Tuesday, 30 October 2012

Been to see the Doc

I am pleased to say my tests all came back clear and I am OK. Well OKish I am still sleeping for England and need some more tests. I am no nearer to finding out whats wrong but I can say I had a great Sausage Sandwich at Pegwell nature reserve. That made me feel better.

Monday, 29 October 2012

Early to bed

Yep must turn in early as I am off to the doctors tomorrow. I am due to see the doc for the results of my blood tests to find out why I feel so tired all the time. Watch this space.

Friday, 26 October 2012

Feeling crap

As the week goes on the worst I feel, I am tired and living on pain killers.  And I dont know why so I hope the blood test show something up. The tests are bound to show something up because I MUST HAVE SOMETHING WRONG TO MAKE ME FEEL THIS BAD. Roll on next tuesday  then I might get to feel better.

Tuesday, 23 October 2012

Exhasted by trip to doctors

I did get to see the doctor yesterday and I also managed to have a blood test. I never knew those tubes they use are vacumed to certain pressures to take out specific amounts of blood. The nurse took three tubes of blood and I am due back to see the doctor to discuss the results next tuesday. Well the trip out exhausted me and when I woke this morning I knew that I couldn't face the day so after a cuppa I snuggled back down and was soon asleep for another six hours. I know many will say what a waste of a day but I say why should I struggle through a day feeling rough when a few hours out makes things more bearable. I have to plan ahead to make sure my energy levels match my requirements, it is hard but at least I can be involved in family life if I get my planningg right.

Saturday, 20 October 2012

Been out for a hour

Well after more than two weeks I have managed to get out of the house. Having spent most of the day asleep I succumbed to going out for a drive and am now back home exhausted. I need to be able to go out as I want to go and see the doctor next week. I know that any surgestion I have something wrong with me will be put down to my MS. but if I dont ask how can I get anything done? so wish me luck I expect I will need it.

Saturday, 13 October 2012

Birthday wishes

Been a busy day, sleep this morning but a non stop stream of visitors this afternoon. I have a good show of birthday cards and pressies to celebrate my 57th year. My grandsons have all been to see grandad but I am still in bed so not to much chasing around. I am now heading back to "the land of nod" night all.


Well you know what the man who has everything has got for his birthday from the last post, a chest infection. I am sitting up in bed (that is an improvement) opening my cards, I cant go far I have become like a baby, if you put them down and walk off they are still there when you come back. I cant wait till I can graduate too being a toddler !

Friday, 12 October 2012

Now it is a Chest Infection

See what you get when you jump to conclusions. I thought Catheter change + not feeling well must equal a urine infection. How wrong was I? I am now the proud possessor of a chest infection, such joys. I went to get out of bed this morning, just on to the bedside chair. I missed and ended up on the floor, our neighbour came to the rescue. We called the doctor out and he came  and diagnosed a chest infection so now more antibiotics. I would like to feel better for my birthday tomorrow but I doubt I will. I have added a link to a Lung Cancer site well worth a read with some tips for keeping the big C at bay


Thursday, 11 October 2012

Infection stops play

I was exulting the virtues of my catheter but they do and cause problems. Since my last post I have been in bed with a urine infection and it is no coincidence the two must be linked. I have been in bed since last Thursday the day after the catheter was changed. I know the human body is a very complex machine but why o why cant I have one that works, the slightest whiff of an infection and my body shuts down. I am typing this as I sit up in bed, my legs refuse to bend which makes bathroom trips fun. I spoke with the doctor yesterday and he changed my tablets so lets hope they work and soon coz its my birthday on saturday.


Wednesday, 3 October 2012

Catheter change

Yep three months are up so another trip to Canterbury for my catheter to be changed. I am knackered now it all went OK but had to be done twice as it was not draining. I have to go to Canterbury urology department to have it done by camera and guide wire. Over the years my urethra has been damaged and left me with false passages leaving me unable to have the catheter changed in the community and needing a trip once a quarter through to Canterbury. I am seeing my specialist next month and hoping to get a suprapubic catheter fitted. I will let you know how things go but it should make my life a bit easier. I am extremely pleased with my catheter but the suprapubic should make things even better still. My Multiple Sclerosis has made a mess of my body but I try and keep it at bay and with the help of tablets wheelchairs stairlifts etc. I try and lead as full a life as I can so the message from this post is much the same as those posters that seem so popular at the moment "Keep Calm and Carry On" Life is for living and I urge you don't give up, all these things I have mentioned are not nice but they are just tool. Tools to help us lead as normal a life as we can!

Sunday, 30 September 2012

More Bacon and Brie

You will all be thinking I live on bacon and brie rolls, we were there again today. Yep Pegwell was the destination of choice by our son. He had the weekend off  and when asked what he would like for breakfast he was like his father and we ended up at the dog walkers rest eating my favourite snack. The dog walkers were there in force and I spent our time there laughing at the antics of dogs and owners, I laughed especially loud at a pair of black Scottie dogs who were inseparable and the look of sheer terror if either could not see the other, they really amused me as they played on the green. Well we had our food annd coffee and the best bit for me was I didnt have to get out of the car and be pushed around in my wheelchair.

