Tuesday, 29 November 2016

Carers make such a difference

Heather is my wife and my carer, she does everything for me. I cannot get out of bed or dressed without her and today she had a day in bed. I was in bed until twelve when with super human strength she got me dressed and sent me downstairs. She made me a coffee and a bowl of porridge and took herself back to bed. I sat and watched snooker and our son in law came in tonight with a curry and made drinks washed up etc. Then other daughter popped in with milk and bread. Heather has just got me into bed and is back in her own bed now. I wrote about this not for sympathy but to hi lite the work that family carers do day in day out for love, yes she gets carers allowance which if worked out hourly would be pennies. She does it for love as do millions of others. Just think what a mess the care system would be in if families didn't shoulder the work load. I for one would be in a mess. God bless all the carers.

Sunday, 27 November 2016

MS and me

I was diagnosed over twenty years ago, thinking about it the time has flown by. Just because I had Multiple Sclerosis  the world didn't change but I had to adapt to the changes in me. Early on it was balance so I had to give up working as a roof tiler. A very good mate had to carry me off of a roof in Cliftonville after I lost all movement in my legs. I remember him sitting me on the pavement and saying to me maybe now you will get something done about it, funny how those around you know there is something wrong but wont mention it. After I went and was eventually diagnosed with PPMS (primary progresive multiple sclerosis) several of my friends said they  knew I had something wrong and one even thought I was permanently drunk because my walking and balance was so bad. I have had to give in to my body as the changes became apparent. I can remember having to pull into a lay-by  just a few miles from home and sleep when I was hit by fatigue, that was the first time I discovered the joy of real fatigue I couldn't have gone on driving and had to admit my days behind the wheel were over.
First I was able to continue with using one walking stick and then two. I progressed to crutches then onto a zimmer frame I also had a mobility scooter as well so I could keep up with grandchildren and was able to go for walks with the family. Then I had to give up the zimmer and use a wheelchair in doors. I now have an electric wheelchair to get me around a through floor lift and a hospital bed amongst other things. Sometimes I think it is these adaptions that define me rather than the physical being. But these things have come into our lives to make living easier, they are just aides to help me live a full and enjoyable life, to participate in day to day stuff. They enable Heather to struggle less I think my MS has more effect on her than me because she is always worrying about me were as I don't worry it won't change anything. I have missed out all of the infections and bodily function problems and there have been many, to numerous to write about. The reason I wrote this post was a guy on the MS forum was worried abut how his diagnosis was going to pan out and I thought how had  panned out for me and in all honesty I dont know because I have lived through all of the above changes and I am still here just a bit older and none the wiser. MS is a journey that is different for each individual. Someone once said what dont kill you makes you stronger, well I ain't dead so I must be stronger.

Friday, 25 November 2016

Fish n Chips at Tankerton

Well it was our wedding anniversary and what better way to celebrate than with fish and chips sat in the car at Tankerton. You can't say I'm nothing if not an old romantic! It was actually Heathers call. We had stuff to do which involved me sitting in the car whilst she Sid stuff and then it was early afternoon, given the choice of KFC or fish and chips the fish won. We love Tankerton slopes but today's weather kept us in the car to dine. I had been out earlier when we had visited the garden centre and it was freezing so no chance of me suggesting we eat alfresco.
We have had a super day celebrating our 38th year anniversary and looking forward to lots more.

