Monthly Archives: December 2014

One step forward

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Well I tried and I apologise to anyone who doesn’t agree with me, but I just couldn’t stand more than 20 minutes of it. One of the issues of being housebound is the rubbish they show on TV, not such a problem these days I agree, being as a child of the 60’s, I have been trapped by more than enough hours of bad TV to be able to have a true opinion, the “Cat in the hat” has to be among the worst of the TV I have ever seen. To be honest, I didn’t even hear of the “Cat in the hat” until a few years ago, I think I had seen things like wall charts or children with pictures of the cat on them, but the books, films and TV, I knew nothing of. When I did hear about them, it was from someone who loved everything about that “cat” and I do mean everything, they were well over the top in their feelings. Gushing recommendation from anyone never sit well with me, they usually come from people who have a limited experience of anything else in the same genre, what ever it is books, clothing, architecture or anything else, my experience of life tells me that nothing deserves to be placed that highly, once you are also aware of the others that surround it, many as good and some even better. So I have tried something new, this time it was something I wish I hadn’t, but it has added to my life experience and I rarely turn my back on those.

Through out my life I have heard on TV or in News papers of people who were well into their retirement years and had just completed a University degree, they were the type of stories that always left me with one question, why? I fully understood those who would jump out of planes, or enjoyed dangling on a bungee, but spending so much time studying when they were never going to be able to use what they had learned, totally escaped me. I had been one of those kids who studied but never saw any real point to it beyond keeping me out of trouble with my parents, when I was forced to leave school aged just 15, I didn’t even think about fighting it and I found myself a job that actually started a month before my leaving date, so the school would let me go. Those who have read for a while, already know I was a keen self learner through out my adult years and through that I managed to work my way into a really good job. When you get a diagnosis of a condition that will slowly eat your brain away, you do go through a spell of believing that learning anything new is pointless. I honestly believed that by now, I wouldn’t be able to think, far less learn but I am still doing so daily and I fully understand why so many others are too. Strangely learning isn’t about tomorrow, it’s about today, it about those moment of clarity, those seconds where suddenly something makes sense, or you can see the answer to something you have been struggling with and had had no luck with, until then. It also doesn’t matter if it is part of your life, or a subject that no one but you could be interested in, even something totally obscure, as it’s our personal growth that makes the difference. I remember hearing somewhere someone saying that they knew a person was dying as they had “lost interest in life”, I never realised how true those words were, or how easily they could actually be the cause of the end of a life.

I believe that my continued interest not just in life, but in subjects I never new anything really about before becoming housebound, is a large part of being able to be happy the way that I am. I have talked before about how important I find achieving things is, the boost it gives me and the satisfaction that I’m not totally useless, well “learning” does the same thing. I put in it in quotes for a good reason as I know that word scares the hell out of some, “learning” isn’t about maths, arithmetic or even foreign languages, it’s about everything and anything, including “The Cat in the hat”, it’s about interests, passions and life, give up on one and we will loose all the others. I hope it won’t and it may not this year, the next or the one after, but the point will arrive when I will be bed bound, I no longer see a way around that fact, yet I have started to realise that even that doesn’t have to be as black as it feels, sorry felt, as now it’s just a very dark grey. I have at last realised that as long as I have a TV and a PC that I can work, nothing that much will really have changed, yes there will be the obvious problems, but I don’t see it now as blackness, as unless my brain has left, I can still learn, still be interested in and still part of life, if my brain has left, well I probably won’t really care.

It may sound like a tiny change in thinking, not worth really mentioning or one that everyone else could see, even if I couldn’t, but to me it a big change, it’s like a new window has opened all by itself and it’s not an annoying pop-up, for once it has really important information on it, interests, passions, learning & life go on until we let go of them.

Read my blog from 2 years ago today – 31/12/12 – Years End 

Well we are here again the end of another year. I used to think it was just one of those things that older people said without there being any reality behind it, but the years really do get faster and faster……

Timeless

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I have just bought another sleep mask, when I woke this morning the redness on my nose was still clear to see, but on the good side, it isn’t so painful to the touch. To be honest I wouldn’t be surprised to see a bruise appearing, as that is how it feels, bruised. On the good side it gave me an excuse to try out some make-up I bought ages ago which I hadn’t used as I hadn’t taken the time to test it. I learned years ago that the first time of using something you have never used before, isn’t when you were going anywhere as it is bound to go wrong, so it has just sat there in a paper bag waiting. It is one of those powdered mineral based processes and I have to say it is amazingly good, just a touch of concealer and the red vanished totally, which did surprise me as I am one of those people who never believes what the advertisers say. It may sound odd but it is another of those things that I bought due to my health, I just don’t bother with make-up on a daily bases, only if I know if someone is coming here, or if I have to go the hospital do I add enough to feel comfortable. I was forced into looking for something new as all my make-up had dried out and died, buying the same again for it to just happen again sounded like a real waste of money, I needed something that couldn’t dry out, it had to be powder based and I found it.

