Life through closed eyes

I am currently walking around with a plaster on each foot, the podiatrist came to see me yesterday. It is partly my fault, as she did call me about four weeks ago wanting to come out and cut my nails for me, so it had been five months since they were last done. Part of the reason that someone has to come in to cut them for me is that due to a birth defect my toes are curled and all my nails including my big one, now have nails that curl and grow into the skin. When I was able to reach them and see them clearly, well I had learned how to deal with them, but now, well even the podiatrist agrees that it is a bad idea to have Adam cut them. The extra week meant that they were in a greater mess than normal, even though Adam had had a go at them with a nail file a couple of weeks ago and she had to take a scalpel to two of them to cut and lift the nail out, hence the plasters. It was my right foot that needed the most work, but as always with my body, it is my left that is now the painful one, there really is some warped thing going on in my body as even when the facts say the opposite, it is my left side that suffers the most. This morning, I have found yet another reason not to walk around too much, as the toe on my left foot is crying out ever time it touches the floor, like a little electric shock. Some things don’t change I suppose, it is still the smallest, stupidest little things that cause us bother, I never once thought that PRMS would leave me unable to do something as small as cutting my nails, nor that it would lead to them being attacked by a scalpel. It really is the everyday things, the things that all of us do all our lives without a second thought, that makes our lives difficult once our own abilities have been diminished and it isn’t our illness that makes us feel disabled, but the million and one things that just everyday life require.

I know that the first thing I worried about after diagnosis wasn’t how long I could cook a meal for, or cut my toenails for, it was how long I could work for, I really didn’t understand just how unimportant work really was on the scale of things that life held in the future for me. I doubt anyone ever thinks about how long they can make a cup of coffee for, or carry that cup from the kitchen to the living room without spilling it. We are all so blinkered by the major things that the minor ones never enter our heads and no one ever sits us down and explains the full impact of what our health is going to do to us. It is almost as though everyone assumes that we will or have worked all these things out for ourselves, but I don’t think any of our minds work that way, we are so worried about our financial positions and staying part of the able-bodied world for as long as possible, that the truths of disability never get the slightest look in. I do remember wondering about how long I would be able to walk for, but I never once sat and thought about the reality of life in a wheelchair and how most of the outside world and much of the inside, was going to become an no go area for me. I never thought about being housebound, I do though remember thinking about becoming bedbound, but as where I might be a for a few months at the most before I died. Somehow in my head all the in-between stages didn’t exist and I very much doubt are in any of the heads of those people who have been diagnosed with something similar in the past few years.

It isn’t until the day you try to do something and find that it isn’t as easy as it was the day before, that you suddenly start to think about losing that ability. I remember in the weeks before I lost my left arm, I kept finding myself unable to do silly little things, that the weight of something would suddenly increase and I would drop it. In fact, the day I really noticed it and started to think, was when we were putting up the Christmas tree. I remember struggling with everything and getting more and more frustrated with it and with Adam, as I had to tell him over and over that my arm wasn’t able to do this or that, as he moved at his normal pass rather than jumping at lightening speed to either catch or take from me whatever was in danger. Hanging the decorations on the tree was a total nightmare as it is very much a two-handed job and I had hundreds of tiny breakable ornaments to hang, plus thousands of decorations for the rest of the house other than the trees and no I am not exaggerating, we do have thousands of Christmas decorations. Over that month, things remained at about that level, with odd things happening and problems that kept reoccurring, even then I still brushed it aside and kept telling myself that I couldn’t possible lose my hand, hands don’t just die suddenly. Even then, I never once thought that in the first week of January I was going to wake up one day and find it totally dead, nor that it was going to take a year to get it back to a useable level. Quite often, even when things are staring us in the face waving red flags and shouting, we don’t see it until it does it’s worst and we have no choice but to accept it.

I don’t know if it is willful ignorance or just the normal simple ignorance of the able-bodied of what life as a disabled person really means in its finest detail, but I do know that none of us have the slightest idea of what lies ahead of us. I used to think that someone should write a handbook on becoming disabled slowly, now, well I guess the truth is that few of us would read it and those that did, would simply dismiss it as impossible to happen to them. It doesn’t matter how many peoples lives I read about or I have told to me, I still find myself somehow unable to accept that most of the worst things I come across could happen to me, just as I am sure many who read my blog can’t see the same things I write about happening to them. My arm did teach me one thing, I no longer don’t pay any attention to the small things I feel or see, I try hard to make mental notes, not always the most reliable way of documenting anything, but I try. Should something happen again, well I can see if it was a one-off or a real change. My list of one-offs is huge and is kept company by lists of two-offs, three-offs, four-offs and so on, I still have to workout at exactly what point it falls off the lists and becomes part of life.

