Brain slide

Adam managed to rearrange my hospital appointment for, much to my surprise it is actually a day sooner than the original. This of course, means that I have to now start putting together the chronological list of what has happened in the past 4 months so that I don’t go through the usual horrid situation of sitting there with a totally blank mind. What is about doctors consulting rooms that as soon as you sit down your mind just vanishes and all those feelings that are inside you and you had ready to throw at them, turn into meek little pleases and thank yous. Well maybe that is a bit of an exaggeration, meek is something I don’t do all that well, but embarrassed and blank I do with great ease. I know that I have to keep what I have to say concise, but I also what it to be more than just a list of words, I want it to be strong enough for them to see just how my life is being destroyed by this, it’s a difficult balance to achieve.

It’s odd how you can be desperate for something to happen and then when you know that it is going to happen, you suddenly feel happy but overwhelmed and scared at the same time. I know that all I wanted for the last few months is help with what is happening to me, someone to be able to bring a halt to all the pain and the sleepless nights that leave me unable to get on with what is left of my life, but now it is happening, there is fear. I have tried so hard since my GP said that he was sending me to see the consultant again not to think about what that really means and what the consequences might be. I didn’t want to think about all the possibilities as I know none of them are going to be something I want to hear. I am not that wet behind the ears to know that when my GP couldn’t do anything else for me, that means that he believes that the only options left aren’t going to be found in a pharmacy. I also know that they there is no magic that can bring my nerves back to life, nor can I go on like this forever. It doesn’t take a genius to know what it is I fear, but the whole idea that I possibly might land up haveing to have a stoma, doesn’t exactly fill me with happiness. Life with a plastic bag stuck to me, somehow doesn’t feel like my life, I know that sounds mad as what is me? After all the years of PRMS destroying me, I couldn’t be further from me if I tried.

I have done all those things that everyone says that you shouldn’t, including the one I keep telling others not to do, I googled all the possibilities I could think of and all the possibilities that google gave me in response, surgery always seems to be the result. It isn’t even the surgery that I fear, I have had enough operations over the years to know that surgery in its self isn’t something to be feared, but the whole ball game has changed since I last went under the knife. That was the one thing I couldn’t find, how do they operate on someone who is overweight, has PRMS and COPD, with enough Morphine in her system to sink a battleship. The last time they had to do anything to me and that was just an endoscope, they couldn’t even give me anything to help with discomfort, or anything else, I just had to lie there and take it. I keep telling myself not to jump past into nightmare land, I haven’t even seen the consultant yet, but honestly as humans, we all jump into a nightmare land when we are faced by what could, even when the chances are much slimmer than mine, be something without what we personally would call a good outcome.

There are so many things wrong with going into hospital, from the minute I wake up on the day I have to go there, to getting home again and that is when I am only going to see a consultant. There are a million things far more wrong with the whole idea of actually having to stay in a hospital, even if it was only for one night, which if my fears are right won’t be the outcome. I know I wrote a post a while back listing all the things that make hospital stays for someone with a condition like mine almost impossible, from the need to stick to our own personal routine, to the sillier little things like how on earth do you sneak out for a cigarette when you can’t walk very far and operating your wheelchair is almost impossible. What I didn’t put in there though were my fears of dealing with all those people, I find people so hard to handle these days and the few that I do, well they are normally family. I can’t imagine being stuck in a ward with all those others who want to make conversation, small talk about a million things that mean nothing to me as I haven’t been part of their world for so many years. Not to mention the noise of the place, noise 24/7, which when you need to sleep between 12 and 13 hours, is enough to drive anyone around the bend. I know that many think that because I can write as I do that mentally, I am still rather switched on, but I’m not when it comes to getting words out of my mouth and my ability to control my emotional responses to things is almost zero. I am honestly scared of how long I would be able to maintain a civilized reaction to the whole situation. I honestly fear that I might land up shouting at people to shut up, just because I can’t deal with it all. I really hate having to talk to people, even on the phone as I get wound up so quickly, often not with them but with myself. Stuttering, getting my words mixed up or lost the worse or more tired I get, being in a place like a hospital where social interaction is expected, without Adam to take over for me when I can’t make myself understood or I am too tired to continue, I don’t know how I would cope.

Then there is the slight problem of food, meals that I would find impossible to eat as I don’t eat anything that the majority of people in this country call normal. Just the idea of sitting looking at a plate filled with British food actually makes me feel sick, add in that it’s mass catering and I feel even worse. Food for me is an emotive subject, it has to be right. The worse my health has got the fussier and more picky I seem to have become. I won’t even let Adam sort out my food for me as I am so sure that unless I prepare it, it won’t be right, even if that is only in temperature and I know hospital food is alway at the wrong temperature. Even when I have prepared my own food there have been many occasions where I have landed up putting it in the bin simply because when I have taken the first mouthful it has been wrong for some reason. In the last few months, it has been getting even worse as my taste buds seem to have created their own unique interpretation on flavor, what can be right one day can very quickly turn into wrong the next. Then there are all those doctors and nurses constantly wanting something from me, the feeling that your not so much a person but more a body that is occupying a space in their lives, just for that moment as what happens once you have gone home means nothing to them. There is never peace in any hospital ward, get rid of the other patients and even the medical staff and you are still left with cleaners who seem to spend every minute of every day polishing floors with a machine that noise drills into you head. Porters who crash and bang their way around, moving beds, trollies and wheelchairs around crashing into doors and generally making enough noise to wake the dead. I have just scratched the surface and already I am sure you are getting the picture, but the bit that might be missing is if it takes me 3 or 4 days to recover from a visit to see a doctor, how long would it take to recover from actually having to stay there for awhile and how much damage would the whole thing actually do to me long term.

I know I am jumping ahead into something that might or might not happen, but even if I somehow manage to avoid staying in hospital in the near future, I am not stupid enough to believe that this situation won’t happen in the next few years. As my health goes downwards and more and more of my nervous system is affected, the chance of my staying out for ever, would be a miracle, one I doubt I will be lucky enough to receive. There is one other thing that actually makes staying in a hospital that bit worse, I wouldn’t be able to be online for a while and that is something I would find really hard. Not being able to keep writing to put everything every day on here and not being able to keep up with Twitter, well it would be a bit like volunteering to have my right arm cut off and a lobotomy at the same time. I don’t have anything that I could use in a hospital to keep me in contact and even if I did, then the problem of charging it appears as hospitals never let you plug things in. There is nothing about staying in a hospital that I would find easy and there when it eventually happens, it will be because there is no other option, which still doesn’t make it feel any easier.

I have 12 days before I go to see the consultant, 12 days of all these things running around in my head, there isn’t anyway no matter how hard I try to shut it off either. Sometimes having a brain is a real problem.

Read my blog from 2 years ago today – 7/05/13 – I won’t hold my breath

It’s just hit 11am and I can’t believe that yet again Jake kept me talking about nothing for over an hour, I am going to have to find a more direct but still gentle way of slipping off the phone without hurting him. As much as I love him and he clearly still cares for me, after all these years, I do find it very hard……..

2 thoughts on “Brain slide



  2. Hospital is not the best place to go if you are sick. Sounds silly but it is true. I don’t blame you for not wanting to go there. Fingers crossed that you won’t have to go in. X


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