Sunday, 31 August 2014

Sunday Sunday

My brother often tells me he is liking his retirement. He says "do you know no sooner is it Monday it's Friday and then I get the weekend off". The reason I am saying things is because my weeks are like that, one day is much the same as any other. We only buy a newspaper on a Saturday and that's for the TV guide so I often have to check the calendar to see what day it is and as for the date I never know it. I do know tomorrow is the first of September. How come I know this momentous fact my Doctor has left and starts his new position and I will mourn his leaving. He has been there for me through thick and thin up hill and down Dale in good times and bad. He has become a friend and I will miss him. Enough of the sentimental stuff I now have his wife as my GP and she is much nicer than him anyhow. It's funny how you get complacent and change is unsettling isn't it. If nothing changed we would all still suffer from Rickets and travel around in horse and carts. My dad was born 100 years ago and when he was a boy on the farm they used horses now he wouldn't  recognise the world it's fast cars and mobile phones. He would have known the date though it would have been his birthday this week on the 5th he would have been 103 had he not died at the age of 54. All the advancement in medical care and they can't cure my multiple sclerosis or the common cold for that matter.
I am just putting these few lines down coz I can there is no real reason for me telling you this stuff other than to highlight that things change and say yes it will be different but most not all change is good. Embrace change even energy-efficient light bulbs because we can't live the same for ever we change.if things never changed those energy-efficient light bulbs would be candles and we would be in mud huts. Evolution progress and tomorrow it will be Monday the first of September.Embrace the first day of autumn.

Friday, 29 August 2014

Fish n chips and cold knees

Been a funny sort of day. Up early for me I was downstairs showered shaved and eating breakfast before ten o'clock. We needed to collect some medication from the chemists and then went through to Broadstairs to visit The Butcher of Brogdale I fancied lamb chops for dinner. On the road into Broadstairs we met heavy traffic going nowhere. It can be a bit (slight under statement) of a bottleneck. We cut off and went round by Bleak House where Charles Dickens used to stay and the weather really did get bleak. The heaven's opened and the wind got up the only amusing thing was seeing some cyclists we had passed a while earlier huddled under a clifftop shelter. Fancy going out in shorts in August it's just asking for rain.
Well we got the chops and some vegetables and headed for home. The rain must have got into the electronics because temporarily the indicators stopped working and Heather got wet checking they were working again. We eventually got home and it had hardly rained there the line of washing Heather had mithered on about was virtually dry and was given a quick spin in the tumble dryer. Lunch and then we had grandchildren for a while. The eldest always grabs the rise and recline chair his brother test all sorts of bribes to get him out but has yet to succeed.
Our daughter returned in time to relocate reclining chair son to football training and moan at her older sister who was joining us with her son for fish and chips. I know I told you we were having lamb chops but that got changed to accommodate the way the Day went. Various visitors and things put paid to them being cooked. So fish and chips at Herne Bay. I must admit it wasn't the best they have served but the portion was huge so never mind the quality feel the width. We got back in time to watch Scrappers on telly followed by the extra slice of bake off.
I have just got into bed and my knee' s are freezing I mean really cold. I am warming up now because Heather has found me a blanket, anybody would think it's winter here tonight. Brrr. I am going to sleep night night.

Thursday, 28 August 2014

Multiple sclerosis law of motion

Isaac Newtons laws might have been referring to MS.
  1. Third law: When one body exerts a force on a second body, the second body simultaneously exerts a force equal in magnitude and opposite in direction on the first body. Or in the case of MS if you have one good day and you manage to go out and  eat a fried breakfast sitting in the Sun, overlooking the sea with great company and them sit in your wheelchair and are pushed along the prom for a mile. If you think you can do this without an opposite reaction you must be mad. REMEMBER you have Primary progressive Multiple Sclerosis and PPMS will get you back for enjoying yourself. You might not have done a lot of exercise but your going to spend at least a day recovering.
  2.  You see (ignore the number two somehow my kindle thinks it's a list) had I stayed at home and not gone for my full English sitting in the Sun I doubt I would have spent ALL OF TODAY laying in bed sleeping. I can't say that I would been full of beans but MS makes you pay in opposite to your good day. People say ohh you get one good day and one bad day and I nod my head like a wise old sage in agreement. I actually think it is far more disproportionate than one good one bad.
  3. Ignore the number this is just another paragraph. If I excerpt myself in anyway my MS wants more than its fair share in pay back. I would have eaten yesterday it was just a car ride and a nice push along the seafront that was extra. But I paid one day in bed and I was proper sleeping. Heather woke me with drinks and returned to find them stone cold untouched. I had gone straight back to sleep. I got up at five o'clock. I am back in bed now hopefully I will sleep all night but often I am awake unable to sleep. So as for one good one bad, yeah I wish it was that simple.

