What happened?

I caught my reflection in the mirror, it was one of those seconds that stopped me dead where I was. I had just been to the toilet and I was heading back to my wheelchair, when there I was, caught clearly in the mirror and lit perfectly by the downlighters on the ceiling. I was white, no, even paler than white, even whiter than this page. I’ve known that I was pale in pallor for a long time, it goes with never seeing the sun, but I was somehow, even paler than I have ever seen me before. I stood holding on the back of my chair, transfixed by my image. It brought me so many mixed feelings, but shock, was the strongest, how hadn’t I seen it before.

All my life I had envied those people who had perfectly white skin, that paleness you often see in people with red hair. I was as far as I could tell, the only person alive, who hated a suntan and avoided the sun at all costs. I did what I could with makeup to cover the blush that all white skin has, but it never looked quite right. So what I saw in the mirror, at one level pleased me, but at another, it shocked me, it shocked me deeply. Was I really that ill? You see, my skin wasn’t just pale, it looked dead. I look in the mirror every day, just as we all do, but I had this feeling that for the first time, I was seeing just what everyone else sees when they look at me. These days, everyone is used to seeing themselves, as pictures are taken in their thousands daily, but it hasn’t alway been that way. I remember a really bizarre experience I had years ago when I was shown a photo I didn’t know had been taken by my then boss. It was of a group of people who I worked with, but in amongst them was a tall, slender attractive woman, I didn’t know. I pointed to her and asked who she was, he gave me the oddest look then said, “it’s you, you idiot”. That day was the first time I realised how I looked to the world, not how I looked in the mirror. Well, yesterday, was just the same.

My skin now looks more grey than white. It has that look that makes you feel that if you looked hard enough, you could see what lies behind it and my eyes are sunk back into my skull. There is no doubt in my mind, that this isn’t only the lack of sunlight, my health is taking it’s toll in ways I hadn’t realised. Yet another thing to add on to my list of things that my health has done to me, that I have absolutely no control over what so ever.

I phoned my doctor yesterday morning and luckily he called back quite quickly. I don’t think we were on the phone for more than two maybe three minutes, less than half the time a consultation at the surgery would have taken. I went over with him what happened the other night and over the weekend. Once again, he is sending me out yet another tablet to try. Because his practice is over the other side of the city, I know have to wait for the chemist to pick up the prescription, which won’t be until tomorrow, then they will deliver it the day after. Until them, well, I just have to get on with it. Like I thought, the fact that I am still going to the loo means that he isn’t overly worried about it, neither is he going to come out and see me. All he can do, until, I get the appointment to see the consultant, is try and deal with the symptoms. So I have free usage of my Morphine booster tablets and the Metoclopramide, but I still have to take a full days clear break due to their effect on the heart. So in other words, if I can manage without, don’t take. Once again, the answer seems to be, muddle along as best as you can. Although it is never said, that always feels like the only thing they can do.

I have to admit, that today, I am feeling a little sorry for myself. I don’t that often but with the way things are, I’m not that surprised. Everything seems to be stepped up right now. For the first time in a couple of weeks, I had a run of spasms that were so strong that I could do nothing but focus on them. All the drugs that I am on means that most spasms, are more along the line of my knowing where they are, and often being able to see the deformed muscle, but as for pain, well it’s more a case of discomfort. Last night I had one that ran from the arch of my right foot, around and under my heel, before heading right up to the base of my hip. The worst of the pain was in my lower leg and boy did it hurt. I think it probably lasted about 10 minutes, with another half hour of shadow quality. I woke at 4 am, to find that all my toes on both of my feet and the entirety of my right foot, were in that identical pain. Usually, part of dealing with foot spasms is to put your weight on the good one and start pushing the bad one slowly onto the floor. So what do you do when they’re both screaming in pain? Yes, I did work it out, but boy did it hurt.

