Finding a gift.

So lets see how is the body today, well tired, no surprise there neither in the fact that both legs are hurting. Sounds like no change then, well yes and no, it is now 8 days since my Endoscopy and I have at last been to the loo for the first time, I was a little shocked as it was seconds from waking I had to rush to the loo. If this had been the next morning I would have understood, but it’s 8 days and I passed almost pure water, as I had when I was drinking that pre Endoscopy gunk. A somewhat surprising result but that is how it was, something that I suppose I have to remember to pass on as a fact to the Docs when I go to see them next, no appointment yet but I doubt I will hear until mid Jan anyway. I really don’t understand my body as something like that has no sense behind it, surely you would have thought that my bowel would have got rid of that last Saturday not a week on, I suppose that I will just have to wait and see what happens next.

I am starting to find that all the waiting for appointments and the not knowing what is going on is starting to get to me. I just wish they would get on with it and give me peace. I have always been against staying in hospital for anything that I don’t have to, but I can now see the advantages of being an in patient, all these investigations would be done in a few days and by the time you left you would have an answer. A bit like it was when I got my diagnosis for my MS, that was a three day stay, then a weeks wait and all the answers where there and we were able to get on with everything else as well. This has been a wait and wait more process and not one single step closer than we where at the start. I can’t but help wondering how many people actually land up being an emergency admission, just because they have become worse during all the waiting. I know that some would say that I have the time to wait as well what else do I do, but that actually makes it worse. When you are working and there the normal activities of life, waiting for a letter to arrive is a lot easier to handle.

I was thinking the other day about Christmas and the fact that we really don’t have the money to buy gifts for any member of the family at all and I had a great idea. I find receiving a gift, especially when I can not actually give, a hard thing to handle and I also know that when I ask for no gifts to be given to me, no one listens. They may not listen when I say don’t give me, but they always ask what I want, so this year I will again say I want nothing, but if they really want to give me something, then what I would like is for them to, in my name, work for at least an hour during one of the three days of Christmas, at one of the homeless shelters. It will be interesting to see what they do. I actually think that as a present it would be a wonderful gift, although I am not and never have been homeless, I see my position as caught inside a home I can’t leave, as the almost the opposite of my situation, they have no home and no way into one. At this time of year and with so many more out there homeless than there has ever been before, that any help that can be given is worth more than any physical gift this year.

I do know myself that not having the money to buy gifts and not the decsteritry to sit for the hours I use to decorating and garnishing their gifts, is a hard thing for me to accept. Christmas was to me the time of year that I could give to those I love things they wouldn’t have bought themselves, but would love. The decoration was the final show of my love as I took the time to show it in each sprinkle of glitter, string of beads, and twisted bow. MS has taken all of that away so now I want to give in another way, I want to give to those who need the attention and I can only give it in my name as I can’t get there myself.

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.

Financial Frosting

I am on the verge of turning on the central heating, this is the third morning in a row that I have had to put the fire on in the living room as the house is cold. I try not to put the heating on as like most people I don’t want high bills until I have no choice, with no work the need to keep the bills down grows daily. I know Adam would probably never put the heating on as like most men he doesn’t seem to notice the cold at all, at this second he is on the settee without a shirt on and I am here with a cold nose and fingers. When you loose your mobility you also seem to loose anyway of controlling your body temperature. It is normal for people with MS to not like it being too hot, but I find that I need the room temperature high with light clothing, if I add more clothes I don’t warm up as such but I start to feel ill. Locking the heat into me in a closed fashion, as a jumper would, makes my feel really bad, turn the heat up and sit in a nightdress and I feel fine, but let the external temperature drop and I quickly freeze. I don’t understand why temperature control is so hard to maintain, but it is really a big problem, add on to that I can’t afford to have the heat on, as I would like it to be, and there is my problem. I suspect that winter will only be a growing problem for everyone with the cost rising all the time, we are all going to suffer.

It is very clear to me now that every problem that anyone can have in life seems to be heightened by illness and it is often these heightened problems that make living with illness harder than it needs to be. I am not asking for any type of special treatment, but what I do know is that I now find difficulties that I didn’t include years ago when I made my first list of things required to make my future comfortable, just as I am sure we all do. You plan ahead, for example on what limited mobility will mean to you. I set my home up to be my nest as I knew that one day I would be ware I am now but I never thought that limited mobility would mean sitting freezing in my own home, when the thermometer is reading a temperature that I would have been happy to be in years ago. Or that I would be in the situation that in the upcoming winter months of not being able to go into my own kitchen and cook a hot meal because there is a very high risk of just burning it, bad on three levels, no much needed food, waste of fuel and danger of damaging the house. I never foresaw my future to be anything like this when I was young and I still never really foresaw it all when I got my diagnosis. I know it could be seen as doom and gloom but if it had all been written down for me to read once I knew what was wrong, I may well have planned slightly better.

