The measurment of now.

Thanks to the responses I had to yesterdays post, which I thank you all for, I have found one constant string from those who are chronically ill, that the thing we all hear constantly is, sorry we can do nothing. I know I am in contact with what is just a tiny sector of people, but if what I am seeing is the bigger picture as well, it is clear that millions must be wasted by hospitals every year, running tests on people like me who know our bodies in detail, as we have to, and know what is wrong with us without all these tests. My story is just one of many, but I am once again in the position where I told them what was wrong and why, all I wanted then and now, is help with dealing with it, yet I have had months of my problems getting worse without any help, as they wanted the results before they tried anything new. It’s nuts! I can’t help but think that there has to be a better way of doing all of this, that will actually help the people who need it, when they need it. Something that maybe all of us should think about, as clearly to me the medics aren’t thinking about at all. The real effect on me mentally is that of being battered and bruised once again by the medics. I have mentioned several times along the way, I really regret letting myself be pushed into the medical world that I had shut out for 5 years. To date all that has been achieved is more pain, more exposure to looks of pity and yet more confirmation that I don’t need, or belong, in the outside world any longer, it just isn’t worth it. The safest, least painful and least exhausting is my home, the home laid out so that I am independent as much as possible within it, something that is impossible outside it, my home is my sanctuary.

Since the other days bad bout it seems to have settled to it’s normal behavior, of discomfort and isolated section of pain for short spells, bearable as they are just that short spells. I can say it has returned to normal as I am noticing my left leg the most again, funny but that is a strange relief. How my life landed up at a point that I would consider a painful leg a blessing, is beyond me, but that is just the way life is. I suppose that is the way I measure things now, a good day is when I have short bouts of pain and constant discomfort, a bad day is when I am in constant acute pain. Every measurement of life changes, I used to measure things by how my life with Adam was and how well my work was going, but illness changes all that. You don’t even notice it happening, it just changes. Suddenly I find that a great achievement is managing to walk from my computer to the kitchen without holding on to the wall all the way there, or making the same journey in less pain than the last visit. Silly small things take over all the old measure, the whole meaning of life changes and what was important vanishes totally off the end of life’s list. I can look back over my life with some pride at what I did achieve along the way, but that is the past and comparisons just don’t exist. Happiness now comes from the smallest thing, the smallest human contact or approving act. I would never have thought that someone retweeting my tweets, would always make me smile, or that checking daily to see if anyone clicked and ad on my blog would become a ritual in my life, just earning a few pennies seems somehow important. To know I have made someone smile because of a picture I posted or that I have opened a door for someone to a world they knew nothing about, all these things have become important and a source of joy.

Someone who is totally able bodied I don’t think can totally understand the mindset change that happens, or how you could possibly be elated just by making it to the loo in time. I know that the me of 20 years ago would have laughed at the thought that that might be my most important achievement in a day. I know now that I can see from both sides, that to truly understand anything you have to live it. But I also believe that it is possible to get an insight, enough of an understanding to know how to react or even act, when faced with an individual who’s life is so different, without gawping or running away. The only way that will happen is if people like me are willing to lay our lives open so that everyone can see it.

Alternative Joy

It is hard for me to put myself in the place of a carer but I have tried often when I have seen the pain in Adams eyes, as though just looking at me is causing him pain and the tears are just below the surface. I don’t remember what the conversation was the other evening that brought that look to him, but I knew at that second he was in more pain than I was and it started me thinking.

I have often said that I felt it was harder to watch what is happening to your loved one than it is to actually live it, and that really is the truth. It is hard to find the words to use so that I can express this totally so bare with me as I work this through. Over the last few years were I have had to learn to deal with loosing my old life and adapting to one locked in a body that has little resemblance or little of the abilities we all take for granted, I have found there is something inside me that has guided me through the whole process. I know totally that in this I can not talk for others but I feel I have seen it in others so maybe many of us feel this way. The step by step lose of my health, my mobility and my body have been equally stepped by a feeling of peace, acceptance and understanding, explaining that is harder than it sounds. If I had been told that I had to stay in the house for a week, lets say 15 years ago I would have been climbing the walls in a couple of days, pacing round the house staring out the windows and looking for an escape route. Yes I was a normal human easily aggravated and determined to have my life my way. My pain tolerance was no different from others and having a tooth ache, would have sent me running to a dentist, seeking relief. I wasn’t a quick tempered person so that hasn’t changed much, but I was easily frustrated if I couldn’t do something, as I was used to succeeding at most things I tried, failure to me wasn’t an option. So I was a normal standard human, so yes if the rug had been pulled out from under me as that point and I had woken to find my life as it is now, I am 100% sure I wouldn’t have been able to cope, I would have been angry and unable to deal with the pain and totally unaccepting of sitting here day in day out with no escape, but that wasn’t what happened.

The process has been slow and has taken me gently to where I am now, everyday has been a slow step, not seen by others. Everyday I have changed just a little more and I have adjusted, I have learned. Adam like any carer can’t see those tiny changes, those tiny steps that allow me to continue to the next one, after the next one. To someone outside my body they would still be seeing themselves taking a huge crash to where I am now. I never took that huge crash, the biggest was the days I heard the words but by the point of my diagnosis I already had started the path of adjusting. When you as a viewer hear the diagnosis you feel a pain that I never did, as inside I already knew, I already had made adjustments and changes.

