Patrick’s Blog
I’m Patrick and I run this website. This is a rambling series of articles based around my life disabled with multiple sclerosis (M)S & how I cope. It became so big that I have had to break it down into small groups which you will see on the right hand side.
I am an optimist and like to see the happier side of life. I hope this comes through in these articles on my life with MSNo one likes a person who does not smile
Managing MS fatigue, an overwhelming inability to continue
Managing MS fatigue is a long story. As recently as 1995 I played badminton singles in the local sports centre, after just half an hour I was physically exhausted and very sweaty. I’ve now hung up my badminton racket, personally I blame multiple sclerosis,. I still suffer intense exhaustion but no sweating. Walking very slowly […]
Now I have twitchy legs at night
There are hidden joys of multiple sclerosis. Its one long story of new challenges and survival. My latest problem, twitchy legs, only surfaced recently. It’s an uncontrollable twitch, starting in a muscle but culminating with my leg definitely twitching and repeats itself again and again. For some reason the fun only starts after the sun […]
Blogger’s block or possibly bored with lock down
20-June 2020 It’s been over 3 months since we were all catapulted onto a different planet. My day-to-day existence rules change every day. You as well? Subtle changes every day. Surely me, a person disabled by multiple sclerosis, should have no problem finding topics to write on and post them on my website. Nope its […]
My exercise routine at home that ticks a lot of boxes
7 June 2020 I am proud of myself. Bit of an arrogant statement but what the hell. Every day always starts with a quick burst of aerobic activity. Enough to get my heart beating faster. Remember I’m badly disabled by multiple sclerosis, I cannot walk unaided. Is this exercise routine at home good for me? […]
Busy doing nothing, I want some variation
5 May 2020. So here we are, over six weeks into the lock down. Forty-two times one day has morphed into the next. The only variation is the weather. I am busy doing nothing. I have a garden, I can see trees and everyone is friendly so I am lucky. Sadly I am not keeping myself […]
Enjoying our garden during the lock-down
24 April 2020 Well, isn’t the weather glorious, but it looks like some rain is due any day. I’m enjoying our garden during the lock-down. In this time of chaos l am able to quietly watch it evolve. More by good luck than design there is always at least one plant flowering in the garden […]
I must ensure exercises become a routine activity
18 April 2020. The coronavirus lock down started at the end of March. Our lives were then thrown into chaos. Everyone had to find a new routine, a new rhythm and this includes me. I made a simple promise to myself. I need to take more exercise and I must ensure the exercises become a […]
Suffering from consequences of panic buying
20-March 2020. People are buying huge amounts of essential food and clearing supermarket shelves on a daily basis. I get out of bed at about 8.00. It takes me nearly an hour just to get dressed. Factor in breakfast and 90 minutes of the day is gone. At this stage of the morning some supermarkets […]
Further handicaps because of MS
I have a problem with expecting too much from myself. This in turn hurts me more than it helps me. I am always looking at my life and trying to simplify everything I do but it is harder than it seems. The biggest problem with advanced MS is how an ordinary activity is suddenly […]
Chemistry in the kitchen
Cooking food is simple and easy for me plus everyone enjoys food cooked by somebody else. I have also rediscovered baking, just four or five basic ingredients and you create a cake. Incidentally I love raw cake mixture, but the cooked product is sooo much better. It was after a recent cake disaster that I […]
Disabled and can’t walk unaided, welcome to my world
The pernicious creature multiple sclerosis affects me more and more as time goes by. I do have two legs but one of them is virtually useless. My brain cannot send messages to all the muscles in my left leg. Also, my left leg does not tell my brain everything that it has done. Messages cannot […]
Discounted theatre tickets for disabled people
Almost every British theatre offers discounted tickets for disabled people. Basically the carer gets in for free. I have seen excellent productions as well as extremely good actors via this scheme. This opportunity of discounted tickets for disabled people is available all over the UK. If you can show that you are disabled then your […]
My last ten years with multiple sclerosis
In the last last ten years I have changed from a man in full-time employment to a man with very visible, full-on, multiple sclerosis. Until 2011 my multiple sclerosis was affecting me physically but my thinking and problem-solving skills were still good. Employment was always somewhere in Europe as a contract computer analyst programmer or […]
Another way to dry my phone
I dropped my mobile phone down the loo, accidentally of course 🙂 . To be more precise it fell out of my back jeans pocket and sank beneath the surface; a trail of bubbles gave its position away. I fished it out, gave it a quick dry with a towel and then put it into […]
Multiple sclerosis and the double whammy
Multiple sclerosis has taken over my life very very slowly. That sounds so much better than ruining my life very very slowly. It all started in 1972 and remained in the shadows for thirty years. The disease is now grown up, it’s matured into SPMS. For every disability there is a consequence. I call this […]
I am disabled but am I green enough?
