Body dip

As soon as I lay down on my bed, I could see flashing lights. The last part of my body had joined in, optical neuritis was clearly playing a bigger role than I thought. I had been very aware that my eyes were just that bit more blurred than usual, and that the seasick sensation, when watching anything that moved, was growing stronger. I often feel it, so it’s nothing new, but when you can’t actually stand the effect of scrolling a page, well it’s time to give up and go to bed. I don’t know why, as other people say they can see them with their eyes open, but I only ever see lights, when I close my eyes. Once I was kitted up with eye mask and ear plugs, I lay down to find that it was brighter inside my mask, than it was outside it. Ribbons of light were flowing from top to bottom, some coloured, other were just bright. Seeing odd things when my eyes are closed isn’t unusual, in fact, it was the first signs I was aware of when my right eye was affected by, macular degeneration. The best way to describe it would be to say, it looked like a miniature petri dish filled with live cells, all wriggling and squirming, splitting and dancing, right in the center of the surface of my eye, but only when my eyes were closed, unless, I tried to concentrate on it. My vision wasn’t noticeably different at first, then the blind spots appeared. They were small, all in the exact same area as my moving friends, it was a bit like looking through a piece of lace. My peripheral vision was fine, it was just that central area, and it caused huge problems, as my right eye, had always been my good one, I am short sighted in my left one. If I were to close my left eye now, I can no longer read at all, the lacy spaces once allowed me to line up a clear area and scan with just that spot, but the clear spots have shrunk. Having optical neuritis on top, apart from triggering headaches, just makes everything harder as what is still normally good, is then blurred.

I was so tired, and felt so sick, that even though my skin was crawling with life, that once I relaxed a little and demanded to sleep, I did. An hour of rest and another of sleep, made a huge difference, actually, far more than the whole previous night did. I was a long way from perfect, but I was awake and the headache had gone. I hate headaches, they somehow have such a devastating effect, despite the fact that in the bigger picture, they’re nothing. I have always wondered how come I even feel them, when you consider how well my body is protected from pain, by the mass of tablets I swallow each day. Either, they are high on the migraine scale and I just don’t know it, or, just like burning yourself, something always gets through.

I have to admit, that yesterday I was feeling rather sorry for myself. It was one of those days where it didn’t seem to matter what I did, my body was determined to make life hard. I guess, that in reality, I was quite simply worn down by everything. It isn’t normal for me to feel that way, I am normally so good at keeping my life in perspective, just occasionally, I fail, and when I do, I fail totally. It’s nothing like falling into depression, but yes, I feel down. Even I get fed up with the whole thing, and just want to scream at the world, “This isn’t fair”. Nobody ever said it was, nor have I ever believed it is, but what life deals out to us, we just have to accept and get on with. I suppose, that I am entitled to just every now and then, feel as though I’m being picked on. Today, well I don’t feel that way at all, today, I am back in my normal stride and the fact my body doesn’t understand that when air or material touches it, that that is what it should feel, not fire, creepy crawlies or numbness, well that’s just the way it is. Not once since we redid our bathroom and removed the bath in preference for a really good shower, have I missed the bath, today I do. I suddenly had a desire to lie in warm water, I just have this feeling that warm water might neutralise the sensations. That there is a possibility, that if my body was surrounded by something it’s not used to, that it might just enjoy it, accept it and stop, feeling what isn’t there. Who knows if it would work or not, it’s just a notion. Maybe, it’s part of a desire I’ve had in the last few days to go swimming, something I used to really love, but the chances of that, are even less than a bath.

I’m not one really for dreaming about the impossible, but I remember once sitting thinking about winning the lottery. In my head, I designed my ideal home, not overly lavish or even big, I’m not that sort of person. But the one thing I wanted, even more than a house I could live in, in a wheelchair, was an indoor swimming pool. Although, I never had the opportunity to even try it, as all the swimming pools in Glasgow are miles away, or require expensive memberships, but I’ve always believed the swimming would help me. Even now, despite the fact I can do little, I know I could still swim and if, for nothing else, the exercise could change a lot. I know it’s a crazy dream, especially as I don’t do the lottery, but I guess we all need our dreams. Even though it was many years ago, I still remember it, right down to the colour of the tiles and ferns I wanted growing on one of the walls. The rest of the house, I don’t remember a single thing, just that one room. It’s odd the things we remember.

Even without a swimming pool, there are some bright points, this morning, my eyes have settled, and my vision just that bit better. My body, well, unfortunately, it’s still my body, despite the fact I would happily give it away, as my nerve endings are still on hyper mode. I just keep hoping that today, or tomorrow, or even the next day, I can say I have silence, even in the smallest part of me, that’s my only goal today, just to find one. The rest of it, it will unfold as it chooses.


