Adam is on holiday today but I am still on my own. He has taken what I know is a much needed break for him and gone to see his Mum who live about 40 miles away. Because of the distance he doesn’t really see her that much, having said that, I have never known someone who once they have left the family home, who has spent so much time talking on the phone or texting each other. Our families are so different, mine is totally fragmented and if I speak to my Mother more than twice a year, I know something major has happened. I left the family when I was just 12 and I think without exaggeration I could sit here and count how many times I have seen any of them since I left Aberdeen when 16. As hard as I try I can’t get my head round the constant chatter between Adam, his mum and his sister, any more than Adam can understand that my family specialize in ignoring each other, although now aged 52 I still have the respect I was taught for my mother, but absolutely no desire to be anywhere near her. I have little to gauge it on but I guess we are the two ends of that spectrum and most families are somewhere in between.

I always laugh when doctors or medics ask me that constant question about do I have my family around to help me, I always answer yes as trying to explain that outside Adam and my daughter in London, there is no one to help in anyway at all. People seem to expect for some reason that just because you are ill the the world will rally round and take over everything that you can’t do. My experience and that of many others is the absolute opposite, the reality is that as your illness gets worse more and more people vanish from your life. For the last 3 years I have really seen only medics, Adams family a couple of times a year, Jake a couple more, I see no one. If you have been reading for a while although you may have been thinking it just wasn’t something I talked about, the truth is I now only have one that isn’t part of my miniature family. Medics excluded, I spend 360 days a year seeing no one else apart from Adam.

The other week Adam was talking to his boss and I came into the conversation, she suggested that it might be an idea if I applied for a carer, someone who would come in to see me a couple of times a week, just to help me during the day and to keep my company. Adam laughed and told her exactly what I would have done if I had been talking to her, it would be my idea of hell! I accept that one day I won’t have a choice, because I will need help with the simple personal care things I do for myself, but now I manage fine as I am and I really don’t want forced company. Because my ability to do things varies and I often just want to lie down and rest or sleep when I want to, having someone that I would have to stop writing or not have a sleep because they are here, would be a total pain. Especially a stranger as it take so much effort to make conversation with those who know nothing about you, which is also completely draining on the energy side. Now that I am settled into this way of life, not having to explain or not having to make excuses for the things my body does, I am extremely happy.

I don’t feel that I lack company, or that I am isolated, or any of the other tags that are attached to the housebound, by those who aren’t. You really have to live this life to understand, it just isn’t any of the things you think it will be. Like I said yesterday, your entire mindset changes and so do your requirements of the world to find happiness and your place within it. I often think that the able bodies world problem in understanding comes from our penal system. Those who break the law are locked away from the world, we put them in jail, remover their right to freedom and contact with all the things that we seem to think are required for happiness. To many I can see how my life may seem just like theirs, I am locked away from the world, I have no freedom in the greater meaning of that word, but that is where the difference is. I do have freedom, I can do what ever I want, when I want, I don’t need a carer/jailer, as that is how it would feel, to regiment my life as they would want it to be. Forcing me into doing things when they were here rather than when I want to, being given this person who may have for what they think are all the best reasons and to them are caring actions, would kill me quicker than MS is managing to do alone.

My front door will remain locked for as long as it is physically possible to all of them, let them imprison those happy to accept it, but I won’t accept it, as it isn’t helpful, it would just be painful.

Changing Life

I woke up this morning tired, not how you are supposed to feel after 9 hrs sleep, I guess that means I will be tired all day. I actually can’t remember the last time I woke up feeling really great and bouncing with energy. I remember that great feeling of a new day with expectations of things to be achieved and fun to be had. I don’t remember when that ended but I do know that is gone. I’m frequently being told not to hold on to the past as it is gone and that I should use my energy planning for the future. I know this sounds bad but I can only answer that by saying ‘what future’. Yes I have plans of getting a new job and things I would like to do my home once I have one, but that doesn’t fill me with the warmth of my memories.

There are for me just as there are for everyone, dark areas which some would rather not remember, yet now I also embrace them. When you are forced to change your world, constricted with no way of continuing what you had, you see everything in a different way. I could moan about not being able to dance, walk or run any longer, make myself feel bad about MS or I can let myself truly remember, remember all the good feelings and find a freedom that reality had taken away from me. I haven’t stopped living I just changed the way I do it. Physicality is so much part of our world that to lose it seems unthinkable.

I challenge you to spend just one weekend at home, were you can speak to on one other than your partner, you can do nothing but sit in front of your PC in the day and TV in the evenings. No you can’t do any housework, a blessing you may think, but think that into the future and the dust that just has to lie there. You can’t read a book as your eyes won’t let you, nor can you knit, sew or any other craft type project. Theses are all gone, as is anything you need to do standing for more than a few minutes. You will then get a glimpse of the easy side of having MS. Then when you wake on Monday morning, I bet you will be happy to go to work, happy to have another person to talk to, happy to be outside. The thing is in my world I don’t wake on Monday morning to anything different than I do any other day. I wake to a limited future with a rich past.

There is still a lot left for me to do and much I want to do, but I have to accept that mountaineering just isn’t going to happen. I thought I would never survive living this way, yet I have and I think the reason why I manage is quite simple. I balance what I have with the richness of what was.

I’m not anything or anyone special. I’m not different or stronger than you, the only difference between us is I have Multiple Sclerosis, that’s all.