Changes

The last month plus has been a roller coaster of extreme downs and ups.

I’ve been quiet and keeping to myself most of the time because of this.

Health wise I’ve been working incredibly hard on trying to walk more, rest, pushing myself, pacing.

A few months ago I said about being able to read a bit and then had a complete reading block.
Well, I made myself read a tiny bit everyday, and write the it as I was going to try to make it stick in my head. Months and especially the last two weeks have paid off and I am now able to read much more which I am delighted about.

Yes it causes massive headaches, eye sight strain and sometimes frustration because I do forget things very easily. But, I am sticking with it and it is working! As a former book worm it’s so satisfying to be able to read pages instead of paragraphs, and I hope to eventually read as I used to 🙂

Along with the reading I have been building up my strength by walking everyday, no matter how bad my conditions are. Around the flat and taking my rubbish to the end of my landing Shute instead of the one next to me. Well, through this forcing I was able to get to my shop! Across the road! With my stick, and stopping so many times, and retching along the way but I made it! I have a noticeable limo nowadays, caused by my hip and back issues, I’m the pirate of my area 😉 but even with a limp I’m more upright than I was 😀

I was in bed for a few days after, and I find this happens if I walk/push too much. I walk to the Shute and need to rest for the rest if the day. Or walk around the house and need to, and the cramps, leg locking, numbness is still happening. But, it’s a massive achievement to me. Even if I can just get around the flat and to the shop once every few weeks and I’m in my chair for everything else, I feel this is enough at the moment.

I won’t skirt around the issue of being extremely down recently too. I have things going on in my personal life that have been really difficult, and juggling this, my appointments, bills, pushing myself, isolation, friends disappearing, painsomnia, trying to sort home improvements, trying to cope with my health issues.. It has kinda felt a bit much to deal with.

I don’t often get like this, usually I’m on an even keel and bat away problems as efficiently as I can.

I guess the last two years of bad health and all that it has entailed has caught up with me. But I am feeling better than I was and trying to stay on track with everything.

It’s difficult and I don’t like to feel as though I can’t face some days, but I’m aware of this and because I’m aware I can work on it.

I’ll get to my better place eventually 🙂

Losing time

I spent a lovely evening watching films and eating chip shop and chocolate with my partner last night. It was the first full meal I have eaten in over two weeks and it was lovely, the king sized chocolate bar an hour later was rather nice too!

During the last month or so I have been experiencing more problems with the neuro aspect of my conditions, I think I mentioned it a few blogs back. What I haven’t mentioned is I am having more and more difficulty writing in the correct way and also time lapses. When I write or type I am increasingly putting letters in the wrong order. For example eht for the. I noticed this a few weeks back but didn’t think much of it, I was extremely tired and unwell so put it down to that. Now it is becoming a real problem, it’s very difficult to write then have to correct all the wrong lettered words and miss a lot of them because I can’t always see the words are wrong. Also when writing on a form, I had to completely cross everything out and start again on my home move form which just looks awful. 

The writing I could put up with, it is the time lapsing that is starting to become a real issue and worry. The fizzing in my head is now constant and is now joined by what feels like little electric shocks zapping through for an instant before stopping and it starting somewhere else in my head, say my temple. It becomes worse and I seem to drift off for awhile, just a minute or so but the other day I lost 20 minutes. I only knew how long it was because I was watching a film. I came to and was in a state of confusion about where I was and what I was doing. But the feeling isn’t usually horrible, quite the opposite I feel really peaceful when coming to awareness again. But that is the problem, this drifting into nothingness isn’t normal and the fact that I don’t know where I go, for how long or am aware of where I am when I ‘wake’ is far from normal. I spoke to my Doctor about it on Tuesday and she thinks it may be little fits I am having and wanted to send the Doctor out to me. But as I said to her, still being unwell from the reaction from the antibiotics,sinus infection and devils grip I doubt an accurate diagnosis could be made. She agreed and has asked me to let her know if it is still continuing in two weeks, if it is she will book in for me to see a Neuroligist and have a CAT or MRI scan. 

