ME Awareness Month 2021

Where I’m at…

(Just before I start, if you want to know more about ME/CFS in general follow the link to another one of my blogs just here, if you want to know how I developed ME/CFS follow this link here, and if you want to know how I was doing a couple of years ago follow this link here.)

I haven’t written an ME related blog for a long while, but seeing as it’s ME awareness month, I’ve recently had a little flare up, AND I’ve been chatting to some chronically ill friends and acquaintances recently it seemed like a good time.

As a bit of very speedy background, after being a very healthy individual for 29 years I developed ME in the last year of my undergraduate degree. Although I had a really rough period where I was pretty much housebound, spending most of my time in bed, I’ve more or less recovered at a fairly consistent (albeit seemingly glacial) rate over the last 4 years. In this, I am incredibly lucky. There is no diagnostic test for ME, no established treatment plan, and no prognosis. Many folk, like myself, go home and just try to figure it out for themselves.

So, ~4 years after diagnosis, where am I at now? I guess that’s somewhat complicated! According to the NHS, ‘severe ME’ describes people that are bedbound (or at least housebound), ‘moderate ME’ describes people who can’t work or continue full time education, and ‘mild ME’ describes those who can carry out everyday activities whilst maintaining a job, but they do this with difficulty and have to sacrifice hobbies or social activities. If you’re thinking that mild ME doesn’t sound too bad, imagine your entire life being stripped back so it just revolves around work and basic chores, because you have no reserves left for anything else. No beers with friends on a Friday, no playing footie in the garden with your kids, no midweek French class…you get the drift. Doesn’t sound so mild anymore, right? Anyway, where do I fit into this short list of NHS definitions? I’m definitely not severe, I’m certainly not moderate, and actually I’m not even mild. I exist in a space that would be considered by many as recovered, but I feel remiss to accept that definition.

I think I would be considered ‘recovered’ because I hold down a full-time job (well, a PhD), a social life and multiple hobbies, which even include a certain amount of physical activity. I even started running and playing badminton for a brief period a couple of years ago (before I had a relapse)! I would disagree with the term recovered though, as sometimes I still have relapses or flare ups, I’m certainly not at pre-ME fitness and ME still, to some extent, shapes how I live my life. It’s hard to say why I have flare-ups. Sometimes I think it’s stress, or that I’ve overdone trying to build up my exercise, or even that I’ve eaten something that doesn’t agree with me. But, if I’m honest, I never really know. I generally just pick the option that seems most sensible and settle on it because I want an answer. Relapses for me most commonly mean one, or a combination of the following symptoms: Chest pain, headaches, joint pain, muscle pain, brain fog and/or fatigue. I also developed IBS as a fun side gig to ME, but I almost consider that an entirely separate entity now! Nowadays relapses normally have a peak in which I have to rest totally for a full day with time either side where I just need to cut back on activities. It’s rare that flare-ups last longer, but this most recent relapse had a peak of about a week and then of course time either side where things were ramping up or cooling down.

I have a lot of feelings about where I’m at now and I’ll share some of those below. I’ve tried to be open and vulnerable and I appreciate that might not make for comfortable reading. I think it’s important for me to share though and if it makes just one person feel even slightly less alone or slightly more seen then I think it’s worth me exposing myself!

Let’s start with a positive (I’m a silver lining’s kind of girl)! I’m so grateful that I have recovered so much as I know many folk suffer a lot more for a lot longer. I’ve learned to enjoy a tonne of new things like playing videogames, chilling in cafes, sitting and watching the world go by (generally just being) and deep diving into various crafts. But, I‘m also grieving the life and the person I feel like I’ve lost. I miss regularly climbing mountains, I miss running, I miss pushing myself and I miss trusting my body and feeling fearless in what it can achieve.