Wednesday, 27 August 2014

Tankerton Slopes Whitstable for Fried Breakfast

A fry up can be acceptable at any time of day. We got up slowly as usual today and when I spoke to daughter number two I had told her we aimed to take the camera and pootle of to Dover, well we never got to Dover in fact we went in the opposite direction. We met up with Wendy and Phil and went to one of our favourite cafe's at Tankerton Slopes I have written on here many times about the Bacon and egg sandwiches the doorstep slices of bread and the portions. Well this time I ended up having a small breakfast:- two eggs two bacon one very tasty sausage fresh fried tomato and two rounds of toast plus tea or coffee. I had charged the camera but when we got there it was still at home so no piccies. You can see the Isle of Sheppey and also the Essex coast and Southend.
The weather was bright and sunny so we sat outside Heather had to cut my bacon up and help with the eggs after I started wearing more than I was eating the toast went down well and I managed to get most of the dippy toast in without to much yolk on my tee shirt. We walked along to Whitstable Castle and saw it was mobbed with a KCC road safety thing so turned round and walked back, negotiating the wheelchair in crowds is hard so we decided discretion is or was the better part of valour. Click here for one of our trips to the Seaview Cafe

Big Breakfast This is the large breakfast and I am having it next time 

Helpful Advice

Tuesday, 26 August 2014

Why I want to move to Wales I have Multiple Slerosis

Wales has recently become the first country in the UK to approve a cannabis-based drug for sufferers.
I have had Multiple Sclerosis for over twenty years, it has gradually robbed me of my body. I am now in a wheelchair and couldn't exist if it wasn't for my fantastic wife. Cannabis has long been heralded as one thing that can benefit Multiple Sclerosis sufferers and now that the drugs companies have bought a product out that will possibly alleviate some of my symptoms the National Institute for Health and Care Excellence NICE as they are known wont make it available to MS sufferers in the UK. Wales has made it available but the 100,000 sufferers in England are being denied it. Am I disappointed damn right I am. I want to shout from the tallest tower I want to chain myself to railings outside Parliament, I wont but I want to. I am to weak to take on campaigning but it makes me made GRRRR. thats me being mad now I will have to sit back and wait for those who are able bodied and in well paid jobs hand out the crumbs to me a mere sufferer.

Monday, 25 August 2014

Wet and windy it must be Bank Holiday

I cant believe its the end of August already! For me it has been a fantastic summer, the weather affects my MS the heat zaps me and I retreat to bed and when its too cold I dont leave the house. This year I have managed a few days out and have been able to do a few things. Not a lot but when you depend on others for virtually everything even a drive in the car and an ice cream or a bacon sandwich sitting watching the world go by is a treat. I am home alone for a couple of hours Heather has popped out so I am going to try and find something on the television looks like that the BBC has a film so I am signing off HAVE A GOOD DAY

pain treatments

I posted a link to a BBC article about Savitex last week, evidently it will be available to MS sufferers in Wales but not for suffered here in the United Kingdom.  That for me sucks. I have had Primary progressive Multiple Sclerosis for so long I don't actually remember being pain free, I take as little pain relief as possible as I suffer side effects and to have a treatment available but not qualify for it because of my location is ridiculous. I fully understand the cost restraints etc. But when I see the way the NHS spends its money I am not inclined to care. The organisation has treated me very well over the years and I am always the first to defend it but maybe I have said that wrong. I am always the first to defend its staff, and maybe that's where I have been wrong Confusing the staff from the bureaucracy. I can once remembered dragging myself out of my hospital bed and walking my chest drain round into the next bay and tearing off a woman who was slateing the nurses for every thing at the top of her voice. She discovered she wasn't the only one with a loud voice and I got a round of applause for explaining the facts of life to her and making her apologise to the nurses.
Maybe I thought the nurses and doctors on the front line were the NHS but they are the bit we all see so maybe my confusion is OK. The bit of the NHS I am confusing it with is the faceless bit the bit that costs a fortune and makes the decisions. The bit that shuffles the famous papers, strange how once we thought with computers we could have a paperless bureaucracy. Sorry I digress, the management who decide and implement and are not accountable. Who's decision can cost fortunes but who can change that very expensive decision and the doctors and nurses who had originally said it's unworkable have to pick up the pieces and work with less money are the ones who are ignored.
So maybe I want Savitex and less costly management more front line staff. Welcome to my utopian NHS.