I suffer from advanced multiple sclerosis so I am disabled. I am disabled but am I green enough? Can I balance my disability with being an ecological friendly person? Sometimes I can and I do make planet-friendly choices but there are many other areas that are a total car-crash. In the latter case I have […]
Hidden disabilities of my MS
My MS diagnosis was 25 years ago. Little relapses were always followed by a remission. I was working and leading a perfectly normal life or so it seemed to an outsider. In 2000 my remissions stopped. The anxiety, bladder and walking problems of MS became permanent and they also slowly got worse and worse. An […]
Firing on all four cylinders
I am now recovering from a particularly nasty bout of man-flu. I was in bed for two a half days with a sneeze rate of anything up to 10 per hour. Add to this a temperature and I felt super grotty. I was not firing on all four cylinders Going out into the fresh air […]
I can now see light at the end of the tunnel
Someone told me my last couple of blogs were not optimistic, Guilty as charged. In my defence I say that advanced multiple sclerosis is a gritty disabling disease. It is always there, in your face and in your head. There is no escape from it. The good news is that in my head I can […]
I’m full of good intentions
I remember the happy blue sky of summer, do you? Now a large black cloud fills my sky. Where are those happy days? I’m full of good intentions but there is always an excuse. The black cloud will soon blow away. Multiple sclerosis is to blame for the black cloud. Now I have no motivation […]
More experience of sitting down gardening
Standing up gardening has one big drawback for me. I will fall over and I do. Digging a hole with a spade is not an option. In fact The Wife has banned me from that activity but secretly I’m quite relieved. Instead I do sitting down gardening, it is what it says on the tin. […]
I do feel isolated by my multiple sclerosis
As my MS gets worse my world gets smaller and smaller. My MS and I cohabited quite happily for 35 years. Okay we had the odd problem but basically we had a healthy relationship. About 10 years ago the impact of MS on my life started to grow. Now I do feel isolated by my […]
Hottest day of the year
It was the day that people with Multiple Sclerosis dread, total wipe-out by heat on Thursday25 June, the hottest day of the year. All motivation left my body as if by magic and my energy reserves evaporated. I felt as if I was walking through treacle. Life on that super-hot day was an endurance test. […]
I’m talking about Uhthoff’s syndrome
The mercury in the thermometer will creep up over the summer. Some days it creeps higher than other days. Whilst it remains below 20 I am more than happy, 21 or 22 and I need to be careful. If it gets over 23 then I can only venture out occasionally. I’m talking about Uhthoff’s syndrome. […]
Methods I use to manage my multiple sclerosis
Multiple sclerosis is a very unpredictable disease and tough to live with. I think we all know that; I certainly do. MS has now been a part of my life since 1972 but I was not diagnosed until 1995. Here some methods I use to manage my advanced multiple sclerosis. Everyone has their own way […]
Some of my MS disabilities are invisible
Multiple sclerosis rules my life. Even when I think I am on the home run it will stick out a tentacle and trip me up. You too as well I guess. I have obvious disabilities such as walking, in fact I cannot walk unaided. Some of my MS disabilities are invisible. People will not know […]
Physically disabled in Athens a survival guide
I am on the Patient Advisory Board for the RADAR-CNS project. This is an exciting and ground-breaking project and rather than me explaining it, I suggest you go to their website which is HERE. This year their annual conference was in Athens and I was there for four days in mid May. If you are […]
Medical retirement 75 months ago
I took medical retirement in January 2012. That makes it sound like a voluntary decision so let me reword that. Medical retirement grabbed me 75 months ago in January 2012. For me there was no option. 🙁 A permanent holiday It sounds absolutely idyllic. I did not realise what an earth shattering process this was […]
Invisible disabilities are the hardest
Multiple sclerosis comes in all sorts of packages. There is no ‘one size fits all’. When I read the newspaper I look very healthy. As soon as I stand up everyone can see I’m seriously disabled. This is the flip side of MS, the invisible disabilities are the hardest to understand. Few would realise the […]
Is physical exercise good for me
I believe that exercise is good for me and essential to having a good quality of life even despIte suffering from aDVANCED ms MS. It is an excellent activity to re-connect the mind and body before or after a long day of stress. My MS stops aerobic exercise, getting all hot and sweaty. Even just […]
Multiple sclerosis is a vile disease
MS smothers you, wraps you up in its tentacles and replaces energy with fatigue. I can no longer do things that other people take completely for granted. Even worse there is nothing predictable about it except it just gets worse and worse and worse. It can even lurk in the body for years before its […]
Five day city break in Seville
I’ve never been to Seville before and the idea of a city break in February appealed to me. Of course I had to take usual paraphernalia that a disabled person needs when going away. We had found a hotel in Seville with an accessible room, crucially a walk-in shower. As soon as I had booked […]
My long journey with multiple sclerosis
This is the story of 45 years of my life living with multiple sclerosis as we both grew up. I did not piece the whole story together until I took medical retirement in 2012. My long journey with multiple sclerosis. My long journey with multiple sclerosis It all started in 1972 and I was almost […]
My first job interview since 2012
Recently I received an email from a charity that wanted to interview me for a zero hour contract position. I have advanced multiple sclerosis and I cannot walk unaided which I disclosed on the application form. This was going to be my first job interview since 2012. My MS blew the last one in 2012 […]
Making an annual wish to improve my life
Back in the day I would make a resolution every New Year’s eve. Its such an easy thing to say when I’ve drunk a glass a glass or two too many. Everyone else has made one so why shouldn’t I? Now I’m a bit softer in the stomach and wiser in the head so I’ve […]
Simple things I now need to understand
A few years ago I kidded myself that I could still do the things just like I did in the noughties. Simple things I now need to understand. “Don’t worry, I can do it” I shouted enthusiastically as I was starting jobs like cooking supper. It would all begin swimmingly. Suddenly, out of the blue, […]
