NEW YEAR GREETINGS

Well a new year and new hopefulness.  I have a wider living room door which was done a week before Xmas and the cupboard had to be reduced, it is now half the size and needed to be emptied which has blocked the printer, so apart from the few that Alan wrote for me, no-one received a Christmas card.

As a consequence of all the work the rail in bathroom was moved, and after thirty minutes being sat I figured that I could use the wheelchair to get up. As I have no power in my legs and I have to push myself up by hand, and used the toilet seat and the rail, now I use the toilet seat and the arm of the wheelchair.

I have finally sussed the bed.  Apart from having the head and foot raised so I don’t have to be flat i’ve found that if I lower the entire bed I can get in it better, and to get out raise the bed so I can transfer to the wheelchair with minimum leg movement.

So a Happy New Year to all

DEATH AND LIFE

Sorry for not writing but I’m using not being well as my excuse. I’ve had infections that I left for too long, they had to be attacked with strong anti-biotics, creams and pessaries.  The Nurse is lumbered with dressings twice a week again.

A maternal cousin, who was only eight years older than me and also had MS, has died, which made me feel great! We went to his funeral which was in a village near here, Harthill, my mother’s home village, as a matter of fact. 

Yes, my mother also went, because she can get into a car my cousin took her but because I need to be in my motorised wheelchair I couldn’t get in a car and so had to have a special taxi, therefore usually a foreign driver who wouldn’t know how to get to Harthill! Problem number one.  

It’s a good job I know the way. Problem number two, that was when I was driving [about 15 years ago], but a nosey on Google Earth soon showed me any changes. So we were all set.

So we thought, but problem number three. Because it was a wheelchair taxi I was having to travel backwards. This left us in a situation of me having to tell Alan, who didn’t know the way either, and him having to tell the driver where to turn etc. Another good point for Google Earth.

All went as expected apart from a renewed interest in my rellies. [as if I needed that prompt!] I was annoyed by everyone thinking my mother was so marvelous, but as the only surviving member of that generation I suppose that was to be expected.

Then we had to come back, not easy with no post-code and the girl being stupid! Another foreign driver who this time didn’t know where Halfway was! This time Alan knew the way and it is a straight run anyway. We were meeting my daughter in the local pub so we were going straight there - that created another problem but the pub is on the same road that he was driving on so no problem after all.

Anyway that was that.

And guess what? I got another two infections - I HATE ANTI-BIOTICS.

LIFE AS A ZOMBIE

I’ve decided I must be a Zombie, I walk, talk and act like them.  They walk as if sleepwalking, which is better than I can do. The new medication is to blame for my symptoms, instead of taking two tablets of one medication which causes dry mouth I now take seven tablets of three medications that cause dry mouth! Fun.

The OT has been and left me very depressed.  The Council aren’t going to do any extra work, leaving me in the same situation with regard to the hall and my feet etc.  I suppose that even though I am on the urgent list it will be another 16 week wait for any work to start.

I am sure the extra stress created by the situation and the OT makes me worse, her view was that my carer should do everything for me, taking away the little bit of independence I do have!  When independence was mentioned, her response was a shrug of the shoulders, so the message I got was that Alan should be with me 24 7, I would soon be needing mental health care if he was, I need at least some independence, in fact I enjoy some time alone.

Although I’m waiting for work to be done, delivery of a new front door [identical to the one in situ] has been tried for the second time!  Apparently, so we were told, it was ordered three years ago, we’ve not been here two years yet and it was empty for about one year!   Does that mean the ordered work will take three years? Answers on a postcard please to ...........

I’ve worked out that I have spent 5 months unable, to lock the door! Whenever I speak to anyone I am told that due to holidays etc it will be at least 2 weeks, it’s a good job the dog’s bark sounds as though she is bigger than she actually is.

I’ve not been feeling too good lately, I can only stay awake for about half an hour, and I seem to need more help to do anything.  Due in part to the medication and in part to MS, I think. Also alcohol is banned completely, which is no great problem because they make me feel sick anyway but having no alcohol means that I have more carbonated drinks which then leads to dehydration and in turn to a blocked catheter and associated problems.  One day I will be sorted!

I’ve had another OT visit when I was informed that nothing could be done about the narrowness of the hall except move!  After I refused moving AGAIN I was virtually told to put up and shut up, so I have.  

The NES team visited and were completely different in their approach as usual.  I am now the possessor of an electric bed that alters the height and moves to various positions, all at the push of buttons.  The only problem is I can’t keep hold of the control and I can’t get out of bed once the various parts are up or down.  So me in the bed and the control on the floor isn’t a good combination! Of course I only have double-sized sheets so, although fitted, they needed to be tucked underneath well.

The bedding has arrived, including a single duvet, so now I should be more comfortable.  I had, until now, used the king-sized duvet, not good!

So sleep should be better from now on, I will let you know.

RADIATORS AND ME

Never mind Britney Spears doing it again - OOPS! I DID IT AGAIN - pulled the radiator off the wall again! Well what do you expect with the hall being so narrow, I suppose when I ring on Monday the call centre will tell me it was only put back two weeks ago, so DO SOMETHING ABOUT IT. Who will get peed off first? Probably me because I am already peed off as I the hate time wasters that they are.

Well I reported the repair, the call centre did mention that a repair had been done two weeks ago but nothing else was said, so they are coming Wednesday morning. AGAIN

The Speech Therapist has been this afternoon [Tuesday] but didn’t tell me anything new.  My main problem at the moment is the hall, could have broken my ankle if I’d not stopped just now.

The Physiotherapist [Rachel] and different Occupational Therapist [Helen OT] have been this afternoon [Wednesday] and gave me the most hope yet.  Instead of asking what I found awkward I had to go through every door and the Rachel commented that none of the doors were wheelchair size and the bedroom door being at a right angle to the living room door was not right.  Whilst Rachel was talking to me in the bedroom Helen made a phone call and told the Social Services that the work I needed was URGENT as at the moment it was DANGEROUS for me!  Remember Danger=Urgent!

Not only the work needed was noted but it was mentioned that I may be better with a hospital type bed, you know the sort that go up and down and even sit you up.  My feet would benefit from being raised as I am always being told that I should have my feet higher than my heart, difficult when I’m so uncomfortable laid down!

Having a bed like that sounds tempting but they are only single size so Alan would have to sleep on the sofa which he is willing to do, and I would have to buy all new bedding which would be worth it.  I’ve got to think about it over the next few weeks, but I think I’ve already decided to have one but I’m not seeing Rachel again for two weeks and how long will it take to get the bed organised?  After all it took four months for the wheelchair.

Talking of Busta [name for the wheelchair ‘cos I just bust my way through anywhere] Rachel suggested that it is adapted for the control panel to swing away so I can get nearer to the table etc.  Makes sense to me!

I felt a lot more positive after they had been maybe something will be done before the world ends!  They were from the Neurological Enablement Service [NES] who understand about brain workings [or not in my case].  I have received a letter [written Thursday] confirming I am now regarded as urgent and will get assessed by their OT within six weeks.  Bit of difference to the nine months stated previously.  In fact six weeks is the school holidays and nine months a full pregnancy, so looking at those comparisons the former is pretty quick.