A lose of trust

Yesterday evening I discovered that I have been telling myself lies and doing so with great ease and accuracy. This is a little long I know but bare with me as the sequence of events is important. Every second Saturday it has become a tradition in the last few months that we have for dinner garlic bread and different flavors of chicken wings, I went and took them out of the fridge to find that instead of wings there were drumsticks, for the life of me I couldn’t work out why but it seemed logical that ASDA’s had sent a sub although I didn’t remember looking at them when they arrived, I always check subs visually. Despite that I settled that into my mind and called Adam to the kitchen to see if he wanted anything to go along with it and relayed my first lie with ease as I thought it was right. At that point I remembered that I had bought some honey parsnips for myself, my mind then changed the story, that I had intended for Adam to have the larger portion of chicken and I was having parsnips as well, lie number two. After we had eaten there was the blinding second when I remembered what the real truth was, I had bought the drumstick, no substitutes, I had never intended to eat any of them, they were all for Adam as he loves large quantities of meat. The day they arrived I was supposed to have told him that all of the two boxes if chicken along with 2 garlic baguettes where his to eat when ever he wanted and that I was having 2 baguettes and parsnips when I wanted them.

OK that was a long story about nothing on the surface, but the important bit is this. I couldn’t remember the truth or the fact attached to it, so my brain invented a possible sequence of events and fooled me, not once but several times. Each story could have been a possible truth and each time I accepted it without further question as the total and complete truth. I know the final one is right, as when I remembered it was a clear click into place. I can’t help now but wonder how many times I have done this before without the final bit, how many times I lied to myself and worse still, others. Clearly I have invented a way of dealing with the things I know longer remember and I really don’t like that, accuracy and truth are two things I have always held on to tightly. How can I be sure now of either?

I have known for a long time that I now have short term memory gaps and that to me was bad enough, loosing your ability to know what you were actually doing is something I was prepared for to a point. Recently as I have said before I have to check things more and more. I have found myself writing my blog and totally forgetting the subject by the time I go to post it on twitter and so on. I knew long before it got this bad that I would be wondering around not just physically but mentally trying to remember what next, but I wasn’t ready for this story building at all. I really don’t know how to deal with it or what the answer to it is. Short of writing down every single little thing I do and why am doing it, there is no way now of really knowing what my intentions or actions are. I find myself feeling somewhat lost, when you can’t believe what you think is fact, then lost is the only place I can be. I know it clearly hasn’t done me or anyone else any harm but the potential is worrying. My reaction like most people is to want to think about, it work it all out, but how can that truly get me anywhere, I can no longer trust what I think, I am thinking.

Frustration & Stress

My hair dyeing season yesterday was interesting to say the least, I know that my arms would hurt like hell and my dexterity would cause some problems but it took me longer to clear up, than it did to apply the dye, wash it out and dry it. But it had more of an effect than just making my hair all purple rather than a washed out pinky colour with grey roots. Having naturally strawberry blond hair I have always had a problem with my roots as I favored darker colours as I have very dark brown eye, my problem therefore was the opposite of the commonly see one of dark roots and light hair, but I can confirm that grey ones show even more! It actually felt really good just to do something for myself, normally I would ask Adam to help me but when it comes to things like my hair or cutting my toenails, something else I can’t do, we always run into the same problem.

I am naturally a morning person, I have never been one for staying in bed longer than I needed, I just couldn’t lie in late and would rather go to bed early than stay up late, this has actually been compounded by my MS. I have to keep in a routine as well, my MS likes it that way, play around and I pay for it. These days it is more marked my energy levels before midday are far far higher, by the evenings I feel a bit like a walking Zombie even though I will have had a sleep during the day. Adam on the other hand has a totally different time clock, he works during the week and normally comes home and sleeps for an hour, being really active again after 8pm. He will stay up every night until 1am with ease and likes to have lie ins on the weekend. I am sure the picture is clear, when he is ready to help I am dieing or asleep and when I am ready to be helped he is at work or asleep. I am sure we are far from the only ones who have this problem as I would say in general men are more the lie in person in most couples, in a marriage were both are able bodied it isn’t a problem in fact I think it is an advantage, as it gives both side time to themselves. When you rely on you literally sleeping partner it is hard, I don’t want to stop him doing what he enjoys at weekends but I need his help with somethings, my hair is a good example as I have waited for 6 weeks in the hope I could find a couple of hours when we are both able to work on it and it didn’t happen.

