NO MORE RUNS!!!

I’m not cured yet, the doctor thought it may be the antidepressants and prescribed some half dosage ones to see if that works, if not I will be put onto the urgent referral list and should hear within two weeks.  So I’ve got at least another 3 weeks of this if the tablet change doesn’t work. [makes 10 weeks in total]

A bit of progress though.  One of the district nurses has got me a raised toilet seat that actually fits the toilet, it is a six inch deep one so my feet do dangle a bit but I don’t have to push or pull myself up.  A lot better as I’m on the toilet so many times at the moment!

At last after 9 weeks I’m cured! Well I daren’t stop taking the anti-diarrhea but the GP did say to carry on with them for 2 weeks which will be next week. So I need now other antidepressants, but I am scared that they will have the same side effects.

The bowels maybe cured but I feel dreadful, I cannot shuffle now to get comfortable in the wheelchair.  I am ringing wheelchair services tomorrow wanting to know how much longer I have to wait, think I’ll lay it on thick and see if that works. The nurse is doing a urine test on Thursday to see if an infection is causing me to feel in.

GOOD INTENTIONS

Now the interior work has been done, the only thing I am waiting for is the new, and hopefully more comfortable, wheelchair. I decided to take myself out, but the only problem was that Alan has to put my footwear on for me and I don’t like going out when he’s in.  So, to solve the problem I bought a foot bag, where I just pull it on my legs, also the fleece lining is detachable so I can also use it if we ever get warmer weather.  I don’t even have to wear shoes or boots so I’m not dependent on Alan that makes me feel better.

Of course, whenever I am determined to start going out, the weather changes!  So blame me for the snow!  Also I’ve had an infection for the past couple of weeks which had kept me in.  As is par for course the wheelchair stopped working this morning, just when I needed to use the toilet every half an hour.

The infection isn’t an infection, the GP doesn’t know what it is, so Tuesday I am having a blood test.  [more needles, what joy] If the doctor cannot cure me I will be referred to the hospital after 6 weeks, which will mean more tests.

I managed to have a fall when Alan was out due to being ill and which meant laying twisted on the bathroom floor for over an hour until Alan arrived and rang for an ambulance and so the paramedics picked me up.  This worried me so much that I have arranged for an alarm system to be installed, I will wear a pendant that when pressed will alert them and they will pick me up.  I don’t intend falling again but I said that the last 3 times.

FEELINGS TO DATE

What happened with my mother this Xmas?  Well, another piece of spine crumbled [she has osteoporiasis] and so she could not go anywhere.  I went to see her Xmas day morning but she had to spend all day at the care home. The  doctor had prescribed pain relieving patches that didn’t seem to work at first, but were working by mid January and she began walking again using the frame.

I was eventually persuaded by the District Nurse to tell the doctor how I was feeling.  This resulted in me been prescribed anti-depressants and I feel so much better now after a month.  I have realised that not only had I not taken on board my illness [or my penance as it should be better known], but also all the fiasco of moving had taken it’s toll.  

Of course, looking back my attitude to everything was ‘whatever’ and I had no appetite.  Alan was upset because I was leaving more than I was eating, and he decided it was his cooking, I was more content with a bag of crisps and some chocolate.  Now I eat most of my meal and just have chocolate for dessert.

I also am more decisive and assertive, knowing what I want done, and when. All the boxes and bags have at last been emptied now that my head is clearer, and I can sort all the bookshelves out now there is space!

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.

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.

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.

WHY A FEW MILES TOOK A FEW HOURS TO TRAVERSE

We had about two weeks of clear weather when everything arrived [we now have a cooker] and we managed to get to the doctors to do the new patient bit. Of course I needed some medication, so the doctor trip was needed as soon as possible, which was the first day they were open after the Christmas/New Year break and therefore we hit the sales traffic, a taxi there was under £5 and back over £7, obviously someone had moved the bungalow whilst we were out!

It seems almost spring-like now, until you go outside that is. It feels like it has been below freezing this week and I would say it definitely was a minus number yesterday and today.

I went to see the vampire darts team for the penultimate time a couple of weeks back so only one more time to be bruised [so I hope] and that was a pure farce. I didn't feel well so expected to be sent home without treatment or having to stay in hospital.

By 11.30 the ambulance transport had not arrived so I rang the day-ward that I attend to let them know, they rang me back to inform me that it had gone to the old address! That is despite coming to this address the time before! It confirms what I've always thought, that the patient transport department is run by minus levels of IQ.

