My concept of time is clearly no longer anything like it was in the past. I know they say as you get older time moves faster but when you have 6 hours a day less of it, well clearly that is going to have an impact. Adams coming and goings and the TV schedules are the only things that really stamps time on to any day. I was thinking earlier that if Adam wasn’t here for some reason for several days I think I would really loose total connection to the days or times all together, which is just such an alien concept to me. I have always been one of those people who lived my life at least 10 minutes ahead of the rest of the world. I was never and I do mean never late for anything! In fact I was often hours ahead of everyone, as I would start work at 5:30am daily when there was no reason for me to start until 9am, it just suited me as I had set hour a month to work and when well that didn’t really matter so much. So to find myself with only one point in the day that is fixed, when the alarm goes off in the morning is more than a little odd compared to my life to date.
Having MS and now being housebound has so many knock on effects that to the outsider, most would never even think about. It isn’t all about being ill or being unable to leave your home, there is an ever ending list of impact points, things that in an average life wouldn’t actually cause a seconds thought, if any thought at all. Lets say a button falls off your shirt, no biggie, you just find a needle and thread and put it back on. First biggie, could I actually pick up in one movement that button, or is it going to be a case of chasing it until I have it boxed in with no choice but to allow me to lock my thumb and finger in a pincer action. This is ignoring that dropped buttons are usually on the floor, somewhere that reaching is hard but if I had to get down to it’s leave then almost impossible to get back up from. A needle is again a challenge to just pick up, remembering where I keep them is another, but to thread it when you can’t see the hole and just catching hold of the thread, in fingers that can’t feel either well, but lets say I have done that. Now I have to find the coordination to actually sow, whilst holding on to all individual items at the same time. Now take this one example and start going through your day, we will make it a day off work so it is easier. Go through your day step by step, applying just the details I have given you, we will ignore the pain and the stiffness or any of the other things, lets for now just use what I have written here. Work your way through the day, from making your first cup of coffee, or not, through to you last action of the day going to bed. Starting to get the picture. People think about the big impacts of illness, the pain and the fatigue, but they miss that illness isn’t all about being ill, it is about the impact on life, simple daily life.
In many ways it is those small impacts that means I could no longer live alone, not the major symptoms at all. I already rely on Adam to do so much for me, simple things like the housework, dishes, washing, everything that any home requires someone to do. If I was here alone for several days, well the place would be a complete tip by his return, because of what I can no longer do. I feel terrible that I constantly ask for his help, but those choices that you make daily to fetch a glass of coke, or empty the kitchen bin are as out of my control, as the pain in my legs is. It is if I am honest, the small impact points that I come across daily, that makes life harder and harder to live with. The frustrations of living with not having the ability to look after you world, is amazingly high, and equally degrading to your quality of life. I asked you to imagine one day with simple limitations, well now add in everything you have read in my blog to date for that same day, and yes you have guessed it, imagine that is your future. Your picture of life when trapped by illness may be building but I can’t put into words the total reality, nor can I write it well enough for you to step into my shoes, if you like.
If all I had to do was live a normal life but just with the addition of pain, even the same levels that I have, I think I could do that. I really believe that if pain was the only issue, I could still be working, I could still be who I was, it is all the other symptoms, the smaller ones that many forget when they think of illnesses like the one I have, that makes you disabled not the pain. The exhaustion, the lose of dexterity, memory, strength, mobility, visual problems, brain fog, muscle weakness, speech problems and on and on. Pain is one and only one part, but it is the one everyone thinks of above all others, as the most terrible thing to have to live with. Don’t get me wrong, I would be elated to be rid of the pain, but pain really is just part of the picture, but a picture I hope you are closer to understanding the more you read. Other wise well what I am I doing this for, I do this for all who read and all who want to understand the world illness plunges not just me, but millions of other into.