It’s neuro damage not confusion

This week is going to be one of total relaxation and looking after myself without guilt kicking in, I hope. I always feel as though if I say things like that im jynxing things, thanks superstition upbringing!  
I know I need total rest, my body is screaming in pain and muscles cramping. My speech is all over the place, I’m slurring words, mixing letters up in words and sentences. I’m having to really think about what I need to say so I make any kind of sense.
I do wonder what exactly is happening in my brain to cause this. When people say ‘oh you can get confusion with CFS’ I want to scream
1. It’s not CFS!!
2. It’s Neuro damage you #@€*!

Confusion is when you walk into a room and can’t remember what you went in for. It’s when you can’t think, not when you can’t talk or even remember what bread is called and what it’s used for.
It’s having constant fizzing at the base of your head, cracking everytime you move your head and massive headaches. It’s losing your sight, feeling as though your head is literally going to explode and you don’t care if it does just as long as the pain will go.

‘Confusion’ belittles the true definition and truth of the neuro damage ME causes. It’s bad, its awful and it’s scary. When you can’t control your own thoughts, words, sentences it is frightening beyond the words you no longer remember.
Yet worrying about it causes more confusion, headaches, frustrations that for me isn’t worth doing as I am trying not to trigger anymore blind episodes.

So this week I aim to relax my body and mind. Not to do anything I don’t absolutely need to do, and I am hoping doing this will help my escalating symptoms and debilitating health.
Fingers crossed! 🙂

Restlessness

Yesterday was a quiet but nice day. It has been incredibly hot this week, more like mid summer than spring and I really am not a fan of the sun. But with my blood results showing how seriously low my vitamin D levels are I have been sitting on the balcony twice a day for 20 minutes or so to try and get some natural vitamin D into me. Not literally sitting on the balcony of course, sitting on a chair to be precise.. I had a silly image of myself on my balcony 6 floors up legs a swinging, which is dangerous so don’t try that at home kids! 😉

I am still really hopeful about my OT visit, but now I am also now looking around my bedroom thinking it needs a serious sort out before she visits. It’s been topsy turvey for awhile and it’s really starting to bug me. I like things tidy, not OCD tidy but not so messy that have no order whatsoever. Everything takes so long to do though as I get so tired and painful after a tiny amount of physical movement so I am going to do a little bit each day until Thursday and it should be sorted by then. Touchwood!

My mind has been really active this week, I can’t seem to be able to focus on one thing and my attention keeps jumping to various things at once. This morning I have my facebook, twitter and blog page open also several blogs I am reading, my asda home delivery page and Youtube. I keep jumping from one thing to another, not being able to concentrate on any of it but still trying too. I have tried shutting all pages but one off but after awhile I find myself opening up different ones.. Then I am trying to do several things at once, prep food, wash up, tidy which I know is going to end in disaster because multi tasking is no longer possible. I don’t know why I am doing it, I just feel really restless and want to do as much as possible yet I can’t and I end up getting annoyed and frustrated at myself. I have hardly slept for three nights because of pain and in the early hours of yesterday morning my leg decided to lock and cramp when I moved in my sleep, for 3 hours. This is not a pleasent experience at all, you know how your leg can cramp and your toes go into a weird moving muscle sensation, that’s exactly what it was. Along with the muscle deciding not to go back after gentle rubbing, but stayed around for a few hours like an unwanted disliked guest at a party you didn’t want to go to. The muscle locking is now a daily occurance, one part of me decides to lock then another joins in as though it’s missing out on something, when all it is missing out on is being cursed at by me! I think the lack of sleep is a big factor in my current restlessness, I am hoping to sleep tonight because spending another day like it and dragging myself around is getting very tedious.

I have seen more and more chronic condition sufferers doing video blogs along with their written ones and this interests me. The aim is to visually show exactly what these conditions do to you, how a person looks, speaks, and generally acts. I think this is a really good idea, for many seeing is believing and if it helps to get these conditions more recognition then I am willing to do it. I’m not sure how many people would want to see sweaty, shaky, no make up slurry me I myself am not to keen on my look either! But I am considering doing it for the cause ( sounding like a sufferagette) maybe for my 50th or 100th blog. That’ll then give my blog readers enough time to prepare themselves for that horror ahead.. 😉