Please read my blog from 2 years ago today – 29/12/2013 – Zombiefied

It’s one of those strange days, one where I know what I should be doing and I really don’t feel I have the energy or need to actually even start on any of them. I’m drained, quite simply the past week has……




What can’t be seen

I’m working on a new idea today caused by the fact that lately I have noticed my eyesight getting worse and worse. My idea isn’t something radical or earth shattering, it’s really simple, I am going to wear my glasses. I know, I should have been using them anyway, but when you have two pairs one for reading and one for seeing the end of your arm, slight exaggeration there but it is a case of the other side of the room. I have such a mix of problems with my eyes that glasses have just all to often been a case of wearing with little improvement, so they have spent most of their lives lying around anywhere other than on my face. My eyes are totally unbalanced as I am short sighted, worse in my right eye than left, but I also have optical neuritis in my left and macular degeneration in my right. The world has been an interesting blur for a long time, I always used to say that it was a good job that I never learned to drive as MS isn’t a notifiable condition. Between my bad eyesight and constant leg spams, even if I did see a pedestrian crossing the road, my spasms might mean I’d hit the accelerator instead of the brake. I have for the last few years been wearing my distance glasses at night to watch TV simply because I was fed up seeing a blur, but even when wearing them I have never been able to really read the information panels, despite every effort of the opticians. I am actually really surprised at how little you really need to see to be able to work out what something says and I do quite often manage that quite well from the settee, but I have never tried using my distance glasses from here at my PC and I haven’t been using my reading glasses whilst sat here either. All last week I was overly aware of how difficult my PC screen was to actually see, especially when I am typing, I didn’t want to enlarge things as when you do they are so huge that letters fill the screen like huge spiders. Yesterday I had had enough and I found myself reaching for my reading glasses and to my shock for the first time ever, they helped, I actually could see the screen with a hugely increased clarity and the keyboard, before I had to keep changing my physical distance between them to see them clearly, to say I was shocked is putting it mildly, something really had changed in my vision.

All through December I have also been exhausting myself daily due to extra exertions that I couldn’t avoid as I haven’t had my normal collections of TV programs. Usually during the day I watch, well more listen to, programs that I have recorded and I normally don’t watch any series until I can watch it all as that way from here I can select the next one without having to be able to read anything on screen. Change of season always means change of series and every hour I have been getting up walking over to the TV so that I can see the information panels, as it was the only way I could select the next program, something had to change and quickly. This morning by accident after sorting out some programs to record, I walked over here with my distance glasses on and I discovered that no I couldn’t see the panels, but I could make out enough to make an educated guess. So simple that I can hear people thinking how stupid is she not to have done this before, well I did, but it didn’t work before, the last time I tired, I had no benefit from my reading glasses, in fact they caused me to feel sick as I just couldn’t get the right distance and the rest of the world became so fuzzed and odd that if I moved my head around at all, motion sickness appeared and that was just a couple of months ago. Every time I have brought my distance glasses up here it was causing me an another issue, I would forget to take them back to the settee, meaning another walk across the room. When your energy reserves are so limited, even the tiniest change can totally destroy you, but it has got to the point that that one possible extra walk compared to the multiple ones to change channel and the frustration of having to constantly change pairs, is now worth the risk and before anyone says bifocals, I tried them years ago and they also caused motion sickness. I don’t know what, but something changed last month as I now know without a doubt that I wasn’t imagining the change in my eyesight. I thought it was all too sudden and that if anything it probably had to do with the fact I was always tired, but the difference in my reading glasses alone proves it, I am guessing they used to be too strong but now they’re just right.

I know that in time I probably will loose almost all sight in my right eye, which is rather annoying when it happens to be the stronger of the two when it comes to being short sighted. The macular degeneration has nothing to do with my PRMS, I somehow managed to develop a condition normally found in the elderly rather prematurely, but why that should have surprised me, I don’t know, the only connection it does have is it was found by the hospital optician I was sent to see when I was complaining of problems with my eyes, which my optician was unable to help with. As is so often with my health they weren’t just able to confirm the optical neuritis but they succeeded in finding something else as well. I have often wished that they would just give me a full body MRI and every other test there is and get it over and done with as all my body seems to have done in the last few years is slowly fall apart. Adam and I were sitting last night talking and I was reminded of two conversations that I had pre-diagnosis with two different doctors, the first was with the doctor who diagnosed my Fibro, as nice as she was, she kind of got thing wrong and I now wish that I had had a tape recorder with me as she started after I questioned some of the other symptoms I had which didn’t fit with Fibro,” There is no point us doing any other tests as you have Fibromyalgia and nothing more”, within 12 months I was diagnosed with PRMS which they believed had started when I was around 21. The second was with the ENT consultant who ordered my MRI scan as he didn’t think I had Meniere’s, which neither did I, but I had been sent there and there I was, when he was talking to me about the results, he said that either I “had survived more strokes than anyone or I had MS”, both show how things can be there that no one knows about and some wouldn’t even suspect, even those who should know better.


Please read my blog from 2 years ago today – 06/01/13 – Pick a limb any limb 

I am happy to report that the pain in my leg eased as the day went on, it is now at about normal again, painful but not making things unbearable. It’s strange I am sure to anyone who isn’t themselves living with chronic pain to think that I describe what…..

