Expectations can kill

I so wish, that for just one day a year, we were allowed to be the person we were before we became ill. It’s not that there is any date ahead of me, that I need to be well for, it’s just there are times when I suddenly become fed-up with being ill. No, I’m not falling into depression, I’ve just got this huge desire to be me. It’s not even as though I want to go out, or do anything special, I just want to be free of pain and maddening sensations, to have a throat that swallows and doesn’t think every now and then, that it would like to try being a second stomach for a change. In fact, I wouldn’t mind, if it were spread out over different days, you know, Monday, I have arms, Tuesday, legs and so on. Being ill all the time, is just so frustrating, and yes, I do understand why many get depression, I’d be a fool if I didn’t. I have to admit, that that is one of the most maddening things to me, that so many people, seem to expect me to be wallowing in self-pity. I remember a couple of years ago, Adam came home from work and told me about a discussion, he had had with his then boss. They had been chatting over a coffee and during the conversation had started in a pitying way, about him being my carer. She was concerned about the pressure of my being housebound on him, especially, as she assumed that I would be both lonely and depressed, in her words “a difficult combination”. She was shocked, when he told her, that I wasn’t either lonely or depressed and that I, in fact, spent my time online, doing what I could to inspire others. Apparently, she was totally overwhelmed and speechless.

People make so many assumptions about what it really means to be chronically ill, and not just busy body managers. I have come across so many people, including those who have just been diagnosed, who make the same assumptions. So many, that I can’t help wondering, if some become depressed, because, it is what is expected of them. I know that sounds odd and I don’t mean in any way, that any of them are putting it on, but our expectations, can often lead us into that reality, somewhat similar to the placibo effect. Almost as though because it’s expected, that we have some sort of permission or order to do whatever it is, and not just depression. I know for a fact, that in my those first few months post diagnosis, I for one, at first rapidly became much, much iller than I had been. I had spent so many years covering up, pretending there was nothing wrong, as that is what the doctors kept telling me, that when I was diagnosed, I suddenly had permission to be ill, and that’s just what I was. Not only did I act and appear worse, I felt it, but I had no reason to, nothing had changed, other than at last, I had a set of names for what was wrong with me. I was living to a set of expectations, ones formed by what I knew about my conditions and what I had over the years, seen in other people. I had to snap myself out of it, if I had managed prediagnosis, I could manage post. It took me quite a while to pull myself round and to just get on with life, as it was, rather than as my expectation of it. I have suffered badly with clinical depression a very long time ago, so deeply that I spent six weeks in the hospital. In some ways, I was lucky, as I had learned from that, the warning signs and what to do about it. Talk and talk and talk. I think my friends and even Adam got a little fed-up with me, as I took any opportunity to talk about myself, and how I was feeling, not the spasms and so on, but the rest of it. It was also back then, that I started working on the smile theory, the more you find to make you smile, the happier you truly become. It doesn’t just work, it’s fun as well, which is something we all need.

If you can control your expectations, you will without a doubt, have a happier life, ill or not. I have worked on that one for so long, that my dreams are no longer that better job, or the bigger house and fancy holidays, my dreams are a day free of spasms in my legs. Yes, I know you read the beginning of this post and assumed that it was a mad notion, but if a day off, is my ultimate dream, my expectations from life, clearly aren’t grandiose. No, I’m not talking about giving up on dreaming, we all need to, but expectations and dreams, should be two very different things. Yesterday for lunch, I had a piece of baked brie, with cranberry sauce and a side order of black pudding, followed by a Mincemeat pie with a dollop of cream. I was in flavour heaven, it was sublime. My expectations are small, my happiness is high, that lunch kept me smiling for hours. Just as I smile daily when I read the tweets of people I’ve made smile, happiness grows and when shared, grows faster. Changing my expectations of life was hard work to begin with, but over the years as my health failed, and reality dawned, that there was no cure and never would be in time for me, I had to adjust my needs of life. There is no greater need than happiness, especially when you’re dying.