Tuesday, 22 November 2016

Oh what a wonderful morning oh what a wonderful day


The title I have just learned is a misquote of the opening song from Oklahoma (learned from searching Google). I have never to the best of my knowledge seen the film so the lyrics have been absorbed by osmosis and the only thing I know about osmosis is that you don't want it in the hull of a fibreglass boat evidently if you do get it you no longer have a floaty boaty but a sinkie shipie not a very good trait in a floaty boaty. It makes it a sinkie Mcboaty Face.
That is a rather long introduction to today's post which basically is about the weather. This morning I had another slow start, Heather works on the assumption that if I am in bed I ain't going to get into to much trouble. So seeing as she had a school run and then a trip to work run for school runs mum it meant that I stayed in bed until after ten. By the time I was showered and dressed it was just before twelve and despite the Sun shining bright and the blue sky you could tell it was blooming freezing cold outside and to top the cold off it was blowing a gale. The back end of some storm who's name escapes me. Why do storms get names now? Does it make them more user friendly when filling in the insurance company forms. My Volvo was crushed by the oak tree blown over by storm Simon! Or Simon sucked the roof off of our house as he proceeded toward Acacia Ave where he blew the vicars chimney onto the number nine bus.
All rather odd if you ask me, but as per usual no one ever asked m for my opinion. If you had asked me about today I would have looked out of the window and burst into song. Yes the afore mentioned Rodgers and Hammerstein movie number. But I would have been safely ensconced inside behind double glazed windows and being kept warm and toastie sat beside the radiator. Heather having actually been outside reliably informed me if was flipping freezing cold and that the wind was so lazy it didn't bother going round people it just went straight through them.  So according to Heather my view on the world was as all of my other views on things was wrong! Somethings never change then.

Sunday, 20 November 2016

Two weeks since I fell over

You wouldn't believe that it was almost two weeks ago that I had my fall in the bathroom. That floor is so hard! yesterday was the first time I managed to cross the landing admittedly it was slow  but my days of walking at a brisk pass are long gone. Tonight getting from the landing to my bed was awful. I gripped that zimmer frame so hard I was convinced that it said ouch. the distance travelled through the door and to the edge of my bed is less than six feet and it took me around five minutes.  NOT a marathon pace but compared to being in bed unable to move it is  faire whizzing along.  Yep I know that it was the end of the Day and all that but I thought I was getting better. Still with the weather forecast set to rain as a default this coming week it don't look as if I will be getting much chance at outdoor activities this week. I will have to get the paints out and see if I am capable of doing a masterpiece!
Friends of ours are due to move to Scotland shortly so I don't think me complaining about the weather will cut the mustard with them I saw pictures of snow up North on the tellie tonight.  I have been told last night saw the first storm of the Winter but I slept through it and it's 88mph. winds. Night folks from a calm and tranquil Margate.

Thursday, 17 November 2016

Unable to bear weight after my fall

I know that it has only been a week since my fall in the bathroom but my legs still refuse to walk. Yes I told you I only do a few dozen steps but now after my tumble I am unable to do even one step. Which makes transfers to and from my wheelchair very interesting! I normally park the wheelchair on the landing and come into bed with my zimmer frame but where my hurt so much I am unable to do even that. If things don't improve I will phone the GP next week, I said yesterday that I thought I had an infection but I decided to wait and see how things pan out but now I am regretting that decision. Still what's a few more days of feeling rough between friends?
Been an odd sort of day weather wise here in Margate and things are not looking much better for the next few days still if I am feeling grott I would hate for the weather to be nice. Night folks I hope you are all doing better than I am.

How multiple sclerosis has messed with me this week

I wrote previously about my fall last week. It is still messing with my body. Last week I could walk in a fashion with my zimmer frame the approx twelve feet across the landing to the bathroom. After the fall I spent a couple of days in bed and when I did manage to finally get out of bed my legs wouldn't move. I mean no way they won't budge. So for the last four days or so Heather has been getting me into the wheelchair and wheeling me across. Tonight I feel as if I have been run over by a bus. My arms ache my joints ache and my fingers feel like they have been replaced with some sausages! My urine stinks so first thing tomorrow I am onto the doctor for a urine test. This has come as a bit of a surprise as for the last two years I have been infection free. Ever since I had the supa pubic catheter fitted as a replacement for the ureatheral one I have stopped having infections.
The supa pubic catheter has been a dream, I went from urine infection virtually every month and often being hospitalised to no infections well maybe three in two years! So having had this awful feeling almost constant it is a real shock. In the past it has been so bad I was unable to lift my head off the bed and was rigid from head to toe, that was really scary the first couple of times but like everything you cope with it. But after two years it has snuck up on me and sort of jumped out from behind wardrobe. MS is the disease that keeps on giving, never a dull moment. To be continued.......

