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

Multiple sclerosis and the double whammy

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 and for every disability there is a consequence. I call […]

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4 comments

I am disabled but am I green enough?

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 […]

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4 comments

Hidden disabilities of my MS

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 […]

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8 comments

Firing on all four cylinders

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 […]

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2 comments

I can now see light at the end of the tunnel

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 […]

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10 comments

I’m full of good intentions

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 […]

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6 comments

More experience of sitting down gardening

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. […]

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0 comments

I do feel isolated by my multiple sclerosis

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. I do feel isolated by my multiple […]

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12 comments

Hottest day of the year

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. […]

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2 comments

I’m talking about Uhthoff’s syndrome

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. […]

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6 comments

Methods I use to manage my multiple sclerosis

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 […]

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2 comments

Some of my MS disabilities are invisible

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 […]

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4 comments

Physically disabled in Athens a survival guide

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 […]

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2 comments

Medical retirement 75 months ago

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 […]

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0 comments

Invisible disabilities are the hardest

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 […]

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0 comments

Is physical exercise good for me

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 […]

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0 comments

Multiple sclerosis is a vile disease

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 […]

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4 comments

Five day city break in Seville

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 […]

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2 comments

My long journey with multiple sclerosis

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 […]

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0 comments

My first job interview since 2012

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 […]

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9 comments

Making an annual wish to improve my life

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 […]

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0 comments

Simple things I now need to understand

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, […]

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0 comments

Detected definite changes since last year

Detected definite changes since last year

It is extraordinary how one year rolls into the next at an ever increasing speed. At a quick glance I am exactly the same as 12 months ago. I’ve still got MS, who saw that one coming! I still ride The Trike and I’m still just as busy. Now scratch beneath the surface. I have […]

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2 comments

Call it advanced multiple sclerosis

Call it advanced multiple sclerosis

Soon I’m going to be 64 so not quite as nimble as I was. Age doesn’t stop me having a social life. I go to the theatre and museums in London. Meet friends in one of the numerous coffee shops in our town. I go to the supermarket, buy the food and then cook dinner. […]

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1 comment

Doing Pilates sitting down

Doing Pilates sitting down

Pilates is a stretching and exercise program focusing on core muscles. These are the ones in your stomach. Keeping these muscles healthy does help my balance and walking. To put it bluntly this means I don’t need to use a wheelchair just yet. It’s only too easy to say “Oh I need to take some […]

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4 comments

I am physically disabled but I still travel

I am physically disabled but I still travel

When I was working I travelled all over the world then medical retirement kicked me in the groin. Life as I knew it suddenly changed. Occasionally I still get the urge to travel, this time me and The Wife went to Australia. I am physically disabled but I still travel. Cut the stress I have just […]

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7 comments

Three vignettes from the last few days

Three vignettes from the last few days

A change to the usual post; three vignettes from the last few days. August was supposed to be a quiet month but there has been something happening nearly every day. Summer is now over and the days are getting noticeably shorter. The ‘to do’ list was supposed to shrink, instead it has grown. Looking ahead Next […]

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2 comments

Over 30 degrees Celsius this summer

Over 30 degrees Celsius this summer

The summer of 1976, was so hot that I got a good suntan in Aberdeen. A student job, I was working outdoors every day. In Hertfordshire the temperature has frequently been over 30 degrees Celsius this summer. At times  it’s been far too hot, stuffy and airless for my own comfort. Let me explain Don’t get […]

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2 comments

I have discovered sitting-down gardening

I have discovered sitting-down gardening

I have had to discover a different way to garden. It is because I am disabled by MS and things had to change. It is now ‘plastic-lined’ boxes type of gardening. No more digging holes with a spade or bending over to pull up weeds. I have discovered sitting-down gardening.  Perhaps it discovered me, who […]

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4 comments

One Hell of a Day

One Hell of a Day

There have been some cracking days this summer. Yup, it has been a bit hot but I have really enjoyed getting dressed in just a T-shirt and a pair of shorts. Like all good things there will be an end. I had a bit of a hiccup on Monday 9th July. It really was one […]

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2 comments

A progressive disease is one that gets worse

A progressive disease is one that gets worse

A progressive disease is one that gets worse. Perfectly true but for an awful lot of them it’s in an unpredictable way. Will it progress quickly or slowly? Is it predictable? What are the consequences? Inevitably this leads to a lot of anxiety, sometimes even depression and worry. Doesn’t this sound like multiple sclerosis? I […]

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8 comments

Aid4Disabled is nominated as an MS blog

Aid4Disabled is nominated as an MS blog

I’m wary of emails from people or organisations that I have never heard of. I receive an enormous amount of spam email. Its when they begin “Hi Aid4Disabled”, I look no further and press the delete key. Imagine my surprise when an email told me “Aid4Disabled is nominated as an MS blog”. How did it […]

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5 comments

Walking round the supermarket with a trolley

Walking round the supermarket with a trolley

When I started taking Fampridine the physiotherapist was insistent that I take more exercise. I mentioned that I go to the supermarket every day and do the shopping on The Trike (3 wheel light-weight mobility scooter). Her eyes lit up, “I know what you can do” she said. “This is an idea. Walking round the supermarket […]

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10 comments

MS for over 70 percent of my life

MS for over 70 percent of my life

I am 63, born in 1954. I have lived with Multiple Sclerosis for 45 years, that’s a scary thought. It started in 1972 but I was not diagnosed until 1995. It morphed to secondary progressive or advanced MS in about 2000. I took medical retirement in 2012. I have had MS for over 70 percent of […]

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8 comments

Does my disability make me worth less?

Does my disability make me worth less?

So Christmas is done and dusted for another year. Decorations have been taken down and put in the loft. The Boy Scouts have collected the tree and recycled it. We’ve even managed to empty the fridge. Now wouldn’t it be lovely if I could just pack up my MS and store that in the loft […]

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13 comments

Just another little fall

Just another little fall

In the kitchen I must use a stool on wheels. The Wife and I were cooking supper last Sunday and everything was getting a bit fraught. Not enough pairs of hands to prepare everything. I moved forward on my stool but a wheel got stuck in the grouting between two floor tiles. The stool stopped […]

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3 comments