Imprisonment

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.

To far alone

Yesterday ran a way with me and I found myself with tears in my eyes frequently. It started to go wrong when I actually managed to first remember to make a phone call and second when they actually answered my call. I received an appointment to go for Breast Screening, I knew where the unit was and strangely it is right in the middle of Glasgow just a short distance from Central Station. I decided to ask a few questions about getting there and what would happen when I got there because of my needing help. Just as going to the hospital I was going to have to arrange an ambulance and the stair climber but when I asked about what the would happen on arrival, I felt myself going in to a sort of panic. The clinic is in a very public area and there a about 8 steps from the road to the doors which of course would mean a slow climb in the public eye just to get in there. Now that may sound like nothing to you but lets step through what this day would really mean to me.

First as always would be the getting ready and the stress that alone seems to cause along with the added fatigue. Next getting out of the house and into the ambulance, not a nice trip down the stairs but neither is what I spotted on the last trip out, that people in the blocks near ours, leaning out trying to see who and why the ambulance is sat in their street. I can only imagine how much that would happen at the other end. This building is not a hospital and it is on a very public road where hundreds of people go by and like it or not that will mean loads of them starring, to get up those steps would take a couple of minutes and of course I haven’t added in yet that Adam couldn’t be with me, as they won’t let him come with me in the ambulance. After climbing those stairs in full view of all those on their lunch break, and once actually in there well the person had to think about this bit but said eventually that she thought there was a wheelchair. Next would be the lift and then waiting for the scan where, she said it would take a few minutes but getting the scan done, she thought was possible from the wheelchair, it just meant adjusting the machine. Then all the problems with getting clothes off and on before having to go through everything in revers eventually getting home. Just sat here on the phone discussing it I was getting into a panic about it all, my head was spinning about how I could and would manage it and I was terrified, I couldn’t do all that by myself, there are just too many possibilities of things going wrong. It was completely stressing me out and I got into such a spin that I was a stuttering word less mess, but I managed to cancel the appointment. There is just no way I would be able to manage all of that, even now when calm I know I can’t manage it, it is just too much.

I have gone form the wildly nutty over confident person to one who can’t even think about a simple journey. If I was going to an actual hospital I would be fine, I have done this three times in the past few months it is where this place is and the fact I can’t have Adam with me to take over when I got lost. 5 mins on the phone and I was a wreck, tears and shaking and fear.

The evening found me back in tears and this time well it was understandable, I was watching children in need. Seeing those families and what kid have to go through, well you would have to be very hard person in deed to not have a lump in your throat and tears in your eyes. Having lost a child my heart went out to those parent who had lost theirs and the tears where all over the place, understandably.

Being Totally Alone

This is a day that is going to be dominated by my legs, they have been screaming at me since I first woke. It is almost impossible without lying down to actually remove all weight from them, it doesn’t matter how I sit the pressure builds in my thighs and joins itself to my shins and calf’s. I have joked over the years with Adam about wanting new or no legs in preference to the ones I have, this is very much one of those days. It is strange but one of the things that does help a little is to use the foot massager, it is the massage that helps but keeping my legs moving even slowly, just running my feet slowly back and forward on the wooden cylinders. I suppose it is a constant mild repositioning of the pressure points, but it is distracting. Not long ago I would have found it really easy to do two things at the same time, now keeping my feet moving takes so much of my concentration that writing at the same time is a real challenge.

I had been planning all week that today was going to be the day that I was going to dye my hair, it hasn’t been done for several months, but sods law looks as though it is going to win again and my hair may get washed but that will be it. It is only 10:30 so I may be making a premature conclusion, the progress of the day will tell. Thursdays are strange days for me, when I was working I occasionally had that Wednesday feeling, hump day, but since the job went Thursday has taken over, and I am really not sure why. My weeks structure has remained the same thanks to Adam working, if I was on my own I think I truly would loose the point of having any daily structure, I can see it would be all to easy to just drift everyday with no need or desire to know which day it was.

I used to often think about what would happen if I didn’t have Adam with me and his support through all of this. I know there will be many out there who are in that position and I really don’t think I would manage on my own at all. The challenges of every day life is one thing but for me I know the hardest thing would be dealing with the outside world. The damage that has been done to my brain means that I don’t deal well with change and things not happening when they should. Just thinking about having strangers in and out of my home, doing things like cleaning and so on is distressing just as a thought, the reality would be horrific. I have said often that I need things to be constant, to know where everything is exactly, down to it’s position and direction. Dealing with someone who wasn’t here exactly when I expect them and them moving anything in my home without putting it back to within a millimeter of where I have put it, I really would go mad very quickly. It is hard to explain how distressing I find anything that isn’t just as it should be, to an outsider it would appear to be like an out of control OCD but it isn’t it is more than that. Change is highly distressing as it leaves me feeling lost and often terrified. In fact this is a silly example that has happened in the last few days.

As we are heading into winter I like to have the curtains shut before dark so that they help to hold the heat of the day in the house. At this point in the year it is important as I am trying not to put the heating on yet. Adam closes the curtains and I then go round finishing them off, if you can see no light around them then there are no gaps to let the cold in, simple. There is one curtain that really is a pain to manage and that is the bathroom one, on occasions it can take five minutes or more to get it just right. For the past week when I have got up in the morning I have found the curtain has moved and there are not just gaps but it is not tucked the way I left it. As the days past my tucking and tweaking increased, but in the morning there were the gaps again. It took me several days of going in there and feeling not just total frustration, but a strange combination of upset and fearful. I would look at the curtain in disbelief and felt like I was going to war with it, even tweaking it again in the knowledge it would soon be open. Last night I spent about 15 minutes removing the ornaments, twisting and weighing down all the edges I could as I replaced the ornaments again. Some pieces would shift while I was pulling and I would have to do them again, I even found tears on my face as I got angry as I couldn’t make it stay, but eventually I was convinced that I would win, and it would be just as I left it when I got up. This morning there is was again, moved, light and cold air, coming in round those horrid gaps again! So I asked Adam what seemed an equally mad question of was he moving the curtain, he was. When he had his shower late at night after I was asleep he had been opening the window, undoing all my tweaks and twists, and letting out all the precious hot air, then closing it badly again!

I know it is so silly to get wound up about a curtain, but if I can’t deal with a curtain, how would I deal with a stranger? Without Adam here to yes on occasions drive me mad, but mainly keep me on the level by working with my mad brain, I wouldn’t manage at all. For those of you out there managing on your own, well I salute you as I know I couldn’t do it.

Alone

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.