Controlling Reality

Another night when I ran to my bed as soon as the TV let me,it’s mad the way that we let that box in the corner rule our lives. I know you will say why not record but I record all evening all evening the best of what I’m not watching, that way I have reasonably good stuff to watch during the day. I was really in a mess yesterday and the day before from about lunch time onwards, just like both day’s I really don’t feel that bad at the minute, but I am just waiting for my brain to shut down and for me to get lost in a fog filled cavern with custard up to my waist. I couldn’t order my thoughts or manage to keep getting things done, I just went round and round in circles, not completing things and not knowing what to do next. When things are that bad it is a strange place to be, on some levels you don’t care as what is there really to care about, I’m alive and able to situp so I’m OK, but then there is this feeling that I am out of control and I have no way of sorting it all out. I feel numb and as though there is the huge bag of cotton wool around me, keeping the outside world away from me, but not allowing me to get through when I want to. I sort of float from one place to another pulling myself in line for a few minutes, then loosing the control again, and I am just waiting for the day to pass as fast as it can so that maybe tomorrow I will find my personal balance again.

I am sure that many people spend their lives there and I maybe I will one day to, and would that really be that bad? To be honest that is a hard question to answer, when I am clear enough to think it all through and what it would really mean then maybe at this level I could live there. If it was worse then yes it is that bad, and it is not a place I want to be, now or in the future. There are these levels of acceptance, marks in the sand that I don’t want to cross without a way back, anything is acceptable if it is limited, if you have the reward waiting at the other side, that there are good spells to take shelter in. Without those clear areas, it is really hard to know what it would be like there for ever and more intensely than anything I have been through so far. What I do know is if I was in the really bad phase, worse than what I have now, I would need someone with me all the time and that is the place I don’t want to think about. Strangely it is actually something that I and others would have to measure it by would be a case of do I have enough about me not to put myself in danger, as in not burning the house down by trying to cook something, rather than looking at the things I can do. I just had this silly image in my head of myself sitting on the floor in front of our gas fire with a pan, if I’m that out of it, please world line up to shoot me.

Everything seems to gang up on me when I am in that type of mess, it is almost as though it is a conspiracy by my entire body, the pain levels rise all over me. The other day I mentioned needing to use my catheters again well they are part of it as well, everything just stops working. Last night when I went to bed the pain everywhere was nuts and that included all the pressure and pain spots across my entire abdomen, proof to me that my bowel problems are all part of my MS. The only thing that was no worse or changed in any way were my lungs, but this morning when I woke my throat was tickly for the first time, once I had had my coffee it settled and now it actually feels a lot clearer, so not part of but possibly the catalyst. I am tired this morning just as I have been every morning recently and again I want my bed, so I guess I am heading for another afternoon and evening just hanging in there until I can sleep out the remaining hours and a new day has begun.

I know that the likely hood is that this is just a phase, or a flare coming from my chest. I know that in a week or so, I will probably have actually forgotten that it even happened, as that is the way my life is and one of the reasons that I write, as Adam reads and he will always be able to find the information that Doctor needs in here, even if my memory can’t find it in my head. Right now I have bad spasms in my left leg and I can feel the fog moving in minute by minute, so good bye controllable reality, we seem to be slipping a part again.

The Zombie Fog

My MS has delivered me today it’s favorite thing to try and cope today. It is one of those symptoms that varies hugely, ‘Brain Fog’ can be simple thin mist to a ‘pea-souper’ or as I think of it a thick custard and that custard is thick. I am having real problems keeping my brain in one place, I am flitting all over the place and typing is an interesting process, all I can say this thank God for spell check, without it I doubt you would be able to make any sense out of this at all.

There was a strange thing I caught myself doing a little while ago and I didn’t like it. On TV and in films you sometimes see people sat looking totally blank, zombied, for some reason they usually are sat their with their mouth hanging open, I was doing exactly that. Why? I can’t find a single reason for it. I don’t know how but I was staring into space and my jaw had dropped, as though the control muscles that normally hold your mouth shut had just switched off. one minute I was typing stopped to read what was on the screen and then suddenly I wasn’t doing anything, I had become that horrific image I have of people when everything has stopped, except the basics needed to maintain life. Clearly I pulled myself out of it but I am left with this fear that, that is how it starts, that it will happen for longer and longer spells until I can’t pull myself back.

I think that is my biggest fear and always has been from the day that I was told I had MS, this vision that I will be eventually a zombie that just sits there, having spasms and twitching. I expect that all of use with any type of illness that effects the brain fear that end, that is why I believe that we all have to stimulate our minds, especially when it doesn’t want to be. I may be wrong about this but I have been doing so from the point when my MS turned progressive and so far, as I hope is clear in my on line activity, I am still very much in control. Loosing more and more of myself is a scary place and I nor medicine are unfortunately unable to stop it. I accept the physical changes, as strangely they are reasonably easy to deal with, there is always a way round or a way to manage a physical problem but your brain, it is just a totally different thing. It isn’t just Self-determination, it goes further than that, we all fear that being locked inside a body that does nothing and not being able to make ourselves understood, what if it was the other way round.

You could say that would be a blessing if you didn’t actually have a mind that processed anything, didn’t know what was happening around you, or what people were saying, what they were doing to you, I agree. It is the getting there I fear, that slow loss, bit by bit, of me, until I am gone. It is that possibility that keeps me fighting to keep my brain active, of having things round me that trigger my memories. I can only hope, that I will not have that happen to me, and I can try to stay as ‘with it’ as I can. The question still remains which is worse the slow slip to being a real Zombie or the physical drop into a world were you are locked inside, either way there isn’t a choice.

A vanilla cure all.

If there was a smell in this world that I would hate to never smell again, for me has to be Vanilla. Pure Vanilla, not mixed with magnolia or any of the other things that air fresheners insist on adding. Vanilla to me takes me back to being a small child and before anyone jumps in with a connection to ice cream, well you are wrong. My mother used to make what she called cornflour custard, the world is now full of different brand so powdered custard but back then I can only think of three, Bird’s, Creamola and Mum’s, alright my Mum isn’t a brand, she also wasn’t a very good cook. I used to love School dinners as they were edible all the time, unlike the stuff that appeared on our plates at home. Yet she had one saving grace to the child that was me, cornflour custard.

All custard powders are the same base, cornflour, flavoring and colouring. Except Mums’ it had no colouring and a wonderfully strong vanilla taste. All she did was heat milk, add sugar, vanilla extract and then the slated cornflour. Once cooked through she served it with a handful of Sultanas on top. Not only did we get this glorious pudding after our evening meal on occasions, we also received it as a cure all. Any time we were ill, this bowl of heaven appeared with the sultanas added as a smiley face, it always worked as well as we always got better.

To this day vanilla is still a smell that means instant comfort and home. Smells link us so quickly to places and to people, last night I made a fruity chicken curry and I was back at my Auntie Lorna’s, she was the person how introduced me to the wonders of Indian food. With at little thought I am sure I could find more and more of them but cornflour custard is the one I still make when I feel unwell with something other than my MS and although my nose doesn’t stop running or my cold doesn’t go away, I still feel better.