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.

Dreams to the future

It is strange how your life can be taken over by something without you giving permission or actually realising it is happening. A year ago I never thought that I would be writing a daily blog and being very active on both twitter and Facebook, somehow it all happened. Life for me has followed that pattern all to often, drifting into one thing after another and still no real direction in anything. I think it is true of most people, we just are, and we just do. Clearly when I started to blog my goal was for me to have a record, and I had no feeling or desire at that point to take what I was doing beyond that point. I found myself though with a purpose and a direction, which is kind of funny when you think about it. My life and my writing are all about actually not being in control any longer, but it has delivered the first strong goals I have ever had. I don’t think that I have actually written them down before as they are so long term that I have no idea if I will ever succeed in completing them.

When I started writing that clearly was about my MS and little else, how it affected me and how things felt when they were happening. It grew from there into my second blog which was my feeling about all kind of different subject, post that were designed to make people think about all kinds of topics that they may never have really thought about or even heard of in some cases, to me that was the fun side. Between the two I opened myself up totally to the world, there is little now that is still unsaid, not hidden on purpose just not said yet. Just before I started my second blog I branched into Twitter and it was my rapid growth in followers that started to lay down the ideas of the goals I now have. MS is not the focus any longer so much as all chronic illness and most of all those who are housebound. No matter where I have looked or searched that is no real information or network for those who are housebound, nothing that gives them a voice and it really feels and looks as though we are the forgotten ones. It was this that pushed the current goal of writing a book, I was asked by several to do so and it is turning into a slow process as I have already scrapped it twice as I wasn’t happy with it, version three is about to be started, hopefully this time it will work for me.

Once I have my book complete and published in what ever format I eventually settle on, then I can move on to the next step one that I think will start to make the most difference. I have this idea of setting up a support network for those who are housebound and their carers, a place where information can be pulled together, not medical definitions but as I have done here, where an person with any chronic condition can add their description of the way it affects them. Hopefully there will be enough people involved over time that it will supply description that people can actually understand in layman’s terms that it will be a resource for all. As I said a big plan that I might not ever be able to complete or even get of the ground.

I have come across so many people who are living lives that the ordinary person in the street working 9 to 5 have no idea even exist, people who repeatably say to me that I put there feelings into words, but I can only do that for the things I know about, there have to be others who can also do this and add to the site supplying help in away that is just as important as any medicine, the knowledge that you are not alone, others are going through the same thing. Once housebound you don’t meet others, you can’t talk to other patients you might have once met at a clinic or a support group. Being isolated from the world is one thing, being isolate, trapped by an illness is another. I want to raise the profile of all those in my position, including their carers and families, just having others in the same position words, to reassure you, means an amazing change in how you feel and how you cope.

Well that is it written, that is my goal, a long way off and may be just a dream for ever, who knows, but I do know that there has to be a better way of keeping the world open to all, surly the internet can supply it and provide that missing link in our lives.

Steps to the Future

I can’t believe how much the pain in my back is getting to me. I live daily with pain everywhere and on new pain from an accident is driving me mad. I have even added ibuprofen on top of everything else and the pain is still getting to me? The whole pain relief thing isn’t making much sense to me lately as I have mentioned a few times, from what everyone tells me I really shouldn’t feel pain at all with the level of drugs I am on, yet I do? I hate puzzles that I can’t find the answer to myself. I am so used to in life being able to analyse a situation and find the root, then the solution, I feel kind of lost and stupid when it comes to this problem. The pain has spread today and I suspect that I have now hurt other areas in my attempts to relief the root pain caused the other day, the pain has spread right up to my waist, so walking is now a painful proses from my ankles up, there is a great temptation to go to my bed and stay there until it goes away. Defeatist of me I know, but nothing else has made any difference.

I am not really feeling well at all today and it isn’t just my back I am once again feeling sick and really out of sorts. I have been having chills and intense nausea at times, which I suspect is my gallstones so add in the extra pain and I have found myself in the normal human situation of feeling sorry for myself. Pathetic I know but hey, it proves I am as human as you or anyone else.

Yesterday and today I have been thinking more about starting to write outside my blog and pulling together my work of the past 10 months into one manuscript. I actually feel ready to write more but to do so I will have to change my daily routine to make space for it. That is really what I have been thinking about to tell the truth, more than just the writing, in my mind I have made that step, it is now planning that goal so that I can action my plan. This is what I have been waiting for, I am a strange person, I can’t do things until I am totally comfortable with them, it is one thing taking and idea and saying that is a good idea, to then being able to say I am ready to do that. One thing that won’t and can’t change is this, my daily blog, this my root and I need the day to day writing as to be honest it keeps me sane. If I tried to get through a day now without an outpouring of what my body is doing to me, I don’t think I could do it. By writing I am making my record and I am staying true to me determination to document the truth for all to read, including me, this is becoming my memory, well the god given one doesn’t work so I need another. I believe what is gong to be cut back has to be what I do on Twitter, I don’t want to give it up just trim it back a bit, I am also going to trim ‘Touching Space’ the three post a day is going to come down to just one, between those two changes I hope that I will make some free time, enough to start writing my book. This afternoon the final planning and as always a sleep so that on Sunday I have a new working order.