The urine tests showed no infection but my consultant still had to agree to my treatment causing even more delay. Then it took over half an hour and many attempts to insert the cannula needle.

Of course, the delays meant everything was behind times so I was too late for the normal patient transport home. They got me a taxi instead, the driver of which thought that he could drive up the footpath to the bungalow but I had only directed him to the drop kerb to make wheelchair access easier! Needless to say he was of sun-tanned skin heritage.

The next day we went to the doctors to get antibiotics to treat the urine infection [or so I thought]. I did have an infection but, as it turned out, not a urine based one. The entry point of the catheter [my second belly-button as I call it] had become infected and therefore was weeping onto my underwear - nice!
So after a two week course of antibiotics plus Canestan spraying twice a day for the next month [a spray being easier to use than cream with only one working hand], I am nearly back to normal, I still have bladder spasms but have learnt to spray the connectors on the leg bag and the night bag with antiseptic spray before connection, and empty my leg bag before I think I need to. Now the spasms aren't as uncomfortable.

The week after the fiasco I was once again at the hospital, a different one this time to receive training in using the electric wheelchair that was earmarked for me. Although I have been using an old second-hand one this new one is 100 times better, and more controllable. It even has a gadget for climbing kerbs and steps. I can't wait for it to arrive which should be any-time now!

Speaking of the new chair reminds me - the council is upgrading the bathroom and removing the small step at the front door. None of this will happen until the end of March, I can live with the stupid bathroom layout and constantly blocking toilet but we can't get back in over the step when we venture out with either wheelchair.
As mother had another fall a while back and this time when they let her out is definitely going into a care home, I will be able to go visit her as the home we want her in [and she has finally realised why] is only around the corner from here.

Will let you know what is happening as soon as I know, and as I feel livelier it won't be as long a wait I hope.

MOVING INTO A NEW RESDENCE

Well I'm back, the problem hasn't been with internet access as I thought it would but with the laptop charger dying. The best part was that it died quietly so I had no idea until the message flashed up that I had no battery power left. As the lappy had arrived via Emma's partner, I left it to him to get a replacement charger. As it turned out it had to come from Germany so took about 3 weeks.
That wasn't the only bad news that dogged us from Day One. My Debit Card details were cloned and the fraudsters had been using the card to buy a range of products all over Europe, and so I was unable to do anything, even obtain cash, as my card was stopped. So after a month I eventually was taken to the bank by wheelchair to prove that I am me, and without using a mirror! Having a driving licence, even though not being allowed to drive, does have its uses after all.
So, I had a month without being able to make online purchases [we desperately needed curtains etc.] and a further two weeks having no means to able to access anything online.
Right, so I will start at beginning and tell you a moving story of moving.
We were told by the woman who came to assess us for priority that we would only be offered a ground floor flat and that would take until December. So to be offered a property [which the occupational therapist had approved] at the beginning of October came as a bit of a shock. We arranged to do a viewing the next day, and did it rain! The officer who was to accompany us at the viewing was running late so we were left in the rain for 10 minutes. We liked the kitchen which was brand new [exactly the same fittings that I had chosen], the bathroom was a wet room, and the garden was the ideal size for the dog. We were asked to give our response by 10a.m on the following Tuesday, we spent all weekend wavering and decided to ring on the Monday and request a second viewing. This was done with the proviso that if the answer was affirmative they needed to know on the Tuesday so the upshot was that we made an appointment to sign and did the second viewing alone straight afterwards.
At the signing we had the bombshell of being told that we would only have one week in which to move before we lost housing benefit. We decided that paying for one week at the full rent to give us more time was worth it and so we did. We arranged for the move by hiring a van to be on Thursday the 14th October. Luckily my son was off work that week and so him and his step-children had to pack most of the stuff for us. [I wasn't capable and Alan was doing his headless chicken impersonation] Every evening we discussed how we wanted the interior to look, making plans for the furniture etc.
I wanted to have the same provider of television, phone and broadband in the new residence, so arranged to have this installed the day after the move. When the engineer arrived he informed me that he could not do the satellite installation because, being a bungalow on a hillside, the surrounding buildings were too high, as were the trees. So we were left with no alternative but to find a service that was not satellite based, and the only one we found was the main telecommunications provider in the country which provides all three through the telephone line, and we have subsequently found to be very expensive!
We moved in with Alan being here doing all the directing and me staying at the house with the dog to arrive later. As it turned out Alan was sat in the cold because we didn't know how to turn the heating on, although a plumber did come out immediately the next day. The heating and hot water is through the district heating system which, it transpired, needed to be turned on at the mains, and we have discovered is either on or off, which means we either melt or freeze. New thermostatic valves are to be fitted in about February [and they will be on the sides of the radiators not underneath as they are now!] but I have heard intentions regarding the council work before and know that a 3 month planned waiting time can be 7 or 8 months because their pace of work.
Then there is the bathroom; it has been blocked since day one. When I say all, first it was the toilet that would fill to the top when flushed and slowly go down in its own time. We have got a better fix today, two nights ago the washbasin would not drain and last week Alan had to clear out the shower drain to stop it smelling and the water spreading into the hall every time it was used. Today's plumber [the fifth in as many weeks!] has investigated further because of the total blockage and cleared the drain outside so all seems OK for now.
We were to have all the bungalow painted white [anything to cover up the artexed salmon pink walls] and Alan's cousin Ken was to do it. We've since discovered that Ken is a bit of an 'old woman' and can only work 1 day a week for various reasons so its a room or area a week apart from the hall that had 6 brown doors and so they have taken a few weeks. Now we are ready to have the laminate floor fitted and buy all the new furniture we want, but it seems that we are now too near Xmas.
The snow has arrived and so stopped all deliveries for the past few days and future undetermined days. It is only about 2 feet deep so I don't see what the problem is, and the dog disappears whenever she goes out!