As time moved on yes you as a carer watch the pain and the difficulties, but you don’t see the strange things that the human brain dose, you don’t see the gift that it gives to someone who has to live it. Where it starts or how it happens I am not sure but there is a peace that starts to grow, I didn’t go looking for it, it appeared by itself. It is almost as though we have an alternative setting that kicks in and it carries you through the pain, gives you the escape route of sleep, removes the hard edges of everything by removing them and locking your memory to forget. Pain is something you handle when it happens and then you move on, quickly forgetting the last bout and strangely not fearing the fact it will all happen again. Frustrations have become short lived and there again you learn to find other ways. As time has gone on there is a magical change, one that changes us inside, one that allows us to accept each new thing as it comes, but I know it is hard for others to understand how this can be the case, but it is. I am at peace in a way I have never known before and I have seen that in many elderly people and others who like me have a chronic illness. Yes there are the bad day, the horrid days, the times when suddenly it all explodes and the world feels like it is out of control, but every time it happens the peace returns.

I know it is hard to watch someone you love struggling day after day, but look in there eyes when they are sat still, do you see anguish, do you see pain all the time, no. Take away the difficult short spells each day, the spells when the spasms stop me in pain, take away the difficulties of walking to the kitchen or back, the exhaustion and the confusion, over all of it only part of my day, the rest, the rest is peaceful, the rest is still very much living and very much worth having. I truly believe it is harder to watch all those things than they are to live, trust me when I say that the over riding emotions that life has given me is one of peace and happiness, the other things well they are the difficulties of life, just in a different more personal way.

As I said at the start I can’t talk for everyone but I am sure you have seen what I have written here in others because I have and I really do believe it is all part of being ill that we find an alternative joy to life and a peace that until you feel it is hard to understand.


There is something about being chronically ill that totally changes your values and views on life, your insight to what life is and how to live it. I know I am not the only person you has spotted this in themselves, as I have talked on Twitter to a few who also feel it. It isn’t that many years ago when I like many others worked every hour I could and I was a loyal and committed worker from myself employed days right through to my final job I gave my all. Everything in my life had to be done at a thousand miles an hour and nothing short of perfect was good enough. My appearance, my work, my home, my projected self, all had to be spot on, if it wasn’t then I had to work harder. I dreamed like many of winning the lottery and what it could bring to my life in the ways of luxury, not big houses and holidays and clothes, I’ve never been that type of person, but in cleaners and cooks to help make things even more perfect. I had like most become disconnected to what was really important and the world outside of a TV program that I watched whilst working on other things. I was reasonably average and settled into a grove where I had been put rather than had chosen. Over the years since I health impacted more then the odd flare, from when my MS turned progressive and I started loosing control of perfection, my entire views of everything started to change.

It isn’t as some might think just a case that I have suddenly realised how important health is, due to my flares I was well aware of that already, no it was more basic than that to begin with, I was suddenly aware of my own vulnerability to death. I knew like everyone that I wasn’t going to live for ever, but I had though that I would have had time to live before it happened. I did at first deny that MS was impacting me as I was superwoman and I was going to go on as before and more so. I wasn’t going to be beaten down and I wasn’t going to be those people I saw curled in a wheelchair. Denial is a dangerous place and it made adapting a harder process than it could have been. I did slowly start reassessing, not knowingly, I see it now that I gradually was changing and it wasn’t until quite recently that I realised just how much I had changed and what it was that was making me change.

It isn’t your own mortality that is the driver as I had thought, it is the process of getting there and how it will play out that changes your values, the time to live, not really, it is more how to live that time. When you know that you are slowly regardless of any medical intervention closing down, bit by bit your body is forgetting how to do things, it is supposed to do without help, then everything is changed. When you know that everyday of your life short or long is going to be spent in pain, then what is important changes. When you know that one day you will be trapped in a body that won’t even do the simple acts of living without help, the world changes. How does it change? Well, I have always been good at forgiving, some people have done things to me that others think I should want to see them dead for, I never felt that way, I feel it even less now, now I hope they have long good lives, not just forgiven, but forgiven with bells on. I no longer have to have things perfect, I see now perfect is impossible, I am happy they just are, if perfect that is a joyous thing to celebrate, but not vital to make them so.

Knowing that tomorrow I could wake and be unable to walk makes me no matter how painful glad at every step I take, when did you last just enjoy walking through your home? Each meal I eat without choking, each drink I take without drowning, each glass I lift to my lips by myself are all joys. Oh yes, there is a pain when you try and can’t. Every few minutes that I can sit without having to move again as tears are forming at the pain, they are joys, slipping quietly into sleep is a joy as is waking each day not sure how to get out of it, getting out is a joy. I no longer takes something amazing to happen or to be given a wonderful gift because everything is amazing and everything is a gift. I wasted so much of my life missing all of this, not realising that these are the important things, not fancy houses, not the wardrobe full of cloths or cars and holidays, not having your boss telling you, you did a good job, all nice, but not as wonderful as having the movement to do that job.

Everything changes and my dearest wish, would be for you to see these joys, but without all the trauma it has taken for me to find it.