Saturday, 27 September 2014

The fantastic NHS comes up trumps again

You hear so much negativity about our NHS I have written in the past about moaning patients. I know people don't want to be their and its no holiday camp but take your medicine and shut up the queue for your bed is endless. Still I am here to relay today's good news. It started with the Secretary for our MS Nurse calling and saying she had spoken to the nurse and that once clinics were finished she (the nurse) would call us back. This had all started because my own GP had called on here day off on her way to a family do miles away. She had checked in with her office about some of my results from a blood test. Hands free phones are fantastic. The GO called us at home asking us to call the MS Nurse as she wanted clarification on some figures, all above my head and I was asleep and know little of the real juggling these people have done for me today. This infection has not let up for about two weeks the last seven and a bit days I have been bed ridden so not up on all the finer details. But the gist as I understand it is: GP phones here, here phones MS Nurse,MS Nurse phones consultant,MS Nurse and consultant phone my surgery, MS Nurse phones here,we phone surgery and eventually at 7:20 this evening after a twelve hour day a young lady GP rings my door bell. She spends over thirty minutes examining me temperature, blood pressures etc she as last resort dip tests my wee. Bingo I have a urine infection. The NHS is a fantastic institution one to be saved from privatisation one to be cherished and treasured. It is a big slow dinosaur but in my near on sixty years on earth it has done me proud and today it has treated me to five star service. Bravo and thank you.

Friday, 26 September 2014

The Dr.Seuss MS POEM by Morgan(mgcpd)

I love MS it's just so neat 
the way it swept me off my feet 
I love the pain, I love the numb 
and sticking needles in my bum. 

I love the way my world's a blur 
the way I shake , the words I slur. 
I love my chair and walker , too 
I love MS ....I do.. I do... 

I love my lazy sleepy days 
I shake with joy within my haze 
I'm just as happy as can be 
It makes me pee and pee and pee 

I love my legs that will not walk 
my twisted tongue that will not talk 
I love the way my poop does bind 
I do believe I've lost my mind. 

(this was sent to me by my sister and was written by Morgan) 

That's me and thousands of others

Wednesday, 24 September 2014

Airflow Mattress

I am still in bed and Heather and our daughter have put the airflow mattress on because after being in bed for five days and not a lot of change on the horizon we decided I don't want bed sores to add to my dilemma. Trouble is the mattress is very good but sounds like it is going to take off every twenty minutes. I also find it very cold and had an extra cover in the night Heather was very pleased at two am. to get out of her nice warm bed to make me feel warm. We had tea and chocolate chip cookies as well, sort of a midnight feast. Great until I awoke at five in need of gaviscon, normally it lives beside my bed on my night tray but guess who had to get up a second time to retrieve it from the table where it was sitting mocking me.
All in all an eventful night with not a lot of sleep for either of us. I cant get up and am even crossing the landing in the wheelchair rather than my usual meander with the zimmer frame. Heather has just gone in search of sugar puffs for me and then hopefully I can get some sleep.

Tuesday, 23 September 2014

Still no better Constipation now

I have found over the years with my bowels its a situation of feast or famine, not that you would wand to feast on your bowel movement. It just constipation on pooing your self and not a lot in between. I have been on a pretty even keel of late but anyone with Multiple Sclerosis will tell you don't let yourself be lulled into a false sense of well being. MS will soon bite you on the bum the moment you start getting over confident.
I have written in the past about my Constipation and trips to A&E and I once had septicaemia because of it. Recently I have discovered Micro Enema and those couple with regular Movicol sachets which coincidentally is now available in Chocolate flavour. That seems to be taking pooing to extremes chocolate flavour/coloured laxative. It reminds me of the joke at school about rainbow coloured tampons for sunny periods. Once again I digress. Constipation is one of the NHS big problems and millions of people suffer because it is a taboo subject but one that everyone has to deal with. A mate of mine has always said to me "if you don't eat you don't poo, if you don't poo you die" you have to forgive him he is Iranian but he speaks the truth, I was dangerously ill with septicaemia.
Well I have been feeling unwell for a few weeks and to a certain extent I have taken my eye off the situation. For a long time now the Movicol and Enema regime have worked for me every day but a blip if I had to much fried food chip shop chips do me like a kipper and a spanner is thrown into the works for a couple of days. Heather recons it is psychosomatic but tell that to my bowels. I am on Antibiotics for a urine infection and as we all know antibiotics can play havoc with the old tummy. I have had times of not getting to the toilet in time and now or rather earlier I couldn't go. Two enemas and lots of straining there was a five hour gap between enemas but it took that long to produce an eruption. I am now sitting in bed recovering I was so weak Heather had to push me across the landing in the wheelchair. MS has kept me in bed for the last few days, maybe it is the antibiotics working fighting their war wars against my invading antibodies or just that I am a lazy bleeder and feel like laying in bed brewing bed sores. I don't know nor the way I feel do I much care. The reason for this post is to say if you are one of those who suffer bowel problems constipation or diarrhea there is help out there speak to a doctor or pharmacist dont suffer in silence like I did

