Saturday, 25 June 2016

Had a hard day

Yep how hard can it be, just laying in bed sleeping all day? Believe me it is hard, hard mentally, I don't want to be in bed I want to be up and doing stuff but today that wasn't going to happen even after a good eight hours of sleep I woke up and was exhausted. MS really messes with my body I get fatigue were I cannot even lift a leg off the bed, my muscles just refuse to work. In the past I have had to sleep downstairs because I was physically unable to get onto the stairlift. That problem has been resolved with a through floor lift but it still needs me to be able to get out of the wheelchair and undress for bed.
I am due a catheter change next week maybe I have an infection brewing. UTI' s are a major cause of problems with any form of illness but multiple sclerosis loves to mess people with any type of infection. Let's hope I don't have an infection as I am due for more treatment at Kings Hospital on Friday.

Wednesday, 22 June 2016

Hospital trip exhausts me

I had an appointment at The Queen Elizabeth the Queen Mother Hospital at ten fifty yesterday and seeing it was such a nice day Heather and I decided to walk. It's not far as the crow flies so we set out in plenty of time. Crossing roads in the wheelchair is a whole new experience to me and one I found pleasant. Each time a driver stopped to allow me to cross, even when there was a traffic island for safe haven by the time I had reached it the traffic on the other side had stopped to allow me safe passage. We got to the QEQM in time and I had just opened the copy of Homes and Gardens when my name was called out. Twenty minutes after we were heading back retracing our steps but I chose one different crossing point and discovered no dropped curb! Annoying as it was i made a short detour to find a drive way made no real difference but reminded me that the world for wheelchair user's is far from perfect.
By the time I got home I was exhausted and turned Heathers offer of a trip round Tesco down. But when she got home again I had recovered enough to want to go out so we went to Sandwich and ate Fish n Chips sitting in the car watching the world go bye. I must tell you about the lady and here dog. Car pulls up in front of us lady gets out followed by a border Collie. Off THEY walk dog on lead and we eat our fish n chips. We are just finishing up, Heather has taken rubbish to the bin  as I notice afore mentioned lady and dog heading back towards the car. The dog is no longer on its lead and it bounds up to the rubbish bin and starts to bark and growl at the bin as it dances and circles it. And it's owner walks up after it has been round the bin two or three times barking and growling away. She walks past the dog as it tell the bin off, she opens the car door the dog stops chastising the bin jumps in the car and off they drive. All I can say is it wasn't the midday Sun that was affecting the dog. Odd very odd.

Wednesday, 15 June 2016

First Day up

I have resurfaced. Up this morning to do the S S & S and now downstairs,I watched a film with our son and then  watched Football. I am now sitting listening to Down by the River Neil Young and Crazy Horse all fourteen minutes forty seven seconds of it. I never rated Crazy Horse forty years ago and I am more mellow now but I can take or leave it. I must dig out After The Gold rush
Well, I dreamed I saw the knights
In armor coming,
Saying something about a queen.
There were peasants singing and
Drummers drumming
And the archer split the tree.
There was a fanfare blowing
To the sun
That was floating on the breeze.
Look at Mother Nature on the run
In the nineteen seventies.
Look at Mother Nature on the run
In the nineteen seventies. 

Monday, 13 June 2016

Back to bed

I have bee n in bed for over two  days with what in all honesty is  nothing but a common cold. Multiple Sclerosis likes to be in charge of my body and something as simple as a cold has really wrecked my body. I was determined to get up this afternoon after all two days of almost constant sleep is enough for any man. I eventually managed to get onto the edge of the bed and with Heather holding the zimmer I was standing. Yah success oops too soon I fell back on the bed.  This called for plan B the wheelchair. I call it wheelchair because you can sit in it and it has wheels. It is really a commode but it is called a wheelchair in polite society it is the only chair in the bedroom and when the vicar comes to visit me in my sick bed I tell him to sit on the wheelchair, he knows as well as I do that it's a commode but he sits in it and I expect if I asked him he would give me Communion deleted on a commode.
I did eventually manage to get downstairs and watch some of the Spain versus Czechoslovakia match. But now  I am back in bed listening to Patti Smith sing After the Gold rush. I must say I think I prefer Patti dining it. The trouble is the Neil Young is an icon and his rendition is what we all know and have grown up with.and I was fifteen in 1970 when it was released so after forty five years maybe me ears welcomed the new rendition.
I am signing off because I can hardly keep my eyes open. Nite folks