ON THE MOVE!!!!!

YEEESSS!
We have been packing! Why? We have a bungalow! Probably moving on the 13th or 14th October, it is ideal apart from the broken fences and artexing everywhere, well the hall living room and bedroom. Which in reality only leaves the kitchen and bathroom which have both been renovated recently, and so are brand new. Also the bathroom is a wet room so no bath problems and more space
Fences are Alan's speciality and do need to be done first for the dog, the garden is accessed by a door [which we call the back door] in the living room and so we are putting a solid lockable gate in the back fence which will also be peep-proof both to stop the dog barking at anyone walking past and stop anyone peeping into the garden with a view to breaking in.
We have decided to just paint the artexing white, so we've no problems on that front [apart from getting Alan to ring his cousin], and to use the curtains that are already in place [not our taste but they will do for a few weeks].
The van is booked now for the 14th so a lot of work needs to be done this weekend. I have spoken to my broadband and tv supplier [Sky] and it seems I may be offline for between 2 and 4 weeks. I will post another update when I am back.

DESPAIR AND HOPE - within a few days

It seems ages since I last updated this, in fact it has been ages. I apologise to everyone because I've not done any updates for a while, I just been obsessed with getting a bungalow. I can't really think of MS implications, I have just managed to build an intense dislike for this house, and my situation.
I feel totally abandoned by everyone who has any power over the situation. It seems to me that they have not taken into account the fact that I have not been able to even get into the garden area for over one year. How would they like being a prisoner for that length of time? They seem to think that I am applying to move because I feel like it not through necessity even though I have got medical priority. I am sure they think that if they leave me long enough I will be grateful for a flat.
It is not just the access to the house that causes problems, since the modernisation I am finding it increasingly difficult to have shower. The powers that be decided that I MUST have a bath fitted and the only one that would fit in the space was a lot shorter and deeper, I have tried a bath twice and the second time got well and truly stuck, my legs just aren't strong enough to push me up that distance and my non-functioning right arm doesn't help. The equipment people provided me with a board that fits across the bath to enable me to have a shower, but when I sit on the board my feet dangle, and as my right leg won't lift without manual help, and so lifting my legs into the bath is very difficult and, I feel, dangerous considering my lack of balance. So I am reduced to re-enacting the days when bathrooms were not the norm, using a face-cloth on the bod, but my hair is another problem, I have to brave the battle of the bath to do that. Considering the fact that I used to be able to rise and have a shower and be in the car within 30 mins when I was working and on the morning shift, which meant having to be at work 5.30 am. So you can imagine the hardship I feel with the present situation.
Well it is Wednesday again, and there is only one suitable bungalow on the list, albeit 12 miles from here. It is 7 miles out of the city which would mean my daughter will be about 14 miles away from me, which will be no problem. There is, however, a train station about 2 miles further out of the city, which only takes 12 mins to the city centre, and it has two bedrooms, a walk in shower [what we would call a wet room] and a decent sized garden [we think] even if the décor isn't up to much being the ever hopeful beings that we are, we will register an interest.
Reading about the process at their end yesterday I noticed that they say the process generally takes 1 week from the closing date. Working on that basis the only one we are likely to hear about this week is one that has only one bedroom and a very narrow garden for the dog but we still will have an option to turn it down.

