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.

TO TRAVEL OR NOT ACCORDING TO THE BUS DRIVER

Well, today is the 13^th, and, according to the female I spoke to two weeks ago, there should be some movement on the adaptations front. Are there any workmen here?  In fact have I been contacted? Er, NO.

Today I was told that I would have to ring Kier [the contractors] myself and when I explained that widening one door would not make me safe, I was told to go back to the original Occupational Therapist and begin the entire process again.  She was one of the able-bodied people that had no idea what being confined to a wheelchair was like, and the initial call was in May, so any takers on me still being confined by them come Xmas? It’s a sure bet, definitely the favourite!

I’ve received a letter stating that the OT will visit me in about three months, so I rang and told them the danger but I’m not expecting any joy, what don’t they understand about the word d-a-n-g-e-r-o-u-s?

How has it made me feel? Totally peed off that’s how I feel. In fact I feel I have started with depression again.

I know that I have said it before but this time louder - I HATE THE WOMEN IN SUPERMARKETS THAT LEAVE THEIR BRAINS AT HOME.  Especially the ones who see an old ‘friend’, [emphasis on the old part] then are completely oblivious to the queue behind me as I sit patiently waiting for them to move.  More often than not a member of staff has to ask them to move and let me through! I’m glad they ask because I’m afraid I get very sarcastic when faced with stupidity, and am quite likely to ask if their eyes have a day off.

Well that was today’s outing, otherwise I am bored out of my tiny little mind. Is this what my life has come to?

Eureka! I have had a day out! First the bus driver wouldn’t let me on, so I missed a tram, the film wasn’t worth all the hassle, and then I was ill and was sick all down the new trousers and the coat at the restaurant! What a great day! It h ad all started fine and as it coincided with Emma's day off she fixed my hair in the morning but then the bus driver [who looked thick] has misread the new guidelines regarding scooters and decided my wheelchair was a Scooter! I had to travel to the tram terminus under my own steam which meant that I just missed 1. I asked the conductor on the tram what that driver had been on about and that is when it became clear that the driver had been confused to say the least. 

After having a stupid driver, the “rom-com” billed film was not funny. It was otally disjointed and would have been better as a mini-series. So another two hours wasted.

Me being ill was, we think, taking my medication with the wine. It was awful, I lost all connection with reality [so what’s new?] luckily I had the good sense to get off the tram when I thought I was going to be sick again [which I wasn’t] and rang Alan and Emma in tears, she had the good sense to check which tram I was on and met me when I arrived back, I went straight to bed and slept until about 2 a.m. I couldn’t sleep after then, on the Thursday I also felt sick when I went to bed, hopefully tonight, which is the Friday I shall be OK. As I said I learn things all the time and this lesson was that my MS medication don’t mix with alcohol.

An email has been sent about the bus fiasco and I had my hair cut short yesterday so alls right with the world. [until I have to try for the toilet or when I go to bed that is]

PROBLEMS WHEN THE SPACE ISN'T BIG ENOUGH FOR THE WHEELCHAIR

Now a week has passed and I have had the visit from the NET (now called NES) team and it seemed to be more helpful than I thought! A Speech Therapist and an Occupational Therapist came and basically the conclusion they arrived at is the bungalow is no longer suitable for me, without adaptations that is.

Yesterday morning just verified the situation. I was coming from the shower backwards as usual and the wheelchair handles caught on the radiator, and now the radiator is hanging by one bracket.  A problem that would be eradicated by moving the entire stud wall about 30 cm.  But of course being disabled and female I know nothing. It has been suggested by the OT that came yesterday, that maybe we may have to move again, I would rather that this place was made more suitable for my needs. It has taken over 5hrs to get an answer at the repairs call centre, but it has naow been reported, but it will not be fixed until 4 days time.

Although I couldn’t stand having somebody always around, when Alan has his free days I am lonely.  Alright put my Counsellor hat on - why do I feel this way? When we were first moving I remember saying that I can take a book to the coffee bar [Morrisons] or even the local pub. Why don’t I do that? Because I would have to leave the door unlocked because I can’t reverse along the entire path. Why do I have to reverse? Because of waiting for the local housing department to pull their finger out or whatever part of their anatomy they are stopping the machinery with. I have thought up a new phrase that I think sums up my situation - Enforced Bureaucratic Loneliness (EBL to us).

I am having trouble sleeping at the moment, once I do go to sleep I do stay asleep but the bladder spasms are stopping me relaxing enough to sleep. I would be lost without my iPod which is on shuffle play so a random sequence of tunes are played each night. My taste ranges from the Beautiful South to the Black Eyed Peas, Celine Dion to Meatloaf, Kirsty McColl to Meatloaf.  You  may have seen a pattern here - Yes I am a Meatloaf fanatic. When I had a car a good friend of mine said I couldn't drive without Meatloaf on very loud! I’ve got news for you Deb - now I can’t sleep without Meatloaf on loud but through earplugs!  No matter what your mood is like there is a Meatloaf track to match, and the Beautiful South just sing about my life.

Today I have been to the Podiatrist (Foot Doctor in normal language - Normal??!!) She has cut my toenails but also managed to cut my toe, so I came back with a bandaged toe and instructions to leave the dressing on for two days and not to get it wet! Seriously don’t get it wet. (Does she live around here? Its not stopped raining for a week, or month or whatever, anyhow its WET weather.)

My MS nurse rang me today whilst at the clinic, to see how I felt the visit went with the NES Team. As I told him I felt listened too for a change and by someone who understood what my problems are. He did say that the team have regular meetings so all visits are discussed. (Have your meetings Liam but don’t tell me. I don’t want reminding that MS is the cause of all this)

Another gripe of mine that I’ll leave you with is the way women (usually elderly or mothers with babies) leave their trolleys at right angles to the shelves leaving me and my wheelchair (which I must name - suggestions please) having no option but to sit and wait for them to move. 

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.