Progressive illnesses aren’t always hard to live with because of the things that you have get worse, but because new things keep appearing, one after another. You keep telling yourself that you are fine, that surely nothing else new can happen now, but it does and what we know, has nothing to do with how we handle it, that has everything to do with who we are and how we handled all the things before. It has taken me a long time to understand why my neuro wanted to see me every year, I used to think that it was because I was in this small 5% of MS patients with PRMS, now I realise it was because although he wasn’t saying it, he could actually see my future. I didn’t know until the last few years just how rare some of my symptoms were, as I was already then displaying several of the rarer ones. From everything I can find to read, I now seem to have them all, but if he had told me that then, I don’t know what I would have done, possibly attended his surgery for a couple more year of nods and smiles as he ticked off all the rest. From what I can see, well my path is now set and with luck the new things will be fewer and further apart, as long as they don’t find some other condition lurking that I don’t already know about. I do know though that there are still a million things that I can do right now, that I won’t be doing in the future and I am sure that some of them, well some will be totally unexpected, as no matter how much I read or listen, simply because I am as human, and like it or not, humans do a very good imitation of being an ostrich with their head in the sand.

Read my blog from 2 years ago today – 9/04/13 – An act or a lie >

I am a bit drained at this second, Jake phoned for his weekly check on my and his calls are getting longer, the longer he is not working. I love the guy, but it really is just too much right now. I am managing to put on that gloss, the “I’m OK” cover, but it is getting harder and harder. Despite everything…..

Who needs air

I seem to have totally gone off food again, I ate two mince pies and a small yoghurt yesterday and that was it. I didn’t really feel sick or anything, yes the odd bout of a nauseous sensation, but they aren’t lasting all day, just a few minutes hear and there, the rest of the time I am just not hungry. Not even the remaining treats I had bought for the Christmas and New Year period aren’t tempting me, I just find myself looking at them with ambivalence, no matter how good they look I just don’t want them. I had bought Adam a steak as one of his, I though that he would really enjoy it as he is unlike me a meat lover, last night he decided to cook it and at the same time he fried some onions and mushrooms. It is a fact that the one thing that makes all humans feel like eating is the smell of cooking onions, I felt nothing, not a single bit like having something to eat, which seemed somewhat odd, especially as I had eaten almost nothing. This morning when I went to take my tablets, the time I normally make breakfast, I couldn’t find a single thing that I wanted to eat. My stomach was simply saying no thank you to everything that my eyes offered it. Once again I think it may have something to do with the spasms that I am having in the upper half of my stomach, for the last few days they have been driving me mad. Even just sitting here is difficult as I keep feeling as though I need to stretch out my mid region in the blind hope that somehow that will remove the pressure being caused by the almost constant spasm. It is even more difficult to eat when your diaphragm and guts are locked into a game of who can put on the best spasm and for the longest, I just wish they would grow up and behave themselves, just like petulant children they have become annoying.

The postman rang our doorbell yesterday afternoon, for a moment I couldn’t remember anything we were waiting for that could possibly require him to do so. Adam was in the kitchen so he went to the door and appeared shortly afterwards in the living room holding a small package for me, it’s odd how my brain does that to me, totally 100% sure about something, then suddenly it tells me a completely different story. The second I saw it I was also 100% sure that it was my new sleep mask and I was right. As with all these small parcels that arrive it was a jiffy bag and one like all it’s friends, almost impossible to open, I honestly with the companies who made things realised that it is a human who has to open it and normally one who doesn’t want to be showered in shredded paper, simply because the glued closure is set so well that even a Gorilla couldn’t re-open. Once through the built in barriers I unpacked what I can only describe as a miniature seamless bra, you know the ones that nobodies breasts actually ever fit into, they just sort of hide inside those oddly shaped mounds that clearly are designed to make anyone feel inadequate, despite the tags telling us they are the correct size. If I thought the shape was odd to look at, it got even odder when I put it on last night, as there is something totally wrong in knowing there is something over your eyes, yet you can open and close them with ease. Why this function seemed important to its maker I am not sure, but opening your eyes to discover total darkness like I have never seen before, even on waking in the middle of the night, is alarming, more like going blind than waking at night when you can always see something. Having said that the reason I bought it, to relieve the pressure over my nose worked perfectly, unlike the earplugs I bought thanks to their boasts of being better than the rest, I’ll stick to the foam ones which really do work.