Saturday, 20 September 2014

Are antibiotics the answer?

The last couple of weeks I have been a little off colour, not my normal self. I know my body and I think I manage my Multiple Sclerosis quite well. It is NEVER going away and I know it's little nuances now, after all  I have had over twenty years of practice. Well I have been a bit low my body has let me into its secrets in the last two weeks I have had four toilet accidents. I never got to the toilet in time. For me this is a really big deal. Trying to clean myself up and legs that don't want to work have to support a body that can't balance. When trying to get out of my trousers and soiled pants is a real mission I mean REALLY BIG MISSION. Showering after is fun. I need to shower but by now I am exhausted BIG TIME exhausted. My legs only just hold me when I wake up on a normal day. I can't walk I shuffle a few yards at best when feeling good and now I feel awful.  I need to stand to clean myself up and my legs are crying out NO WAY. I am feeling very vulnerable, this feeds the weakness making it all even worse. There is no way I can describe how completely useless I was feeling and even when I had showered I needed to dry myself. Even with Heathers help throughout I am exhausted beyond belief and now I an clean and dry I have to go from bathroom to bed.
Heather suggests the wheelchair. No I can do it I am a man 58 years old I am capable of walking the ten feet to bed .  I have to use a zimmer all the time but now I am holding on so tightly it hurts. Halfway across Heather worried she is going to have to scrape me up off the floor cracks a nervous joke. It makes us do two things. One laugh we are both in need of something to take the tension out of the situation and two the futility of all of this. She is exhausted as well. We have been married near on forty years and now she's looking after me like I am a baby. Our children when they needed a nappy change probably weighed say two stone  I go near on fifteen and if I go down I an a dead weight. My body just shuts down in shock and I can't get up off the floor anymore. Luckily I make it the last few steps  and am safely in bed. She has to put me in bed and get my out of bed for that matter. But now I am safe but my body is freezing. I expect it is the shock but I am cold freezing cold. We have blankets to go over the quilt but this needs heavy duty stuff an old candlewick bed spread. Weighs a ton but it tells my body not to worry it is a reassuring weight. I can't move under it but it is enough to remind my broken nervous system it will soon warm me up.
My sleep apnea mask goes on and with the help of some much needed pain relief I must go to sleep.
I do or hould I ay I did?
Its Sunday now and I am still in bed, feeling a bit better but not good Saturday came and went and I am now waiting for Heather to help me get up. She has gone to church my mate Patrick is the vicar and he has the Bishop of Dover her today for his installation as a Canon, Heather just phoned and said she was helping out with the food and would be back soon. I have nothing else to say so am signing out. Oh the antibiotics they must be working I feel better than I did.

Thursday, 18 September 2014

Picnic indoors

After yesterdays escapades I have spent the morning in bed feeling sorry for myself and waiting for the doctor to phone back. Bethesda surgery in Palm Bay do a telephone consultation service where the doctor calls you back. For someone like  me it is a fantastic service and has saved me a lot of anguish getting to and from the surgery. I can remember trying to get a doctors appointment in the 1960's so this service is wonderful. I can remember Pam protecting doctor Edney in Faversham like a  Rottweiler and that  was just for an appointment I am sure she wouldn't approve of te doctor doing something so common as calling a patient back.
Back to today Heather has just gone to get my prescription and before she left we had a picnic indoors. Chicken and salad sandwiches and crisps. Me sat in my wheelchair and her sat at the table. The sunshine is pouring in through the window and a Collared Dove is gently cooing in the garden. If I had been feeling better we had aimed on going to the Nature  Reserve at   Canterbury. Bridge Woods I think it is called but  my MS had other ideas, still cant waste the oppertunity for  a  picnic even  if it  is in my own dinning  room. Our  son has just called in to see us and has taken his mum to collect the prescription.