WHEELY, WHEELY FUN

This sorry saga just keeps on getting better. The woman came yesterday to do the assessment for having mobility priority which she awarded but not without imparting the information that we are not likely to be given a bungalow, but would stand more chance of a flat. The reason for no bungalow? I'm too young!
You can stop laughing now, Alan may be able to qualify us as he is 60 in November, also yesterday I was told that the wheelchair would be November/December. That is a long time to wait, it will be nearly two years then since I have been able to leave the house without a patient ambulance and attendants.
So, to sum up, I have got medical priority which is not worth the paper it is printed on because under 60 is too young and the letter states I must also consider flats [which would mean no dog [not an option]], the only option in this situation is mutual exchange but you have to register separately for that, a form is allegedly on the way that will need filling in and returning.
The form arrived and is not helpful, it states that an adapted house [which this is classed as because of a few handrails] cannot be exchanged and if it could, it takes 6-8 weeks to be listed!
You know, despite being told by all the MS professionals that I will not be short of helpers both physically and whatever I need, it would seem that any way they try to help the associated departments don't want to know, never mind make a special effort. I feel surrounded by brick walls that no-one, it seems, can be bothered to help me take down. Maybe it is my fault because I don't complain enough but that is the way I am, the glass is always half full.
I phoned the physiotherapist to tell her about the wheelchair and she rang me back to say they have agreed to loan me one until mine is ready. That was very nice of them but it is an only transit chair that needs someone to push it all the time, and so being non-electric Alan can't take me anywhere. I went out last Friday night using an adapted for wheelchair taxi there and back, with my friend meeting me at the restaurant to take the pushing over when I arrived and Alan meeting the taxi when I got home. All went well apart from my heel kept getting stuck behind the footplate, and the journey to the meal was all down hill, the driver had positioned me facing backwards instead of sideways, every time he braked the chair tipped backwards. So by the time we got to the town centre I was doing a good a brilliant wheelie movement and my right shoe was on the floor. Coming home the driver was obviously more experienced and placed the wheelchair with its back to the door, so no wheelies on the way home, but I still managed to lose my right shoe! [Fun & Games, Fun & Games]
The meal itself was wonderful as usual, although the waiter was rather taken aback when I ordered the fish without any pasta. I still could only eat two-thirds of it, after all I needed to have some room for the chocolate cheesecake!
Back in the real world, we have put bids in for three bungalows but I have noticed that the details on website do now state that preference will be given to people with mobility priority, which was not on any previous properties. The only problem with that is they are in areas we don't want to live in, but they do have an age restriction of 40+. So hope springs eternal.

WHERE AM I?

Today I feel really fed up and neglected, neglected regarding both moving and about my wheelchair. Do I not complain enough? Or am I truly powerless?
Tomorrow I will probably be ringing the GP surgery to see if I can hurry things along.
All that was few days ago, I never did ring the surgery to see about the wheelchair, so I suppose I'll not be going out next week. The arrangement was that my daughter would take me on my twice yearly social outing with her godmother, if my wheelchair had not arrived Emma would borrow my mother's but she has lost it! Don't ask how someone can lose a wheelchair unless you can provide the answer. Everyday at least once she rings the social worker and asks if she can find it for her but she doesn't even know the last time she used it! Every time we ask we get a different answer which is ideal for someone who has been told by the hospital to use the wheelchair whenever she leaves the flat! At least she goes out, to two luncheon clubs a week at the moment.

I went to my last monthly chemo last week. It all went well and this tme I am left with only one bruise. Not bad for someone whose veins like to hide. I started having side effects last time which obviously didn't go away this tme. My hair has gone really fne and is falling out to an extent, the bath is just full of hair from both the shower and what is already loose.

It's been physio day today and, as is natural, I couldn't stop giggling when the right leg went on strike as usual, it looks as if I am not trying to lift it when it only manages less than one inch off the floor whereas the left leg lifts as if it is doing a try out for a can-can line up. Now doesn't a one legged can-can dancing sound good. The physio says it is all my right side muscles that are wasting away, or have wasted.

Regarding the bungalow, the woman is coming tomorrow to do the assessment, even though all the health workers I have seen believe an assessment to be totally unnecessary. At least I should get my mobility priority but if there are different levels of mobility we don't know as yet. We shall no doubt find out tomorrow.