Optical Neuritis

MS Hug

I said yesterday that the kickback had started and I was totally right, unfortunately, you know it really would be nice to be wrong about these things just occasionally. lol As yesterday progressed the pains all over me got worse and the lovely named hug came to visit. It really is an annoying symptom, on the whole it isn’t really painful more permanently uncomfortable which in many ways is more annoying as finding any position to sit of lie in is hard. For added fun last night I was taking huge yawns and also had the hiccups which when your diaphragm area is clenched in a mild spasm is interesting to say the least. All in all yesterday wasn’t a great day, not my worst ever but steadily going downwards as the day progressed, I went to my bed at the normal time and I slept instantly, that is I suppose the only thing that is good about bad days, they constant pain wears you down and exhausts you so sleep is easy, once all my night time meds have taken hold.

This morning it seemed as though I was actually a bit better, it wasn’t until I had my PC booted up and I tried to read the first page that came up that I realised it wasn’t. My eyesight is really really bad today. Optical neuritis isn’t something I am usually over bothered by, it was strangely one of the earliest symptoms which allowed the doctors to date when I might have had my first MS flare, when I was 21 I lost a entire center view of my left eye, it lasted several hours then cleared, it was also when I was 21 that I first made an appointment and went to the opticians complaining there was something wrong, like the other symptoms I had I would be heading back or already be in remission so they always told me there wasn’t, a universal problem for the first 18yrs. I know know that the blurring of my eyesight, like having a layer of Vaseline spread over it, was due to ‘Optical Neuritis’. I am lucky as I rarely get much pain with it either a lot of people find it totally agony to move their eye. The worst spell of it I have ever had was when I was still going into the office twice a week, I woke up one morning to discover I really couldn’t see the TV screen unless I was within one foot of the screen. That lasted 3 days and slowly cleared right back to almost normal, it is one of the reasons that glasses, no matter how good have a limited improvement. These days TV is more like radio when I am sat here at my PC, but if sat on the settee which is 4ft closer to the box, with my glasses on I see everything with clarity.

I have counted myself as luck to not be bothered with it too greatly as I only really have one good eye and it is shortsighted meaning that I where different glasses for different things, my PC is probably the only thing I don’t normally use them for as I have increased font sizes and so on and manage OK. It is my right eye that is the real problem and that has nothing to do with MS, I have Macular degeneration in my right, at the moment I have small spots all over my cornea that I can’t see through at all, it is a bit like trying to see through a heavy patterned lace, usually the small clear spots that I have are better in their normal vision than my right eye, today they also have the Vaseline effect. So seeing what I am doing is an interesting experiment, clearly I am still seeing well enough to ensure that what my figures know they are typing is what is appearing on the screen but sitting with your nose just 9 inches from the screen isn’t the most comfortable position for my back.

It is strange how all of us with chronic conditions brush these type of symptoms to one side, if you were to wake up tomorrow and not be able to see very much you would panic and head straight to the Doctor convinced you were going blind. We on the other hand accept it and move on just hoping that it will improve given time. I know like everything else the day will come when it won’t go away and like everything else there is nothing that they can do about it, and one day I won’t have my eyesight back, I just hope this isn’t that day.

Just checking the web cam.

I woke this morning with the pain in my eye again, it was the first thing I noticed, even before trying to turn the alarm clock off. I have wondered for a long time now what is the point of this painful, virtually blind orb set in the left side of my face actually is.

As is the story with most of my body it isn’t content to have just the problems of MS, it had to go out and find something else to accessorize it with. They call the MS symptom Optical Neuritis, it causes blind spots and blurred vision and of course the MS favorite, pain, sometimes it is constant at others like today, when I move my eyeball. Joining the party is Macular Degeneration, it also causes blind spot and even more blurring of my vision. I don’t know how they separated out the two different conditions, but I’m not an optician and I can’t look inside my eye.

The really annoying thing about both of them is that my left eye was the one that I had the best vision in before and where it isn’t blind it still is the stronger one. The best way to describe it is like looking through thick lace, where the threads are I see nothing, the hole are small and crystal clear. I am short sighted so glasses are needed for watching TV and as happens with age I have other ones for reading. The only thing I don’t need either for is sitting here at the computer. I have the screen set at the perfect distance from me and of course I can control the size of everything on it. That is why I am annoyed at my left eye today. Have you ever tried to type and read without moving your eye? Try it, fix your eyes and move your head instead, it rapidly get annoying and you forget until the pain reminds you.

I am really glad that although I have a web cam it isn’t beaming pictures out all the time, earlier this morning I was sporting a rather snazzy piece of kitchen towel taped across my eye. I can’t remember when I discovered this or actually how, but by soaking some kitchen towel in cold water and strapping it over my eye for a couple of hours seems to sooth it. I can only think that it is the cooling of the nerve makes the difference and as soothing as it is I still felt totally silly.