I am in a muddle this morning, not really surprising as I felt as though I spent my entire weekend that way. It felt somewhat bitty and out of sink with normality, almost as though I was doing nothing but playing catch up and failing over and over again. I suppose that after last week that shouldn’t have been a surprise, in fact, it should have been totally expected. This new routine isn’t a routine yet and I know that is what is wrong with me, I just need time to settle and sort out the best way to make it work for me. On top of that Adam spent some time yesterday sorting out the two main cupboards that needed cleaning out and switched over. Like everything else of that nature, it meant that I had to keep going back and forward to answer questions and sort out the bits that only I really could. It is those on the surface easy to achieve tasks that actually are totally exhausting. To the fit and healthy wondering around between two rooms in your home is a problem, to me it isn’t just physically exhausting but mentally. Every time I am on my feet is an opportunity for me to land up on the floor. It may not sound sensible to many, but there is an amazing amount of stress involved in concentrating on every step, scanning every place that your foot will land and the possibilities of where you might land if it went wrong. Walking is a danger zone and one that is fraught in every way possible. I will be really glad when the last bits required for the shift over to wheels actually takes place. I am not stupid enough to think that I will just sit in my chair and not have problems, but whatever they are, they can’t be worse than the way life has been in the last couple of months.
Even though for a long time now I have grouped tasks to save energy, life isn’t that simple. I know that without a doubt if you counted the number of times that you carry out the simple task of breakfast, you would be shocked by the distance that you actually walk and the number of times that you travel over the same piece of floor, thanks to forgetting something. Now imagine the same task for someone who has virtually no memory and muscles so fatigued that they just want to collapse. That is only breakfast, try spreading that over your entire day and you start to seem my problem. I know that the wheelchair won’t help with my memory, but I hope more than anything that it will make those lapses safer and less tiring. My greatest doubt is exactly how my arms are going to take it and if they actually still have the strength to manage day after day of propelling me around. Yes the answer will probably land up being an electric chair, but before I even think about tackling the NHS over that one, I need to be able to prove that I have tried all other options and thought it all through.
On Saturday, I had to ask Adam for a little help. About 18 months to 2 years ago I had found myself in one of what is a rare position, of needing to scratch my back in that tiny window of time between getting undressed and actually being lain on it. My back itching isn’t anything new, we all get it, but I have to be careful how I go about scratching as I have several large moles on my back. I have in the past caught almost every single one of them with my nails, sometimes just painfully other times making the odd one bleed, part of the problem of having long nails. On that occasion, I remembered gingerly trying to scratch around the area where I know one of the smaller raised moles is and discovered that it felt as though one of the edges was raised more than usual. I didn’t give it a huge amount of thought, but I did a couple of days later fetch a hand mirror into the bathroom so I could take a look at it. All appeared well, so I shuffled the memory into the back of my mine. This weekend I once more felt that urge to scratch and my back was bare. My finger landed on the mole, I scratched around it again, but this time I didn’t discover a slight raise, I discovered that there was a distinct lip. After my nap, I asked Adam if he would take a picture of it with his phone so I could really see it, without pretending to be a contortionist. I have never seen anything like it in my life, not on any body or online. Which yes, I did check once I had the picture. The brown part is about the size of a pencil end and it feels and looks as though the once brown flat mole, is now slipping off its old position exposing a new and developing mole beneath it. I have to admit that I was in two minds when it came to asking Adam to take a picture of it. He worries so much about me that giving him another possible reason to worry, just didn’t feel right. Without a picture though, I had no way of knowing what was happening behind me. Luckily, once he too saw it and had a chance to think about it. didn’t seem worried.
As anyone can see it’s no longer a normal average everyday mole, so I phoned the doctor this morning to see if they would give me an email address to which I could send a copy of it. To my surprise, they actually gave me one, so I am just waiting to hear from the Dr as to what he thinks. Which once again gives a reason to not see today as quite, peaceful or normal. I am sure that day will eventually appear.
