Friday, 27 July 2012

Trip to the Park?

We had a late start this morning and my wife had an appointment so she headed out and I resumed my position as guard to the remote control. I didnt  have time to shower before she left so stayed in my PJ's. Well I didnt feel much like moving when she returned so we had lunch and watched ba bitmore TV and then I finally got round to having my shower in mid afternoon. I had hoped we could go to the park and grab an ice cream but we didn't make it. Even though I had done nought I was exhausted and just plonked back in charge of the remote. MS wears you out doing nothing. My MS Nurse is moving away so I doubt I will see her again she had said she would try and call again before she upped sticks and started her new life in Hampshire but I fear she has gone and I will miss here. The MS society campaigned long and hard for the appointment of specialist nurses to support MS sufferers. I hope she is replaced but in todays economic climate nothing is cast in stone.

Thursday, 26 July 2012

Hot weather and Olympics

I havent moved from the settee all day it is to hot to get upnand move aboutt so I have the perfect excuse to watch all of the Olympics. I am now watching UAE play Uraguay and talking on the phone to Matt about his new Website hundred quid a day. So now I have the perfect excuse for inaction MS and the Olympics.

Monday, 23 July 2012

Now it is too hot

I know I have always got some thing wrong but can I just say it is just to hot and sticky. I am knackered doing nothing. I haven't moved from the settee all day. My youngest grandson has been with us for the afternoon and has been a delight he has been on the laptop teaching his grandma how to play moshi monsters. Multiple Sclerosis seems to affect everybody in a different way but most people suffer in the heat, it just seems to suck the life blood out of my body. I know people generally love the hot weather but don't like it. Keeping cool is the order of the day and I often head for the sink and run cold water over my wrists which seems to be the fastest way to cool me down. I imagine I am not alone in finding the heat uncomfortable and I am so far removed from my previous life as a roof tiler when I would be stripped off and bronzed as I run up and down ladders all day.  I know the MS Society  do fact sheets  about coping with the problems life throws up and they do one for temperature so rather than reinvent the wheel click here for a copy

Sunday, 22 July 2012

Made it downstairs

I am up out of bed, showered and now I am on the settee with a cuppa and some pain killers. I wont be going out today so I am watching Flog It on tellie. I expect the grand children will pop in on their way back from the beach to show me the scars of the day and tell me about what they discovered in the rock pools. I cant get down on the sand anymore so love to hear of the days adventures and tales of monsters of the deep. I hope I will soon be feeling well enough to get out with my camera.

Saturday, 21 July 2012

As always I am in bed

I am laying here in bed with the laptop, as always after the trauma of the last few days my body is saying NO. Multiple Sclerosis messes with your brain as well as your body I now feel crap as well as being crap. I have got all of life's little comforts TV, today's newspaper,telephone etc all by the side of my bed and I have had a 30 minute call from Friends whilst my wife is having a coffee and cake at Westbook overlooking the sea. I am now going to turn off and have a nap bye for now.

Friday, 20 July 2012

Trip to hospital for catheter to be sorted

After all the waiting for the District Nurse it all went wrong.. I had a bleed (the catheter split a vein) so an ambulance ride to Canterbury was the order of the day. The reason for the ambulance is due to the possibility of a hemorrhage. I ended up in A&E at Canterbury Hospital and on admittance The Sister said to the Nurse don't worry with taking his details its only a routine catheter change he wont be here to long.She obviously hadn't read my script as I have been through to Canterbury a few times now and have had to have the catheter inserted by a guide wire each visit. I still stand by having a catheter fitted even with the risks it is worth it for me. My MS means I am very slow moving around and if I had no catheter I would pee myself before I got to a loo. So obviously it has its risks but now I am OK for the next three months. Any how enough toilet talk I never managed to see the Olympic torch yesterday but  my wife and son went to meet out Daughter and little legs our youngest grandson to see the torch as it passed through. I might not of been well enough to go but  I had over one thousand photos to look at, my son is a compulsive snapper.

Wednesday, 18 July 2012

Waiting for the District Nurse

Just another day of my life with MS, I am waiting for the Nurse to change my catheter. She was due on Monday but after waiting all morning my wife called the surgery and found I wasn't down for the nurse. I had been missed, half an hour later the nurse called and said she would call today. Well I am up showered and dressed and just waiting because she was slotting me in she couldn't give a time but at least it is being done. MS has messed my body up and one of the first problem areas was my bladder and the best thing I have done is having a catheter fitted. Initially I was scared of having a catheter but it made my life worthwhile again. I started out doing a self catheter but after a trip to hospital ended up with an indwelling one. All I can say is having at first been set against it I am now delighted as it has given me back my life, so if you are facing a similar problem It aint as bad as it at first seems.

