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! 🙂

No rest for the wicked

Today has been a busier day than usual. I have been pacing myself and am resting up for an hour now before I get up and try to sort a few more things. My blood results for some reason still haven’t been sent to my doctors and the hospital computers are down so they are sending them by post today, so I need to phone the doctors on Thursday to see if they are back and what they say. My guess is anemia I have had it several times and it would explain the constant tiredness of late. 

I am hoping to go out on Saturday for maybe an hour if I can manage it. There is a lovely pub/resturant literally just down the road where my partner is moving too and as it was the place of our second date, it holds good memories for us. I would love to be able to go there, and hope I will be well enough too, but I am trying not to get too excited as the disappointment I will feel if I cannot manage it will be great. I haven’t drank alcohol since October and although I was never a big drinker I do miss the occasional glass of wine in the evening. I don’t miss drinking and I haven’t drank for two reasons, one I am on so many different meds that say do not drink on the label, and two I have felt sick at the very smell of it recently. I was always more of a pint girl, which surprised a lot of people as I apparently don’t fit the image.. which in itself makes me wonder what that image is exactly. I was an original goth, and spent many years dressed in black, eye liner, lace up boots long dyed purple hair and wild make up. Over the years this has calmed down, but black is still my first choice of colour to wear and my wardrobe is full of it. Since becoming unwell I have started to wear lighter colour clothes, grey and blue mainly because it is very hard to find pjs in full black! This should be something that is changed, and if I had the energy to sew etc I would make my own clothes, all in black touched with grey. I for years bought clothes then adjusted the shape, hem, style myself as I have never liked wearing something everyone was wearing, I liked to add my own taste and style to my clothes. I scoured second hand shops and charity sells and picked up items I knew I could alter to my taste. I have sewed, changed my sons clothing too and he also likes to wear clothes different to the years style. I hope one day to be able to sew again, maybe by machine as this will save time and energy. I have also made curtains too and It’s something I have found very satisfying over the years and very soothing for me. 

It is half erm at the moment and the only reason I guessed that was because my upstairs neighbours kids have not shut up or stopped banging around for two days. I am not a person to expect total quietness from kids, I believe children should be children and run off their energy, get dirty in the park, anything that expresses their personalities and joy of life. Childhood is so short, it’s important to enjoy every second of it. What I do expect though is if you have four children, not to let them run around the home that is in a block of flats with elderly and unwell people from 6am til past midnight. I don’t know what the heck they are doing, it sounds as though they are dropping cannon balls on the floor or at the very least some kind of weight lifting equipment as the noise is horrific. Especially when I am in bed directly above the said noise trying to rest, relax and sleep. There is no chance of doing any off those things at the moment. Usually I would knock on there door, but as I can’t do that I will have to go to plan B.. Knock on my ceiling with a broom. Yup, as harsh as that seems, I cannot stand two weeks of this constant noise that is so bad my ceiling is shaking. If the said neighbour then knocks on my door to ask me to stop knocking on their floor then I can then talk to them about it. But until and if that happens, my broom will have to do. Rest and sleep are the main things I need and I am getting neither at the moment. It’s becoming a real problem and I have to do something to try to stop it. I am actually starting to get a twitch with the annoyance of the noise! Now where did I put that broom….