Pain Clinic or not

Right now I expected to be having a shower and getting myself ready so that I would be ready to go to the pain clinic, yes you have guessed it, I’m not going. It isn’t my choice but not long after I finished yesterdays post the phone rang, it was the ambulance service, they had been sorting out the routes for today and realised that I wouldn’t be free from the clinic until after the service had ended for the day. Apparently it was a new member of staff who had taken the booking and hadn’t realised that it was outside their working hours, somehow I don’t believe that, if I had a penny for every time that excuse had been used by a company well as they say I would be a millionaire. Clearly I have had to call the hospital and get an appointment that is within the normal hours, this means that I now have to wait 10 weeks to the 8th of February. I was at first annoyed and disappointed that yet again I have wait, but at least they noticed and worked it out before I was left sitting in the hospital with no way home. On the upside I though I am glad in a way as I would rather be going there feeling a lot more like me than I do at the minute, it’s really hard to make myself understood by strangers when I am having problems getting my own point across to me, without trying others too.

I am so lost this week as to what date it is and what is happening when, I had booked a slot just before Christmas for the final shop, I thought it was for Tuesday next week, I have a little calendar on my desktop and I suddenly noticed that next Tuesday is Christmas day, I actually have the slot booked for Friday, all kind of silly as I could have just bought it all and had it delivered last Tuesday with everything else I bought. I just have no control over my mind at the minute, no ability to even hold onto what day, month or anything else it is, I haven’t even sent the cards to my family, I’m just so confused about all the normal things in life, the day to day ones. I am loosing my grip on them is what my mother would say, and even though they are her words, I have to agree with them as that is how it feels. I am loosing my grip on the realities of simple everyday things. I never seem to know what time it is, despite there being a clock on my desktop, and without my spreadsheet I would get totally lost, but that only keeps me in line with what I do here, and all the things I do on line are taking more and more time, not just a morning but a day, well at least the parts of it that I am awake for.

It is a strange world to live in and a strange place to be not knowing, not understanding and not being able to do today what I did last week or the one before. Concentration, that is the biggest issue, not just when I am trying to write but even in the last couple of evening when Adam has been trying to talk to me I have got lost, not heard what he said or understood it. I cover it and move on because I’m embarrassed, being a lost confused mess when you are alone is one thing but when others are here, totally different. The other day when Jake was here I kept loosing it, I kept trying to keep up with him and kept trying to say the right thing. I know that everyone knows what is wrong with me, but it doesn’t stop me wanting to be who I was, especially to those who knew me when I was me. When it is just Adam and me, well I don’t stutter so much, I joke about my lost words and shut up when I can’t keep going, all those things to others seem so wrong. So I sit there winding myself up and making a bigger mess with each word, getting more and more embarrassed and more and more muddled.

I sometime wonder if the fact that so many people in my position loose the friend they had, not just because they slowly get fed up coming, but also because we push them out as it is easier to exist in a smaller more controlled world. One that means we don’t have to worry what our bodies will do next, what amazing, ridicules and stupid thing it will embarrassed and humiliate us with. I don’t think I did, but I can’t be sure, there is a nagging doubt that says maybe, just maybe I did.

Racing time

Good morning world! It’s Sunday again and for once I am listening to the TV not snoring as Adam is actually asleep in bed not on the settee. There has been no change in my chest, just as clogged up as it has been for the past few days, I have to say that my suspicions about my meds seems to be accurate, I have no chest pain or sore throat as I always remember having in the past so I am at least grateful for that if nothing else, plus I have in the past few days gently moved the time I take my meds in the evening back bit by bit and I do feel better in the mornings. I guess I was right that they are waring off faster than they used too. I remember clearly being able to go 14hrs from one dose to the next but that isn’t happening any longer it is a much tighter window. I will have to phone the ambulance service again on Monday, I hadn’t realised until last night how fast this month was passing me by, I have an appointment at the pain clinic on 20th which I thought was still weeks away then I realised last night that Christmas was days away not weeks. I have a pile of forms to fill in for them as well, so I will have to get on with that rather than just leaving them sitting on my desk with things on top of them. A year ago I would have gone mad at the mess I now put up with on top of my desk, I’m not sure what I thought might happen by ignoring it, but it didn’t go away that is for sure.

I am still in two minds about this pain clinic thing, I have heard so many negative reports as to what they can do to help and I have no idea short of more meds how they think they are going to change things for me. I have no faith in any therapy or relaxation systems, over the years when I had no diagnosis, I tried a lot of things and not one of them helped in the slightest. I am only going because the nurse said one thing that clicked and made me think it was a good idea and that is that most GP’s are reluctant to prescribe strong meds, but if a consultant prescribes they will go ahead with it. I am hoping as well that they may actually know of other meds that may be my GP isn’t so aware of as he doesn’t really deal with MS, fibro and so on that often. I don’t want to be drugged up with meds that make me fuzzy or make me sleep all the time but I do want to be able to live without pain beyond reasonable. It’s a little odd to measure that for someone who doesn’t live with constant pain, but there are levels that are livable, as I am under no illusion that I will ever be totally free of it, the damage done is too vast for that, just better relief is what am really looking for.

Teressa has now changed here wedding date from January to March, I wasn’t that surprised that they had to move it as no Government department moves that fast. Jon is still waiting for the immigration dep to OK his fiance visa, although both of them are still hoping that he will be here for January, it was more that they realised that with people coming here from all round the world, who have to arrange travel and accommodation that it was all getting too close with no guarantees. I already have 2 wedding invitations from them so I expect this will mean a third to follow soon. Luckily when Teressa booked everything she was very upfront about that the date may need to be flexible so none are charging her any more than she has already paid. It may not all be going to the plan that they dreamed would just open out perfectly but it proves I would think to the departments concerned that they are seriously in love and not just trying to get him into the country. From what Teressa has said to me there is even a chance now that he could have a job at Sega UK, completing the circle as it was at Sega US that they met originally. I still haven’t really settled in my mind that she is now living here in the UK again as she has lived abroad for so long it just seemed the natural place for her to be. When ever she phones I have that flash of what on earth is this costing, as she calls on her mobile and then I remember again that she is in London, just a few miles away compared from the thousands that used to be between us. She is hoping to come to Glasgow in January this time with Jon, so that she can introduce him to everyone, it will be a really strange thing for me as I have never in her entire life met any of her boyfriends, nor did I ever meet her first husband. I hope this visit happens when she has it in her mind to be but we will see, I have though totally come to terms with not being at her wedding, as much as I would like to, it is just all too much.