There are so many silly little things like that, that you just don’t even think about when you become housebound, well why would you? But as time goes on, they just start to appear and you have to spend time searching for replacements or different ways of reaching the result you want, but one that will last, not curl up and leave you in the lurch. I remember when I had to make my first hospital visit after being housebound for 5 years, the appointment arrived and I suddenly realised I had nothing to wear. Clearly in that time thanks to my immobility my weight had increased and I was faced by a wardrobe full of clothes that simply didn’t fit. No one wants to have to spend money buying a totally new outfit for a couple of hospital visit and then would never be worn again, it’s not just cost restrictive, but it’s a complete waste of every tiny bit of it. My solution turned out to be truly cost effective. I searched on line for a some plain black pyjamas, made of ordinary every day materials, not silk or anything that might give them away as pyjamas. I found a set that looked when you added what they said was the house coat, very much like a casual trouser suit, add a coat and no one could guess their true identity. I have been wearing them ever since at home and I wore them when I went to the Dental hospital last month, not one person had given them a second look or said anything that I over heard as to what I was wearing.

I have found myself over and over wanting to clear out all my draws and my wardrobe of all the stuff I will never wear again. On the practical side it would free up some storage space which is much needed and it would also mean I could sell some of it and get back a bit of cash, but every time I think of doing it, I find something else to do instead. I have sat and thought about it a lot and the only reason I think that I don’t do it, is because in my head it would be like giving in to my illness. I know there isn’t the slightest chance of me either being able to wear those clothes again, or of my being able to make it out of the house whilst wearing them, yet I can’t let go of them. I keep telling myself that the time will come when I will be at ease with it, but that time just doesn’t fully appear. I suppose it must be a little like someone who is clearing our after someone has died, it is that final step, the last bit of saying goodbye and I have never been ready to do that. So I still have draws filled with underwear for some one with a size 10 figure, hanger after hanger holding black knitted mini dresses and pair after pair of long suede boots, all there, all untouched for nearly 8 years simply because I can’t take that final step and say that final goodbye to life I have no way back to. I know there is no rules about when or if these things need to be done, but on the logical side it really would make sense to let go, otherwise it will be eventually a job left for Adam to do.

There is a strange phenomenon that happens when you don’t see other people and your no longer part of a world that everyone but you knows, time stands still. Just as when you don’t see some one for several years, in your head they are as you last saw them, they haven’t changed in their appearance in any way, their fashion, their size and their age remain constant, until you see them again. Well the same happens when you become housebound, despite what I see on the TV, or how much news I watch, to me the world I know is set back nearly 8 years. The perfect example was when I was on my way home in the ambulance from the Dental hospital, I was shocked to be going under an entirely new motorway that now flies over part of Glasgow, when I had last been in that area of the city it hadn’t been there, but I knew from the news that it was there. Just like that motorway, my world is stuck for ever as it was when I closed my front door for the last time. The really odd bit is, so have I and Adam, yes I can see the changes, but in my head they don’t exist any more than any other change anywhere, the world to me has stopped and I can’t see it ever moving on again and even odder, there is a comfort in living in a time bubble.

I had never thought about it before, but that is possibly one of the reasons that life in a housebound world isn’t as bad as people expect it to be. We haven’t become housebound, we’re just on an extended weekend that never ends. Time is without doubt the hardest thing to hold onto, weeks and months pass me by without any real feeling of them being there at all, a good ground hog day if you like. I no longer think about what day, what time of day or anything else, outside my routine or where Adam is or what time he will be home, I drift through the hours untouched by them, I guess it is my brains way of staying sane, regardless of reality.

 

Please read my blog from 2 years ago today – 30/12/12 – Inside Connections 

I am happy to report that this is a brighter day at last! I feel today that smiling is allowed both on the outside and on the in, the last couple of days have just been really strange and I really don’t know why, I have theories, loads of theories, but……..

Solving it for good

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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 dark 

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……

Still worth it

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I really have turned into a delicate flower, right now I am sat here still aware of something that woke me at 6am, a pain on the point on my nose where it changes from bone to cartilage. I had woken the night before for no reason I could find and as I lay there awake the only thing I noticed was the light in the hall, it was the early hour, yet there it was light bouncing of the celling. I decided that it was probably the TV or Adam playing with his phone, clearly if I had worn my sleep mask neither would have woken me. So last night I went to sleep with my mask on, I have been wearing it during my daytime naps, but apart from my first night test run, I hadn’t bothered during the night, clearly that was a mistake, so on it went again. I woke this morning with intense pain on my nose, it was exactly where the mask outer seam was touching my nose and I do mean touching, not digging into or even tight on, just lying there it was causing me pain. I pulled it down a little lower and headed back to sleep, yet here I am 4 hours later and I can still feel it without even touching it, touch it and it’s painful.