I get fed-up at times, frustrated often and occasionally, even a little down, but it never lasts. I have a few very precious things in my life, that mean I’m more than happy to go on living. I have Adam and Teressa, their love is essential and prized greatly. I have everyone on Twitter and those who read my rambling here, what more does anyone need, well other the exceptionally good meal. Those waiting in the wings, waiting to see me crumble and join the majority, can stuff themselves. I have too much to do, to many people who care and need me, to give in and I also, still have my dreams, which include, helping others to stay happy too. Listen to the marketing men, the glossy magazines and the lifestyle media and my life sounds unbearable. Listen to me, the person who’s living it and I’m telling you, no matter what my health has done to me already, or what it will do in the future, as long as I have those few things, I’m happy.

Please read my blog from 2 years ago today – 06/01/2014 – Content in the now

I have at last received a reply from the post office about the fact they keep marking on the envelopes that there was no access that day, not just for one day but the worst was a whole week. Since I have been…..


The point of strength

For the last few months, I have been tucking the edge of the duvet in to prevent my feet from wandering onto the floor. It was one of those really annoying things that I was doing in my sleep. The result, though, was I woke with my body arched like a banana and my back screaming in pain. The pain was so bad, that despite being cold, I often took ages to bring my legs back under the covers. When we decided to buy the king size duvet for our double bed, the spare duvet supplied proved to be the answer. Until last Friday night, this worked perfectly, the only issue was how I have to get in and out of bed. It means a painful manoeuvring of my legs into a tucked position just so I can getting in and out, but on balance, it wins hands down. I woke in the early hours of Saturday to find myself lying on top of the bed. How I got there without hurting myself or waking up, I don’t have a clue. Getting back into bed showed me that the duvet was still perfectly tucked in. I had to have sat up in the bed, brought my legs out and lain down again. To have done all that without noticing any of it, simply amazed me. I was even more shocked when I woke in the early hours of this morning in exactly the same position. Several months ago, I joked about the fact that I might just be about to take up sleep walking. I really was joking back then, as my legs slipping off the mattress wasn’t exactly a truly thought out move, this clearly is. I have already decided that tonight when I get into bed, that I will tuck the upper half of the duvet in as I lie down. Hopefully that way I will stay where I am supposed to be, in bed.

My brain never stops to amaze me with the things that it comes up with just to make life that touch more complicated. It’s hard enough to walk around the house when I am awake. The idea that it is going to take me for a wonder in my sleep may sound funny, but I fear the results might just not be. Having said that, it has been a while now since I last took a tumble. I seem to be doing a lot of stumbling in its place. The strength in my legs just disappear, or more frequently, I find my toes stubbing off the floor. Luckily, it’s normally just my leg or my foot at one time, but they have happened together. Finding your leg suddenly not there, or not having the strength in them to stand up, doesn’t get any easier. I thought that when it started happening like so many other things in my life, that I would get used to it. Clearly I will always be surprised, as it happens out of the blue, but it’s that shock angle that I thought would settle. Every time it happens, it feels like the first time. I am always shocked that the muscles have failed and returned. The closest I have got to understanding where the shock came from is because when my left arm failed, it was dead for months. This business of not there one step back the next is somehow more unsettling. It’s like I am being stalked by an event, it’s hanging around in the background watching and waiting for the next opportunity to catch me out. There is also that added threat, that I will go for that next step so that I don’t fall, expecting it to be fine, only to find that that was its last step forever.