Sunday, 24 August 2014

Carbon Fibre runner

Just watching the Blade Babe Marlou Van Rhijn give an interview about running with blades. Disabilities take all different forms and she is missing bother her feet. Would I swop my disability for another form?  Well we dont get any choice in what is wrong with us do we. I wake up every day wondering will I be cured today even after in excess of twenty years with Primary Progressive Multiple Sclerosis I still am waiting for the cure. Why the fact that someone who is disabled in the way she is should be considered aided by blades is beyond me surely people should ask is she disabled by the fact she is missing two feet. They dont comment on the wheelchair in the wheelchair races or wheelchair basket ball. Maybe it is me and I am missing something still she won her race. I am going to eat my evening meal and think about types of disabilities.

Friday, 22 August 2014

Just got up

New and Old side by side
Here it is four oclock in the afternoon and I am just up. I would have still been asleep had Heather not needed to talk to me before she went out. I had an exhausting day yesterday, yes I know I only sit in the car or wheelchair but I am exhausted all the same. I went for a ride through the Kent countryside and onto the Isle of Sheppey where we went over old stomping grounds from my youth. We went over both the new bridge and the old one. The new bridge is a huge thing dwarfing the old bridge. We went to Sheerness and Leysdown and Minster plus all points in between. I was going down memory lane. I have had a rich and varied life and its great to revist some of my past to reawaken those brain cells that had lain dormaint for over forty years.

