things in life that I can still experience and so many more awful things that I’m thankful for not having to go through”. How different do you think my self-assessment would be depending on what day you happened to ask my to fill in a questionnaire? And how different would it be if I was enrolled in a program of ‘treatment’ focused almost completely on my emotional state where I was constantly being told that the ‘treatment’ should be making me feel better?

M.E. is a condition of ups and downs, swings and roundabouts, hopeful days and days when the bottom falls out of your world. On average over the course of a year, I tend to be able to function better now than I did when I first became ill. A lot of that has to do with the many huge and complicated ways I have had to alter every aspect of my existence to enable me to manage this illness as best I can. I have also had time to come to terms with the pain, exhaustion, cognitive difficulties, uncertainty and almost complete lack of support available (I’m talking about support from things like the medical profession and government ‘welfare’ system, not from friends and family). I have changed how I live, how I work, how I cope, how I think, how I feel…because I’ve had to. It has been a process. It still is a process.

Choose two different days, weeks or months to ask me how I am and I will most likely give you two different answers. They will both be true.