Fear

To listen to me read this blog post, please click here: Reading “Fear”.

It’s been a few months since I’ve posted here and that’s mostly because I’ve been well and living a normal life. Actually, I’ve been living a busy life. I’ve been finishing off my final year at university, writing my thesis, and I got two part-time jobs. I felt like I didn’t have much to say about my M.E since I was living a life basically symptom free. But then the Coronavirus hit.

Before you start reading, I want to be clear that I don’t know whether or not I had the virus, they’re not exactly handing out test kits here, all I can do is tell you what I’ve been experiencing.

It started with my legs aching. Since my “recovery” I no longer experience symptoms daily, but when I do over exert myself or drift from my diet, my legs are the first to let me know. So I shrugged it off as “I just did too much today and need to take it easier.” But the pain persisted day after day, getting worse each time. I was back on pain killers or else I wasn’t able to sleep. Then I got a cough. I’m not a person who gets coughs so I was immediately suspicious. It wasn’t a bad cough but it was persistent. I began isolating as the government suggested. The cough never got better nor worse but the leg pain continued to require pain killers. After 1 week of showing symptoms, the government said I could go back to work (this was before lockdown). The afternoon before I was due back I was massively conflicted. I could go back to work, I should go back to work and if this was the virus then I should be safe, but if it wasn’t the virus and I just had a cough then my immune system is even more damaged than usual and I’m at an even higher risk of catching it. But I’d already taken a week off to isolate, I can’t just keep taking time off just in case, can I? I went for a walk with my partner to mull things over, and I was in far worse condition than I thought. I was getting PEM symptoms almost immediately after stepping out the front door. I was panting, my heart was racing, my legs felt like lead and my whole body slouched, unable to hold itself upright.

I called work and explained my worries. They were very understanding and told me that if I felt safer at home then I should stay there. If only all employers were so empathetic. Soon after that, lockdown was put in place and although my place of work stayed open (they are working on disinfection techniques and studying the virus itself), I did not consider myself to be an essential worker (part-time lab assistant with little training to carry out work autonomously), so I am staying home indefinitely.

I don’t know how much of my symptoms was caused by the cough, by stress, by the potential virus, or by lockdown resulting in less time outside or exercising, but my condition got worse. The week after lockdown started, I woke up finding myself unable to walk. This has only happened to me a few times in the past and only when my illness was at its worst, so you can imagine how truly terrifying this was. I had to ask my partner to help me to the bathroom and back to bed. After 8 months of being symptom free, suddenly not being able to walk was soul crushing. I tried not to dwell on it but the thought stayed with me, “What if 8 months is all I get and now I go back to being ill again?” I started asking myself whether I used my time wisely or if I could have done more. I wondered if I would look back in a couple of years time and say “I should have done x, y and z while I had the chance.” But I rested and I slept and slowly, as the day went on, my strength came back a little. The next day I was able to tackle the stairs and the day after I wanted to go out for a walk.

My strength returning with rest said to me that my body is trying to get better but the lack of exercise is causing my muscles to seize up and weaken, so I should try to keep myself active within my limits. Now I’m making sure to get out for a walk every day, but I’m back to never leaving the house without my cane and a short lap around the park is the most I can manage. Every day I seem to be getting a little stronger and am less exhausted when I get home, so that tells me my hunch was right, my body needs the exercise, fresh air, sunlight, in order to stay in working order. My legs aren’t hurting so much now either but I’m still wondering if I’ll get back to full health again or if my cane is coming out of retirement permanently.

Thank God we are still allowed out of our homes but I am afraid that we may not keep this freedom, and I’m not sure what I’ll do then. I’m also afraid that lockdown will continue for longer than we are expecting and I don’t know if I will continue to improve or stay at this level of wellness. Just like everyone else right now, I’m afraid but trying not to panic.

I hope you are all well.

Cane and Able(ility)

Before I get started on this month’s post, I first wanted to mention, for those of you who can’t be bothered to read to the end, that I have started up a new Instagram account (@m.e_and_me_experience) to supplement this blog. I use it to recored my day to day experiences in picture and video form. Small, bitesized snippets can be easier to digest, especially if you suffer with brain fog, as I do. So please go and check that out.

