When I asked people to share their frustrations of M.E. one of my friends said to me that her whole life is a frustration, that I can share some pieces from her blog to illustrate how difficult it can be.
Still not found my mojo, am teetering on tearful at times. This mind-numbing continual bombardment of pain and exhaustion has left me feeling decidedly flat. Devoid of any other feeling. Not depressed, not elated, not anything.
I want to say stuff, I want to post on facebook, or comment on stuff, but on the whole I know what I want to say but then can't be bothered to finish, or can't quite decide how to say it, so I'm just like "what the heck I can't be arsed" and deleting it.
And now I am going to finish as I can't be bothered to write anymore. My body and brain are, whatever, I don't even know what I was going to say so I can't (oh god that's it I'm lost for words).................
Well another week has passed. A week of occasional social activities, followed by wallops of payback and pain. A week of sleepless nights followed by two nights of successful slumber (which strangely has left me feeling more sleepy during the day).
This is the normal routine now. Just trying to have a life, to know that you are going to have to store up reserves for a simple trip out for a couple of hours and know that you'll still be left owing after. To know that if you manage one type of pain, you can bet that another type of pain will be ready to come bite you on the arse. To be sure that the more tired you are, the more likely it is that you will not be able to sleep a wink, like kicking someone when they are already on the floor. This is life with ME, it's a constant robbing of Peter to pay Paul.....
So here is the point where I was going to write about the positive things in my life. They are definitely still there, just right at this minute I have not got the energy to put them into words. I am sooooo sleepy, and feeling nauseous and my back is hurting again. So I am going to post this right now, and perhaps when I've had some more sleep, I will feel like being positive again.....
Oh how the weeks are flying by in a blur. Literally. I can barely remember what I was doing yesterday, and trying to recall last week is like trying to look at an out-of-focus picture - you can just about see a vague outline of something or other, but you're not sure what it is, but it has a familiar colour to it that invokes some memory or other that you just can't put your finger on.
I have been trying to keep a diary. This is for various purposes, one being to try to remind me what I've been up to, how I've been feeling, how many good or bad days I have. What, however it has been mainly illustrating to me, is how many things I forget. It is the most common word in my diary. Here's just a selection for you:-
Jan 15th (day one): Forgot to write diary.... (!!!!!)
Jan 16th: Forgot to write diary.
Jan 17th: Got GP to fill in the form for hospital which I forgot about the last time I saw her. Forgot to ask for a sample pot though. / 8pm started to prepare casserole for tomorrow, but wasn't able to finish it as I had forgotten that I'd just taken a sleeping tablet.
Jan 18th: Carried urine sample around the house so I wouldn't forget to take it to pre-op appointment. Remembered to take it with me. Left it in the car.
Jan 19th: Forgot to write diary.
Jan 20th: Forgot to take my morning tablets, remembered in the afternoon.
Jan 21st: Forgot to take morning tablets, remembered after lunch.
Jan 22nd: Forgot to take morning tablets, remembered them about lunchtime, then forgot to take them again. Managed to have them at teatime.
Jan 23rd: Forgot to ring grandma, remembered at 10pm. Then realised I had forgot to ring DWP and the housing association as well.
Jan 25th: forgot to write diary
Jan 27th: forgot to write diary
Jan 28th: forgot to write diary
Jan 29th: tried to recall Friday and Saturday as hadn't remembered to write diary, but memory vague. Can't remember......
Well you get the gist of it. I could go on. It does go on. Much the same. In fact this very week (now I have started looking) I realise that since last Sunday, I only managed to remember to write my diary once, in the middle of the night on Thursday. I couldn't even remember enough to fill in any of the intervening days, apart from Monday morning, which I can remember clearly as I was supposed to be going in for surgery which was cancelled at the last minute.
So as you can tell, I have a memory problem. I am only 43. My life as it now has become consists of one big blur of stuff that I have trouble even recalling half the time. And I can't even remember to write my diary to remind myself of the things I can't remember.
I will say goodbye for now, I will try to write again soon, but I might well forget to do that as well.