Wednesday, 17 September 2014

Bad day with Multiple Sclerosis

I am past the stage with my Multiple Sclerosis of good days and bad days. All days are bad and some days are even worse. Today was an even worse day! We had friends coming to visit so the Day kicked off a little brisker than usual and I suffer from Primary progressive Multiple Sclerosis which means it is a steady decline I don't get relapses or times when the MS is aggressive and times where it is OK, mine never lets up but it can get even worse for a short while and today was one of those days.
Great here we are guests just arrive women outside and men inside, we had just got through the pleasantries and were discussing our health when I got an overwhelming urge for the toilet. I am in my wheelchair and by the time I have got to the toilet (too late) and got cleaned up I was exhausted and went back to bed. I went straight to sleep so missed our friends it's been a year since I saw them last and it looks like I won't see them again until next year as they spend our winter months in Spain. I have had a few off these incidents in the last little while and I don't often go and visit people because I never know what the Day will bring. My body is a wreck but it could be worse, at times it is difficult to believe that but days like this just remind me even the bad days are good. Now having slept all day I am wide awake.

Sunday, 14 September 2014

Walking in a wheelchair

Why is it I refer to being pushed in my wheelchair. As going for a walk? Is it my stubborn refusal to accept my disability? You would have thought my decline over the last twenty years would have given the good grace to accept the fact I can no longer walk but no I still refer to it as a walk. I think it must be my gradual slipping back to childhood. Heather cuts my food up for me, I have special knife and forth not with buggs bunny on them but weighted handles and extra large grips. She dresses me and takes me to the toilet I don't have a nappy but she empties my catheter bag. So maybe my walk in the wheelchair is the same as taking a baby for a walk in a pram?
In my previous post I said I need a new disability scooter, we went for a walk with the old one today. See there I go again, my feet did not take a single step yet I say I went for a walk. It was ok but I did feel very self conscious of falling off. I know I could never get myself up if I was to fall and it scares me, I mean really petrified. If I fall indoors I need wholesale assistance to go from horizontal to vertical and the big outdoors is full of unimaginable dangers like curbs and gravel or unsound surfaces. All just waiting for the unwary disabled traveller. It a tough world out there and one I suddenly feel scared in.

New disability scooter needed

I am in a wheelchair all the time now and whilst Heather never complains it is hard on her pushing me around all the time. I know that I have an electric wheelchair indoors  but when we go out it is all on her. I no longer feel safe on my scooter, I have had a couple of falls from it and it has dented my confidence. I know that if I do fall I can no longer get myself up off the floor with out some heavy-duty assistance. With all this in mind we have been looking at proper four wheel scooters. The other reason is ramps. We need to buy some new ramps to get the electric wheelchair into the car but if we replace my old scooter with a four wheel one I am saving over one hundred pounds on ramps alone. That may sound slightly odd reasoning but it has to be considered  in the overall package. Heather has found a scooter online and I know how smooth delivery of my last one was so purchasing a disability scooter from a reputable online retailer shouldn't present a problem. I did it fourteen years ago with no hitches one would hope things would have only got better. My last scooter was almost a thousand pounds cheaper on the internet than the local specialist supplier and it was exactly the same item! No prizes for guessing why I bought my disability scooter online. Time to sleep on it, night folks.

