I woke this morning from a half dream, pulling at first at my duvet cover, trying in my muddled state to separate the sleeve of the top I wasn’t wearing from the table in my dream. I woke because this is so similar to dozens of dreams I have had before and muddled or not I recognised it, waking enough to stop myself and pull my arms back under the cover, I wish I hadn’t. When I next woke it was because I had just dreamt that somehow I had peeled a complete fine layer of my little finger nail and I was trying to give it to someone, but I had dropped it, once more I was picking at the duvet cover. It wasn’t until I had eating my breakfast that I realised that I had ripped my little finger nail on my left hand at it’s base and nearly half way into the nail. My much loved long nails, now has a problem nail, repaired with super glue, but until it grows out, it will remain a problem. I had managed it, even in my sleep, because it has grown in a really odd shape, thanks to my typing, it has this twisted shape, where I have constantly put it under pressure, especially when copy pasting, something I do a lot, from twitter to spreadsheets and back. I was warned when I went on the morphine that they often produce vivid and worrying dreams, for the first two years there were none, then suddenly at the start of year three, these stupid dreams before the alarm goes off started, not every morning, just occasionally, but I am so used to them now as they always involve something that requires me to be picking something up, which always turns out to be glued to something that I have to separate it from and the duvet is always the victim. I think it is the fact that they causes a physical action and aren’t just in my head is the part that I find most worrying, who know what I could actually land up doing.
Yesterday had passed pretty much as it had started, until I had my nap, at that point I decided to take another booster and try again just to get a little peace. I know that most of what I had gone through since Thursday is down to the kick back from my visit to the Dental hospital, this is all down to going out of the house and being stretched to my limits. I remember when I was chatting to the consultant and when I told him that going out was going to knock me for six for several days, he looked shocked, it was then that I felt that he started to take more interest in what I was saying about alternatives and ways things could be improved. I honestly don’t think that any doctor who hasn’t had someone with a condition like MS in their care, has the slightest idea of how their everyday requests, are our everyday nightmares. Most of Sunday was just as I had written about Saturday, sometimes my life is just too predictable, mind you pain and exhaustion are very much the same regardless of the day or reason. The combination of the lift in morphine and spending some time lying down seemed to make a difference, at least my gut had shut up and sitting wasn’t a constant twisting a shifting process, just trying to find the impossible comfort. Right through until about 7pm, things felt more normal and I was grateful for just getting a break. When I shifted myself to the settee so that I could see and not just hear the TV, the way most of my so called viewing is done, I once again found myself in pain. When things are frantic like they are just now, I should have been prepared for it to get worse again, the settee is just that little bit lower and to reach the table I have to hunch forward, something I do a lot, as it’s actually easier to breath in that positions, but it puts pressure on my internal bits and they don’t like it.
Settees are another thing that should really go on that list of thing we buy for all the wrong reasons, ours admittedly needs some work done on it, the type of work that if I were still working would have been done years ago, but when it does get done there is an extra item I now want changed, the hight, I want it raised by two inches. Even one inch would do really but a lift in hight would mean I could once more sit on it without being crunched, regardless of my position. I have like most of us I suppose noted that all the seats that older people choose to sit on are always higher than the modern shapes, I always thought that it was purely down to pain in their hips and knees when it came to standing up again. Now I understand that there is much more too it, yes joints are an issue to them, but I am sure that part of if is their muscles wasting, I can no longer get off the floor without an array of things to hold onto, so I know all about that. The settee has the same issues as the floor, even though it is considerably higher, I still struggle all to often to find the strength needed, it is no longer a fluid and elegant process in any way, shape or form.
That last sentence set me thinking, I can’t actually think of the last thing I did that was elegant, probably it was some fluid turn that I made in my wheelchair, I had become quite nifty in my use of it, but that’s how long ago it is. Elegance and PRMS, in fact any form of MS, don’t go together. I always made a point though that I didn’t let myself look like an invalid, I wore all the mad clothing I had worn all my life, tiny mini skirts included, wild hair and perfect make-up. Walking with a stick or sitting in a chair wasn’t the end of my being able to be me. I will take that back just ever so slightly, I did slip badly before I had the chemo, but everything about me had slipped at the point, in fact I didn’t know who I was any longer as I was a total mess. Post chemo and I picked myself up and returned to being me and getting that second chance meant I was going to do it all with style, if not elegance. I guess we all have our own look and style but I was lucking in one way, I had always loved over the knee boots, I can hear the question marks popping, the boots I loved where black sued and with the laces at the back, perfect for life in a wheelchair. I never understood until I was myself in a chair why so many covered their legs with a blanket, I thought it was to cover their withered legs, but I soon found that it is because summer of winter, your legs get cold. When you aren’t walking and your not using your muscles, legs get cold, add in the air being thrown at them flat on as you move and they chill further. High boots were the answer, just with tights in the summer and socks in the winter, I always wore flat heeled shoes, being taller than Adam I preferred not to make myself even taller, so getting in and out of the chair wasn’t hindered either. Knee high black suede boots, black tights, black knitted mini dress and a black ankle length coat, made up what I though was an elegant look, even when sat in a chair. Yes, that was my last elegant act.
When our bodies stop us living the way we had planned, I think it is essential that we at least feel good about how we look, back then I was slim so the mini lengths might not be so appealing these days and pyjamas are my every day dress, but I still wear my favourite colour every day and the splash of my waist length purple hair, just helps to make me smile. Elegant in action, I may not be, in fact floundering, wobbly, stagger lurches are closer when it comes to my actions, but if you have those touches of who you once were, they make all the difference.
Please read my blog from 2 years ago today – 10/11/12 – Talking shorthand
Although I won’t be attending I have received the invitation to Teressa’s wedding and it shows one of the few things that her Father and I ever had in common, the invitation is a card version of the Tardis. She may have spent the majority of her life abroad but her love of Dr. Who and all other……
Pamela iam in awe of how beautifully you have excepted and come to terms with your illness . In my view you are just as normal as anyone of us , disability can happen to anyone but how we deal with it is all that matters . Life is not constant nothing in the universe is and normal is just an illusion . Keep sharing and keep inspiring. Sending love and blessings your way @mikichill