Tuesday, 17 July 2012

Had my paella and a chat about modern art

How good was that I have eaten my food drunk a coffee and haven't left my seat. Dinner was a very nice paella and I didn't do the washing up, its safer that way, last time I washed up I broke 20 quids worth of the best china. My brother phoned earlier and we arranged to link up next week, he and his wife come and visit around once a month and we put the world to rites. But when he comes next week we are set to disagree and the reason is the Tracy Emin exhibition. He visited it last week and told me he thinks it is rubbish. I must admit I was taken aback by the exhibition but had some great conversations whilst there and the art is somewhat simplistic. But is it art my brother said and yes says I. We have agreed to differ but it still leaves the question what is art? Well ask one thousand people and you will get around one thousand different answers. All I know is I enjoyed my time at the Turner Contemporary and will be going back again, the reason being I want to listen to the comments that people come out with. I am no artist and I know I cant draw but my brother thinks he is as he tells me he could draw better than Tracy Emin.

Yep I was right

The sun has gone in so I cant see a  walk on the horizon, not a dry one that is so maybe I will be getting dinner instead. Paella is the buzz word from the cook so  I am not that disappointed. Must remember  to offer to wash up. I am banned from the kitchen but the offer gets me brownie points. Just watching a Chinese cooking programme so I am working up an appetite without getting out of the chair..They are now cooking spring rolls and my mouth is watering ROLL ON DINNER

The sun is out but my wheechair has gone for a walk

Marvelous aint it the rain has stopped and the sun was out a moment ago. Can I get out ? no my wife is on a course this afternoon and both the wheelchair and the scooter are in the back of the car. I can just about make the front gate on my zimmer frame so I am stuck here, whats the odds that by the time she is home it will be raining. Still according to the news the Gulf Stream is set to shift and we are due our summer at last, just in time for the Olympics.I hope it is dry for Thursday so I can see the Torch as it makes its way through Thanet.

Feeling much better thanks

I have had a few days suffering with my bowels which is an ongoing problem that strikes with monotonous regularity. MS affects the body in many different ways and it has wrecked my digestive system along with my muscles in the rest of my body. Multiple Sclerosis attacks the central nervous system and I am no explaining how that works there is so much stuff published I don't aim to re-invent the wheel. I don't know where to start my  story but it ain't going to be about  holes in my myelin. The Multiple Sclerosis Society do a fantastic job both fund raising and raising  awareness of the disease.They offer a whole range of help and can be contacted via the website or by phone 0808 800 8000.

Saturday, 14 July 2012

Nothing to report

I still feel crap, I have spent the day in bed. Our son just came home from work and we had a chat. I am now having a quick look online before I go back to sleep. Normal service as soon as I am up and about.

Friday, 13 July 2012

MS bites back

When I started this blog yesterday I was feeling OKish and last night my bowel problem kicked in and I have spent all day in bed. I wont go into detail but when you cant go I assume the toxins build up and knock you for six. I have been hospitalised in the past and even had septicaemia which was scary, all for the want of a poo. So as soon as I am up and around we can kick this blog into shape. I have got to get better because I want to see the Olympic Torch next week.

Disability and me

Hi I am Don and I just want to say hi to the world. "HI". I am 56  married and have three kids, well they are all grown up but to me they are my kids. The eldest two have kids of their own and our youngest is 22 soon. I have a few blogs on the go but recently I have been reading some poetry by and about disability. I know disability is seen in my different ways. I see men who have lost their legs in Afghanistan doing amazing things, this week a soldier cycled across America and he has lost both legs above the knee he and a team raised five million quid for help the hero's.
Then I ask myself what have you done? Why can you do something like that? After all you have only got Multiple Sclerosis  you haven't lost your legs! I go through all of these thoughts and wonder why. I know why I cant do it but I wonder why I cant ?? I should be able to do something other than sit around all day, I  should be able to walk down the garden or across the room, but I cant because my MS has robbed my body. I used to be fit, as a schoolboy I was picked to run cross country at County level. I never did but that is another story. I was a roof tiler when I arrived on a job there was three tons of new tiles on the floor and they had to go up the ladder and onto the roof , and the old tiles or slates had to come down the same way. No lifts of hoists good old man power and I was that man power.
 Depressing when you think like that, about what you used to be able to do! When I was a baby I used to have a baby bottle and pooh in a nappy. I wouldn't want to do that again but I used to so why do I want to climb on a roof or run round he park? Because I cant? I cant play a Piano but I don't want to do that why do I want to cycle across America or play football with my grandsons. I don't know the definitive answer, The answer a shrink would give or a therapist would come out with. All I know is I want to and I cant  TOUGH PAL GET ON WITH IT. Yep that is about it.Get on with it, the only person who can cope with this crap is me and those around me. My wife my kids my friends help but I don't even tell them what I feel what I really feel, and if you think I am going to poor my heart out on  this blog you are wrong. I aint like that I don't wear my heart on my sleeve I am a man.  Yep a man who reads poetry who loves nature and enjoys life. I am not a woolly tree hugger either I am just an ordinary bloke getting on with stuff that life throws up and this blog is about me.