I know I’ve mentioned in the past that I use a cane and sometimes a crutch to get around, but I don’t think I’ve ever talked about how I feel about that. So that’s what this post is all about. Some people find it difficult admitting that they need a mobility aid to walk, whereas others may like the attention that having a cane or walking stick gets them. Personally, I didn’t really think about it too much when I first started using it. My father is disabled, which is something else I know I’ve spoken about before, so he uses crutches or a wheelchair to get around, therefore, the idea wasn’t that foreign to me. When I started to realise that walking was difficult it seemed natural to use a stick to help me. At the time, I was going to college and found that, during the walk home from the bus stop after a long day, I would hold onto walls and railings in order to help balance myself and get myself home without collapsing. I felt very unstable on my feet and my legs felt so weak that I thought they would buckle under me with every step. So one day I just asked my dad if I could borrow one of his crutches to make the whole thing easier. It helped and I never questioned it. As my health improved, I decided that the crutch was very encumbersome and that I would probably get by just as well, or better, with a cane or walking stick. I found a cheap one online that I liked the look of and used it when I felt that I needed to. For a while my health was that much better that I didn’t need it at all, but I would always carry it in my bag just in case (it was foldable). It was nice knowing that it was there if I needed it. My illness progressed and I started to use it more, then I began exploring other options and opted for a cane that was sturdier and had a more comfortable hand hold. (I still have my first cane though. It has a different type of rubber foot on it now that is better suited to uneven ground and I’ve dubbed it, my “off-road” cane.) I also considered buying a walking frame with a seat but didn’t have the space for it in my flat and wasn’t sure how much I’d use it. Currently, my health is starting to get that bad that I am considering buying a wheelchair. This is something that I intend to explore during the summer when I have more time to test some out and get used to using it.

Now, I’ve explained how the decision making process came about, but I also want to get more personal about my feelings towards the cane. When I first started using it, I felt a little embarrassed, but only in the same way that one would be self-conscious about a new pair of glasses or heels that are taller than you’re used to. I was very aware of the movements that I was making with the cane and my feet and sometimes wondered how it would look from an outside perspective to see somebody so young using a cane. Sometimes I was concerned that people would think I was making a strange fashion statement. However, I was always grateful for the extra ability and independence that it gave me. I was still able to get out and about and do things, or at least more things then I would be able to do without the cane. I wouldn’t say that I loved it but I definitely had positive feelings for it. As I became more used to it and more confident using it, it became like a third leg. And that’s mostly how I think about it now, I usually forget that it’s there. The motions and movements that I make with it are second nature now so it feels as natural as walking. The only times that I really think about it is on the days when I’m not doing so well and I have to lean more heavily on it, and in those cases I’m only more aware of it because there’s more pressure on my hands and arms, I’m equally aware of the weight of my body on my legs and feet. I’ve never had a prosthetic limb but I imagine it’s a similar feeling. I don’t think of it as being separate from me even though I have no feeling in it and even though it is not physically a part of me. It feels like it’s a part of my character and it is very much a part of my identity. Without it, I feel like I am missing something.

How do I feel about my cane? How do you feel about your leg?

Anger

I have been angry recently. The anger comes and goes, just like the other emotions I feel, but I’ve been feeling angry for the past few weeks now and I don’t think it’s going away any time soon. I’m angry about the things that my body won’t allow me to do and I’m angry at the unwanted things that it does do. I usually use humour to make my disability easier (for myself and others) to deal with but I’ve found that by doing this I have made it so that the people around me don’t fully understand the difficulties that I live with. This then means that when the anger rears its ugly head, I end up getting frustrated and irritated and sometimes even aggressive towards people who laugh at me in the way that I would normally laugh at myself. Of course they can’t be blamed for laughing at me this way since I’ve already established it as an acceptable behaviour by doing it myself. But the point here is not that I feel victimised because I’m being laughed at, it’s just that the laughter implies that it’s not a vicious all consuming disease that is slowly stealing my life away from me.

I find myself in situations where I have to remind people that my life isn’t the same as theirs and that there are things that I cannot do, and that repetition just drives it home a lot harder and a lot more frequently than is comfortable. It also reminds me of my teen years when I suffered severely from depression and anxiety and therefore couldn’t work and rarely went out. People would call me lazy because they couldn’t see the illness that I was suffering with. This feels very much like that, like people can’t understand why I don’t do certain things because they can’t see the way that I feel and I’ve taught them to laugh at the illness as if it’s something that doesn’t affect me.

Only yesterday I was talking to a friend and fellow student about future career prospects. She said that she didn’t want an office job because she didn’t want to be cooped up and sat down all day, and I replied that I didn’t have much of a choice anymore. She asked why.

Last week I was talking to my partner about how I wanted to restrict our future children’s exposure to technology. I wanted them to have an old-fashioned childhood where they played outside instead of sitting on their consoles or tablets or phones all day. “Says the person who sits around on her phone all day” he laughed. I wanted to scream at him. Do you know how much I would love to go for a bike ride or camping or tree climbing or a long walk or play at the beach or go and feed the ducks or even just have a day out where I don’t have to plan everything in advance because I need to know where and when I can sit down and what the terrain will be like and how long I’m going to be on my feet and how far away things are and what time of day we’re going to be out and what the weather and temperature will be and if we’re able to come home quickly and what else needs to be done that day and how many people are going to be there and what’s expected of me while I’m there and how much enthusiasm will I need to put in. I ‘sit around on my phone all day’ because that takes little to no energy and after a 10 to 12 hour week that’s about all I have left.

