WHY IS HELP SO SLOW???

Today is another day spent unpacking [Yes STILL] as Alan tries make everywhere wheelchair accessible. The bathroom is now accessible WITHOUT the footrests [which has led to my foot becoming trapped I now have a slight graze on my toe and some bruising] I have found the hall stays in more or less 1 piece without the footrests on, that tells you how narrow the hall is.

The Neurological Enablement Team [NET] have just rung me and will ring to make an appointment for her and the MS Nurse to come and evaluate me. Maybe they can do something about my balance etc. I think that Alan will have to change around the Living Room so I am not in the wheelchair all day.

I have tried sitting on the sofa, I managed all right sitting down but when it came to me getting up again it was a different story.  No matter how I tried and with which hand, I couldn’t pull me up! So the lesson learnt from this was I can only be out of the wheelchair either in the bathroom or when Alan is in. You see I do learn a lesson virtually a day.

A letter from NET, they are coming to assess me next Wednesday, I wonder what they will suggest?  Probably nothing useful. Why don’t all these support teams let me wallow instead of being so upbeat about everything all the time?  What they either don’t or don’t want to understand is how much energy it takes to do anything at all, even get out of bed at times.

My mother is 88 today and has spent all lunchtime telling me how ill my cousin is, my cousin who is 67 next month and has had MS for the past 40 or so years.  I really do not want to contemplate that I might only last for another 8 years so SHUT UP MOTHER!  PLEEEASE

Today we have had a storm, and for the first time since we have lived here the dog was trembling.  I had an appointment with the foot specialist that had to be cancelled because of the weather, this was the second appointment because I was at the hospital for the time of the first.

I have spoken to the adaptations department of the housing department and was informed that an assessor to see about the work will be about another fortnight before he is here so I can’t lock the door when no-one is in, which means my insurance is invalid etc. - Great!!!

TANTRUMS, TEARS AND TEETH

Guess what? I fell again yesterday but we didn’t have to call the ambulance!  I was trying to put on my robe after I had been in the shower, and just went backwards, of course my hand was wet and so had no grip on the washbasin.  The other hand was in the sleeve so couldn’t grab anything, anyhow I managed to get up by using one of the grab rails and the bar on the wheelchair. I must admit that fall did upset me more than the others and I did cry. Thinking back the thing that upset me was the potential damage I could have done to myself, then Alan saying that he will have to put my robe on me in future did not help. I felt totally helpless then. 

I have been very tired since and am very achy today.  What I find fascinating is that I never get any bruises, not that I want some but I don’t seem to get any, and all the floors are concrete. [I think it’s the flab cushions me] 

A fingernail has a small crack, it’s good that I am going to have them done tomorrow. My hair. eyes and nails have always been so important to me that I have learnt how to put mascara on left handed, and have the hair straightened and manicure every two weeks. [I can’t do either with the right hand not working properly]

Oh what joy - my complete tooth has just broken off, never felt a thing even a crack etc, well why not, the rest of me is falling to pieces anyway. Luckily I’ve already got an appointment with the dentist on Tuesday [today is Friday]. How does the song go - always look on the bright side of life [difficult when I have so much going wrong]

I will be happier when the alterations are done, I am fed up with having to travel backwards [therefore blind aswell]. I have to leave the living room backwards and then much backwarding and forwarding to be able to approach the bedroom door straight on. The hall is just wide enough for me to touch both sides at the same time so not wide enough to turn the wheelchair round. To answer the door I have to travel backwards with the door to open it. [thank goodness for string, once unlatched and using string the door is easy to pull open, but the security spy hole is useless for me]

It’s now Tuesday, I collected my new reading glasses on Saturday which are a big improvement on the old ones and they are only a year old! 

Been to the dentist today, I have been given 4 appointments to have treatment on my mouth. The first of which is to remove the root of the broken tooth. [that is something to look forward to isn’t it?]

But the dental saga will be in the next update, so bye for now.

Life as it stands...or not in my case

Hello, I’m back!

The break was caused because I didn’t think I needed to anymore, and my eyes haven’t been so clever.  The specs I used to wear to see the laptop screen were not good enough so I have been wearing the new ones but they are now getting useless so I am going to have another eye-test this week I hope.  So, hopefully, thats the eyes sorted.

As I now cannot walk at all, there are to be adaptions done to the bungalow.  You know, life in a wheelchair aint bad if I had more clear space but things like furniture and doors have a tendency to be in my way! I keep experimenting with different routes outdoors and now have a fairly good knowledge of the paths that I can use and which end in steps or the dreaded ‘bike proof’ railings, some I can manage but some don’t have enough path around for me to negotiate [as I found out one day when I had to be ‘rescued’ out of the mud]

Well, the first couple of alterations have been done.  An extra double socket in the kitchen opposite all the others [above the worksurface only] and at a more sensible height that I can reach, and a grab rail in the hall above the radiator so I can use it to haul myself out of the wheelchair to go to the toilet.  I had previously pulled the entire radiator off the wall at least twice, but, as usual, I am female and disabled, so when I mentioned that brick rawlplugs would never hold on the stud partition wall I was totally ignored [now I know why builders only have totally brainless and vain wives]. 

