On the Eve of 2012

Twas the week before Xmas and Mark is in bed poorly again, this time with a chest infection. They take chest infections of tetraplegics very seriously because they don't have the use of abdominal or chest muscles to enable them to cough or blow their nose, so it was a week of antibiotics for Mark and a week in bed again.

He managed to get up on the 23rd for a couple of hours, then again on the 24th, looking a bit better and we managed to get out to the movies, then back to bed for him again a couple hours after we get home. Up for a few hours on Xmas day but back to bed just as xmas dinner was ready to dish up ....... turn xmas dinner down and hope he can get back up in a while to eat. Up again in about 30 mins and we eat, he's back in bed by about 9ish. Boxing day and the next day he's still in bed with pain, up for a few hours on the 28th but not for long  and not looking at all well, even though he was looking forward to friends staying overnight. Not up at all on the 29th apart to go to the bathroom and have a shower in the evening. Yesterday, 30th, he was up long enough to have lunch with friends then back to bed. So that 10 days is a glimpse of what the past month has been like, when you add them up, the days in bed seriously outnumber the days up it seems and it's slowly getting worse.

Looking back over the last year, and to be honest, it seems to have flown, but I guess that's because I for one, have been so busy and haven't stopped working on the house and trying to get it a nice place to live. I think I've achieved that now, it hasn't been easy but when friends come now and see that it's nearly finished and what a transformation we've achieved, I feel quite proud of what I've managed ..... however, it's constantly overshadowed by Mark's slow decline as the year has moved on. We try to keep positive and looking forward to after he has his next operation hoping life will improve for him then. It can't come quickly enough for both of us. Although it's New Year Eve, I can't see that the early part of the New Year is going to be any better for him. It's heartbreaking. We were told it takes 2 years before you really move on with your life after such a trauma but when is that 2 years going to start??  Seems like it won't be until after his next operation whenever that might be. Constantly we feel like life, whatever shape that might take, is on hold, it has to get better soon surely.

We had to go through the process of filling in his benefit forms AGAIN and this time I posted them registered, costing nearly £7!! Our benefits rights officer has written a long letter of complaint about the way we've been treated.... do you think that will have ANY affect at all??? Can't see it myself.

I want to say a great big thanks for everyone's support over the last year, believe me I wouldn't make it through without you ...... so we're wishing you all a very Happy New Year and hope the coming year brings you all everything you wish for x.

How outrageous is this .....

You may or may not remember when Mark was in BRI hospital last we had real problems in that his consultant at Pinderfields was convinced all his pain problems were in his head and he needed psychological counselling. That idea was planted in the head of the consultant at BRI and he asked Mark if he was willing to speak to the psychologist. Although this was frustrating because we had been fighting this with our Pinderfields consultant for some time and that was why he was not willing to refer Mark for a second medical assessment. Anyway Mark agreed to speak to the psychologist and had a long session with her on his own and then a second session with us both there.  She wrote a report and her opinion was that Mark's pain was not in his head and that in her professional opinion he should be seeking a second medical assessment.  That report was sent to his consultant at Pinderfields and following that he agreed to refer Mark to Mr Flint in Birmingham. That has progressed in that Mr Flint is willing to operate but it will be months until that happens.  So far so good. A struggle to get that far but we made it.

A couple of weeks ago Mark gets a call from his local Doctor (remember the psychological report was written in March of this year) because the Doctor had had a letter from Mark's consultant at Pinderfields, a letter that was badly written and confusing but the gist of it was that he was strongly suggesting Mark seek psychological help for his pain management. The Doctor was confused because a copy of the report was in his notes and he wanted to discuss with Mark how his situation may have changed since the report and how he wanted to proceed from here. To say Mark was confused was an understatement. He calmly went through the story with the Doctor again and between them they agreed to ignore the letter. I was outraged. How dare that b****y consultant start interfering again with the same argument that had already been discarded by the very expert he had insisted Mark speak to. What was the point of the damned report if he wasn't going to take any notice of it. It seems that although he wanted the psychology assessment he had no intention of taking any notice of it because it didn't back up what he wanted to hear. I was spitting tacks and said I thought Mark should email him and ask him what right he had to start demanding his local Doctor recommend him for more assessments. He hasn't even seen Mark since he came out of hospital, what an unprofessional way to deal with a patient. I have absolutely no faith in this guy and I think we should report his behaviour and insist on being moved to another consultant. Unfortunately I don't think after all the battles we've fought I have the energy to do anything about it right now.

To top that lot off we've just found out that the paperwork we handed in and got a receipt for to get Marks benefits changed can't be found anywhere in the system and we have to start again ..... aaaaarrrrrrgggggghhhhh!!!!!!