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……….

Tomorrows reality

I think my lungs are just that bit better this morning, well I feel like I can actually breath most of the time. Once again I am hanging on the phone waiting to book an ambulance for Thursday, and I guess I might be waiting for a while, that is at least….., wow I take it all back that was quick and easy this time, too easy. Sorry but I just don’t trust them that much, the good thing to me is the appointment is at 5:45 pm, so I am hopeful that most of the clinics that have patient who need transport will be over by then. Now I just need to fill in all their forms so that I have them ready to go. I am thinking of doing that tomorrow and doing it while I am blogging so that I can give an idea of what they ask and what is needed to be relieved before you even see a doctor. I am sure that there are many out there who have like me never been anywhere such a place before, so some of you may find that helpful. I am not doing that today as Jake is coming to see me at 1pm today, so I want all my blogs and so on done before he arrives. Jake can’t open a pay pal account but he likes to buy things on Ebay from time to time, so I set it all up and if he wins he brings me the cash and collects his item, I have one of those items sitting here waiting. I actually haven’t seen him for a while so it will be nice to have a brief catch up. He has been the most constant of friends I have had, we may not see each other a lot but we speak every week and he makes a point of calling me. He cared for his father in his last few months and I think he has a better understanding than any of my other now vanished friends.

I try hard to explain and pass on what I have learned not just here but on twitter and Facebook, but I am touching still a tiny number, and of course they are the ones willing to listen, you can’t make people listen you can just hope that something touches a nerve and the learn from there. I expect that is something that I have in common with bloggers around the planet, a wish to pass on information, not for our own self glory, but so that a tiny part of the world is changed for the good. I wish I had the power of the TV channels, not one of which have I ever seen showing programs that explain those changes that are forced on millions of their viewers. Yes there is the odd program that will appear out of nowhere, or a story line in a soap that lasts a couple of months but that is all I have ever seen. Sorry dreaming out loud again! What is on TV just now that I am finding a refreshing break from all the Christmas programming is the doomsday programs about the 21st of December, sorry but I just love science faction, as in what if our planet was….? How could be survive if….? It never ceases to amaze me how much of it I have heard in Scifi, just proving how great their research is before they start to write.

I have recently received several approaches from well meaning people with what they believe is a cure for my MS, I do research each of them, but I always find one of two things, lots of money with no proof, or that it is something once again for people with relapse remitting MS. It is 12 months since I started to blog, strangle on the 21st, but in all that time and with all the people I have met on Twitter, here and Facebook, I have only once found one person who had the same version of MS as I have, I have made contact now with over 22 thousand people, and no list of hello’s from people with PRMS. It has made me realise more and more that the chance of any cure for me is zero. I had little doubt before I started all this, as well medical breakthroughs take years not days. If today a scientist had that eureka moment, it will probably be 20 – 30 years before anyone tries it on humans, I won’t be around to see that even start. I thought that from about month 6 after diagnosis, but the longer I remain in contact with the outside world and count those like me, my chances are now guaranteed to be zero. So my life is what it is and clearly that is still a good one, it is also one without false hope, something I think can be more damaging than the illness itself. I would drive myself nuts if I were to sit here searching for that cure, that magic pill that will change everything, acceptance of where you are is really one of those important steps towards living a good life, in your new environment. My hope is there, as big and as strong as ever, but my hope is the hope that I can continue to live this life for as long as I can, not that I will be well tomorrow skipping down the street.

Optimist of Pessimist?

I realised today while chatting with a friend that we all make assumptions when it comes to our own and others health. She know that I have MS and had assumed that I have relapse remitting just as she does, I don’t I have relapse progressive, for those who don’t know there are several variations with in the Multiple Sclerosis family. The most common is relapse remitting which kind of does what it says on the tin, bad spells called relapses followed by spells were you either recover totally or most of the way back to normal. That’s were mine is different I don’t get better, some of the way but always worse than before the relapse.

‘RRMS’ has several medications available and is the easiest to control but still not a nice thing to have. ‘RPMS’ has a more limited range of treatment and I have already had the most aggressive one possible, maitotoxin which is a form of chemotherapy. It’s kind of strange watching people gown up with thick gloves, aprons, glasses and so on to prepare what they described as a highly caustic blue liquid, then attaching a tube to you and let the stuff flow slowly into you. It made a huge change, it brought me back to a much improved state and slowed things down for a long time. It can badly damage your heat though so they will only give it once.

When my friend said that she thought I had the milder form I realised that we always do that. Assume someone else has the best possible outcome, but when it comes to ourselves we assume it is the worst possible. I know I have done this several times in my life, in my head I have had several terminal conditions but if someone I know is really ill in my head they will get better, they don’t always. Which prompts my question, are we all pessimists about ourselves and optimist about other?