It is the small things like this that make being disabled frustrating, frustration is one of the hardest things to deal with. At no point in our lives are we really taught to deal with it, as children we learn to take our time rather than bash our toys to bits when they don’t do what we want them to, but when you have taken all the time in the world and still can’t do something the temptation to smash things to bits grows. With MS that is a bad thing, because that is a stress point, stress equals pain and fatigue. The whole frustration thing is a viscous circle, my worst frustration points are when my dexterity stops me doing what I want and of course the more up tight I get the less my hands do what I want. I wish I could write here a 100% fool proof solution but I can’t, what I have found that helps is to approach the problem in a different way. When my left hand was dead I found a million things that didn’t work but I also came up with solutions. I am an analytical person so faced with a problem rather than let the frustration build I channel my energy to finding a way round it. For example making a cup of coffee, the hardest thing was opening the canister and getting a spoonful out of it once I could no longer reach the coffee with out tipping the canister, tipping it meant it. There is a rubber matting that you can buy on line from some of the disabled supplies sites, it is meant to be for putting on a tray or table to stop things slipping, I bought some and cut out 3 pieces, one to stand the canister on, the second to go between my left hand and the slippy canister side, with the extra grip surfaces it flew across the room, the third piece was to put on top so I could unscrew it. A solution and the way I now try to approach frustrating situations, thinking differently takes the stress right down and it becomes a puzzle to solve. (Click this ‘Coke’ for a solution with bottle tops)

There are no easy answers to frustration or sleeping husbands, I think he is set for life, lol, but the rest I find that trying to be logical and approaching it as a problem to solve rather than annoy helps me a lot. I can’t fix all of the sources but if it reduces any frustration or stress it is welcome.

A problem, a moan and a fact

I am generally very good at remembering to take my medicines at the time I am supposed to, well to be honest my body will remind me to quite forcefully if I should forget. There is one exception and I am supposed to take it in the morning every second day, it’s part of the treatment for my now defuncted bowel. I think even people with good memories would have a problem with this one, but with my brain there isn’t a chance that I will manage. I have loads of so called coping strategies that I have tried ever since my memory started to live a life of it’s own, but none are full proof and all are forgettable. There is one big problem with every system that the designers seem to have forgotten themselves and here it is. If you are busy at the time the reminder gets your attention it is human nature to say to yourself ‘I’ll do that in a minute’ and of course in a minute you forget. There isn’t a full proof system and believe me I’ve tried them all, including Adam!

I have thought in the past about trying to come up with solutions to loads of the problems that I have encountered over the years and I have actually come up with quite a few. MS like many other illnesses is always changing and what might be the biggest problem today may not be a problem at all in a month. I did at one point waste a lot of money buying gizmos and sourcing items to help, that are now hidden away just in case I need them at some point in the future but I have no use for right now. Memory being one of them, I have personal organizers, Dictaphones, alarms, medicine dispensers, books with strategy guides, the list goes on, some helped, a bit, all cost money. Like everything else in life there is someone somewhere waiting to make money out of you and illness is no exception.

For the past few days I have had extremely painful legs, it is a common recurring problem and one that I have learnt the only thing that really helps are constant changing of position, rest and painkillers. Now think about it how do you keep changing position and also rest, MS is a monster. It has been about 4 weeks since I called the Rehab team in to see if we could find any new solutions rather than just increasing the level of morphine but they have still come up with no answers. I knew but didn’t want to admit it that even before I call in Rehab that there is only one solution and only one way that my life is still and will go is for me to be more and more reliant on drugs. This is a fact it is the reality of where I am and what is happening, it isn’t a call for sympathy or scream for help. I have Relapsing Progressive Multiple Sclerosis and I will never get better, I need to re aline my thinking to the simple fact it has changed and to stay ahead of it I have to accept those changes.