No way to fight

There is a brick wall that is now clearly part of my life. It hides well for many hours to the point that I believe I have defeated it, then bang, it’s back. I guess it is now about 6 weeks since it started and I have mentioned it several times in my posts, giving it either a good or a bad spin, depending on how I feel that day. Well today it isn’t going to be spun in any direction as this has now moved into the position of fact. I haven’t been able to get far past 9pm and occasionally earlier without going to bed. Last night at 8:45 I went to the kitchen and was happy to find that while I was getting my glass of coke that I felt really OK and that I would be able to stay up and watch the new Attenborough documentary, Africa. Less than 20 minutes later I was having trouble putting words together and what I could say was slurred and labored. What I don’t get is the speed that it hits with, I am being totally honest in saying that it is like standing at the top of a snow covered slope, jumping on a sledge and sleep hits in the seconds it takes to finding myself at the bottom. All day long I know if I went to bed I would go to sleep but that is a different thing, this isn’t a case of background tiredness, this is full on if I don’t lie down I will sleep where I am. Nothing has changed in my medication so I can’t blame that nor am I drinking more, actually I am drinking less. So last night just after 9pm I was once again asleep in my bed, out of everything until the alarm goes off.

To have lost another hour or two out of my day is hard to accept, especially as I treasure those hours as time I spend with Adam. Evening to me are important and it almost feels like my MS has gone out of it’s way to find something new to hurt me with, well it has. I spoke to Adam about it last night and he like me is well aware that it is happening but he had nothing to blame it on, any more than I do. It is all very well to say I just have to put up with it but as you may have noticed in the last few weeks it is an issue for me. I often talk thing through here so that I can get to grips with them or so that I can explain how I feel to others, this is a case of both. This is a sudden and unexpected change, one that I hadn’t ever really thought about happening and it did suddenly, no gradual change, just a sudden and extreme one.

Imagine that you suddenly lost 2 or 3 hours a day, everyday from being able to spend with your family. When you spend your days working, and your time with the people you love is precious, it is even more so when that is the only time you see and speak to another human being. Life suddenly goes from spending between 4 and 6 hours everyday happy and interactive in your world, now if you manage to get 3 hours, you are lucky. Would that be enough for you? It is already beginning to feel as thought Adam and I simply pass each other each day, that our contact is so limited, it is becoming like we simply share the same place to live, rather than our lives. We kiss to say good morning and we kiss to say good night, but the actual time together is getting less and less and all because my body has stolen yet more of it. Yes it makes me sad and yes it makes me angry, but when you can’t fight it what can you do? I suppose one of the things that worries me right now is will I loose more. I had thought it was just a phase that would sort itself out, but it has being going on now for too long for it to be a phase, nearly 2 months seems rather permanent to me. I suppose now I need to try and find away of dealing with this, I am not happy as things are but I don’t know how to change it and how to make it work for both of us. I suppose by realizing head on that this is an issue is a start, but it is a hard issue to find a solution to, how do you fight your body going to sleep.

A plan is formed

It was and is pride that wouldn’t let me ask for help and my writing it all down, then posting yesterday with the knowledge that Adam would read, had the effect of me bulling myself, and it worked. Adam and I spoke last night and we are going to try something between ourselves to see if it will make any difference to the situation. We hadn’t discussed any of this before as I hadn’t wanted to talk about it, being independent and pigheaded can be useful but it can also be damaging. Adam is going to buy a calendar and we are going to plan out what has to be done when, unlike the check lists I have kept myself and landed up manipulating this is going to be where Adam can see it, remind and bully me into doing what has to be done, just as he already does when it comes to food.