The list of things that I wish someone had told me and explained to me, seems to grow all the time, but it is simply the fact that I didn’t know or imagine that has left me in this position. I know that we can’t predict the future but I also know me and I would have made more investments than just my works pension to help ease us through this time. That is actually something I need to look at soon as I can draw from my pension when I am 55, not that that may actually be a bad move, but I will have to find advice on what to do there. I hate all this paperwork stuff now and I like many don’t know when or who to trust when it comes to financial advise, I can’t get out there to do the rounds and see what advise is given by different people, so where do you start, again something I might have done differently, I think I would have had a better hold on my money and paid more interest as to where it was and what it was or wasn’t doing for me, when you have a steady comfortable income they are all issues you think you have a long time to get to grips with all that stuff, I thought it would be another 10 years plus before it was of final interest. Yet here I am, a little lost as to what and who I can trust to sort out all these things.

Changing Values

After the rain of the past few day it is really nice to look up from my computer screen and see the sun bouncing off the buildings across the road. at this time of day it is still lowish in the sky and the warmth outside hasn’t started to build yet, so only one window open for just now. Even when you are caught inside the weather still somehow seems important, not because you want to know what to wear, or if an umbrella would be a recommended accessory, it’s importance, nor do I find that the weather effects my mood any longer, no it is far more subtle. On dull days I find that I loose track of time, the hours and minutes seem to drift into each other, but when the sun shines it’s track across the sky and the light it sends into our living room keep order to the day, without clock watching. I have found many many things just like the sun, were the importance of them has changed. The calendar means little, there are only a few dates that I have to keep track of, or remember, so days are just days, if Adam wasn’t at home at the weekend I probably would be unaware of their presence.

It isn’t the lost importance of things that is most notable, but the way previously unimportant things are now vital. I have an obsession of having what I want to eat in the house at all times, I really get angry with myself if something runs out before the next shopping day. I don’t remember before getting angry about little things in the past, in fact anger only used to appear if I had been hurt by the actions or words of someone else. Now I get angry at the opposite, inaction is far more likely to anger me than action. Although I have never been a person to remain angry for any length of time, I have become a far more mellow person over all, day after day I pass through it’s time and I am content to do so and I have, not 100% but in that direction recovered from a life long obsession of having my home picture perfect, I can mo longer be found straightening the fringe of a rug with a fine brush, but I do still straighten the odd ornament when I am on my feet.

One of the things I have noticed greatly and that is I seem to have become passionate about the News, the events of the world now have meaning, not just in what might appear as a replacement for being out there and part of it, but I never made the time before to understand and care, I regret that in a way, as now I can’t, I find I want too often to go to the places where help is needed and offer my help to those who need it. It isn’t until now that I see I could have done so much more but I was too selfish as most humans to interrupt my all important life.

Chronic illness isn’t just about being ill, it is about your entire life. Without an conscious effort, or even permission from me, I have changed all my values and never set out to change anything. The important things to me now of my husband and my home have even changed, they are in many ways more important but in different ways. I love Adam and have done from very soon after we met, that love, as it would with most couples who are together for a long time it has deepened, but on top of it an admiration for how he has coped through out all of this, how he has adapted to taking on tasks never before required. My home is as important on the side of a place I love to be and live, but the obsession of it’s appearance has diminished, but my feeling of belonging here and safety has grown. There isn’t anything now I can think of that hasn’t been touched, adjusted, changed or reviewed and not by me but by what MS has done to me.

In the UK, I say that because I have learned that it is different all round the world, but here when you are told by a doctor that you have a life changing and ultimately fatal illness, they tell you wait for a few seconds for your questions, which of course you can think none at that moment and they then send you home, may be with a few leaflets. There is no help, or counseling to help you grasp what it all means, they don’t tell you what help you might need or where to find it. Your given a pile of medication and sent home with an appointment for a year from that date. You go each year your meds may be changed or a new therapy my be recommended, but no one asks how you are coping physiologically, physically yes, but not if you are coping with the acceptance and changes you are dealing with. All of this is just left for you to go through and to deal with in your own way, I would recommend to any one that you learn to accept what can’t be changed, save your energy for fighting what can be. When the day is dull well drift, it won’t do you any harm and you will benefit from the relaxing flow and should the sunshine set your day out to fit its path. Adjusting can be as simple as that.