Wednesday, 16 November 2016

Multiple Sclerosis fatigue flattens me

My day started the same as any other day. My wife Heather made tea and we listened to the Chris Evans breakfast show. She got into the shower but here is where today was different, I turned the radio off and went back to sleep. Evidently Heather came in and found me snoring and left me sleeping while she sorted the washing and did stuff like that. She came up to wake me and get me showered about ten. I declined and she left to do some shopping. She tried to get me up on her return but my body was having none of it. I actually slept all day, waking only for the odd glass of water.
Fatigue and multiple sclerosis seem to be great bed fellows. Ask most sufferers what is the hardest thing about the disease and the will tell you fatigue! It is way beyond exhaustion it is off the scale. I slept all night and all day. Yes I am awake now at 12:20am  but will soon be asleep again. I have been awake approximately four hours, and am now struggling to keep my eyes open. So night night. I am feeling sleepy, tomorrow as they say is another day.

Thursday, 10 November 2016

I am out of bed

Well not managed to get far I am sitting beside the bed. But the knee is hurting less after a bit of kerfuffle getting from bed to chair. I tried to get up earlier in the Day and no way was I going to make it. So that's me outta bed but not managed to get dressed yet. Got to leave something to try tomorrow. I am signing off now. Nite folks

Wednesday, 9 November 2016

Oops had a fall again

It's been a few months since my last one but this one has hurt. I slipped in the bathroom and had to be rescued by our neighbour. He and Heather got me up and onto a chair and from the chair on to a wheelchair and then into bed. I must have pulled some muscles as my knees are not only bruised but swollen. I have been asleep for around fourteen hours and am just fighting going again. The shock messes with my body and exhausts me. So signing off for now.
Early evening and just woken. Not hurting as much as earlier so may try and sit in the chair. All this from something that took a split second to happen. Take care folks.
Well it is now Thursday morning and tried to stand earlier and my right leg won't take my weight so am back in bed. So much for it getting better. I have just called the doctor. I know that I tore some muscles or ligaments but do I strap the knee or what would be best I would like some advice. And there is me going to see Doctor Hook at the Marlowe at Canterbury tomorrow.

Saturday, 5 November 2016

Slow day Saturday

It's been one of those days. Early start because Heather was going out to  a talk about Love in a box the Christmas gift of a box of gifts for a child or person somewhere who wouldn't have anything for Christmas. I stayed at home and did a good job of surfing the net. Heather came home for lunch before heading off to visit someone in Canterbury hospital. Before leaving she sorted my painting stuff and yes I set about creating a masterpiece. Well not so much a masterpiece as a sentence. I painted the words from a TV programme that was on. It is not easy trying to write with a paint brush. I practiced individual letters x is not as easy as you might think and if you try capital letters complete with embellishments it can be tricky but I thought I got some great practice and brush skills. Heather returned complete with a grandson who was soon joined by his mum who was armed with McDonald's. I had my usual quarter pounder and fries and a strawberry milkshake. The evening came with the sounds of fireworks and I stayed at home in the warm when they went for a ride to see the fireworks.
All in all I am exhausted doing nothing and now in bed watching match of the Day and about to get some shut eye. Not a busy day but an enjoyable one. Reminds me of the song Busy doing nothing working the whole day through! 

