Pain meds

My new neuro/seizure meds have been brilliant in making me not only feel better but in stopping leg locking and leg spasms.
The pain meds I started on Monday haven’t been so good. I have had tremendous pain yesterday and today, my limbs swelled and muscles are burning. I phoned my pain clinic specialtist but she wasn’t in so was referred back to my doctors to help. My Dr was really quick in getting back to me and has highered the meds to four times a day instead of two. I am really hoping this will help, the pain hasn’t faded so far and by past experience I know will linger for days. Here’s to the higher dose helping! 🙂

I phoned PIP yesterday then Atos and I was told my claim had been processed and a assessment is needed. When I asked how long that would take they said it could be another ten weeks… So it’ll be nearly seven months by the time I see someone and another 3 week’s on top to decide if I’m unwell enough to qualify.. It’s absolutely ridiculous, I am told I need carers, home help yet until I am accepted I won’t recieve help. It’s a circle of hope, frustration, frustration, hope that never stops. It’ll stop eventually and I will just have to be patient and phone them every week to ask them if an assessment date has been made. Experience has taught me to constantly phone asking for updates as it keeps them on their toes to actually do something and it annoys the heck out if them and they will give you an appointement just to get rid of you. Underhand? Maybe, but it’s for a worthy cause! 🙂

I was due at the hospital for X-ray and blood tests tomorrow but there is no way I can get there to have them done, plus if someone puts anything on or in my arms then I will jump to the ceiling! Best to cancel and I have re booked it for next week. Better to be safe than splattered on the ceiling, that isn’t going to be pretty for anyone concerned.
😉

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. 

 

 

 

Help comes from the most unexpected people

I have had trouble writing the last few days. Not because of frozen fingers, I am used to that now. But when I type I am increasingly starting to type words out of sequence and this is very odd. I am either writing the word backwards or in a jumbled mess with the letters all in the wrong order. I have spent more time correcting words than writing anything the last few days and I am a little puzzled by it. I am guessing it is a neuro thing, my head has been fizzing none stop the last week and crackling more and more even without turning my head. It feels as though I have hundreds of fireworks fizzing in there, you know the moment before they explode that fizzing crackling sound they make? That is what is constantly filling the base of my neck and head. I don’t have any doctors appointments lined up and to be honest what can they do, I am already on the highest Gabapentin limit of three tabs three times daily. I am still phoning to check any cancellations coming up so I can see a Neurologist earlier than June but no luck yet. When you have chronic conditions there is only so much a doctor can do no matter how good they are. My doctor is brilliant but admits that she can only do so much to try to help lessen the conditions impacts on me because they aren’t curable. We get put into specialist hands who also then can only help ease symptoms and once they have done all they can then you are left on your own to deal with things. I could phone my doctor and explain my new symptoms but I know nothing will come of it, it will be noted down and that’s it, I am left to deal/cope with it the best I can. I prefer not to be constantly in contact with doctors etc but I do sometimes think I just want something to stop it all, the symptoms, the deterioration of my body the constant pain and barrage of things that happen daily to my body which I cannot control. But until they find a cure I know I can only do what I feel best helps me and my symptoms.

I have always been a very private person, never one to talk about myself or my life. This blog is the only place I do so and I do find it helps. But there are many people who know me that didn’t know I was unwell, apparently they just thought I was busy or being quiet and missing me when I went out. This now isn’t the case. A good friend of mine kept being asked where I was by people in our local pub and around the area. As I said before in a blog, I have lived in my area for 16 years and am a familiar face. Well, he kept quiet and didn’t tell them as he knows how private I am and was hoping I would get better which unfortunetly hasn’t happened. Anyway, when I was out in the wheelchair last month going to my opticians appointment I saw many people I know and the shocked looks on their faces. So it was out that I am unwell, and the lovely thing is people have been great and my friend has convayed to me their best wishes and to get me to the pub and get me drinks in til I explode from coca cola. Also there are many offers of help and support if I need it. I was and am very touched by this and yes I live in a rough neighbourhood but people come together and help each other out when times get rough. A very old fashion but lovely way of doing things.

I didn’t hide my illnesses because I was ashamed or didn’t want to be seen, I was trying to cope with them and how they were turning my body and life around 360. I shut myself away yes, but that is how I tend to deal with things until I myself come to terms with something. And well, I couldn’t go out anyway so shutting myself away was something that also happened because I pyschically couldn’t leave the flat. I have never had loads of friends, but only a handful that I trust and have stood by me through this last year. But I know a lot of people to say hello to, or chat to in the local shopping area, pub, corner shop, lifts etc and know a lot of people as their children went to school with my son. A bunch of us used to chat at the school gates and help each other out if one of us couldn’t pick up their child from school because of work, appointments etc.. one of us always stepped in and made tea etc and looked after their child until they could be picked up. So my dissaperence from our area was noted, which I didn’t think about at all while I was in my bubble of illness. It is good to know that if I do get out there will be people who won’t stare, make comments etc as they now know my situation and won’t feel like an alien object and can be my usual self, just now residing in a wheelchair.

I have found that the people who I thought would stand by me haven’t and the ones I never thought would stand me have. Another lesson that having chronic illnesses has taught me, expect the unexpected because that is exactly what you will get.

