No small miracle

Over the last couple of weeks, things have started to look up a little bit. I have managed to do some laundry. I have cooked for myself a couple of times. I have been able to get out of bed in the mornings, feed the goldfish and make a cup of coffee and it has taken less than an hour. I have been going to bed in pain and waking up in pain, but I have been sleeping and this in itself is no small miracle.

The quiet voice that always lurks at the back of my mind, the voice of wishful thinking and endless hope, is whispering “Maybe this time, maybe this is it. Maybe one day soon you will be able to tell stories of sickness in the past tense and perhaps you will have no great revelations or wisdom to share, but that won’t matter. Maybe you will be well again and this will be over”. I love that quiet voice. It is part of me and I need it to be because it continues to speak steadily through all difficulty, through all frustration.

The rational, logical part of my mind speaks more loudly and more firmly. It says “Take each day as it comes and strive for acceptance. Celebrate the achievements, however small, and handle the disappointments with as much grace as you can muster”. Sometimes I find myself whispering to the Great You-Name-It, “Please, just let things get better. Or at least don’t let things get worse”. I think of six months ago when I went for walks in the dark on my own, when I climbed a hill, when I could put one foot in front of the other and feel like I was going somewhere. If I could get back to that place again, maybe that would be enough.

I no longer read articles in newspapers or on websites about M.E. because I find myself becoming angry about the misrepresentation and old news wrapped in promises of progress. I write in this blog less and less frequently because, while I have needed this place and this opportunity for consideration and release so much over the last couple of years, I find that I have reached a place where this condition is simply a part of my life and not a separate thing that needs a home of its own.

When I think of all the times over the last ten years that I have forced myself to keep going, stopped to pass out or throw up or cry, then pushed on until I reached the point of complete collapse, I feel sad that I ever punished myself like that. And it was punishment. Part punishment and part proving a point to myself, to the world in general, to all the messages we are fed, the messages we internalise, about how  The only thing standing in your way is you! and You can have anything if you want it enough! Every time I embraced denial I was screaming “Look how hard I’m trying! See how much I don’t want to be sick! Understand that I did not chose this and do not want it!”.

There comes a point where that screaming has to stop. Maybe it is enough for me to understand and accept my own limitations, to gently nudge boundaries when I can and to stop being scared of what other people might think of me, of what I might think of me. So if I don’t write here so much any more it is not because I have nothing to say or because things are dreadful or because things are perfect. It is simply because, for the time being anyway, I don’t need to.

I might be living with a chronic illness, living with disability, or other carefully phrased explanations of what all this means, but I have finally, FINALLY, found the strength to truly accept that I have nothing to prove. Not to anyone else and not to myself. At my lowest and in the darkest of times, just as at my strongest and in the most beautiful of moments, I am fine just the way I am.

that I would be good even if I did nothing
that I would be good even if I got the thumbs down
that I would be good if I got and stayed sick
that I would be good even if I gained ten pounds

that I would be fine even if I went bankrupt
that I would be good if I lost my hair and my youth
that I would be great if I was no longer queen
that I would be grand if I was not all knowing

that I would be loved even when I numb myself
that I would be good even when I am overwhelmed
that I would be loved even when I was fuming
that I would be good even if I was clingy

that I would be good even if I lost sanity
that I would be good
whether with or without you

(That I Would Be Good by Alanis Morissette)

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.