I’ve also been provided with a transfer board to enable me to move from the wheelchair to an ordinary chair.  This was after the suggestion of the last paramedic who picked me up. Twice in as many months I have collided with the floor, the first time getting off the bed [and I had hold of the walking frame] and again when moving to a kitchen chair. Both times we had to ring for an ambulance to lift me up because Alan can’t and I can’t even move to a kneeling position. If ever you want to feel foolish copy me because being sat on the floor and being unable to get up makes anyone feel totally foolish. My legs just seem to give way, my GP says I have low blood pressure and that can make me fall, so I’ve upped my fluid intake and hope that works.

Drinking has been a problem for me, if I tried more than sipping I choked, and only been able to use one hand means I can’t do anything else at the same time, so solved by a drinking straw. Using a straw means that it is like sipping but I can drink larger amounts, I even managed a pint of lager at the pub last week, without a straw may I add!

I acquired a Kindle last Xmas, the only problem is that it has to be connected to this laptop  to charge, so it made me laugh a few weeks ago when, because I knew I was to be a long time at the hospital, both the Kindle and the iPod were on charge at the same time, it was a good job I had the laptop on charge aswell!

Well as this has taken me a week I’ll go now and start the next.

BEING OUT AND ABOUT!

By the way, I forgot to tell you that, although my right hand is still numb and I still cannot use it except as a hook, after Alan fetched me a crochet hook [mine not found since the move] I began crocheting again. I cannot use a really small hook to do work with crochet cotton but can do knitting yarn for about ½ hour. = PROGRESS!

Now I must apologise for the long silence, the laptop keyboard gave up on me, it would have been too expensive to buy a new complete keyboard so I had to wait for Peter to finish transferring everything from this so I could buy it off him. The only hitch is that this is a Mac so there are some ways of doing things I have had to get used to and some different software I have to purchase and learn.

I did feel so much better and more positive until the housing department decided to do the bathroom upgrade a month earlier than they had told me. Wonderful I thought and got really excited but, I should have known better! First came the step, all went well although I haven't yet tried for a month, I just did not feel safe using the old electric wheelchair, and now workmen were here every morning, I say morning because they have finished each day just after lunchtime.

I knew there would be no shower during the process but what they never told me that there would be no washing facilities at all! When I rang to complain I was told as I had no family that would let me use their shower on a daily basis [it was easier to say I had no family than to explain that showers over baths and upstairs couldn't be used by me] I would have to use the kitchen sink. Am I to sit on the draining board as I used to as a child? Apart from the fact we have not yet found curtains or blinds to fit, how will sitting at the kitchen sink on my perching stool [I cannot stand without holding on with both hands] keep any infection at bay?

Worse was to come though, when the floor was levelled and the bathroom that now only contained a toilet was out of bounds until the floor had dried! So no washing facilities and now no toilet either, the floor person told us it would take about 4 hours to dry. [Yes it might only take 4 hours if the heating was left on, but turning the radiator off mister floorer stretches 4 hours to infinity]. When we realised it was off and rectified the problem it did only take 4 hours but from midnight not midday as it would have been if the radiator had been left on.

When the inspector visited I mentioned the washbasin situation to be told that they had to remove the washbasin to lay the floor beneath it but anyone with eyesight could have seen the old one was wall hung and so was about 2.1/2 feet above the floor!

Well that was then and now I have a complete new bathroom but the curtain runners are too stiff for me to pull, it isn't a problem though because the shower has its own corner so only needs ½ of 1 curtain to keep the hand towel and ring dry. What has been and is ongoing is the toilet blocking approximately once a week [that have been with their plungers at least 19 times in the 6 months we have lived here] eventually after 5 months they sent contractors with a drains camera who confirmed what we had been saying all along, that the large tree in the front garden had broken the drain, but they weren't allowed to dig near the tree because it is on housing authority land. No-one has yet turned up to start digging, so watch this space.

What was a problem though, was the workmen's boots, so I went on a 'dirty' protest and refused to clean the floor until the drain was fixed but I had to give in when I realised that I was walking in mud after leaving the shower.

Right, now back to the present and the bathroom latest – the shower drain has started to block again and has, through covering all floor in water, shown the faults on the floor. I am not reporting it today [Friday] because they only work Monday to Friday, the puddles will dry up at some and definitely will by Monday, so I will ring when the puddles are fresh and won't have time to dry.

I went for my final 'cycle' of chemotherapy yesterday so have lots of bruises on my arms where the vampire darts team tried to get blood out of me. Thank goodness I don't have to endure that again but have to remember that if it has not worked the other remedy involves daily infusions for a full week every few weeks, so fingers crossed. I am very tired today because I was up very early the day before yesterday for the arranged appointment and guess what? The ambulance went to the old address AGAIN I wouldn't mind but in the 6 months we have lived here I have had 3 patient transport collections here before they messed up 3 months ago. Logic? There is none. Intelligence? Was lonely and ran away.

I did go in my new wheelchair yesterday so kept disappearing from the ward, in fact I can't be kept in the bungalow now. I have discovered that the paths here are numerous and many have got steps but there are some without. Luckily the paths to the doctors, supermarket, tram-stop and mother's care home are without. But now as I go out virtually every other day and spend the next day recuperating, so I seem to have accepted having MS [although I do get problems].

I think not being able to leave the house for over a year was causing me not to accept my illness, and now I can and do go out when I feel like it, it has helped acceptance because I feel like a person again not just a list of symptoms.