Progressive illness is living your entire life under a threat. None of us has the slightest clue which part of our illness will get worse next or what it will do to us when it happens. Most progressive illnesses are slow and steady, a bit by bit process. PRMS and I suspect the other forms of progressive MS often seem to act in sudden jumps. Because most of the damage done to us is caused by lesions destroying the nervous system, so we don’t always get clues. often the nerve will continue to work normally until the last second when the Myelin is totally cut in two. I frequently describe it as the lesions eating me, as that is the picture that appeared in my mind when I first read about it. I saw this evil little PacMan type creature, not cute at all, eating away at my brain. That was where they first found them when they performed an MRI, there they were, loads of them, eating my brain. Whether it is in my brain, my spine or anywhere else, right now the preparation work on removing something from is underway. The threat is in action, in fact, multiple threats are in action and I’m just waiting to discover their results. Clearly there are often clues when I start to develop a weakness, or like my chest where the muscles are being triggered to get tighter and tighter. Just like spasms the messages are being sent but are miss read due to distortion. Like sending a message down a multi-core wire that nicks in it. The message gets there, but it is crackly and odd sounding so the muscle reaction is also distorted. The threat is there all the time, what will it do today, tomorrow, next month or next year. How distorted will those messages be and how long before they stop forever?

If you were to think about it every minute of every day, you would go mad. If I were to sit here right now and just make a list of all the symptoms, the areas their in and the possible outcome of what is happening, it would be horrific. That’s just for right now, that’s not how it will be in an hour from now, it’s always changing. You can’t let yourself monitor it constantly, not even daily in detail, as that is the road to disaster. That I think is where our personal strength comes into play. We have to be strong enough not to drive ourselves mad. To stop ourselves from wallowing in the actuals, possibilities and results. You can’t stop yourself from reacting mentally when your foot drops, or you can’t breath or your bladder hasn’t held until you reached the bathroom. Reacting is normal and impossible not to do, but wallowing, that is painful and not needed. It takes strength to accept, sort it out and move on. It takes strength to grasp hold of your thoughts and direct them in a different direction and not to return. Our strength has to be mental, not physical. It is also a strength just like the physical one, that you can train, exercise and enhance. The more you use it, the stronger it gets. It doesn’t matter what our health does to us, that mental strength is what will carry all of us through and into our futures. Pain, discomfort, embarrassment, fear and despair, are all controllable.

I know that threat is always there, that my health will come up with more and more things to test me. I know that warning or not, my body will always catch me out and do things I never once imagined possible. But I believe that I am strong enough to keep putting it where it belongs, here in my daily posts and not in my daily life.

Please read my blog from 2 years ago – 23/08/2013 – The truth of pain

Once more back sat at my PC and with little surprise Adam is snoring his way thorough the 3rd of his holiday days. Just wanting a day to be normal isn’t enough, even when all the elements of……….

A problem without an answer

Well, I spoke to my doctor, with everything ordered in my head I was able to lay the whole thing out without it turning into a muddle which it normally does, when your brain just needs a seconds distraction to ditch everything, preparation is essential. He at last seems to understand exactly what the issues are that I am having and why all the solutions that had been suggested by him and the district nurses, just didn’t work. I am now on two laxatives to be taken every single day from now on, which means I don’t have to try and remember anything, outside my normal medicine times. I wasn’t impressed when he said that I should take senna as I used to use it and it got to the stage of my having to take 4 times the normal dose, something that was witnessed when I was in hospital the last time. When that failed, well I went over to Dulcolax which until the last years had worked fine, but I am going to take it to see if, not using it for such a long time it will now work again or to prove that it just doesn’t work for me at all. I am also now on Lactulose, which I remember taking when I was pregnant, which is a very long time ago, his hope is that by taking both daily that they will between them slowly work towards relieving the problem. We also talked about going back to see the consultants at the hospital, amusingly, his view of them was just about as low as mine when it comes to dealing with something like this, so for now I am not heading there. If the current amounts and combination doesn’t have the desired effect and as he now understands that I can’t possibly eat more fiber or drink any more fluids than I do, he says there are a couple more options before we need to start worrying, about going back to the hospital. I did try to push him as to what the worse case scenario is, but as he always does, he refused to answer by changing the subject, I am, of course, one step ahead of him and I know without a doubt that the only answer would be a stoma something no one wants but hopefully the long slow approach rather than the smash it with a hammer approach may just help to keep that option away for a while longer. I took my first doses last night with exactly the result I expected, I am in pain from the bloating caused by the fact that Lactulose causes wind, wind I can’t get rid of, but on the good side, from taking it before I know this stage of wind production doesn’t last and will reduce in time.

