Declerations of faith.

2013 is at last beginning, no more muddled up weeks without any structure because someone declared it was holiday time! Nothing has been quite right over the last few weeks and I doubt that miraculously it will all be perfect from today onwards, but I at least have a chance of keeping check on which day it is. I woke a little early this morning and I had a range of reasons which might have been behind it so I will blame none of them, just one of those morning where I got out of bed early as many of us do day in day out. So nice to have something to write that say I am just like anyone else. Sometimes it is a little hard to remember that simple fact, I am just another human living just another human life. When you are diagnosed with a chronic illness you sort of become a title not a person and everyone’s expectations of you change, including your own. I had to fight against that one, being pig headed I chose to stand up and declare I’m here, I’m living and I have a purpose, I am not MS, I am me. I suppose I have never exactly chosen the easy path, as you may have gathered as you have read my blog I do what I think at the time and allow the consequences to happen if they dare. So a new year some how demands a deceleration of intent, a warning to the world of how we are going to change it if you like, you might just call it a resolution but that sounds so easy and so old fashioned.

So what is it I want out of this year, well I want to be able to carry on what I have started, I want to keep showing myself and you, that I won’t just sit here and decay into nothing as I once thought was my fate. I reaffirm that I will write everything I can, when it happens, with accuracy and truth and that I will track my health and thoughts as well as I can. That said, well lets move on to the next step, the longest project that I have been unable to get past the starting blocks to find only new blocks in my way and I have let, I suppose to defeat me, that book. I have lost how many times I have started and restarted and then started again. I am finding it really hard to rewrite what I have already done, it is all here in different post and different words but it is here. Somehow it doesn’t seem right to just repeat, copy paste or rehash, but when you pour everything into written words all the time what more is there other than what I will write tomorrow or the day after. This doesn’t mean I have given up on the idea or the actual, it means I have to try again and try until I find a way to make it work for me, those who read daily and those who have right now no idea who I am or that I even exist. A challenge I know but where is the fun in easy. The second part of that challenge is finding the time, I have just 12 hours awake and so much to do in so little time. If I had the money I would employ someone to assist me, a ghost writer if you like who could order all that I have already done. Strangely though I would feel a little as though I would be taking the easy route, rather than the honest one.

I know I alone like most others can’t change the world, my deceleration though is to change it one person at a time and if I can make one more person not fear being ill or be terrified that being housebound means their end, then I am happy with that. One at a time, is always more than one, as each one will pass on that confidence and in their own words and ways pass it on to others. If I can show one person that pain can be lived with and that having a brain that defies you, is nothing more than a hurdle that can be jumped even on legs that don’t work, well that’s a good day. Right now as I sit here I have stopped and started, read emails, been to fetch a drink, had to reread what I have written as I have no memory of what it is I put down here minutes ago. I know that I am in pain and I know that my body is defying me in every move it makes without my permission, but it doesn’t stop me having desires and dreams, it doesn’t hold me back from being alive and having a passion for life. No one needs to sit and wait for the end, it will come to us all, all to soon, so I live every second with passion even if it is a second that I will forget as quickly as it arrived.

Today is a day for new beginnings because I say it is not because of the date or any notion that it is that time of year. Today is the day when I or you can do anything, we just have to try and have enough faith in ourselves to believe that it will work, so try.

Finding belief inside yourself

I am starting to really feel the house being colder but I am still holding off the idea of putting the heating on. I have always been aware of the amount of electric and gas we use but it is worrying me now more than any other cost that we have to cover now that I am not working, I normally love winter and opening the curtains to see the world white with either snow or just frost, so far I have seen it only once, but this time it filled me with dread. Illness eats into so many small corners, what was once a simple joy is now a fear to be dealt with. I suppose much of my life could be seen that way, especially from the casual observer, but it is a million miles better than most think. I was asked this morning how I dealt with the really bad days, if I was totally honest I would say the simplest answer is that I deal with just as any other day, they start, I write, I read, I eat, I sit and I sleep, what changes is the time spent doing each and the speed each thing is done. I have like others that I now know, wasted time telling myself I will put that off until tomorrow, as tomorrow will be better, it is simply a case of kidding myself, yes tomorrow might be better, but it will never be again good. As long as I can find inside me, that feeling that life is still worth living then I am good and I go on. It is a belief, something you can’t be taught, it comes from inside and I believe that life is good. I don’t know what will be or if it will ever arrive a point that I will loose that belief or what I will feel if it did disappear, that is something that for now I can’t answer.