Thursday, 20 September 2012

Bacon andd Brie photo

Hmmm have you ever done it? We came out in search of a bacon sarnie and a coffee and the world went down hill from the moment Heather closed the front door. She immediately  had that heart sinking feeling, she had left a key in the door inside and far from reach. No matter how you try you cant grab a key with a bent coat hanger through that little aperture designed for the postman to deliver the bills. We called a locksmith see my other blog Promote Thanet for the story. We eventually got en route for a bacon roll about an hour later. I was starving when we got to Pegwell nature reserve but when Heather got in with the rolls I was determined to have pictures  to make you all envious of my lunch I took several pictures before we tucked in. I spend a lot of time messing with my camera and playing with the results on my laptop so can you imagine my disappointment when I realised the I had left the card out of the camera and all my piccies were indeed memories, but ones that only I had.So yesterday was not that successfull but I did enjoy that Bacon and Brie roll.

Tuesday, 18 September 2012

Disability ramps trial

Had a very nice coffee this morning with friends in Whitstable well Seasalter. We went there to pick up some ramps to use whilst putting the scooter into the car. Andy a mate of more years than I care o remember has no further use for them so we took them to try, shame I didnt  have them last week  to get into my daughters. I will let you know how we get on with them.

Monday, 17 September 2012

Always listen to your wife

Last Sunday my wife was going to visit our daughter and I said ok I'll come wih you. Get in your wheelchair and I will push you she says, NAHH I will come on my scooter, She relplies you wont make the steps it will be easier in the wheelchair. No says me, you wont get in the door she says, I will says me. Well I went on my scooter see the results below. I am still nursing the bruises


Tuesday, 28 August 2012

Scooter versus wheelchair

I used to love running and as a parent I would think nothing of taking my kids on long walks. After a few miles they stop moaning! When I was diagnosed with Multiple Sclerosis nearly twenty years ago I was still able to walk. I was told off for running when I was in for diagnosis by a staff nurse at Brook Hospital, she said I need to use my energy wisely and running would wear me out, she said stay fit but don't exhaust yourself. I spose it was about the best advice they could give, you find how you are going to react to exertion by doing stuff, I now know that I need to rest up after a trip out. I needed a couple of days recovering from my recent trip to the beach (I was asleep virtually 36 hours) So I got to thinking about wheelchair v scooter.
It sounds silly but they are completely different. I know one has a motor so no need to mail in.I don't have an electric wheelchair just a hard work one and I also have a scooter which is battery powered.I use them both very different. When I first needed a wheelchair I used to not want to go in it so I found I was missing out on things and I was depriving my friends and family of my legendary wit. I stayed at home and brushed up on my getting fed up skills. After a while I was very good at being fed up and people were escaping my legendary wit so I braved being pushed around. Obviously it aint the same as walking you have to end up where people take you, by that I often ended up in ladies lingerie when I was thinking I would rather be in men's wear. You are at the whim of the wheelchair pusher and you need to say MENS WEAR NEXT PLEASE because if you don't they wont know what you are thinking and you can come back from a shopping trip having done nothing for yourself and the only person you can blame is YOU. If you follow football you will know that communication is key to getting stuff done.
 A scooter is completely different I have had one of nearly ten years and it goes where I want to go so I can end up looking at tools in B & Q rather than curtains  or read the labels on all the exhibits in a museum and catch up with everyone at my pace. I can travel for about ten mile on one charge of the batteries which is a long way for someone to push a wheelchair so it means a full day is possible and less fatigue for all concerned.I hated my wheelchair when I first got it but it keeps you in touch with the real world. A scooter opens up a whole new world and gives you back a whole lot of independence. I have a wife who is five foot nothing in her stocking feet but who punches far above her weight so getting the scooter in the car is down to her andd she breaks it down to to managable components, there are all different scooters available, mine was the biggest we could get into the car so check with a mobility shop to make sure you can manage it with your life style they are very expensive so get it right.

Friday, 24 August 2012

Beach trip

I am having trouble keeping up with my blogs and seeing grandchildren plus life so appoligies for lack of updates. I have been to the beach at Westbrook Bay where we have had a beach hut for nearly thirty years. Due to the MS I have been unable to get down the steps and on to the sands for a couple of years or more but all that changed this week. Thanets main beaches all have one of these sand buggy wheelchairs which I can recommend.So now we have no excuse

Tuesday, 7 August 2012

Diet what Diet

I have been too engrossed in the Olympics to do much blogging. I did manage to upset a few people on my Promote Thanet blog by mentioning Manston Airport but the rest of the time has been taken with sport. It may seem strange that someone who can hardly stand unaided should want to watch able bodied people running around. I would say it is totally normal and ask why not. These athletes are at the peak of their game, they have trained to be the best they possibly be and for me are an inspiration. I always try and do my few exercises but over the last ten days I have tried a little harder. I know I am never going to run ten metres let alone 100 metres anymore but all the time I am sitting around I am not burning any calories and all I do is put on weight. I try and watch my weight, I eat less now than I ever have, it would be easy to stuff myself but that would be a disaster as I am a recipe for obesity. Disability could be an excuse for putting on the pounds but I try as hard as I can to keep my weight down. When I was working I used to be on the run all day long and burning the calories, it didnt seem to matter what I ate but now it is a different story. I have never been on a diet in my life but what I do know is as close asI can get to dieting without starting a diet.

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.