Another day out

I was in the middle of making my lunch yesterday when I suddenly decided to phone the doctor about the “thing”, now singular, the receptionist was actually helpful for once as I said I just wanted to leave a messaged and there was no huffing and puffing just helpful. I had an expectation that the doctor might want to see me, but there was a slight hope that he would just send me another prescription for something else. Once I got over the shock, then as she started insisting I had to come in and see the doctor because it would require a swab test to be done as two rounds of antibiotic failing, meant it needed a more trailered approach. I swallowed and reminded her yet again that I am housebound, I was expecting her to go into her usual insistence that I should be able to get to a doctors appointment, but she sort of stuttered and said she would give the message to the doctor and let him sort it out. I had a distinct feeling that someone had had a quiet word with her.

The doctor didn’t return my call until nearly 5:30, to be honest, I didn’t expect him to call at all by that point so it did catch me a little off guard, just about as much as the fact he was calling not to say he or a nurse would be out to the house, but to say that he is referring me on to the dental hospital, as they are the people who would deal with the “thing”, as he rightly said, there isn’t any ordinary ulcer that survives for 8 plus weeks and two rounds of antibiotic, it is time for the big guns and only they can take the next step, whatever that is. I decided to ask him while I had him on the phone if he could prescribe Dulcoease for me, as despite still having to resort to the Dulcolax the other night, I discovered they had made a huge improvement, everything was of a passable size even if I still don’t feel clear, I am content that I seem to have found a system that works for this second. The bad news is, it isn’t on the list of NHS medications, although it is on the expensive side, it is a must have right now so once again that money I am saving by cutting my cigs, is going to be flying back out of my account on something else.

I have really mixed feelings about heading once more into the hands of a hospital, this time, though I am hopeful that they might just do more than deal with the “thing” with them being dentist and my not being able to get to a dentist for years, they might just sort my teeth out while I am there. I have been to the hospital before and with it being a teaching hospital, you have the work done by a student with a their teacher watching over, the last time I was there was to have a tooth pulled and I felt so sorry for the student, it appears that my teeth are as difficult as the rest of my body as I landed up with two dentists and eventually a dental surgeons working on my mouth as the tooth shattered and left all kinds of bits of root behind. So now I am waiting for the appointment to come through and then all the joys of sorting out the transport, complete with stair-climber, I am going to have to phone the dental hospital as I am not sure if they will had wheelchairs there for patients to use, that will leave me with the problem that I will have to explain to the hospital transport that my chair has to come with me, regardless of what they want or not. The biggest problem is Adam, I have only been to one hospital without him in recent years and that time I was so lucky as I had had the ambulance crew before so they bent the rules and waited the 10 minutes that I was in seeing the doctor and they brought me straight back. I don’t know what will happen this time as no one is allowed in the ambulance other than me, it’s bad enough when I have Adam there to keep me company and to take me in and out for cigarettes while we wait and wait for the return trip, the worst so far was 4 hours waiting with nowhere to go and nothing to do. If I am there alone and stuck in a hospital chair that has to be pushed, well I know it will take even more out of me and it takes long enough to get back to normal anyway. I am so pleased now that I chose to just refer to the oozing lumps in my mouth as the “things”, as only a “thing” could cause so much trouble and upheaval. Right now I am just hoping that the unlikely will happen and between now and the appointment it will fix itself.

I guess that just thinking it all through yesterday evening had more a draining effect on me than I thought. I knew when I went to bed that I felt really tired, I managed a series of those huge yawns where you honestly think your jaw is going to split, yawning isn’t something I normally do that much, but last night they were alive. I know I fell into sleep with both ease and speed. If I do wake up early to go to the loo or something, I never settle totally into a deep sleep again, it is one of those things that I really hate about being disturbed, but I despite waking just after 6, I remember only lying down again and being grateful for the warmth of the bed, the next thing I knew, it was time to get up, which I did still yawning. It’s hard to believe that just thinking things through and yes starting up those old stresses that haven’t seen the light of day for months, can actually leave you shattered. I have done nothing, just talk and think, yet here I am in a great need of another 11 hours sleep, despite just having had the same number already.

Stupid little things can make you remember just why being part of the outside world is just not possible. I couldn’t survive out there any longer, the hustle and bustle of everyday life would destroy me faster than I could possibly imagine. It’s hard to hold onto the facts of my life these days, you forget so quickly what life was really like and settle with such ease into a life of really doing nothing but sleeping, sitting and thinking. If I am being honest, I wouldn’t make it through half a day of normal life, possibly a couple of hours on an exceptionally good day. If I think back 20 years, I can never really remember feeling tired at all, if I slept 5 or 6 hours a night then I had slept well and I never stayed still, there was always so much to do and so much that still needed done. Now I wake, do nothing and sleep, whilst feeling tired for almost every single minute of the hours I am awake and there are a few of them that the word awake actually really apply’s.


Please read my blog from 2 years ago today – 9/10/12 – The hugs are back!

Yesterday afternoon the worst MS hugs that I have ever had started, I felt this incredibly sharp cramp in the left side of my upper spine and that was the beginning. Hugs are basically a spasm that effects the fine muscles between your ribs, for me and many others it usually starts just as…..

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