I find it hard when others want me to answer in a few words what it is that makes me still able to say I am happy and I can live this strange life that I find myself locked in. I worry that maybe I will say the wrong thing for that individual, as I don’t think there is a blanket one size fits all answer to any question like that. It may sound glib but I am happy because I am. If I asked you to analyses why you feel today is a good day or why last night you wanted to have a few glasses of wine, or why you love your partner, they are things that giving a concise and true answer to is impossible, because there is never one thing it is a mix of so many small things that make all of them what they are. Being happy is no different, nor are the other things everyone want answers to, I am what I am for more reasons that I expect I can even think of.

There are loads of things that I believe would truly help others to manage their illnesses and they are all written here in different posts, but the biggest one is here in this post and that is the belief that life is still good, that there is more than enough happiness to keep the balance tipped in favour of living and living with hope that life will remain good. You simply have to believe.

Brought up to be well

Adam came home last night proudly clutching a plastic box of red currents that he picked yesterday in his Mums garden, I got the impression from what he said it was the first time he had really spent a little time picking fruit as he seemed surprised at the quantity he had gathered. Even though it was in a garden I think he had felt a little of what I keep talking about, the simple joy of gathering and eating what you have actively had apart in bringing to that meal. There are always been strange moments like that, that bring home to me the difference in our upbringing and our ages. I was brought up by the generation who were children during the war, they had learned to always make the most of what was available, Adams mother is only ten years older than me, the same age as my brother, my mother is closer in age to Adam gran his Mother, she doesn’t seem to have passed that make-do-and-mend attitude on that mine did. It is probably the thing I notice the most when it comes to differences between us, I would never dream of looking for something to eat and simply take what I wanted, I always check what has to be eaten first, before it goes off, Adam just heads for the thing he would most like to eat.

I often think that your upbringing can also shape how well you deal with illness as much as anything else. I was brought up to not complain, or to stop, just because something was hurting. I can remember clearly been shoved out side when I was ill and being told to go and play, not when I was needing to be in my bed, but the attitude I learned was, that as long as you where able to be up and about, you were able to live life as normal. Bed was for too reasons, you were asleep or you were really ill, there were no toys or TV’s in the bedrooms of children, so there was nothing to do other than sleep, if you didn’t need to be there you were well. If you thought you could go downstairs and watch TV, you had to be well, I still find I that I work on that ethos. I am not lying in by bed unable to move, I still have the strength to stand, walk badly and sit in a chair, therefore I am well enough to deal with life as it is. I still find it hard to accept that I am ill enough to now be unable to find a job, that every company turns my down and even our Government, who are working hard to push those who can be, off the sick list and into work, have also listed me as so ill I am not expected to even think about the word far less do it.

I still find myself daily that I have a voice inside me saying that I am being stupid, that I am fine, I have the ability to do what ever I can and that I have to keep going as there is no other way. I’m not sure what it will take for me to actually agree with all the so called experts, other than the day arriving that I can’t physically swing my legs out of my bed and push and pull myself to me feet, them maybe I will be ill, but I think it will take more somehow. Our upbringing I think really does shape your reaction to illness, if you were wrapped up in a duvet in the living-room in front of the TV and waited on hand and foot, then I believe you are the person who will find the reality of chronic illness hardest. Our childhoods have been proved to shape us as the person we are and I believe our ability to deal with illness is the just another part of that now accepted theory.

As parents I don’t think any of us realise just how much we are shaping our children to live their entire lives, lives that not one of us can know, what it will hold. I brought Teressa up more or less the same way I was, she too doesn’t stop unless she can’t do anything else, she too is a strong independent woman. As her Mother I of course want nothing like this to ever happen to her, but I guess if it did, she to would cope well.