Despite the fact I had a comfortable mask last night as I already gave away, I did wake up last night. As often happens I at first wasn’t sure what my reason for being awake was, I had this memory of hearing something like someone trying to brake through our outer front door, something no one could actually do as it is solid Victorian storm doors with wrought iron locks, braces and hinges, so despite believing that was what I heard, especially as I had my earplugs in, how could I have heard anything that clearly, so I just lay there for a while. I guess I was starting to drift back into sleep when I heard it again, but this time I knew it was much much closer, like right inside my bed. What I had heard was myself, to be precise it was my breathing and the rattle and draw sounds coming from my left lung and it explained why it sounded so loud, as I was really hearing the vibration it was causing. I coughed several times but it made no difference, so I got up went to the loo and then into the kitchen, yes for a cigarette. To a none smoker that will sound mad, why fill your lungs with smoke when clearly they aren’t working correctly, well I don’t understand the reasons or science, if there is any, but it really works and no not by making you cough. I have never had a smokers cough, it is something I have never understood as I was an extremely heavy smoker, but after enjoying my way through two cigarettes, my breathing started to ease slightly and I headed back to bed. Even now, despite having a diagnosis of COPD and a stop watch ticking away my life, I still don’t cough. What I once thought was a strange bonus, I now can’t help wondering if it isn’t going to be my undoing. The filling up with gunk that I can’t or don’t cough up is the reason that I no longer sleep on a flat bed and that was actually how it had all gone wrong. I had for the first time in years, slid myself down the bed, so I was almost clear of the slope and I had drawn my legs up by tilting my hips slightly, leaving the rest of me flat on my back, I haven’t been able to roll on to my side for a long time, I simply don’t have the strength.

Now that I have thought about it, I realise that I might also have the answer as to why I don’t want to eat this morning, my breathing is still a little laboured and when I sit and breath shallowly for a few minutes, I can feel and hear it rattling inside me. It is one of those catch 22’s, I can’t take a deep breath because of the spasms, but I need to to keep my lungs clear, I really can’t win some times.


Please read my blog from 2 years ago today – 04/01/13 – Everything is happening at the WRONG time.

Well I know I am sat here and I know that it is Friday but it all seems wrong, not for any terrible reason but because I am in that state that even you are probably in the post Christmas muddle. We are adjusting to………

Solving it for good

Well I made it through the night without being woken by the pain in nose as I did last night, but it is still painful. I didn’t realise until later in the day that it wasn’t just painful, but there was a bright red mark on my nose where the binding of my sleep mask had been lying. So last night I put my mask on just that bit lower so that the binding was touching just the cartilage, it was perfectly comfortable and I went to sleep with no issues. Even first thing this morning I thought all was well, then I headed into the bathroom and the red area is now an inch in length reaching right to the tip of my nose and all of it is painful to touch. I have just taken a pair of scissors and I have cut several slits into the binding so there is no way any real pressure can possibly be put on it later today, not that I could find a reason for it causing pressure in the first place. Why is it that the solutions to problems these days, seem to cause more problems rather than just a straight forward fix, I suppose this point has actually been growing for a long time, but dealing with my PRMS madness just keeps getting harder, taking more and more time searching for answers and costing more and more on failed attempts. It really doesn’t seem that long ago that a small problem would appear and within 24 hours I had the answer and life went on with one more thing that had changed life, but by being solved, not as unfixed and requiring more work.

If I needed proof that I have suddenly jumped into a sensitive phase other than my nose, well it arrived yesterday as well, out of nowhere I am now finding just sitting painful. The pain in my backside started to build ever so slowly over the last week, then bang yesterday evening found me not knowing which side to lean to, or how other than standing up, to relieve the pain. It has to be about 5 months since I last sat on my blow up cushion, but I am sat on it again as I have no choice. Even the bed, despite having just washed everything and all the layers being fluffed up to the max, has started causing pain in my feet, both in my heels and my toes. I have so enjoyed the last few months of not having to think about it for a second and just able to walk, sit or lie down without thinking is my skin going to start screaming at me. To be fare it’s not really the skin, it goes deeper than that, but it has nothing to do with muscles, bone, or anything else other than about a centimetre depth from the surface of my skin inwards and the slightest thing can trigger it in any area of my body. It is times like these that you start to wish that levitation was actually possible.

It doesn’t seem to matter what symptom it is, outside of a few core permanent ones, everything else seems to move around in cycles, not as tightly that you can list them and say this is what will start happening next week or will be the next to reappear, but they clearly seem to take turns at being active. The silly thing is, is you don’t really notice any of them going away, they just slowly start to fade and are gone and your attention has been engulfed by something else that means you don’t even really notice their absence until they reappear. Each time I do notice something like the fact I haven’t sat on my blow up cushion for a while, I actually always go through this hope that that means it will never be needed again, life has shown me that isn’t true, but I never give up hoping. In fact it has shown me not only it will return, the likely hood is that I will be searching for a better solution than the one I had before, as it just isn’t good enough to deal with the next bout, as I said no solution is permanent.

I know that progression never ends and that any symptom I have ever had can return at any second and cause me more and more problems. I also know that there could well be a time ahead of me where symptoms stop disappearing into the background and will stay with me for ever, until I have all of them all the time. Somehow I still find hope and the feeling that I can and will deal with it, when ever, or what ever it does. No I’m not immortal, I didn’t mean that, but I am a coper and it has so far been something I have done quite well, so I can see no reason, so far, why that should end. I guess I work on a belief that if I could survive yesterday, then I can survive today and that is all that really matters.


Please read my blog from 2 years ago today – 29/12/12 – Reaching into the darkĀ 

About midday yesterday I started to cry, I cried at everything and my emotions are still a little raw. I’m not sure where it came from and why it started, but at every slightly touching moment……