I know there’s no connection, but I decided that last night, was totally the fault of Microsoft. I don’t know if you have done it yet, but I upgraded to Windows 10. For two hours, I wished that I hadn’t as when it came up, declaring it was complete, half or my stuff was missing. I had no access to anything, as I didn’t have my passwords. I couldn’t remember how to get into my Chrome or my Google. Out of sheer frustration, and the fact that I couldn’t think of anything else to do, I rebooted. Guess what? It was all there, totally perfect and without issues. That doesn’t help with the stress that it caused me and still is. I may have all my folders back and access to all the websites I use, but it keeps annoying me every few minutes with something “new” that I have to find a way of turning off. I didn’t update for new features, I updated so that my PC didn’t land up going out of date and unable to handle new sited and programs. I just wish that when they made now platforms, that they had a button that would allow you to turn off ALL the new stuff in one, and make it work as the old one did. Reading that back has suddenly made me feel like an old foggy. How did that happen?

 

Please read my blog from 2 years ago today – 07/04/2014 – A mindset change 

I am not going to say this too loudly but…..I think my bronchitis is going away. I slept again last night with the top of the bed raised by the elevator and this morning I woke again without a painful back and able to breathe, after yesterday’s start, it is just wonderful. It really is madness where you wake one day feeling as though there is no air available and the next on the most occasional cough and one that I wouldn’t even bother normally mentioning, life is really mad at times. I do now think I have found……

 

 

 

 

 

Chaos

I found myself stupidly upset yesterday. I had gone for my afternoon sleep and as I always do before I went I had planned out in my head what I was going to do when I got up. I had taken my time in the morning not really writing or going thought my tweets with any great speed, just taking it easy with a gentle day set out for me. When I got up from my sleep I came back into the living-room expecting to just switch my computer on and get on with my plans, I couldn’t. Adam after years of nagging had decided to surprise me by washing the white wall behind my computer desk. It was taking him longer than he thought it would, not surprising to me as I used to wash it twice a year and it was over 6yrs since I was last able to do it myself. So what upset me? Well that is simple and I think many of those reading this who have damage to their brains will totally understand. I have damage to my frontal lobes and my emotions are closer to the surface if you like, I also can’t cope when things are not where they are meant to be. Adam thought he was doing something really nice but he was succeeding in scaring the hell out of me and I couldn’t hide it.

When I entered the room the first thing I noticed were some ornaments that should be on top of a unit behind my desk were on the fireplace base surround. At that second I felt agitated and I was trying to calm myself when I started to see loads of things out of place and when my eyes eventually found him, Adam on a ladder cleaning the wall. He was where I had to be and everything was wrong. To most of you reading this it will sound really nuts, but I was scared, as with everything were it shouldn’t be meant I didn’t totally know where I was. The space that is always kept set and unmoved was in chaos. Worse still the carefully made plans were also in chaos, as I couldn’t carry them through, I couldn’t get to my PC. There was a small logical voice inside me saying it’s ok, calm down, nothing is wrong, but it was just too small.

Adam could see my distress and came down off his ladder apologising and explaining that he was trying to do something nice, as it was all meant to be done before I got up. I knew all that but my confusion and distress were over powering everything. He stayed calm and spoke to me and I slowly calmed as well, the wall still isn’t finished, as I had to complete my days plans, I had to get to my PC, it was all too much for me to not continue the plans. Once I was sat in my place I calmed down slowly, Adam was great at just letting my calm down and settle into what was happening, there were a few tears as they don’t obey any commands to stay in my eyes and off my face, but for once they didn’t last.

It is really hard to put into word that feeling when something small makes you feel as thought the world has flipped into total madness. I have never known in my adult life anything that would match it before the MS caused it, so to call it agitation, confusion and fear is about all I can say, I can’t compare it to anything else other than once I was in a small car accident, I wasn’t hurt but the shocked fear is a similar feeling. Probably why some use the phrase ‘it was a car crash situation’, I do know it is illogical to react like that but once triggered finding and holding onto logic is impossible, once it is in control it takes time to pack it back up and slot it into place again. I don’t know if you can imagine having that feeling in somewhere that should be a totally safe place to be, your own living-room.

I have written before how I really don’t like things moved and Adam knows it better than anyone else, but doing so with all the best reasons in the world, still really upset me, if he had warned me, I know his surprise would have been ruined but if I am warned I have more control, as I would have played through the worse cases possible and I would have planned my day differently. If my life isn’t the same, isn’t under-control I loose control, not being in control of my own mind is one of the scariest parts of MS, and if you as an outsider so me when I am like that you would list me as mad, completely certifiable. For that short period that is how I feel too.