I realised when we were talking that a large part of my forgetting is caused by another problem that I can’t actually do much about. I get exhausted easily as you know, so I have a system now of not doing one thing at a time, as in if I need to get a glass of coke I wait until I have one or two other things to do as well like go to the toilet, before I move. That way I waste as little energy as possible as I am doing as much as I can in just one trip away from my seat, the flaw is that I forget some of the things on my list, or worse still, mark it as done, when I have done nothing other than briefly thought about it. I now have some work to do today and over the next few days to see what I can do about it, I have already found one thing that I see why it goes days from when it should be done, to being done and it is a simple one to fix. I keep my medication in the kitchen where I have a cupboard big enough to take it all and I need to be in the kitchen with all the meds out in front of me so that I know I have asked for them all. We have phones all around the house but only the living room phone has stored numbers on it, so to call my doctor I need that phone, problem. I have to keep walking back and forward to sort it all out. If the kitchen phone had the number on it, I wouldn’t need to use up energy or put it off until by some miracle I remember to take the phone with me. I have spent the last 4 days putting that one off as well, I am sure that a lot of the problems I have daily can be helped a little if not a lot by simple changes, others well we need to think about them.

I don’t want anyone here in the house with me as I really don’t think I could deal with it, strangers stress me out more than anything else I have to deal with, I want to see if we can sort it out well enough, now that both of us know what the problem is, two heads may be better than one as they say. It is going to take some thought and some care but I hope there is an answer that means I don’t have to have an outsider checking everything I do off on a list and telling me what to do, like a child who doesn’t know better. If it doesn’t workout well then we will have to think again. I know I need more help than I did a year ago, or even 6 months ago but I need to have a feeling at least, of having some control of my life, for as long as I can. I am lost and I am scratching around trying to find solutions but I am still a long way off from lying down and saying you win.

The Elephant in the room

I used to believe that life was written out for you in advance and that what happened to you was really not in your control, all you could do was go with it and survive. It’s strange how you change as you grow older. Although I don’t think I am following a script any longer I do still believe that things happen for a reason and we just have to work out what that reason is. With everything that is happening in my life now between Twitter and here I often wonder if this is why I have MS. I seem somehow to have developed a talent that I didn’t know I had, to inspire people and to reassure them that life is never over, until it’s over. I sort of fell into this and there was never a great plan of what I was doing other than I gave myself a couple of simple rules, the first that I told and wrote nothing but the truth, as I see and feel it, the second that I was going to do thing my way and not follow the crowd. So here I am suddenly with so many people reading what I write that keeping up with them all is almost impossible but I do what I can, when I can.

I have to say that all of this has really gives me a huge boost everyday and confirms constantly that having something, anything that makes you feel you are achieving, that there really is a purpose to your day, you will be able to manage your illness better as well. At times I know I make it hard for myself writing the things I would rather not think about but for me it can actually help at times, writing it down helps me process it all and settle it in my mind as well as lay it all out so that others can read what really happens.

The reality of last weeks visit to the hospital is I am still not back to normal, last night I again couldn’t stay up and only managed to stay awake as long as I did because I was watching TV with Adam. I actually really like our evening together, just sitting in the same place at the same time brings a closeness that we really don’t have as we used to. It is hard to do things like curl up on the settee together, I can’t physically get comfortable in anything less than sitting or lying out flat, pain isn’t only when you move around the pain is there through everything, just the simple thing of having a cuddle is painful. I haven’t written a great deal about the effects of chronic illness on a partnership and I feel that maybe I should as something like MS is not just a personal condition it is a life condition for all those who are around you and care. We hadn’t even been married for a year when my health nose dived and it was as hard on me, as it was on him. Both of us were helpless and both of us were in our own personal hell, while we both tried to adjust. I think it could have been easier if we had possibly talked about it more, but MS was the Elephant in the room and neither of us wanted to anger it. I think that is another reason that I would have liked to have an information pack at diagnosis, as reading it would have given us focused point to discuss, rather than wondering around each other trying hard to pretend nothing was wrong, individually reading up about it on line, when the other wasn’t there. I guess that is how it is for many, there seems to be little point in talking, as talking wasn’t going to change it or heal it. So we both silently tried to work it out in our own ways, finding information that was different from the others and expecting very different things of what the future might hold.

Those first couple of years although I was ill, life did carry on very much as it had before and we talked less and less about what was happening to me. I have heard all to often that marriages don’t last past that point, too many times I have been told that the partner left, so I am more than lucky that we survived as we have. Yes it did worry me that we wouldn’t, and there were times when I wondered if we would be split by it, but we survived. No matter though how much we love each other, MS is like having a third person in the marriage, it has a say in everything, and neither of us can do anything about it.

marriage, partner, partnership, love, talking, together,