Thursday, 3 November 2016

Disabled? Try painting my new remedy for multiple sclerosis,

I asked for some paints for my birthday, the ideal present for the man who has everything including primary progressive Multiple Sclerosis! I haven't painted a picture since I was in art class back in the late 60s. Well I got the paints, my sister in law bought me a set of Winsor Newton water colours but not having a brush in the house narrower than a three inch brush for glossing doors and skirting I was stumped. I couldn't get out anywhere for some time after my birthday so it was last week before I was able to get to The Range stock up on brushes and watercolour paper. Today I managed to get some time to myself and devoted it to playing with the paints. When shopping last week I also treated myself to some acrylics. I have never encountered acrylics before and spent a pleasant couple of hours this afternoon messing about with them. I am an awful artist. No honest I kid yeah not truly awful, but art is in the eye of the beholder and this beholder created some truly impressive art work today. So good in fact I won't burn it before I put it in the bin. It really was truly awful but I enjoyed doing it and it exhausted me. I was absolutely knackered by the time I had finished, the mental strain really tired me out.
I had to concentrate so much just painting a straight line and painting the alphabet well that was so strenuous I had to rest before going on to numbers. They reason behind this sudden interest in painting follows on from taking up drawing earlier in the year, I need to improve my fine motor skills. Multiple Sclerosis is the illness that keeps giving and as well as taking away my ability to walk get dressed and undressed pee and poo it is restricting movement in my hands. Why using my hand to paint is going to delay loosing  the use of my hands I don't know swimming walking and exercise has not delayed the loss of the use in my legs so why will painting and drawing delay the losses in my hands I don't know but I am enjoying myself so I don't care. Well if exposing my lack of artistic talent is enjoyment then enjoyment it is. Anything that fills my days and occupies my days is fine by me and now other than the occasional purchase of consumables my new found hobby is low cost. Yes it would be great to have hand made paper and sable hair brushes but at the lower levels of rubbish talent I feel no need for such niceties better brushes won't improve my artwork the only thing capable of that is a better body and all the while MS is incurable I am going to be a crap artist.
So that has been my foray into watercolour painting even if I did use acrylics I watered them down with H2o. Maybe one day I will paint something that I feel good enough to share with the world, but after today's attempt don't hold your breath in anticipation.
One last question before you go What Is Art ??  I had to google it and I am pretty sure what I am doing isnt.


 

Wednesday, 2 November 2016

Wheelchair adapted vehicle WAV is good

We have only had the new car (it is second hand but new to us) for two weeks but I have been out loads. We have had two picnics a couple of shopping trips and today we have been out twice. Heathers sister has been transferred to Canterbury last and today she needed some bits which entailed a trip to Marks and Spencer's then we came home for lunch before heading off to Canterbury. I was asleep before we  had got to Margate seafront! As usual the hospital car park was full and after driving round for fifteen minutes we opted for yellow lines outside and put the blue badge up. Heather sister was fine and we had a nice time with her and some of her friends, we actually went to the coffee shop rather than disturb the other patients on the ward. Once again I slept on the way home. Canterbury was a gridlock and we came home via Faversham. Evidently I was still asleep when we arrived home and Heather left me in the car for ten minutes before retrieving me.
Not having to struggle getting in and out of the care with the constant fear of falling is great. Just staying in the electronic wheelchair makes it so easy I don't mind going out and joining the normal people even in supermarkets (isn't it cold in the chilled food isles?) Tomorrow we are picking the youngest Grandson up from school. Something I don't get to do very often, he will be surprised to see me there. This WAV is making my life so much better I came recommend it Wheelchair adapted vehicles are fantastic. The are another adaptation to make disability and being disabled better and I am so grateful we have ours.

Tuesday, 1 November 2016

Check out your home insurance for disabled adaptations

I was laying in bed one morning last week thinking about stuff, the meaning of life etc. and then the great revelation came. It was like a thunder bolt kerzam it just hit me right between the eyes. IS MY THROUH FLOOR LIFT INSURED ON MY HOME INSURANCE?  Not my normal early morning thought they usually consist of plans of the days food or plans for expedition in hunt of bacon sandwiches! No home insurance is not my normal through process but it scared me. If for any reason it was damaged in a household misadventure I would be stuck. I can no longer negotiate the stairs and a stairlift is not a safe option I need the lift, I was worried enough to call my insurance company and inquire. And all is well the lift is covered under my existing policy but I would advise you to check. Insurance is a funny thing, very rarely do we think about it and after the event it is far to late. So check it out!