It’s so difficult to cope with a condition I know will never get better.
To carry on being me with ME.
I love easily, I help beyond my capacity, I forgive endlessly.
I do those things because of who I am. Who I want to be but …
Doing so is breaking me.
I need to learn not to volunteer, to say no, to not care when someone acts let down by my decisions. I need to stop wearing my heart on my sleeve, to make others prove their value of me before I keep on giving.
For maybe the last dozen years I have just been on a destructive path. Trying to do the right thing and being taken for granted for it.
Agreements of any kind made to me have no value, they are taken back when the giver changes their mind no matter how sincere the promise felt at the time.
To cope with ME, alone, I need to stop being me.
By the way, if you don’t understand the title is about my condition, you don’t know me well enough to matter or, you don’t care enough to remember.
Post-exertional malaise (PEM) is the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks. PEM can be mitigated by activity management (pacing).
I have been suffering for a few weeks now and I am hoping that this week I can get myself back to some sort of pacing. Sadly, unless I want to risk something going horribly wrong, I am going to have to say no a lot more often.
Ah, but, I hear you say, you just need to push through it.
That is precisely my problem, I keep trying that. The results of stupidly trying to push through knowing that this very act makes matters significantly worse astounds me and yet, that is what I have been doing.
Do you know what it feels like to forget your address? I have lived here over 20 years and I just couldn’t remember it. I was totally relaxed, not stressed at all and my brain just wouldn’t go there. That is a result of pushing through. It’s scary, it feels how dementia must feel. It’s not just a moment of blankness, it took me many minutes, too many minutes using a process of elimination before I got it close enough, it still wasn’t quite there but it was near to it!
Driving knowing I am too tired, that I am not at all alert and having to push through to get from A to B. That is mega scary. Planning a trip around a nap break. Not because I didn’t sleep at all, just because it didn’t work.
By exercising we are not referring here to going for a run or even a walk. It can be something like doing household chores, even feeding the cat! Mostly the above chart is spot on. It’s all very depressing in nature but, it is what this condition feels like and it’s not imagined.
Having too many days when waking up feels exactly the same as heading to bed, nothing has changes apart from some missing hours. Knowing that last night I went to bed feeling like this but somehow, I got to get through this day feeling how I felt last night!
Pleasure being measured by the possibility of just sleeping. Getting into bed, putting the phone too far away to hear, no alarm clock, no deadline, just resting.
The absolute madness of seeing a call come in on my mobile and knowing that the very action of taking that call is going to ruin every plan I had for the day. Trying to stay cool and not get mad at them when right there and then I just wish they’d left me alone. It’s always wanting me to do something, ideally now. So rarely do I get a call where someone just says “fancy a coffee, my treat”.
Even when I am given help I hear through the grapevine that they felt compelled to do them, like I am some great burden. It’s just so amazing when someone does something for me which makes my life better, no complaints, no reluctance, just doing it ‘because’.
Just writing this I feel my mind shutting down. Typing is more difficult as I go, more mistakes. I lose words. I start of typing and cannot think of the next word or anything like it. I feel what I want to write but the words just won’t come to me.
In the diagram above it goes a little understated or, over emphasise on quite hefty activities. It seems to imply that a sufferer going about their normal daily tasks or work and social suffer. This is way more basic than that. Just making breakfast cereal in the morning can render me unfit to drive. I know this and tend to avoid eating when I know I have to drive. As for the blue section, most are such radical events. I can get exhausted just by an attitude someone gives me, anything negative at all. It’s not realistic to expect constant adoration and praise but, all too often I feel I am being got at, used even just by the vibes I pick up that I am just too much effort.
Tomorrow I have a couple of things I need to do, I might even trim those down a little. Thursday I just have to get Dennis to and from work. I need to force myself to sleep at the other times.
I saw a shocking picture of a friend being treated for a very noticeable condition. I know they are getting shit tons of support (rightly so) and just sometimes I think to myself, why can’t people just see what I am going through here?
From 8th May for at least 5 days I have to give notice that whilst I might be available for social occasions I am totally out of bounds for any assistance anyone might need.
This includes but is not limited to, driving, IT support, Interior Design, cooking and so on.
I owe it to ‘me’ to take the break, get myself some sanity back!
When I get to the point I struggle to remember my address and fall on escalators, it’s the time to stop!
It doesn’t seem very exciting but, I had two clear days whereby I didn’t need to rush to the loo.
I’ll be honest, there was that remaining optimist part which said that I didn’t need to worry any longer, my belly was under control. It was lovely just ‘going’ like most other people.
Since June and getting over covid-19 I have had this issue of daily diarrhoea, several times a day. The doctor has ruled out most nasty things but I still have to wait on a colonoscopy to literally look into it better. The theory there is that all really serious conditions will be ruled out leaving IBS as the culprit. Who knew covid could bring that on? It’s shit really!
My stability today has been really poor. Several times I didn’t seem totally in control of my leg movements and was fortunate to have support to avoid accidents.
Yesterday I had to stop driving to rest for a while. It seems that a few minutes is enough to trick my brain. I don’t know how that works, it shouldn’t by rights but it does allow me to continue for a little longer.
Covid booster jab next week, most of the family are having it.
I still have a few months yet to wait on my medical stress test for my heart. I hope that finds nothing sinister. Not that a negative will explain the chest pains but it should rule out something life threatening.
You must be logged in to post a comment.