I clearly haven’t been paying attentions as I just noticed that half the year has passed. I know I have said before that I didn’t believe that life speeds up, but if I can sit here doing nothing new, just exactly the same thing day after day and still can’t hold onto the fact the year is passing, what must it be like for those out there still working and trying to have a life as well?
My day has started badly, I hadn’t been out of bed for more than 5 minutes when the severe pain started once again in the left lower side of my ribcage and below it for about 3 inches. I did what is an instinctive thing, I bent towards the pain and triggered the pain from my gallstones, well what I assume is my gallstones, as I didn’t know they were there until the doctors found them last year when I had no pain, just that from my diaphragm at that point. The pain didn’t appear until several months later and I have just put two and two together, just as I would expect my doctor to if I were to tell him about it. Anyway, the result is that I am sat here not able to move even a few inches out from truly upright without causing a shard of pain far greater than the movement. I have taken my booster pills and I am once more using my E-cig as though it is a gas and air machine, in the hope that somehow it will make that magical difference that I am dreaming of. I seem to be dreaming of that more and more these days, maybe I will discuss it with the MS support worker and see what they think, I doubt that they will say anything other than to talk to the doctor about it.
It has taken me a long time to get my brain working as to what support workers really are, I eventually remembered that I had an argument with one on the phone a couple of years ago that I didn’t need their help as I had everything covered, she was so insistent that there would be something she could do to help and almost seemed to be pleading to come and see me that I eventually gave in. She arrived and sat here for an hour going over all the possible things that she could offer me and at the end of it, she said that I had everything covered. This time, I think I am going to ask him exactly what his scope, training, and qualifications are before I start telling him anything as I am reasonably sure now that they are social workers, under a different name, I guess I will find out today once and for all. If I am right I will have to tell Adam so that he can remind me next year and I can then answer their letter, telling them I don’t want to see them. Don’t get me wrong, I am sure that a lot of people, especially those at either end of this illness will find them really useful, but I am past the point of not knowing what is available in the way of financial help and pre the point of needing further assistance at home.
I doubt if I am any different from the majority of people out there, in that I have become very cynical about everything that involves outsiders when it comes to my health. When I was first diagnosed I was desperate for information and help with everything and at that time there was nothing other than a group that met up on the far side of Glasgow, a group that both Adam and I found useless very quickly. Even back then, just 13 years ago, finding out about what benefits and so on where available was almost impossible, it was a game of luck, who you spoke to and who other people knew and what they had been able to claim assistance with. We worked our way through it and in reality yes we missed several years of financial assistance, years were due to my health, when we were unnecessary stretched, but we got through it. If it hadn’t been for the help I eventually got, I wouldn’t have been able to keep working and what would have happened then, well wouldn’t have been worth think about. Now though I am in this middle world, a world where lists of what I need to do and what is needed to keep myself well, no longer work, but I am not at the point where I need someone to wash me daily, take care of the skin that breaks down all the time. I can still use my catheters, but I forget, again the list don’t work, but I don’t want or need someone to do it for me, that would be my worst nightmare. Both along with so many other things actually endanger my health, but I can’t do anything about it and I don’t see how anyone else can, short of someone following me into the bathroom every time I wash or go to the loo. On one level I know what has to be done, on another, I have no memory to make me do them, a middle world, a place where I am on my own, but I am not quite ready to have another person there with me.
I am heading day by day closer to a time when I won’t have an argument against it, but now, right now I am not in great enough need, or ready to head into the final stages, the point when my life is a function, rather than a true life, independent and alive beyond just in function. No matter how many possibilities there are in life, once you have lost the battle of health, those possibilities vanish quickly and life becomes a list of functions that have to be controlled, actions that you have to do and where everything ceases to be simple. I am in limbo, caught between disabled and severely disabled, the worst thing is, though, that it is that very limbo that will push me over the edge and ensures that the next step happens a loose loose situation.
Even I can sit here and see just how stupid that all sounds, if not doing something is going to be the actions that take away even more of your health, then surely you just do it, regardless what else happens, you make it your priority. So easy to say, so incredibly difficult to do and trust me, so infuriating and frustrating.
Please read my blog from 2 years ago today – 03/07/12 – The flipside of kickback
It appears that I’m not allowed a simple day or one where I could sit back for more than a few minutes and say I’m OK. I honestly don’t remember feeling this ill for this long ever before. It is now almost the end of week four and to be honest, I just keep feeling weaker and weaker, but on the upside, I think we might have an answer. On Thursday morning, I was sat here when the phone rang. The display told me…..
o dear I feel so sad reading this,can not imagine what you are going through.but I have my own daily battle ..to get through a day sometimes,it is difficult..I wish you well,and hope you know( if it helps) that there are many people in similar situation.Doesnt help tho does it? knowing that others are suffering .and it really is a lonely battle,which can be relieved by other loved ones caring .and loving us in spite of the problems..good luck to you and somehow peace to help you cope..