Friday, 12 September 2014

disabled walk in shower

It's nearly one thirty am and I am awake and just checking in on my blog I noticed Google trying to tempt me with adverts from firms selling disabled showers and bathrooms. We had our bathroom converted into a wet room some four years ago. I love it. No more getting stuck in the bath and having to call our son home to help get me out of the bath a carry me to bed. I fave grab rails all round the bathroom. I still call it the bathroom even though it is now a wet room. I have a little stool to sit on as well as the wall mounted shower seat. I have rails round the toilet to aide me getting on and off. Non slip flooring which has got little bobbles that if you do fall can rip at your knee' s if you try and crawl out after a fall. After years of struggling with bath seats and bath lifts the wet room has been fantastic and if you are seeing advertising for disability bathrooms please don't leave it to late have it done when it will save you energy and use that saved energy on stuff you enjoy. 

cant sleep wont sleep

Having been asleep virtually twenty four hours I am now not able to go to sleep. My MS makes me into its slave. Earlier I was freezing cold and needing extra blankets  and now I am laying here with no chance of sleeping and not wanting to keep Heather awake no TV or Radio. I have read, played solitaire, Facebooked and twittered now I am bored, oh I forgot ME Society's forum as well. Please please give me a break. I can't do what I want to do nor it seems do what I don't want to do. I want to get better, I think this is some sort of underlying infection, I had my catheter changed in the week and that sometimes makes me feel odd for a few days but never like this. Still what else would I be doing? I don't exactly set the world alite do I. When I do manage to go downstairs I intend taking the wheelchair round the block to celebrate.

Tuesday, 9 September 2014

Laying in bed waiting for tomorrow

What will tomorrow bring? Will it be the okay? a day of I can cope let's just get on and take what the Day brings. Or will it be oh no this ain't going to work, I can't cope let's avoid fighting what I can't beat I give in you can have today let's try again latter? Well only tomorrow will I know the answers only tomorrow will I know if I can actually get out of bed and negotiate the physical acts of dressing of crossing the landing. Once I cross the landing there will be the silly dance I have to accomplish to turn round and get seated on the stairlift. The dance at the bottom of the stairs getting from sitting to sitting in the wheelchair, the humiliation of not getting my feet onto the foot plate things and having to ask Heather to lift my foot onto its resting place. I won't know this until tomorrow. What I do know is I couldn't do it today and I am certain that tomorrow isn't today, just because I lost the fight today doesn't mean automatic failure tomorrow.
No what it means is after a good night's sleep I will reassess the situation that tomorrow's feelings will belong too tomorrow and just because today was a rite off tomorrow stands on it's own and being on its own I am unable to pre judge. Tomorrow deserves to be judged in fresh daylight, not by what has gone before but by what lays ahead. I will know tomorrow

Bad day

What happened to cause it I have no idea. I got up was in the bathroom shaving and I came over all queer. I decided discretion was the better part of valour and went back to bed. Heather woke me at lunchtime saying the district nurse was coming to change my catheter, I know she did but don't remember much about it. I have been asleep nearly all day and Heather is making me something to eat but the way I am struggling to write this I will sleep some more very soon.

Monday, 8 September 2014

Wonderful day

Margate has been set fair today, the Sun has shone long and hard all day. It would have been a nice day for a trip out somewhere but according to the calendar it was the Day that my catheter was due to be changed. I say due but we all know due and actually turning up and doing it are two completely different things. Even the word promt on my kindle could see where this was heading, either it understands telepathy or the workings of the NHS. I can't be the NHS it tried to put Bus, am I that predictable even my kindle can think what I am writing? Anyhow we did go for a ride at four this afternoon and aim on heading on over to Canterbury nature reserve tomorrow if the nurse doesn't arrive first. If she gets here first I doubt we shall go, even that simple procedure will put me in bed for a couple of hours. AHHH caught the kindle out, it thought months or weeks not hours.
That's me ready for sleep just wait for the painkillers to kick in and land of nod for me. Worry about tomorrow when it gets here. Night folks.

Wednesday, 3 September 2014

Endoscopy day to see seven ships

I am home now after a full day. I had not slept well so when Heather made my morning cuppa I had turned over and ignored it but eventually I did wake up and got showered had some breakfast and thenn we set off to Canterbury Hospital for a 3:30 appointment for another Endoscopy. Of course they were running late so ariving 30 minutes early only exasperated the situation. All was well and eventually we got out and headed homewards, traffic was set to standstill so a 20 minute journey took over an hour. Almost five hours and I was and still am knackered. Heather is a saint she takes all these appointments of mine in her stride and puts up with me when I am tired by all  the extra exertion. The one good thing about the trip was a chance to count the ships and my theory was proved wrong as I could only count seven ships but the reason was visability being poor the day was hot and clear but a sea mist  reduced vision.
an endoscope