In some ways I think having ME has helped me manage my PhD, and well, life for that matter. It’s taught me to get better at managing my stress, asking for help and saying no. I’m not by any means saying I’m flawless at those things by the way! I still get stressed, I still say yes when I don’t want to sometimes, and I still forget I can ask for help from time to time. But, I’m infinitely better at those things than I was before! Whilst things are fine with the PhD, I’m low key terrified about what I’m going to do next. I worry about being able to keep up with the fixed hours of a ‘normal’ job, I worry about what that would mean financially and in terms of my independence. I’ve always fallen on my feet and I’m trying to have faith that that will happen again. I’m hoping I’ll just stumble across some super flexible, well-paying unicorn job that matches my skillset whilst I’m doing my careers searches. I know some of your values, needs and fears change with age, but I used to have wild dreams and be fairly carefree about where I would move and what I would do. I just knew that I’d be fine and I’d figure it out. I knew I could physically push through any difficulties that come as part of the new job/ new move upheaval. I struggle to think past the PhD now (although admittedly that’s not all to do with ME). A little while ago a job came up in conservation working with a friend on a reserve I’d lived and worked on before. (Pre-ME, I always thought of going back to conservation if science didn’t work out.) This job was a unicorn job! Now, ME aside, I want to finish my PhD, I don’t think I’d want to live on an island separated from my partner, I don’t think I was entirely qualified anymore and literally the perfect person got the job anyway. So, it was never going to happen, but I think what I found so difficult is that for all the time I spent thinking and talking about how cool that job could be I always had to admit the hard truth to myself that I’m not physically capable of working in conservation anymore (or at least for the foreseeable future). I’m just not well enough…and yeah, maybe I will be in the future (I still trust that I will continue to gradually get better), but it was still a hard thing to swallow.

Things like I’ve just talked about can leave me feeling a little trapped in a body that doesn’t work like it used to… and yes, I know it could be worse, but that’s not a helpful way of thinking either. ME has had a huge impact on my body confidence. It’s not just about what my body can do, it’s about how it looks now. It just doesn’t feel like ‘me’. I’m a lot fluffier now, as in I’m the fluffiest I’ve ever been! I have to say that there are of course other factors, I’m older, it’s a pandemic, I’m in a relationship etc… but ultimately, I can’t exercise like I used to. It’s such a hard thing to try to balance. I start exercising, build it up, get excited, struggle to listen to my body, relapse, take a break, get disheartened… It’s a vicious cycle. Because exercising is temperamental, I’ve also tried to just control my weight with food, but that quickly becomes unhealthy (I’ve not always had the healthiest journey with eating anyway). Counting calories becomes obsessive, then I don’t eat enough, then I get lethargic, then I have a flare-up. It’s another unpleasant cycle. I’m trying a novel new thing at the moment, which is eating and exercising intuitively and learning to be comfortable in my body. It’s the opposite of easy, but actually it’s making me face some of the unhealthy attitudes I’ve held surrounding weight gain throughout my entire life and that cannot be a bad thing.

Having said all that, I also feel guilty. I know that someone with even mild ME might read this and think “how dare she complain with the life she’s leading”?! By all intents and purposes, I’m living a totally ‘normal’ life and my Instagram shows me being in the lab, going on walks (even up the occasional small mountain/big hill), hanging out with friends etc… Don’t get me wrong, I am SO grateful, and I have so many wonderful things going on, but I have the before and after ME comparison in my head and I still feel limited. I want more. I know I’ve written about this before, but I also still worry sometimes that it’s not ME. I worry that it’s something else, or that it’s a crutch, an excuse, something psychological. That makes me feel a strange type of guilt and fear too, like I’m going to get found out as a fake. Imposter syndrome but for a chronic illness!

Despite everything though I’m not sure I would choose for it to never have happened. I’ve learned so much and grown emotionally. I’ve made choices and friends that I don’t think I would have made before and they’ve led on to some excellent experiences. It just hurts sometimes, and I really wish there was an end date. I used to spend a lot of time wearing a bit of a mask, kind of a toxic positivity mask. As a matter of survival I thought I had to stay positive and optimistic about my ME pretty much all the time lest it effect my recovery, but that took a toll and now I’m just trying to let myself feel everything. I can have good days and bad. I can be grateful and think it’s all a bit shit simultaneously. I’m a good multi-tasker! I have a long way to go mentally and physically, but I have a delightful support network of friends, family and now even a therapist. Look at me go!

Anyway, a big thank you for reading this. These posts are never easy to write so I always hugely appreciate anyone making it this far!