I have spent the last 4 years with no change in what I wear, everything is loose and soft, but I had totally forgotten why I made the change. Most of my life I have worn really tight clothing, I preferred to know without the slightest doubt where my clothes were, I normally even wore what most would call corsetry, but without the lacing, just best and most ridged modern version I could buy, not only were they comfortable, they actually really do make all cloths look better. To me the fact they were comfortable was the most important factor, but when the outfit didn’t allow, well I added tight elasticated belts and so on over my clothing. There was something comforting about being constricted like that and I was not just physically comfortable, but mentally to as I knew I looked good and that gives you confidence. I always changed me clothes when I came home and would wear an old fashioned long nightdress and velvet dressing gown, still mainly tightly fitted but softer. When I became housebound, I stopped getting dressed and just lived in my nightdresses, slowly I started finding the their tightness and their straps were cutting and causing constant pain, not just because I was gaining weight due to my immobility, as I had already bought larger sizes, but anything that was tight was causing me extreme pain, where ever it touched me. Reluctantly I changed and started wearing looser and looser nightwear, until now when what I wear isn’t just loose it is two sizes bigger than I need, just to be sure nothing can ever cut into me, regardless how I sit or lie. The material they are made of isn’t just soft, but has a large amount of stretch to it, so that even it getting caught under me can’t truly pull it tight. It isn’t just my clothing that caused me problems, even the duvet can cause pain in my feet as does the softest footwear I can find other than just socks. When your nerves are damaged, they miss read things, things that shouldn’t be a problem become huge issues and it appeared that nearly all my skin surfaces had become confused. The problem wasn’t on the inside of my body, well not to any depth, it feels as though just the surface centimetre or so causes all the trouble, anything pressing, even lightly can turn into pain, I know I have said in the past that I can’t even take my hands lying on me, or even touching my sides as I go to sleep, I have to ensure they are far enough away from me that they can’t just slip across the bed and touch me, as the pain just builds and increases stopping me from sleeping. It isn’t just my nose that is in pain, but also my right eye lid is causing me much bigger problems than my nose, as it is really reading things wrongly and keeps streaming with tears as though it is trying to rid itself of something that shouldn’t be there. There isn’t anything there and in fact it doesn’t even feel as though there is, it is only my eyelid that feel a little irritated, so when I go for my nap, well the mask will be loosened until I find a position and lightness of touch that my entire head will consent to.

It is so easy to throw your routine into a massed muddle even when you believe you are holding closely to all of it, but I did say believe. I don’t actually think I have managed to be in total routine since a last Saturday, all thanks to my determination to stay up and see the final of “Strictly Come Dancing”, it was such a basic mistake, one that I should have known no good would come out of, but I did it and from then on, things have been floating apart like snowflakes. Every day without really noticing it, I have let things slip, or had a longer sleep or a shorter one, consistently every day I have done something I shouldn’t, Christmas day being the worst, wrong food, wrong nap length and another late night. So having stood in the right spot and asked the mule to kick, why is it I am still surprised at just how rotten I feel today? I sealed my own fate yesterday by still eating the wrong things at the wrong time, then sitting here at my PC until 8pm playing a game, simply because there wasn’t anything on TV I wanted to watch and Adam was in the kitchen doing dishes, so I sat here playing a game unaware of the minutes ticking by, suddenly it was tablet time and I was still sat here, not relaxed or resting in anyway. I am really paying the price today for my entire week of miss behaviour, it does often feel that way, as though my PRMS is some kind of strict head teacher and right now I am in detention, as I dared to do what I wanted and I broke the rules. I knew there was going to be a price to pay but I didn’t expect to feel as terrible as I did yesterday or today, at least so far the vertigo has settled a little further, but the total fatigue, nausea and general feeling as though I should be in bed dying, just isn’t lifting. When I feel like this it is hard to eat the right things or at the right time, I have already turned my nose up a breakfast again, so just a few hours into my day and I am already breaking the rules, but I have little choice.

PRMS isn’t fun and it doesn’t like me having fun either, but at least I can still laugh at myself and smile at memories as I write, I know that sounds a little silly, but smiling when there is nothing to really smile about, does actually slowly make you feel that bit better.