Also today I have received a letter summoning me to a 'Back to Work' interview. I rang them to explain that I can't leave the house and so they will contact me in about six weeks time. Why? Because the Government wants to get as many people off benefit as possible. I agree with them, I know, and know of, too many scroungers, and I would love to work, but with only one hand working and being in a wheelchair even a checkout job in a supermarket would be too much of a challenge. Alan & I were discussing it this afternoon and concluded that I an just too clumsy and would end up owing whichever company more money for breakages than I could earn.
Even better is the fact that I have received both a letter and a telephone call from the same department telling me that I am entitled to more disability money because of the severity of my MS! So basically they are giving me more money because I can't work but want me to work so I don't claim benefits. Confused? I am!
So wish me luck for tomorrow and I'll let you all know what happens.

ONE WEEK AS YOYO {UP AND DOWN, UP AND DOWN {yawn, yawn}]

Hello friends! It is day 3 of the steroids so I decided I was maybe fit enough to go out for a drink. I did and I discovered they hadn't had as much effect as last time. I have only slept for about 4 hours over the past two nights in total so planned to not have a shower this morning to give me time and energy to apply some make-up. Best laid plans etc.!!!

The 20 minutes I saved myself was wasted trying to fit the new type of 'discreet' mini urine collection bag I was trying that wouldn't be so obtrusive and therefore allow skirt wearing again. It didn't work like [what did I expect?] the Velcro fastening bands were obviously designed to be used by people with two working hands so the 20mins saved was used on trying to thread the holding bands onto the bag and trying to get the Velcro to grip the band together without also gripping my skin! In the end I used the new bag but put on my leggings for speed and convenience.

This made me half on hour later than I had arranged to meet Alan, so I was trying to answer his frantic call whilst finishing getting ready. Fun.

I ended up meeting him late wearing no make-up and feeling totally worn out. I had been looking forward so much to this outing and having the opportunity to dress up, so I wasn't very happy with the result. I enjoyed the lager and the company but I had not realised that the discreet bag was about 4 times smaller than my usual bag and therefore needed emptying more often. Seeing a lump on my thigh getting larger every second was disconcerting to say the least, I spent most of the time trying to cover my leg with my coat and reaching crawling speed to the toilet to empty the bag, which was difficult as I had to try and balance whilst doing the emptying.

So it was an enlightening outing although not relaxing and has given me a few pointers for the next time I venture forth. Wearing leggings was a good idea in the end as they are a dark denim colour and so emptying mishaps did not show too much! But I learnt some new coping strategies like not even trying to do anything intricate or delicate with my right hand, it only causes accidents no matter what I am trying to do. I have learnt previously that for the sake of saving feet I must not try handling a sharp pointed knife in the wrong hand, a puncture hole through my toe is not funny or healthy.

When I was given the last round of steroids I had been warned about the non-sleeping effect so that didn't come as a shock, but discovering that I am only allowed the course every six months was disheartening. Well feeling fit for 1 week every 6 months was better than nothing wasn't it? But when this time I only seemed to have 1 day of relief instead of 5 I was very discouraged. I felt so drained whilst we were out that when I saw a customer using a supa dupa powered wheelchair I fixated on it, and knowing that my mobility scooter is too heavy with my present muscle weakness and slow reactions I realised that I too would probably be permanently in a chair like that in a years time. Therefore feeling really under the weather combined with the steroid failure has led to a deepish depression. In fact the none sleeping last night was time spent crying and searching the web pricing up power chairs.

So now I've finished this course and am hoping to be able to get some sleep. I think the moral of the story is learning to pace myself better e.g. getting dressed up OR go out NOT both.

Today has been a mixed day, either I can keep my balance but after a couple of yards the muscles feel so weak that I feel like collapsing where I stand; and the next hour it can be difficult to stand at all, I feel myself falling forward and obviously spilling my drink, plate, whatever and can do nothing about it. I have done a lot of cursing this morning I've called myself swear words I don;t even know.

I've just been to the toilet and got involved in a weird roundabout situation with the door which decided to open as I grabbed it [logical] but I was grabbing it to stop myself falling over, now I am sat safely ensconced on the sofa it is funny but was frightening at the time.

So I think it s about time I found a distraction or something else to obsess about – how about family history? I heard that can become quite absorbing and do you anyone else who dreams about it? I think the dreams are due to my bedtime reading being genealogy magazines. - as I said obsessed!!

The next outpourings from my melted brain will be after I have had a good sleep, if possible. AND WILL SOMEONE PLEASE LET ME KNOW THIS IS REACHING PEOPLE. My personal therapist does realise I need feedback and is givng it me when able - For that I love her - I am so glad we met at that Barbecue.