I haven’t heard of this being a symptom of either M.E or Fibro but that doesn’t mean it isn’t. I have had the fizzing in my head for some months now so maybe that’s all it is, just an escalation of that. I can’t worry to much about it, as it will make it worse, rather ironic really. What I can do is try to see how often it happens, at the moment it’s daily but I haven’t lost more than 20 minutes again. It may sound silly but my thoughts are on my medical assessment and trying to sort everything I need to take that proves my ill health and that of my conditions. I can’t think about the head thing too much because with this assessment thing on top looming ever closer, it will cause anxiety and worry I just cannot have and really don’t need right now. When the assessment is done, then I can fully focus on it but until then I will continue to keep an eye on it and not worry too much about it. 

It’s a lovely sunny day today, which makes a change from the dark rainy days of the last week. It’s good to feel the rays coming through the windows and the birds flying around whistling away. Saucy devils are on full mating season at the moment and I am sure some of the strutting male birds will be disappointed and go home with their wings covering their heads. Poor things, but that’s what life is about, picking yourself up and going on after events that have brought you down. Human, animals, mammals.. we all do it and all become stronger because of it. I have faith that things always become better after a period of time and the past has shown this to be true. I may be unwell, suffering head problems and having to prove my illnesses to people that have my future security in their hands, but I am happy I am still here to see the sun, have the day ahead and be able to enjoy it. No matter what is happening I have that, and I appreciate it all the more because days like these aren’t always possible for me to experience. 

 

 

 

Slings and other things

Firstly, I would like to thank everyone who has been reading my blog, sharing it, liking it, adding me on twitter and commenting on it. I am overwhelmed by peoples generosity and humbled by the responses I have gotten. Your kindness is much appreciated and I thank each of you deeply.

Today has been a bit of a difficult one. I woke with my right arm paralised from the shoulder down and three of my fingers. I am typing using my left hand and am re writing and correcting it a lot, but I’ll get there in the end through sheer stubbornness if nothing else!:) My son made me a home made sling for my arm as it is really throbbing and spasming, and it’s really helping. I have had a a completely paralised shoulder for three days before but I was lucky it didn’t go into my whole  arm and hand. And Iv’e had paralised hands before but never all three at once. I’ll give it a couple of days and if it isn’t any better I guess I should call my doctor.. I am hoping there won’t be a need too though as there really isn’t much they can do. But I did promise my doctor to call her if I got any worse or any prolonged symptoms so I will keep my promise, with much huffing and puffing. The joys of chronic conditions eh!

This being left handed is actually interesting. I have always been slightly ambidextrious, I use both hands for everything and I taught myself to write left handed a few years ago. Not perfectly and the writing is totally different to my right hand version, but I could do it. But alas, another thing I recently realised was I could no longer write left handed. I tested myself a few weeks back and it was just a mess, and actually made my head hurt. The ability of using my left hand to compensate for my right one has helped a lot when it’s been spasming or frozen. But along with the writing the last few weeks my abiity to use my left hand has become less and less and I do wonder if this is something to do with the neuro side of my M.E. I am on Gabapentin for the neuro aspect of it and to help the seizing of limbs and have been since February. I find they help the constant terrible fizzing I get in the back of my neck and head. The only way to describe it is if you ate popping candy as a kid and remember that crackling you got in mouth and head? That’s the exact feeling I get in my neck any time I move it and in my head. It’s an odd one and not something I’ve known anyone I speak to with M.E have. Maybe others do,? just not anyone I know.

M.E is such a complex and unique condition and people suffer with it uniquely as with Fibro. In some instances I can have a symptom and think, yep that’s definetly an M.E symptom and the same with Fibro. But over the last month I am getting symptoms such as pain in my bones, knees, hips, ankles, wrist bones that also swell that I have no idea what is causing it and neither does my doctor. Hence the home visits and rhumetologist appointment. Other symptoms too, blindness in my left eye, my hair is falling out, I don’t heal if I cut myself, find it hard to eat solid food as it feels as though I am choking. Which isn’t anxiety, I suffered with that years ago and the feeling is totally different. The last three weeks my legs started freezing, the muscle locking causing absolute agony and at other times just total numbness in my legs and feet. I can’t feel them at all. It’s a really odd to try and walk with numb legs and feet, you cant feel your leg moving or feet touching the ground and I end up walking in a side to side waddle which is funny, but deep down I do worry about it.

But today is Mothers Day and I am going to rest up and with lots of toast made in my new four slice toaster. It’s the perfect present and I may even go crazy and put some marmalade on it. Yup, i’m  living on the wild side 😉 Happy Mothers day to all the Mums out there and I hope you all get spoiled rotten 😀