 

Please read my blog from 2 years ago today – 28/12/12 – Sifting the smile inside

Last night I was so tired that I felt chilled to my core, not the kind of cold that comes from outside but from within. I put my electric blanket on as I got into bed in a vain hope, that the cold would lift, I don’t……

The price is never right

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All to often it takes something major to happen for us to realise it has been building up for a long time, yesterdays vertigo was one of those moments. It wasn’t until I was sitting quietly half watching some stupid comedy program, that I started to put things together and to make a little more sense out of had happened that morning. As I said yesterday I knew before I ate all I did on Christmas day just how yesterday was going to go, if only my taste buds had been having one of there lets kill the flavour days, it wouldn’t have happened at all, but they didn’t and I did. Eating to much always brings on and intense feeling of nausea and dizziness, but yesterdays when it hit me with it’s full force, it wasn’t totally on track, it wasn’t an attack of just dizziness, but vertigo. There is a distinct difference, dizziness is an internal feeling, like you are the spinning object, vertigo is when you are stationary and the world is spinning, both make you feel sick and both make you feel unsteady on your feet, for me though it is vertigo that holds the greatest danger of falling. I have never worked out how it is you can sit for ages feeling terrible, but then in a split second, staying where you are is impossible and bed is the only option, what changes I haven’t the slightest clue, I just know that that is what happens.

I had noticed that in the last few week or so, I had been having mild spells of vertigo, enough to make me take sudden sideways or backwards steps when either walking or just standing. Like all symptoms that belong to all versions of MS, vertigo comes and goes, you can go months with a symptom not being there or appearing for a day then vanishing again, so it turning up wasn’t really a surprise. I can’t remember the exact day I noticed it but I do remember that I have had mild bouts or just over a week, when you are used to walking in reasonably straight lines, to suddenly finding yourself swaying off to one side to stop yourself falling, you notice. Oddly I often loose my balance before I am truly aware of the feeling that caused it, I can only guess that they happen instantaneously. It is like being hit with a hammer of motion sickness just because you are walking and worse still, sitting in a motionless room that suddenly starts to swim, when you have poor eyesight it is also very easy to blame your eyes. Like yesterday it can become so intense that you are left feeling that death at that second would be preferable, anything other than that intense nausea and inability to make the world stay still. The more intense it gets, the more you feel like your brain is going to explode and you simply can’t bare to keep your eyes open, closing them doesn’t stop it all, but at least you start to feel as though you are a little more in control, you need as many signals as possible that you are in fact motionless. Sitting is good as you can feel the chair under you and of course the back to some extent, but to really make the world stand still you need to feel as much contact as possible with something that can’t move, hence the desperate need to lie down, you need that contact from head to toe.

Vertigo is very much part of MS, but for me I know that I have a double issues with food playing it’s role, I also know that regardless of what ever it was that kicked it into action, it will be with me for a while. The next few weeks will see me being even closer to walls and walking with even more care, which now that I know I have to do it, isn’t an issue. I guess I will just have to go back to being careful with what I eat, last night I did have an extra meal, but I didn’t have breakfast or loads of Orange juice, not a normal days food, but that bit closer and today, I’m not wonderful, but I’m OK to get on with normal life. It really stinks not being able to push the boat out as far as others do at this time of year, as to me food and Christmas go together, a link made in childhood and one I find impossible to break. It is the one time of year when you buy and enjoy the best of everything there is and to me that means not just flavours I may only ever afford once a year. I even remember the year that it happened as even as a child I avoided sugary foods, the type that uncles and aunties thrust at children expecting total glee, received a somewhat glum face from me. by the time I was 7 my total hatred of ice cream was well known, but still the chocolates were bought and half heartedly said thank your for. It was that years Christmas day that my mother found me happily eating an olive, one she had bought to put out for visitors and like most parents never thought her children would actually eat. When I asked for an anchovy, she told me I wouldn’t like it, but she was so wrong, it was delicious and I ate it with relish and had to be stopped from eating any more, but it also turned into a game, of what will Pam eat if we give it to her. The answer was almost anything that children are supposed to not like. It was the day that I also discovered soused herring, caviare, blue cheese and even malt whisky, mind you that was a mere sip, the only flavour I didn’t like was my Great uncles cigar, which caused huge laughter as I choked and spluttered on a lungs full of smoke. I never looked back from that day and I have spent my entire life discovering and enjoying almost every savoury food I have come across, the foods that many won’t eat and even more, including myself, can’t really afford outside of special occasions.

I am a huge believer in listening to our bodies, they normally know what we need and what we don’t, but I am also a great believer that life has to have those time when pleasures, good for us or not, just have to be enjoyed. One more Christmas is behind me, one more day out of how many where my life has had restrictions pushed upon it and one more were I said to hell with it, I’m a long time dead, the Christmas season is all about living in the excess of enjoyment, whether there is a price to pay or not.

 

Please read my blog from 2 years ago today – 27/12/12 – Everything in slow

Another night of lying in my bed wondering why I had eaten what I did earlier that day, this time it was my right side not my left, but it was that which made me find something odd……