The Trouble with M.E….

(… and Fibromyalgia)

If you read the title of this post and either the original Barry White tune or the remixed/sampled banger by Black Legend didn’t spring into your mind, please head over to your music streaming service of choice and get that into your head before we start. It’s been rolling around my head for days (the Black Legend version to be specific) and I love to share!

It’s been a while, it’s been a long while and I’m not actually sure why I’m dusting off the blog, but here we are. I had the urge to start writing again, I’m not quite certain about what, or where this journey is going to take us, or if I can stick with it but I’m going to have a bash (again!).

You see, that’s the trouble with me and M.E. (myalgic encephalomyelitis) and fibromyalgia. I find it so hard to be consistent when my body isn’t and it doesn’t cooperate with what my brain wants to do. I’m lucky in a way because my symptoms could be so much worse on a regular basis. But for me, not being able to predict what I can do the next day or even the same day two or three hours later is equally frustrating and demotivating, and really can stop me from moving forwards. Like, literally, I do too much and at the bare minimum, I’ll pay for it with debilitating exhaustion! I might not know exactly what will happen, or when, but sometime soon my body will make me pay…

I’m sure all of this would be much more manageable and less life-impacting without that pesky thing called work interfering. I work hard, and it’s intense, challenging and varied most days. My job provides me with a lot of flexibility and I’m lucky to have it and be able to work. But it would be challenging and tiring without chronic illnesses and my body being wired up incorrectly somehow. Most days after work I’m somewhat functional (the brain fog is usually real and hilarious) but any reserves are drained quickly with normal life stuff. Pushing through the pain and fatigue compounds things and the cycle goes on until I crash.

But this isn’t a winge… honest! This is me just blurting out ‘on paper’ why it’s sort of ok for the majority of the time that I’m not consistent. Just getting it out there for me so my fingers and brain connect, to justify it somewhat. I’m hoping I’ll read it back and actually acknowledge it. See, the trouble with me is also I don’t like to admit or concede that I’m ill, that I have to do things at a different pace to old me and most people. I’m also not my future friend and will disregard the fact that I’ll crash and burn later to get the gratification and satisfaction of doing something now that I really want to or feel I should be able to do.

Can I just not be arsed to do anything some days and it’s nothing medical? Quite possibly, that’s true for everyone – but it’s really hard to separate and if I’m honest, I think I’m getting worse energy-wise. Which isn’t good. I’ve been there before and it involved a massive prolonged crash, feeling like absolute garbage, unable to move and taking medication that did not agree with me in various ways.

Ironically, my body is hilarious and loves a good laugh. So to top everything off, as well as ‘normal’ rest not helping with my fatigue, I regularly have insomnia. Which would be amazing and I could use that time to be productive if I wasn’t so drained… and the cycle continues!

So why am I writing this? Well, I don’t really know. If I’m honest it’s probably the easiest way of putting myself back out in the online world. If I’m really honest I’ve closed myself off and backed away from everyone that’s basically not my close family because it’s easier than dealing with people. I’ve distanced myself from my online but genuine friends and folk I chat with – which in all fairness chatting is mostly messaging online and they’re stitchy people. Why – well because peopling is hard, I’m so drained and I struggle to form sentences and use the right words to talk to people without it draining me more. I just fell into being constantly too tired to open IG and it’s snowballed from there.

It’s also been that long since I messaged people socially or even opened Instagram, that I’ve genuinely built up a significant level of anxiousness about opening up lines of communication, which is stupid – and they’d say it was daft and didn’t matter, but try and tell my brain that. One of my best real-life friends lives a five-minute walk away, I borrowed a dress from her 5 years ago that I want to give back, but I can’t bring myself to message her… that’s the level of hot mess my brain is at. In case you’re wondering, I speak to and message a lot of people every day for work… but work me is an act, I have a mask and undertake a daily performance.

And yeah… I guess the trouble with me, is that I’ve lost myself a bit, and to sort of quote a fab song and bring this full circle, I’ve lost my way. Maybe this is the path to clawing a bit of myself back into the world. I hesitate to say finding myself because that’s a bit of a stretch into deepness!

So where do I go from here? I’ve no idea, but I’ve been making the effort to try to do a few things to “wobble my head” (as JC my lovely husband would say) in a positive way. Will it work, who knows? Will it last – probably not to be honest! But I’m at least going to try to be accountable and present. ‘Present’ was going to be one of my words/themes of the year, ironically (being present, not getting gifts… although I do like gifts so I wouldn’t complain. I’m failing miserably so far with it, but to end on another song (don’t judge this!) “things can only get better”… Can’t they?

Let’s have another blog redo and find out!