So yeah, I’m angry. I’m angry because of all the things that I wanted to do with my life that I now seem unable to do, and I’m angry that people look at me and see me as lazy, and that no one seems to notice how hard I work just do as much as I do do. I’m angry because when I do take the time I need to rest, I feel like I’m letting myself and everyone around me down. I’m angry because life is hard every single day and I am alone in this fight.

The Overachiever Inside

I am a university student in a popular field. The jobs that I will be applying to when I graduate will also be applied to by a large number of similarly qualified graduates. The extra things that I do now,  the extra time and energy that I put in, are the things that will make me stand out from my fellow classmates. This is a widely known fact here. Our peers are our future competition. I want to be a competitor but I also want to graduate.

There are a number of students in my class who couldn’t care less about their futures and those are the people I don’t need to worry about, but there are also a significant number of students who take their education and future careers incredibly seriously. These are the ones who spend extra time in the library, who ‘network’ with older students and other members of the profession, they pick up extra work experience and meet with lecturers out of hours to learn how to improve their grades.

These are all examples of things that I would love to do, and would be doing, if I could. But the extra energy it would take is extra energy I don’t have. Sometimes it takes all the spoons available just to go to scheduled lectures. I do my best to do what I can, but my health always has to be first priority. If I pushed myself to do more than I am doing I would crash and fall behind, making me worse off than I am now. So I have to settle for being an average student and hope that some employer will take pity on me or be won over by my enthusiasm or organisational skills. This is hard for me. As a perfectionist, I want to give everything 100% and be the best. Unfortunately, my body has decided for me what “100%” actually consists of, and I’m afraid it’s not enough to compete.

Now don’t get me wrong, I know I sound sour but, I’m not angry at the overachievers for overachieving. In fact, I applaud them for being so dedicated, as I would be myself. My issue with the overachievers is when they have to make sure everyone knows just how much better they are than the average student.

Go ahead and be the best you can be, that’s wonderful, but do you have to make me hate myself for not being good enough in the process?

Grant Me The Serenity To Accept The Things I Cannot Change…

…the strength to change the things I can, and the Wisdom to know the difference.

I am back at Uni for my second first year. My first first year was failed because looking after myself became more important than passing a course I didn’t enjoy doing anyway. I have been housed in a handicap accessible flat with a seat in the shower, hand rails, and a lowered hob and sink in the kitchen. I was ecstatic to discover this as it meant that looking after myself would be so much easier than it has ever been before and I could therefore put more energy into actually studying. The flat is old though and definitely needs updating, but I’m not complaining since the benefits massively outweigh any of the insignificant issues I may have.

Today was the Freshers Fair. It’s the day when all the clubs, societies, sports groups and local businesses set up stalls to try and entice students to sign up to their thing. Last year I was dealing with anxiety levels that made crowds terrifying, but I pushed myself to go anyway because I had such lofty goals for myself and wanted to sign up to all of the things. This year I remembered how much I enjoyed it last year, but forgot to consider how much my health has declined since then. This year I had to manoeuvre through the crowds with a cane. This year I found myself looking at stalls and thinking how much I’d love to do that but, knowing that I am not capable, having to walk on by. Every stall I passed made me slightly more depressed. I can’t even take part in medical research because they need “young, healthy specimens”. I went to the library to distract myself away from crying, because at least I can still read… for short periods of time at certain times of the day assuming I’m not being badly effected by ‘brain fog’. I went back afterwards to sign up for the things I had previously decided I was going to do. I joined the Biology Society to facilitate my learning (I’m studying biology), The Pagan Society for religious support (I’m a Wiccan), The Sustainability Society so that some days I may be able to work on the allotment and the Sign Language Society since I’ve always wanted to learn but never had the opportunity to do so.

I compare my past self to my current self more often than I’d like to. It depresses me because even though I know I have to accept my limitations, there is always a part of me that resents acceptance and equates it to weakness. This is particularly annoying because when I think of my current self without the comparison, acceptance comes naturally and I am excited by things like living in a specially adapted home.

So here is the daily challenge to my mental health; accepting the change that brought about my limitations and learning to live within them, identifying the things that I am still able to do and pursuing them while disregarding the voice that tells me I’m useless, and learning how to differentiate between the two effectively.