Tuesday, 31 March 2015

Help raise funds for Multiple Sclerosis

I have suffer Primary Progressive Multiple Sclerosis for over twenty years and during that time nothing has been on the horizon for Progressive it has always been Relapsing MS that got the new drugs but now research is underway and needs cash.MS FUNDRAISING

Friday, 27 March 2015

Multiple sclerosis takes no prisoners

I suffer from Primary Progressive Multiple Sclerosis. I have had it in excess of twenty years and although it has won every battle that has been waged I have never given in to its wants from my body easily. I started out being a bit unsteady, at the time I was a roof tiler and that is one job you want to know your sense of balance is the full ticket. Unfortunately I hadn't read the MS instructions manual and ended up being carried in a fireman lift off of a three story roof, that was scary and could have ended up with us both being fast tracked to heaven. Unfortunately a short while later the guy who carried me, he died in a diabetic coma. Diabetes is a killer and took a true mate. I had to start using one stick at first then two this the progressed to crutches then a walker and finally I am in an electric wheelchair. I have had a scooter for over fifteen years because it made life easier at first then became an essential bit of kit if I wanted to go more than about fifty feet from my front door.
This week has been tough because we have had visitors. They used to stay at the house but now book in to the Holiday Inn. Of course I can't keep up with them but I certainly tried. I won't eat out anymore my hand to eye coordination is shot, I end up wearing food. We ate in and had trips out but even that took its toll and my bowels played me up leaving me bed bound for a couple of days. They headed off home earlier this morning and it took them over eight hours to get home to Lancashire. I have hardly moved all day TV or computer has been my entertainment. My MS has said no to even crossing the landing and now I am in bed and a painkellered up sleep is next on the horizon. I have had a great week but I don't think that the next few days are going to be up to much. Never mind Easter is only a few days away now.

Over done it this week

MS has a sneaky way of cutting me back down to size. I have had a great week with our friends visiting I have done a bit more than I would normally do and now they have been in and said their goodbyes I actually feel exhausted. As I said the ms gave me just enough energy to get out and about with the. Admittedly I took extra painkillers and my bowels messed up but we have gotten through to now and I feel knackered. Our daughter has just been in to drop the car back she borrowed our car tonight and when she left she asked am I OK. I am not my usual cheerful self, my body needs rest and now I am in bed can I sleep? Maybe I need a few games of Candy Crush. Night every body, let's hope I win.

Monday, 23 March 2015

Multiple Sclerosis good days and bad days

Often people have said to me oh you have MS you get good days and bad days. They say it as if I just get the odd day feeling a little below par and the rest of the time I am running around. Like a spring lamb. I wish. Yesterday we went out with our friends, we had a fantastic time driving through the countryside stopping so Heather could take some photos of the actual spring lambs. We had coffee in Whitstable and a steak dinner when we got back.I haven't mentioned the struggle to get in and out of the wheelchair the discomfort I endure all day everyday. No it was a good day.
Today has been a complete contrast. Unable to get out of bed today, I slept most of the Day, waking to drink squash and take some more painkillers. This must be a bad day. A monumental effort to get from bed to wheelchair and an ever more monumental effort to get from wheelchair to toilet. Heather administering an enema was great fun. It took three of us to do that. Our friend's run a care home so are used to  it but they are on holiday not quite what they had come away to be doing. The enema never worked oh joy of joys. I am back in bed again Now thinking today's a bad day and even yesterday's good day was not exactly what I would call good. Yes my good day consisted of doing good stuff but I wasn't exactly good just a little less bad. So I am going to answer the next person who mentions good days and bad days with this "no I have bad days and some really awful days" Good days, if only I knew what they were.

Sunday, 22 March 2015

Wonderful Day

For someone who has hardly been out today has been a big deal. We have friend's visiting at the moment and they took us out to Dover we ended up back at the National Trust tea rooms a South Foreland and ate steak and kidney casserole. The shortbread was delicious. Then we followed the coast road back to Margate. A fantastic day was had by all.