Sunday, 12 June 2016

Common cold wreaks havoc with Multiple Sclerosis

Something as simple as a common cold can steel havoc with what is left of my immune system. A urine infection virtually wipes me out for days, I will go rigid and a trip to the bathroom with legs sticking out unable to bend at the knee is problematic. My legs are thankfully bending but this cold has closed me down both mentally and physically. It is just as if I am on  tick over just managing vital stuff but don't push it. I have been asleep all day, Heather has had to wake me to have a drink or eat

 It has been like I had shut down. I know some smart arse out there will have a name for it but here is mine. It's . White. noo no no its shhhh ite

It really is a common cold

No manners at all, there I was five days after Heather had started coughing and spluttering and feeling smug with myself in cor I ain't arf lucky kind of smugness and bang. Yep to late Ethel I hand already been incensed. Yesterday runny nose oops no Friday night  I sat in my wheelchair with a box of tissues and a carrier bag over the handle ready to receive the dirty tissues, and boy did did it fill up fast. Today I will again spend it in bed. MS hates anything messing with its status quo and even if I could manage to get out of bed I know I would end up in an undignified pile on the floor. So better safe than sorry another day in bed. I can feel a nap coming on. Writing this has exhausted me. Bye folks.

Friday, 10 June 2016

How come I get a cold in the middle of June?

I ask you how does that work?
I have avoided coughs and colds all winter and bang this morning I have the sniffles and tonight I was sat in the wheelchair with a box of tissues and a carrier bag looped over the hand control full of used snotty tissues. I am now in bed doubtful that I will very much sleep feeling crap!
Still I watched Love Nina and Mum  two brilliant TV shows. Saw some of the football  and ate a Chinese chicken curry. That really made the old nose run.
Let's hope I feel better tomorrow.

Anyone else waiting for the Euros?

Here I am up showered and breakfasted wondering what to do with myself until this afternoon when the football starts. I know England is not pls until tomorrow but France play a good game.
So footie is not floating your boat? You can't escape Europe at the moment can you, football politics  and immigration. I don't care now, I posted my vote of yesterday and I imagine that it is sitting in a mail sack with loads of it's mate's waiting for its moment of glory.
The football is not on to hours yet so maybe time for a bacon sandwich. TTFN

Wednesday, 8 June 2016

No cure for Primary Progressive Multiple Sclerosis

I had a hospital appointment at Canterbury out patients department today. Good trip through to the hospital the roads were very quiet. Parking took a bit of hanging around. I need a disabled space so I can transfer into the wheelchair. It took us about twenty minutes to get a space only to see someone pull up and reverse into a newly vacated space with no hassle, I told him with luck like that he best do the lottery this week. We walked toward the outpatient department and he was met with a torrent of abuse from his dad whom he was collecting. His dad had been seen before time and finished earlier than planned. You can't win sometimes can you?
I had an appointment with Nikki the specialist physiotherapy nurse. Basically there is nothing they can do because all the new disease modifying drugs that people keep telling me are a cure for MS are in fact able to halt it's progression but I  to far gone for them to help me. That folks is the story of my life. I Eamomn Holmes jumped out with his book  I am sure it would read Don you are one unlucky man if it wasn't for bad luck you wouldn't have any luck at all.
Still I have been lucky in love and that is what counts. Maybe one day there will be a cure be it stem cell therapy or something else I may not live to see it but MS will one day be a curable disease. I can remember once reading a book about Irish Navvies in the Victorian era digging railway tunnels and cuttings and the main characters favourite saying was There's a good time coming but we may not live to see it.
I must say having Multiple Sclerosis is a bit like that I am getting older and my condition is getting worse but the Day of the cure is getting closer.

Monday, 6 June 2016

Sunday, 5 June 2016

Been a funny old week

I am laying in bed writing this thing to recall what has been a funny old week. With Monday being bank holiday it always messes with my brain, it's like when the clocks move either back or forward my brain goes to mush. The Bank Holiday messes me up big time, is today Sunday was a question I asked Heather several times. Then we get that gone and our son George got married on Wednesday. It was just the legal bit day we are celebrating in July so no fuss. A quiet registry office ceremony no rings no photos to mark the occasion. And that was followed by coffee at his now wife's parents and then a meal at the hotel that the ceremony and the blessing  of the rings will take place in.
The sheer fact of getting in and out of the car so many times exhausted me and I spent  Thursday in bed. Friday was a day at home and then early evening we went to Sandwich for fish and chips. Today is Sunday (the real one) and we had one of our daughter's for dinner because their oven decided to break down.
It's now just after eleven and I am knackered. I am not sure where the week went but it has gone and I am looking forward to a bit of peace but Oh no we have a hospital appointment on Wednesday, so much for a peaceful week.