Last night when I went to bed I was really hoping that I would wake at least at the same level as I did yesterday, I’m glad to say I did. Although it really seems to be just my feet that are improving, when I woke I felt brighter than I have done for a while, that to me means more than the decrease in the pain. I have lived with pain that long that I find I can get on with things to a point but when you are pulled down by it everything is a struggle, that small improvement means a lot! This morning is the first one for a while were I have sat here for 3 hours without a single tear insight. I haven’t been crying my eyes out it has just been a case of from nowhere a tear or to have appeared and at worst it has been my eyes filling once then clearing, but those tears spoke loudly to me. Although I have problems holding emotions in check they don’t normally run a muck when I am on my own, they are normally triggered by others as Adam knows all to well, but for me to be sitting in tears with nothing but me to trigger them, just wasn’t right.
I know things are still bad but I also now know that I am back in control of how I feel about it all and that is so important, probably more important than getting rid of the symptoms. When you can’t see past where you are and see nothing but a downwards slope it is really tough to handle, I accepted long ago what lies a head of me but rightly or wrongly I had a vision of it being a slow gentle slope, not falling off cliffs all the time. Yes I am in a flare and it isn’t over, but having that tiny improvement makes me feel that the free fall aspect has if not stopped at least slowed and it has given me back enough to allow me to be comfortable with where I am just now.
I’m not sure how to explain the feeling as it isn’t something I ever felt before I had MS but the closest I can get to it was when I had ‘Glandular Fever’. If you have had it, you will know that it is an illness that also drains you and leaves you wondering if it is ever going to be over. I have a memory of being in bed for weeks, with no strength and no energy, just sleeping and sleeping. My mother said I rarely woke for the best part of a week and I still remember when I did get up eventually, that just going to the toilet and back left me zonked. I was only about 11 but I was so scared that I was never going to get better, that my body was never going to stop hurting and that I was never going to be able to go back to school. The last one was the only high point in it, but that physical drain also drained me mentally, I didn’t have the strength to hold a conversation or to be part of the world. Then like now it is that last bit that is the worst of all, the fear that you are loosing the world. I do sometimes wonder if that long term illness was a training ground if you like, I was ill for the best part of 2 months and I wasn’t allowed when I went back to school to take part in anything energetic for another 3 months. I learned then that you might fear you are dieing and that life is never going to be the same if you do live, but the truth is, life goes on and it might not be the same but it isn’t that bad either.
Being out of control and lost to the world in my head is more debilitating than the physical restrictions, loose the battle in your mind and you have lost everything, win the battle in your mind and the physical doesn’t matter so much. I am in no less pain really when I look at the all over levels but I am winning in my head and that changes everything. My world is becoming peaceful again.
I have reset everything I do on twitter and the new format will start at mid day today with at reduced output I should now have some time to start on what I have talked about for a long time now, a book. I still haven’t worked out if I am just going to e-publish or look for a publisher but I don’t see I have a lot to think about on that score without a book to do either with. lol I am both excited and worried about heading out into something new but that is natural and if I wasn’t I would also know that I am wasting my time, with out fear and excitement a new endeavor is bound to fail before it starts as they are the things that add passion to anything in life. I am not actually going to start until tomorrow morning as I have something else I need to get done today so that everything is cleared out of the way and I will have no excuses not to get going.
It is a wonderfully quiet Sunday morning and I have the living room windows open yet the silence is only disturbed occasionally by a lone car. Days like this are strange I always wonder when there are no cars where the people are, and what is happening that I don’t know about, it feels so odd to be in a city without audible sounds that confirm the existence of the thousands that live here. I even checked the news channel just in case, well everyone could be inside watching something major, even when I can’t get out of the house I still have to know what is happening out there. I think actually that is another thing that I would put down as required to survive being housebound, you have to maintain a healthy interest in the world, I may not be out there any longer but I haven’t in anyway forgotten about it’s existence. I can see that it would be very easy to turn everything in on myself, as I don’t really need to know what the weather forecast is or what the latest thinking on business matters are, in someways actually I think it is more important now than it was before.
Although my blog is clearly about me and my way through all of this, if I actually sat here all day everyday thinking about what was hurting and what it meant and how I was going to keep going for the rest of my life, well I would really go mad and probably stop existing very quickly. Looking outside of my nest and continuing my interest in everything that interested me before, helps me to feel still part of the greater world, and that is really important. Anyone who is housebound will tell you there is a cruel fact, your fiends disappear one by one. When they are the ones who always have to come and see you and you can’t go and see them, when they don’t know any longer what to talk about, when coming to see you makes they feel guilty that they are still out and about, and when they can’t deal with watching you get more and more ill, they vanish. When you loose your physical link to outside, and outside no longer visits you have to do it yourself. So yes I do still continue in someways where I was before but I do it not as a way of looking back but as a way of looking at the now and what is now to everyone else as well.
I often feel very alone and that is very different from lonely, I feel alone not because I don’t see others but because I don’t see others like me and as stupid as that sounds that is what I want, I want to know others are also surviving and I want to know I am not the only one facing the problems I do daily. I think that is were Twitter has helped a lot, just hearing other voices coming back telling me they feel the same, or some that my words are their voice have helped me through what in many ways has been a rough year as loosing my job multiplied every problem I already had by a factor of 100. So now it is time to write, time for my next step on my path through this mess I now live happily.