How ME/CFS still shapes my life…(mostly what goes on in my noggin)!

So, as with my first two blog posts I have a horrible feeling that this might a bit bleak and sobering. Guess it’s hard to be anything but when you’re talking about an illness really!

Apart from the bloody awful first 9 months that I described in my previous blog post, I am incredibly fortunate that 2 and a half years after first falling ill my ME is predominantly very, very mild. I put some of that down to the fact that I pretty much lucked out with the NHS. Sure, a lot of people didn’t know or understand what it was that I had or what I was going through but nobody outright or openly disbelieved me. Nobody in the NHS ever told me that they didn’t believe that ME was real and from what I’ve read I think I was very fortunate to get a diagnosis quite quickly. I’m also very lucky to be living independently, doing my PhD and maintaining a social life. A few months ago I was even so well I started to play Badminton with my office mates and I started a couch to 5k. I’ve had to stop doing both of those things for the time being, but I’m still grateful because it had flitted across my mind, more than once, that I might never be able to do anything that active again.

The words lucky, grateful and fortunate, like I’ve mentioned above, are words that cycle through my mind often. Almost like a mantra. They’ve helped me to keep things in perspective. I’ve held firmly onto words like that throughout the past 2 and a half years because they’re a life line. I’ve honestly been terrified that if I was anything but strong for more than a moment that I might crumble. It’s only been recently that I admitted to myself that I probably needed a wee bit of counselling, because believe it or not, there are actually a lot of emotions to deal with when your life has been changed by an illness! Shocking huh?

If lucky, grateful and fortunate are words that I hold onto, then fear, guilt and frustration are the ones that I try to let go of and the ones that I struggle with. I guess a good place to start is the fear. Most of the fears that I have are ones that you’d expect. I’m scared I’ll never get better, I’m scared I’ll get worse again, I’m worried about what people think but a fear that you probably wouldn’t expect is the fear that I don’t have ME at all! The seed was planted in the first 9 months after seeing multiple doctors. There is no diagnostic test, it’s a diagnosis by exclusion and by fitting your symptoms to one or more of several different diagnostic criteria. It’s also an illness, like MS once was, that some people firmly believe is psychological. I don’t doubt that there is a psychological aspect to ME but then you try being ill for years and not having your mental health challenged! I also worry that it’s not really ME that I have because I don’t know anyone with ME that is as healthy as I am…in fact I think by several standards I am considered ‘recovered’. Sure, I still get all of the symptoms that I got when I was at my worst if I don’t pace myself properly but they are a fraction of the intensity. The people that I know with ME are on social media and I started following them because there are so many unknowns with ME it helped me figure out what I was dealing with. Those people that I follow are really poorly, they’re mostly house/bedbound and have been for years or decades. So, if I don’t have ME then what is wrong with me and if I really do have ME will I end up like them?

That leads me nicely from fear to guilt! I love a bit of social media and of course, like most people, what I post is a highlights reel. I have one account where I post all the pretty places I visit, the walks I go on, the social events, some PhD stuff and another account where I post all about yoga. I love yoga because there are so many different aspects/levels to it that it doesn’t matter how good or bad I feel I can practice somehow. But when you tell someone that you have ME and then post a picture of yourself in a headstand or tell someone you’re too sick to visit them for the weekend but then post a picture of yourself at an art gallery it all starts to seem a bit incongruous…and that makes me feel guilty. But, as with all social media, people don’t see what goes on behind that. Even with very mild ME I am constantly evaluating my energy levels, constantly weighing up what I have planned for the day/week/month and balancing out how I might be able to manage all those things. Because I obviously still want my life to be as full as it possibly can be and that takes careful thought. So, working out whether I can do a spontaneous activity, for me, looks a little something like this…

But, of course, nobody sees that.

I spent the year that I studied for my masters in bed most of the time. One of the main reasons I picked the course was that there were long gaps between intensely delivered modules. It meant that I could spend 3 – 4 days in lectures and then 4 – 6 weeks recovering. I started that year going out for about 5 – 20 minutes on days I wasn’t in uni and built it up. I rarely socialised but I did have remedic massages every other week as massage for me was a complete game changer. What people would have seen from the outside was probably someone who looked healthy, fairly active and pretty productive. I guess that became somewhat true towards the end but in general the life that people saw and the life that I lived were worlds apart.

Now when I say ‘built it up’ I want to make it clear that I am not a proponent of graded exercise therapy (GET). GET prescribed as a treatment for ME is not okay, the PACE trial is not okay. Recovery is not linear, every body is different and you have to learn to trust yourself and listen to your body (although that is way easier said than done!).

So, yeah I guess what I was also trying to say back there was that sometimes I feel guilty that I’m doing so well and that my symptoms are so mild/sometimes non existent when other people are suffering so badly. It doesn’t make sense…but then I never said that it did!

That leads me to frustration. Woo! We’re almost there folks! Having ME, yes, even mild ME, is incredibly frustrating. Making friends, keeping friends, starting a new job, joining a club, adjusting to inevitable weight gain etc… are all things that can be quite hard anyway but having to do them with newly defined limits is even harder. Telling someone I’ve just met that I love hiking, being outdoors, yoga, keeping fit, doing crafts, going to the pub etc… etc… etc… and then consistently saying no to invitations or cancelling plans makes me feel like a liar and you’ve guessed it is incredibly frustrating. ME is part of my life now and I don’t hide it but I also don’t shout about it. I don’t want to tell someone prematurely because I don’t necessarily want to be questioned or judged, most people don’t know what ME is and it can be awkward to explain it. It can also be bloody annoying. The amount of times someone has asked me if I’ve tried drinking more water or if I’ve been tested for anaemia/pernicious anaemia makes me want to lose my shit. But the people that say those things are just trying to help so I keep the rage inside!

As I’ve mentioned I’m halfway through the first year of my PhD. I love it and I’m enthused about the work I’m doing, which means that I want to do everything! That’s great but it’s also dangerous. I guess that having these physical limits means that I can’t afford to overwork myself which means I pretty much do my 9 – 5 and I don’t work evenings or weekends if I can help it and I have valid reasons to say no to things that many PhD students can feel pressured to say yes to. But it’s very frustrating. What’s also frustrating is unprofessionally and explosively crying in your supervisor’s office because you’re having a little relapse, you feel like poop, you’re asking for a few days off and you’re terrified that he’s going to think that you’re not capable. Oof! 

I’m learning that I have to be quite vocal about how I’m feeling with my lab group because unless you know my ‘tells’ you can’t see my ME. I find this really hard but I have to say I’ve been blown away by how delightful my lab mates/supervisors have been. I’ve been incredibly lucky.

Right, I’m done. Again, if you’ve made it this far…well done! If you had moderate/severe ME then you’d probably struggle to read this in one go if at all. Crazy huh? I don’t think I have any take home message for this post. I guess I just hoped that this would perhaps provide some enlightenment with regards to ME for someone, somewhere.