I originally wrote this as a post on my Facebook profile as I feel it’s important to educate people I know about ME symptoms and how it’s actually not straight forward or easy to understand, even for people who have ME. I also want to try and explain the way symptoms suddenly appear, fluctuate or sometimes don’t even seem related to ME, but then you find out other ME patients experience the same symptoms.
Since covid19 there are also, seemingly, reports of a similarity between the long term symptoms some people are experiencing after having the covid virus and ME symptoms. So it feels apt to share even more now, as more and more people are likely to suffer with the same, if not similar, illness.
I’m slowly, slowly starting to understand the weird symptoms of ME, some of which I didn’t realise were symptoms of ME in particular. When people ask me about ME symptoms I go blank or feel panicky…there’s just too much and it’s too overwhelming to start to try and explain. That then creates anxiety because I can’t think, I can’t use my brain to think or recall or retrieve information, it actually hurts to try, and it all feels too difficult and too negative – hearing myself try to explain stresses and depresses me.
It’s taking a while, years and years, but now I’m starting to understand ME more. Within this time I’ve lost friends along the way, which people on ME groups talk about but I’d not taken notice of as thought it wouldn’t happen to me, that they were just being negative. But it’s true; the friendship group, and even family group, diminishes.
One of the barriers to understanding is that doctors don’t even know what causes ME, aren’t educated about what is known about ME, and don’t even realise the extent of the symptoms. Some are better at others at trying to educate themselves more but generally medical professionals really don’t know much. This is why being in ME groups, although it can get really depressing because of the negativity (I’ve often had to stay away from them for long periods of time to take care of my mental health) can be helpful. You start realising that strange things you feel/experience are being felt by others who have ME. Another issue about informing others about ME symptoms is being too exhausted and not having the cognitive function to recall the information and explain things to people, often having to repeat it every time you see them.
I thought I’d share some of my discoverings so people can have more of an understanding. So, here is tonight’s symptom explanation:
A little known symptom of ME is Delayed Sleep Phase Syndrome which is a shift of several hours in the sleep phase. Mine has shifted to 3-4am until 11am-12pm (sometimes later depending on other ME symptoms). It’s not insomnia. When I go to bed, I listen to a guided meditation, which I never hear the end of, and go straight to sleep. Once I’m asleep I sleep straight through. If I try to go to bed earlier I just won’t go to sleep, it’s just not time to go to sleep. When I awake in the late morning/afternoon I feel like I haven’t slept (this is every single day).
I used to try and change it, I researched it, and was told by the ME clinic, that it could be changed by getting up earlier, but unfortunately this advice just highlights to me the issue of how ME is often wrongly viewed. ‘You just have to try harder’ seems to be what is implied but perhaps not in those exact words. The ME clinic staff just don’t get it. It’s not possible. If it was possible I would have managed it by now. I’m a determined person. If I put my mind to something I can do it. I did try, so many times, and I used to get frustrated (and sometimes still do) that I couldn’t change it. However, now I just try and go with it, otherwise the frustration just makes me feel worse.
So I feel crap all day; no energy, pain, brain not working, then BING! my mind is wide awake late at night even though my body is exhausted. I feel wired and exhausted at the same time.
It’s a very disruptive, unsociable, symptom and pretty much not accepted by society, especially if you’re doing a 9 to 5 job, you’re in education, etc. It’s one of the reasons I had to become self employed.
I hope this helps people understand ME a bit more and could maybe help those with ME know they are not alone and they aren’t lesser because they can’t get up in the morning. I still struggle with my mind telling me I am lazy and have the thoughts that people think that about me. The difference now is that I quickly shake that thought, let it go, and just try and do what I can do…and try to do that small amount (or nothing if things are that bad) without shame or guilt.
romskiwrites 