This is what I do so, if you do the same, you’ll be fine …
What is it?
M.E. or CFS stand for basically the same condition, no one has yet settled on a set name, my doctor prefers CFS (Chronic Fatigue Syndrome). How it affects someone is more ‘ME’, as in the word.
Like a great many conditions, there is not a one size fits all approach. Some broken legs heal in 6 weeks, some take 6 months. Some migraine attacks are over in a matter or hours, some take days. Autism isn’t a condition, it’s a broad spectrum of how it affects people.
Likewise, CFS doesn’t affect everyone the same. Two people could be ‘moderate’ sufferers yet be affected very differently. Some will continue a near normal life whilst others will have considerable struggles.
Work Through It
It upsets me when sufferers are treated as idiots with a condition which is basically in their head. You got to work through it being most commonly uttered. Some will say, once you get your self respect back and work, you will feel so much better.
Look, there is merit in the argument that keeping busy does help with moral. staying at home watching daytime TV is soul destroying. At the other end of the scale, going mad, doing all the housework, helping others out, and basically ‘doing’ all day is, for some, very tiring.
I can work through it, quite effectively but, it’s like I am on autopilot with many functions. I get the job done but it’s not pleasant.
Tired
So, I hear people ask, ‘Doesn’t everyone get tired at the end of the day?’ … ‘is this just not normal stuff we all feel?
This isn’t like that sort of tired. This is an unable to function tired. Imagine the worst jet lag or, perhaps, that time when a new baby has been waking every hour or so every night for a week. Effectively, imagine as tired as you’ve ever felt and this is the feeling most of the time whether a sufferer has slept or not or worked or not. Last night, for example, I got a full 7 hours and yet by lunchtime I am exhausted, it’s like I just didn’t go to bed at all last night. This is an everyday thing, not just now and then. How quickly it hits depends on how active I am being.
Pain
I am sure, when I think back that, if I got really tired my everything hurt, am I right on that one?
Arms, legs, back, neck … just discomfort, borderline pain and, seizing up in the mornings. This too is ‘normal’ for me
ME and me
So, this is normal for ME and me. Sure, it’s one of those conditions where people can, to an extent, make it up, pretend the symptoms are there and, probably because of that, it’s taken in the same degree of seriousness as ‘man flu’ or a ‘bad period’. In other words, an excuse. Anyone that’s really felt this though wouldn’t want to (or need to) exaggerate it at all. It’s invisible to most, easy to dismiss and, some of the worst people for dismissing it are other sufferers who wrongly presume all cases are the same and what worked for them will work for someone else. No, stop doing that. Your condition is yours, mine is mine. You have no reason to downplay yours, I have no reason to exaggerate mine. We need to trust each other on how much our experience affects us and others. I am happy for anyone who finds what works for their version of a normal life. It could be full time work, part time, voluntary work or struggling with housework. All are valid for the individuals and we must respect that because we all deserve to be respected as tellers of our own truths as opposed to liars and scroungers
My Current Condition
On top of the CFS I also have allergic rhinitis, I have Urticaria , currently whiplash to my back and next following a car accident. I’ve a sty on my eye which hurts and makes my vision blurred. Medically my immune system is always low, my vitamin D is always low. Familial hypercholesterolaemia
Coping with that on a daily basis is tough. Just about everything there is invisible. It’s comical when others not going through what I am expect my help (and get it) complaining about how hard they have it.
Links:
ME/CFS https://www.meassociation.org.uk/about/what-is-mecfs/
Urticaria https://www.nhsinform.scot/illnesses-and-conditions/skin-hair-and-nails/urticaria-hives
Allergic Rhinitis https://www.nhsinform.scot/illnesses-and-conditions/ears-nose-and-throat/allergic-rhinitis
Vitamin D https://www.nhs.uk/conditions/vitamins-and-minerals/vitamin-d/
Familial hypercholesterolaemia https://www.nhsinform.scot/illnesses-and-conditions/blood-and-lymph/high-cholesterol#introduction
Whiplash https://www.nhsinform.scot/illnesses-and-conditions/injuries/head-and-neck-injuries/whiplash