Over yesterday, I was contacted by several people with MS, either PPMS or SPMS saying they have exactly the same problem and are struggling on with it as well, so just as I said yesterday, the emphasis put on constipation as an MS issue is grossly underplayed. I suppose that doesn’t really surprise me as all these sights write for the majority and that majority are those with RRMS, but it doesn’t seem fair that those of us with the rarer forms are left out on the edge unsure what to do and what we might have to accept as time goes on. I know I am writing this from the perspective of someone with MS, but I would honestly be shocked to not find the same situation mirrored for every condition that has several different forms. It is hard enough to find that you have a condition that is life changing, to then be told it is life limiting, but they can’t tell you how or when, as we are all different. To then find yourself totally ignored by those who have set themselves up to help, is quite honestly devastating. In the 14 years since I have been diagnosed, I have only very briefly found 2 others who have PRMS, I have thousands of followers on Twitter who have MS, to have found only 2, might just give you a better image of how it feels to be me. I suppose in some ways that is why I started to reach out to anyone with chronic conditions, no matter how many or how few people have what we have, we all feel alone at times with it, for those who have rare conditions, it is a million times worse.

To be honest I didn’t actually realise at first that my type of MS was rare, the first clue I got was actually from the MS Society in Glasgow, I had gone along to look at their facilities and find out what they did there, when I said I had PRMS, it was greeted with an “Oh”. I didn’t say anything at the time, but I came home and for the first time I entered in a search for PRMS and found a big fat zero. Actually that is a lie, it wasn’t a zero, I just repeated it as I knew it had something to do with petrol but couldn’t remember what it was “Petroleum Resources Management System”, not helpful. These days it still comes up before anything to do with MS, but at least there is something there, the world is moving on slowly, I say slowly as it is still woefully little. There is one thing that hasn’t changed at all, there is no research what so ever being done into PRMS or any treatments, there are so few of us that they say they can’t put together big enough people on which to carry out tests. For that reason, there are few treatments if any that actually work on PRMS, we are the baby they really do leave out in the cold. Like a lot of things in life I just kind of accepted that fact and got on with my life, it wasn’t until it took over and stopped the life I had, that I began to really start thinking about it and the true impact it would have on the rest of my life. I remember searching online at the time for information on being housebound and how anyone was supposed to survive that type of life along with the life their health enforced on them, just like PRMS, I found nothing. So here I was, with an invisible illness and totally invisible to the world as well. To be honest being 100% invisible was harder to accept than being ill and until I was made redundant I didn’t have to face it, I might have been housebound but I was still part of the world, then suddenly I wasn’t.

Each step along the way has had its own effect on me, I am now a very rare lily who lives in a rare environment and like every rare lily the slightest thing that goes wrong, turns into a major event. My body, like the bodies of every single person who lives with a progressive rare illness, doesn’t have the fight left in it to deal with even normal life without help, but where is the true help we all need. I know that sounds very bleak and don’t get me wrong, I more than understand the financial and medical limitations, but there are honestly a million things that could be done for people like me, mostly small things that would make our lives easier, things that could give us a better quality of life and feel like people again, I for one am not quite ready to stop being a problem without an answer.


Please read my blog from 2 years ago today – 06/02/13 – Body Check 2 

So where do I start, from my head to my feet or the other way round, it seems right to start with my feet. I don’t remember when last the sole so my feet didn’t burn, they are always painful in one way or another but at night when I lie in bed they start to throb, I stand so little that I am now left with only one conclusion……..