Wednesday, 20 August 2014

To Shop or not to shop that is the question

the Canal

we should have chosen to eat here MUCH less expensive

Ships off Margate

less zoom more ships off Margate there was 20 in total on Horizon
Yesterday had the normal lazy start and because it looked like rain we decided to go shopping for something for dinner. Having not nailed down where to go local or Canterbury Tesco or Sainsbury we found ourselves in the car at the end of Zion Place sort of overlooking the sea apart from in the middle of your vision is a huge Victorian terrace of houses side on to you so you get a split view of the sea, Wind turbines one side and WW2 sea forts Radio Caroline and all that the other side. Well if you read by blogs you will know about my Ships theory and guess what there were lots of ships but being in deep conversation about where to go shopping I had missed them. Heather cut down to the Winter Gardens car Park and we began the count, My Theory is you can always count ten ships off of Margate. They have to park up there to get a Pilot to drive them into Tilbury and you can always see the pilot boats whizzing up to these huge vessels and delivering the Pilot who then guides them through the treacherous Goodwin Sands. The final count was twenty Ships and one of them had been enormous.
I do look up on the internet to see where these Ships have come from and where they are headed. I use a website called  
Its a great source of fun and it has pictures of the ships from various sitings all over the world, a bit like Eddie Stobart for Ships.
Eventually when I had my fill of floatie Boaties as my Heather calls them the sun had come out an flecks of blue sky was showing. Hmmmm difficult decision to make now, to shop or not to shop that is the question says me ruining those famous lines of the Imortal Bard. Given the chance I would never shop men are only ever happy in Tool Shops looking at huge dewalt planer thicknesser's or socket sets. Tins of carrot and parsley soup dont have the same ring to them in a throw away line at the Public bar in the Kings Head Pub. Imagine the conversation over two pints of Mild with your best mate, "I got a real good deal at Siansbury today on two tins of CPS" Not the same ring as I was in toolmart looking at the Dewalt DW733 do you know that greedy son of a bitch will deal with eight metres yes EIGHT METERS a minute sweet bit of kit if I was still working thats what I would have the 733 takes some beating" I can imagine it now I would be a hero amongst mere mortals.
With the sun out this was now time to decide shops or Bacon Sarnies. We call round to see our friends who are out, Heather calls them and gets told "stay put don't move we are coming you cant go with without us"
 Heather Jumps in the back Phil takes over the driving and the girls are chatting away in the back and we head out on the open road. We eventually end up in Hythe arriving after a very scenic ride through the Elham Valley do have a look at the website its a stunning piece of Kent countryside. At Hythe we try and park in the town the High Street was no go and we didn't want to park in the supermarket car park and sneak out without shopping so headed away to Seabrook half a mile just outside of Hythe and Parked up at the car park at the begining of the Royal Military Canal. We had a short walk along the sea front and stopped for Bacon and Egg rolls from the little beach front hut and ate them overlooking the English Channel. I used to fish off this stretch of shore as a youngster and I remember many stories of 20 pound plus Cod being landed here in the 1970's unfortunately I never caught one of them. When we were first married we had looked at a shop a few hundred yards from were we had parked so on the walk we went over a bridge crossing the canal and looked at the back of that said shop and the bungalow that was now standing in the space some old outbuildings had occupied. Eventually we wound our way back to the car and watched some children messing about with canoes.
Next we headed through Sandgate and onto Folkestone another haunt from my youth we managed to negotiate our way through the one way system and ended up following a Bride and Groom in a Horse and carriage so the pace was slow. Heading on to Dover past the Castle we cut off after missing the turning we were meaning to take but ended up in a traffic jam in a small village as a lorry carrying a big digger clossed the road. Then we were on to look for an ice cream by Walmer Castle we soon discovered the no ice cream van but that didnt stop us onwards to Deal Beach Parlour
Rum and Raisins in cones all round. Next on to Sandwich were we had a cuppa from our favourite chippie then home via Westwood Cross shopping centre. The girls wanted some bits so Phil and I went into Phones direct. I never did get served and headed over to the o2 shop and spoke to Sophie she wrote all the details down for me so I could report back to Heather after all the phone will be hers I never use my mobile.
Dropped the others off at their house and Heather took the coast road home and just as we pulled up outside home Heather's phone goes. Its Wendy had she left her phone in our car. Back to there house but the first route was blocked by a closed road. So we went past Margate Football club, mut have been a big match there was cars everywhere. Delivered the phone  and came home in time to watch IN THE CLUB. Great Show. Margate FC won 3:1 against East Thurrock United come on you Blues

Sunday, 17 August 2014

I am broke part two

Hoodners Horses wander the streets

Apologies for any typos I am laying in bed again today. MS is  hilarious its one big bundle of fun. I live in Margate  on the Kent coast and once a year a neighbouring town Broadstairs holds a folk festival titled as Broadstairs  Folk Week it really is one of the hi-lites of the local calendar. Well Friday was the last day for this year and we went with some of the family and had a good mooch around the stalls and watched several different performers. I was pushed around in my wheelchair so not a strenuous pass time. But the following day I couldn't even get off the bed, Heather pulled me round and sat me up as usual but I had no strength and I hurt  all over and my joints were really painful. Yesterday was spent sleeping and taking painkillers watching a bit of football and more sleeping.
Today has not been a lot different I have been asleep all morning but I have just eaten plus a trip to the bathroom in the wheelchair so I must be on the mend I couldn't have done that yesterday. Talking to other PPMSer's there is nothing unusual in feeling awful after something out of the ordinairy. As I  said  I wasn't doing anything strenuous just sitting in  the wheelchair  but even different  thoughts wear you out  and I have had MS long enough to know I need to pace myself. I rest before we have visitors so I can keep  up with the conversation. If we go to  the supermarket I come home and  read  the paper and often have a  nap. We don't go  far nowadays the most  we do is go for a ride in the car an even then I often fall  asleep in the car.
much dancing and fun plus loads of music

Saturday, 16 August 2014

I am broken today

I tried to get up this morning but failed.Heather put me back to bed, I didn't actually get out of bed as I said I tried I failed.I watched a bit of football on BT sport but I am still in bed twelve hours later. I have got Match of the Day on and will soon be sleeping again. I assume I over did it yesterday but I do think I have an infection of some sort. My joints all hurt and I have been running a temperature. The footie has just about finished so sleep is on the cards.