Saturday, 21 March 2015

Indigestion wakes me up

Three fifteen and wide awake. Blooming indigestion burning in my chest. I had taken my sleep apnea mask off about an hour earlier so to go with it I had a dry sore throat  from snoring that coupled with the fact of  only two hours sleep I am not doing to bad. It's not all bad I have got to use up my lives on candy crush!  Heather has just made me a cup of tea, love her she saw the light on and comes in to check on me. I could probably go back to sleep now but sheer bloody mindedness won't let me. Indigestion ain't beating me, I will stay awake to spite myself now, I am that type of guy. We have friend's visiting, they are staying at the Holiday Inn the fact I am exhausted will make for an interesting day tomorrow.  Well an interesting later today is more precise.  By the time I am up and showered all will be fine!
I take landlords for the reflux/indigestion plus some other stuff before meals and peppermint oil yet I still suffer. Gavescon tablets and liquid work but recently my GP prescribed Peptac because it is less expensive than Gavescon. It goes right through me  and for someone who has mobility issues that's not a good combination. Oh the joys of Multiple Sclerosis, when I get better I will write a story about it. I still wake up sometimes thinking I an OK, just that fleeting moment and then I remember, I can't walk, I can't even get out of bed unaided but for that nano second I had forgotten. The joys of life with primary progressive Multiple Sclerosis. Mind you some mornings I wake up exhausted, I explain to Heather I was running cross country or climbing up on a roof  in my sleep. She just looks at me and gives me that knowing smile. Oh well I must have another life on Candy Crush by now. Wish me luck I got down to only needing one jelly earlier.

Sunday, 15 March 2015

Catheter change makes me weary

Yesterday was no different to normal, I knew I was due for my catheter to be changed and I got slightly nervous. Over the years I have had a catheter I have ended up with trips to hospital it's perhaps  no wonder that it disturbs me. But since having my supa pubic catheter I have had no trouble. Where as with the ureatheral one I had a urine infection virtually every month and even ended up with scepticemia and was very ill and hospitalized for several days, the supa pubic catheter has been fabulous. No trips to hospital no infection to speak of so why do I still get nervous come time to have it changed? I put it down to  nerves. I wouldn't have said I was nervous but since my MS has got hold of me I am a nervous wreck.
You must have heard the joke "what lays at the bottom of the sea shaking? A NERVOUS WRECK" well that's me nowadays. I can't help it when you have had as many mishaps as me, I can fall over just because of a draught. My knees are black and blue from my last fall and a few other places to. So maybe I deserve to be a little nervous. I tell myself to man up, it'll be alright. But I am exhausted by the time the district nurse's been. It all went straight forward, no problem. But I slept all afternoon, knackered doing nothing and today I have been pretty useless as well. I watched some footie on telly but I can't say I remember much of today either. It's just passed me by. Blooming Multiple Sclerosis it's not just my body it's wrecked my mind is buggered as well.

Thursday, 12 March 2015

Catheter being changed tomorrow

What an easy thing ! One phone call makes all the difference. The district nurse's are busy, rushed off their feet in fact so I always try and stay home when my catheter is due for change but last time they didn't come unroll ten days after the due date. This time I said sod it, it was in the book for yesterday and I had stayed in by today with the chance of a bacon sarnies I was out the door like a whippet, well almost if whippets can control a wheelchair that is. I went out had said Santos came home and was sitting in the dinning room contemplating a nap and the phone rings. District Nurse and she is coming to change it tomorrow. SIMPLES as that meercat would say

Tuesday, 10 March 2015

Day feeling off my game

I couldn't put a finger on it but I have struggled to get through the day today. I have not been out and I have just sat and moped all day not actually feeling sorry for myself but I just wanted leaving alone. Now I am in bed I feel like crying! Don't know why but maybe I am coming to terms with the fact the trip to Kings hospital was a waste of time and nothing else is on the treatment front. Maybe up my antidepressant dose after cutting it back down. I hurt as well. After my Madonna impersonation my arms have ached my hips hurt and my shoulders are very painful.
I don't know what it is but it wants to go away.

Monday, 9 March 2015

Sunday, 8 March 2015

sleep after a tiring few day

 A Tiring week? Well maybe a few days of doing stuff has caught up with me. We went out for a sandwich at Sandwich, and yesterday we had Kentucky in Tankerton. We got to the drive through at Chestfield and then park up overlooking the sea at Tankerton Slopes. You may think lazy git all he does is goes out and sits in the car and gets fed! Which is the long and short of it, I don't get out of the car, I won't eat out in restaurants or cafes any more. I end up wearing more than I eat and if I am to be the star of the show for others to laugh at me I want paying then they can laugh all they want, but they ain't getting the show for free. So comes today and you might think he is just plain lazy but I was knackered.
The sun was steaming through the dinning room window and the radiator was on and I captured some Z' s whilst Heather went to see the Grandson play football. She got back and had some errands to run and shopping to get so convinced me to get into bed. When she returned she wanted to pop and visit our friend in Margate hospital so she woke me and gave me the chance to get up or go back to sleep, no prizes for guessing I stayed in bed. So that's pretty much my Saturday. Hope you all had a good day.