That Friday feeling

Last night was a lil odd as it was the first time in ages my partner wasn’t with me. He was at his new place sorting everything out and slept there. I tossed and turned a lot in the night, because he wasn’t next to me and I kept wondering where he was in my sleepy state. It’s odd how you become used to someone sleeping next to you and how it affects you when they aren’t there.
I will be spending tonight and the weekend at my partners place which I am really looking forward to! It’ll be the first time I’ve ever spent away from my place without my son ever which will be odd, but my place is going to have people staying and my partner will pop in over the weekend. I never spent time away from my son for more than two nights and that was when he stayed at my parent’s for a long weekend. The change of scenery will do me good at the moment, I havent left my place in nearly a month and I am starting to get a bit cabin fevery. It’ll be hard work to get out, I will be wheeled to the taxi then it’s only a five minute journey and pop back in the wheelchair to get out the taxi and into the new home. This will wipe me out for hours, and I am going to time my meds for an hour before I leave so the pain is slightly helped by them. I am actually getting excited about seeing my partners new place, its all on one level which will be so much easier to get around. It’ll be a new chapter in our lives.
My blood results still haven’t been sent to my doctors so I need to phone them again today to see if they’ve finally arrived. It’s ridiculous, I waited two weeks for a nurse to take them now it’s nearly two weeks for the results. Hopefully they will be ok, or just show I’m anaemic.
I am going to take the long decent downstairs and sit with my son for a lil bit now. I don’t know how long body will let me do this today as I am aching badly. But I can only see and once the stairs are tackled it’s just a step into the living room.
Here I go… Wish me luck! 🙂

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 😀

 

 

 

 

Forgetting you can’t do things

I was watching a zombie film with my partner and as it was a B movie it was ridiculous, but funny in it’s ridiculousness. There was a scene when all a certain lady did was scream and I said how ridiculous it was and not only portrays women as useless in these film situations and you wouldn’t see me screaming, I would be running across the car park shooting the things as i went with the machine gun, as would many women. My partner then pointed out that I couldn’t really as I can’t run, but we would equip my wheelchair up and we discussed ways of wheeling me straight through them shooting as I went. Silly convo yes, but very typical of our film thoughts and suggestions. The thing was, as soon as he said, well you’re wheelchair, I until that moment had forgotten I could no longer run. I can barely walk let alone run. But I had forgotten and said I would be useless in any situation like that now, hence the discussion about arming my wheelchair up. 

Until that moment I hadn’t thought about running, whether I could or not. Or walking. It’s something that doesn’t fully register in my head yet, I have never had to worry about not being able to do things I take for granted. I think most people take for granted, and that’s why I instinctively go to do things then stop mid way and realise that it was a really bad idea. Picking my mug of tea up, I have hand shakes and can no longer lift the mug normally I have to use both hands to carry the weight or I will drop it. The amount of times I have dropped things, tins, bottles, cutlery, cartons of milk I have dropped because I just instinctively picked it up and did something I had done since I was a child. Our brains are wired to remember how to do things and as you get older you just do them without thinking. Now I get into all kinds of muddles because it doesn’t register straight away I cant do certain things anymore and I still  do things, think things like being able to run without thinking along side it that I am no longer fully able bodied and I shouldn’t do it. I don’t know if this is typical to others, I would be interested to find out. 

At what point does your brain kick in and say, leave it, change the way you do certain things, you cant do that anymore? So many times I have gone to stand up first time, as it takes certain manovures and several attempts to stand now, and I have been crippled with pain shooting through me or I have simply just fallen over. To think, I need to get a Birthday card, a gift, some eggs, then realise I can’t get to the shop. Put my arms out to stretch as I am tried, then have my arm lock for up to an hour. Go to pick something up when my arm/hand is numb. I am learning to think before I do things, will it hurt me if I do this, should I do it, try doing it, leave it and ask someone else. But my instinct of doing everything by myself and not having to ask someone to lift my cup for me still over rides my caution. I have to re train my brain all over again, and it’s much more difficult the second time round because I have 33 years of experience and instinct against over a year of being unwell, and just over six months of being like this and deterioration. How long will it take before I do quieten down my instincts and think before I act? How many more accidents will I go through before my brain says, nope don’t even think about doing that, your’e not able to and will suffer if you try or do. 

I really just still don’t see myself as not fully able bodied anymore. In my head I can walk, run, shoot zombies, sit up straight, sit up at all.. In my head I am still the same person I always was, in my instincts I am. I know when I am thinking things through and do stand gently, lay down, pick a mug up, use this laptop to type as I can barely write anymore. At those times when I stop to think, I am more cautious and don’t do anything I am not able to. But when it’s instinct I get in trouble and suffer with the consequences. But in that split second I pick up that mug, there is no thought, no caution just years of repetitive action. Hence why I still don’t ask for more help, it’s not because I am stubborn ( well, I am really stubborn but not at the cost of my health) it’s simply because I don’t think before I do something. It’s an alien concept.

As is the future planning. You live day by day, morning by afternoon by evening. You can wake up feeling a bit better and be able to load the washing machine, but by afternoon you are crippled with pain, joint locking, amnesia of what a washing machine does, any and all symptoms and spend the rest of the day having to rest. Or vice versa. I will think about a certain place I would like to go, the zoo, a meal out, visit my parents then realise I can’t. Weekends away, holidays, going to a reunion, seeing a friend anything that is outside of my home and longer than an hour just isn’t possible any more. With chronic condtion/s there is no future planning, no rest from it, no breaks away to help heal your body and mind. No planning of anything, no dreams, no going anywhere because I am trapped in a body that no longer works as it should. Trapped in the instincts my brain doesn’t understand has changed. And for me these are the hardest parts of my illnesses to accept.