Thursday, 14 August 2014

Slow day for me

I woke late and stayed in bed. Heather was up and doing housework so kept me supplied with tea and coffee but I think she was secretly pleased I stayed in bed. Another no speaking phone call at 11:09 made me jump out of my skin in the few minutes from turning the television off at 11:00 I must have nodded of because I really did jump out of my skin. Heather finished her housework and got me up I had lunch and it started to rain. No that's not true it just started to tip down rain had nothing to do with it this was a deluge. Needless to say I didn't want to go with Heather to the shops I stayed at home and re-read Saturday's paper. We only buy one paper a week mainly to the television guide and it lasts all week. I am a little like that Simon and Garfunkel record I get all the news I need on the weather report!
Not actually true I am an avid watcher of the news it's just newspaper I dislike. I don't mind reading them it's buying them I dislike. News on television is much more instant but I can't stand the 24 news channels it's just on a continuous look repeated every fifteen minutes yawn! Don't get me wrong I like news but it belongs in its allotted slots lunchtime, early evening and ten o'clock. As a lat I used to listen to Jack Dimanio every morning on the home service radio I think it was before it became radio four. His voice was very BBC no breakfast television in those days. I can remember radio one starting with Tony Blackburn anyone remember Arnold his dog? He is on Twitter not Arnold Tony is, I tweet him some of my bad jokes and ask after Arnold when I remember. He usually tweets back does Tony.
Just got to bed having watched The Honourable Woman on yellow can't make head nor tale of it but next week's the last one and I am sure it will all be as clear as mud.
That's me done the painkillers have just kicked in so I am signing off. Nite work.

Wednesday, 13 August 2014

My Grandson and I

Number two daughters number two son had a hearing test in Canterbury today. Given he could have had the test done a few hundred yards away from where I am laying in bed writing this post when she said she must have been mad opting for it to be done in Canterbury I found myself in complete agreement. Never been the sharpest tack in the box that one yes the one with a degree!
Well Number one grandsons comes in shouting "hi grandad where are you" his hearing is awful it must tumb in the family. I was in bed still Heather leaves me there first thing and gets all the bits done before getting me up and showered. Well in he comes having tracked me down by a process of elimination if I wasn't in the bathroom or Heather' s bedroom I must be in my own bedroom. The spare room is full of junk and he never went in there but he did check the other two rooms. He came and sat with his grandad and explained the complexities of his new Pokemon cards drank my orange squash and asked me about football. Pretty much our normal conversation. I had to get showered so he went downstairs to play and then joined me when I was all done and dressed for breakfast. I had cereal he had toast and then we got down to discussing football. I looked up some stuff on the laptop for him and he plugged his earphones in to the iPod and I lost him after that all I got out of him was muffled laughter until he surfaced for food.
Bacon sandwiches for lunch and he took grandma into the garden to play footie. His brother phoned asking what did we want for lunch and his mum was disappointed that we had already eaten, it was one o'clock mind you. Well they eventually get back to us and much frivolity over their lunch.. All good things come to an end and as usual tears before bedtime they never want to go home but screaming and shouting they were dragged out and for once nothing was forgotten.. That was my day and jolly good it was too.

Home alone again

Daughter number two had daughter number ones son today and they all wanted to go to Wingham Wildlife park. It's like a Zoo and would be hard work with three boys in tow so Heather went along to keep control. I don't know why it is but she feels guilty for leaving me home alone. I personally love it. I get to watch what I want and most definitely I don't watch Escape to the Country. I was left with glasses of squash crisps biscuits a cool bag full of goodies plus a fruit bowl full of apple's some over ripe bannana' s and a whole container full of dried apricots, I love dried apricots. Off she went and I had two phone calls to check I was OK before they had even arrived at their destination. She does feel that guilty.
Well I was on my second visit to the food and the phone rings, it's that nice foreign girl the one who keeps calling about my Windows Computers. She is very nice for a con artist and I even turn the tellie down and get her to repeat her spiel all over again. When she had finished I asked her about this computer she says my Windows Computers I says the only Windows I have are for looking out of. She gets confused at this point and called me a nasty name and slams the phone down on me. She can't understand about uPvc Windows or maybe she is allergic to the roses I was describing to her the ones that I don't actually have but I was describing then in great detail to her. Anyhow I was now sitting here with no one to talk to and a need to go to the toilet. I have a catheter fitted and the bag was full to bursting point, so off I toddled crashed the electric wheelchair into my zimmer frame and up to the bathroom on my stairlift. I am just washing my hands and the phone rings again. I haven't been this popular since I got measles as a kid. Well I know full well I can't answer the phone we do have one upstairs but I can't rush with the zimmer, in fact I can't rush without it. I finish in the bathroom and halfway down on my stairlift the darn thing goes again.
Eventually I am back in my wheelchair and checking the phone. I don't recognise the number, it's a mobile number so quick as a flash I reckon it must have been Heather checking on my well being. I ring her and explain but no it's not her but as our son is on holiday it's probably him. I ring him and yes it was him and he is on his way with out his girlfriend he had rushed out of the house thinking that I must have fallen over or worse and did I fancy watching a DVD he will go back and get his girlfriend and they would be back in about half an hour. Yes it was funny him thinking I might have fallen over and no he had eaten he didn't want to share my picnic.
Disabled Don selfie