Friday, 6 March 2015

Constipation kicks in after my fall

Great I had a fall eight days ago and have been hurting ever since. When you hurt you take pain killers. I took pain killers and when I change any medication my bowels remind me how fragile the tight rope I walk is. I had still been taking  the Movicol every  day and using the Micro Enema's but no movement. Then last night before bed I finally went. It was exhausting I went to bed completely and utterly knackered. MS is a funny old disease I was in bed exhausted and unable to sleep. Then  about 1:30 am I  drop off to sleep. I wake up at 03:30 and toss and turn as best I can until 7:30 am and I manage to doze until just before nine when Heather comes in to make tea and get me out of bed.
Constipation is a huge problem for people. Every day on television we see adverts for people with slow metabolisms Senna this and fibre that. I see the NHS has much information on the web and this is because of the size of the problem. So many people feel under the weather because of a problem many dont wish to talk about. My advise  is do talk ask your chemist speak to your GP ask you mates. You can surprise yourself help is at hand, you dont have to suffer in silence. 

Wednesday, 4 March 2015

Sandwich in Sandwich

Ducks in a Muddy Puddle

Ducks meeting Pigeons

Bank, on the other side is the river


Today has been very bright and sunny, so much so mid morning Heather suggested a ride out. Pack both binoculars and camera and headed out. We planned our usual bacon sandwich and a hot chocolate at Pegwell Nature reserve and made a bee line for it. We never had a plan B in mind so when we turned up and the snack van  was missing we had to make plans for one fast. Plan B turned out to be sitting watching Ducks and Gulls on a flooded bit of grass in Sandwich. Heather popped into the Coop and got a sandwich and a bottle of water whilst I too dozens of out of focus ficture of the squabbling ducks. A Mum and Grandma  fed ducks as a little girl wondered where he playground had gone and why were ducks now swimming  on the spot she usually played ball.
Sandwich is a great spot and now the Pfizer have reduced their prescience and it has become the Discovery Park the area has seen lots of new firms relocate to the area. Earlier this week I got into a twitter conversation with the newest firm to relocate to the facility. Howell and Hicks are a print web design company  with a twitter account  and a Facebook account 
 Social Media evidently is the way forward. I  imagine all the firms  at Discovery Park are down and with it when it comes to Social Media. Discovery Park are on Twitter and here is a link to the website
I always try  and link to peoples websites as it promotes their business and gets the word out there. My Promote Thanet Blog was created just for that purpose, to PROMOTE THANET and seeing Sandwich is in the Thanet South area.  The seat which is being contested by Nigel Farrage in the election.
My camera has a card that needs a different reader so until I can sort out the pictures imagine what a duck swimming in a giant puddle looks like. All other pictures pinched from the web.

Self explanatory

Discovery Park Sandwich Kent

Monday, 2 March 2015

Multiple sclerosis sucks

My MS is odd I had a fall last week and spent a lot of time on the floor. My efforts to get myself up off the floor exhausted me and yes I had some time in bed recovering. That's not unusual, if we go out for a walk it exhausts me and by walk I am in the wheelchair and Heatheris walking and pushing  me then I need to recover. But what was unusual this time is my muscles. Here I am four days later and it is only now they are starting to hurt. My knees took the brunt of my fall and head they are grazed but the bruising has only appeared today. My hips hurt like mad today but why didn't they hurt yesterday? I have always had a good threshold of pain but I am getting weaker as I grow older. My body strength has deteriorated I couldn't pull myself up and I always prided myself on being fit, but now I am fit for nothing.
Multiple Sclerosis is often in the news for different scientific break throughs but it always seems it for the other types of MS. Break throughs for Primary Progressive never seem to be in the headlines and whilst I don't envy other sufferers their respite I do wish for once PPMS got some good news.

I did a Madonna

What I can here you say? I did a Madonna, I fell over. I fell gracefully in the bathroom picking up a bit of errant loo paper. Silly really, I knew I wouldn't be able to get it but I tried and I failed. I have bruised knees to prove it and pains in the rest of my body to remind me just how stupid I actually am. When Madonna falls  it's headline news all over the world but day in and day out people like me cope with the vageries of illness that stops them in their tracks. I spent an hour unable to get up just laying on the floor in that hour I did manage to get from bathroom to landing. I did turn round 360 degree' s hurting both hips  and a shoulder trying to stand.
It wasn't until Heather came home she had been accompanying our youngest daughter to Ashford hospital for emergency ear treatment. She normally only goes out for short trips. It wasn't until she got back that I stood a chance of getting off the floor. Out come the electric camel a special piece of kit that uses pumped air to gently raise me up. It had and still has an air leak. It raised me about three inches. What do we do now. Call upon the goodwill of a neighbour. Normally we would call our son but he was in Brighton for a meeting. I was eventually raised and deposited into bed and I knew I was exhausted and despite trying to get up had to spend two days in bed recuperating from doing a Madonna. If any of the daily paper's want my story call my agent. I am going to go back to bed I am exhausted just thinking about it all.