You don’t know how much that I am looking forward to what I could call just a normal day without any dramas with my health. I still haven’t found a new home for my nebulizer, but I was glad it was where it is last night. I knew without a doubt that there was something wrong. I had been sitting on the settee for about an hour, but I found myself feeling hot, faint, dizzy and had that overpowering white noise in my head along with a growing headache. It was when I felt beads of sweat on my upper lip. For the first time, Adam was here and he could see the result of my oxygen monitor which I asked him to fetch from the bedroom. I had left it there to stop me from being tempted to keep checking, my oxygen levels were around 84, following the nebulizer it rose to 93 and a half an hour later was settled at 95. I can’t believe that I have spent months feeling like that on and off without the proof that there was really something wrong or the help to put it right. It’s frustrating that there are no clear patterns or triggers so I simply can’t avoid it, my PRMS can simply close me down whenever it chooses. If I wasn’t already housebound, I could see how easily this alone could force someone to stay at home. It often feels as though my body is desperate to prove in as many ways of possible that I can’t win, well it’s wrong, I’m still here!
Please read my blog from 2 years ago – 14/09/2013 – Locked out of life
It’s Snoreday again, a constant earth-shaking noise that tells me he is both happy and at home. I don’t sit here in otherwise silence, just as any other day I have the TV on competing for not so much my attention but space in the sound waves that reach my ear. There is actually a strange thing worth trying…
I’VE BEEN SITTING HERE FOR A LONG TIME; TRYING TO FIND THE RIGHT WORDS.SINCE I STARTED COMMUNICATING WITH YOU, I’VE BEEN PUSHY AND EVEN DUMB IN MY COMMENTS.WE ARE DIFFERENT AND I DON’T UNDERSTAND HOW THINGS WORK WITH THE NHS; OR EVEN YOUR HOME.THE NEBULIZER IS A PAIN, BUT IT WILL BE YOUR BEST FRIEND. I THINK THAT YOU AND ADAM SHOULD START THE PAPERWORK FOR AN ELECTRIC WHEELCHAIR. I’VE WANTED TO SAY THAT, BUT HERE IN CANADA,WE ARE RESPONSIBLE FOR OUR OWN. IF YOU CAN GET ONE; YOU ARE MORE THAN ELIGIBLE FOR ONE. IT WILL GIVE YOU THE “NORMAL”, (PLUS NEBULIZER), THAT YOU NEED. FORGET PRIDE AND POLITENESS.WE WANT YOU HAPPY AND ALIVE FOR A LONG TIME. THE MOLE SCARES ME, A LOT.I HAVE A SCAR, THE SIZE OF MY FIST, AND ALL I HAD WAS AN ANGRY FRECKLE. EVEN IF IT’S BENIGN; IT NEEDS TO GO.YOUR BODY IS TOO WEAK TO FIGHT OFF, WHAT THE MOLE CAN TURN INTO. I HATE TO PREACH,BUT I HAVE A BIG MOUTH AND YOU CAN TELL ME TO SHUT IT. I JUST CARE. IT’S MY NATURE.
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I am still waiting for the doctor to call. Until I hear from him, well I don’t have a clue what to even think of it. As I said nothing I could find was even similar.
The system for wheelchairs is a little nuts here. It is all about how they assess you. There is no paperwork at all, what is needed is a visit first from the community OT, then from the one who works at the Wheelchair department. What you get or don’t get depends totally on them. I learned from the mess that we went through the first time, you have to have all the details exactly right. Otherwise, well you don’t get the help you need. The NHS is all about box ticking, not form filling.
I admit that at first I used to get really angry with you, but since we have learned a little about each other, well I think we muddle along just fine. 🙂
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I KNEW I WAS BEING A PAIN IN YOUR BUTT.I’M SORRY.I’LL TRY TO BEHAVE. I LIKE THIS NEW FORMAT,. IT’S MORE PERSONAL.ENJOY THE DAY. .
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