Disabled Don Blog Author
Funny old day and the DVD was a bit odd but Heather got home halfway through it enjoyed it I couldn't understand it. Still the Zoo had been fun and I got some cake. I wonder what's in store for me tomorrow?

Sunday, 10 August 2014

Home Alone

Heather has gone shopping with her sister so I am here all on my own and bouncing between twitter the MS forum and blogging. The TV is on and I am also trying to catch up on some recorded shows. I have got Melvyn Braggs Radical Lives about Thomas Paine one of the US founding fathers and it strikes me words he wrote around 1778 still resonate now near on 250 years later those words are
"These are the times that try men's souls."
This simple quotation from Founding Father Thomas Paine's The American Crisis not only describes the beginnings of the American Revolution, but also the life of Paine himself.
These words of Paine were about the radical revelution in what was to become the USA but today we have worries coming from all sides Iraq Syria and Gazza let alone what troubles us here at home. My biggest concern at the moment is plugging  my laptop in as the battery has just got to 10% and I now have flashing red lights so life goes on but times dont change just dates

Busy doing nothing

I can't say that I have been busy. Saturday's are always lazy starts and today was no different, late shower then watched a bit of television. A phone call from my brother the my other brother called to say could he come and visit as he had some relative's visiting from Canada. We arranged to meet up early afternoon, it was great to see my cousin and her husband I have seen her recently but we decided it had been 42 years since I had seen him, he was unable to come when his wife had visited last. All this excitement left me tired but unable to sleep. Our son needed his mum as a taxi and Heather went to take him and when she came back we went to count the ship's as I hadn't been out all day. So although I haven't done much I have had a full day and now I am trying to catch up on the football results before I catch a few Z'ds.

Friday, 8 August 2014

Heat zapps me been asleep most of the day

Yep that's twice this week I have slept in till mid afternoon and I mean real sleep, wake up for a minute or two mouthful of squash and zongo again. It's the heat that is doing it to me. I am so weak even crossing the landing with my zimmer frame is a full scale operation. I was just reading a blogger with relapsing remitting MS say he controls his ms with diet. Am I jealous no but I am envious. I don't do jealousy. It is self perpetuating you start of with one thing about one person and then it grows and grows and then everyone is better off than you are. I gave that up a long long time ago. I am genuine when I say that. Jesus said we will always have the poor and I am living proof of that. I am pleased for people who get a new car and yes a tiny bit envious but envy is natural. I don't care they have got a bigger house, that means bigger bills, I am not too happy about the ones I have got so bigger bills no thank you. Bigger car means bigger insurance bills and believe me when I say I don't need to pay more insurance, or more fuel or more for tyres etc. Am I jealous no and I am pleased that person has the where with all to afford to do it.
What really gets my goat is my MS. No I have come to terms with it and how it's wrecked my body but other people's perceptions of me. I get hacked of hearing"you managed that yesterday or last week or something like that" because I did it then they expected me to be able to do it again. Fatigue is debilitating and knocks able bodied for six and for me I struggle to cross the landing on a good day and just because I did something last week and feel I can't repeat it this week ain't a slite on you it is me. I am knackered and I know it would take me two if not three days to recover. And no I don't give a toss that you think I am swinging the lead if you spent one hour in my shoes you would know I feel shite as default and exhaustion is the norm. So don't take it as personal it is me I accept the blame and actually I don't give a toss. Get over it