Living With MS

Life in a MS houeshold

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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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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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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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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Our 40th wedding anniversary

Our 40th wedding anniversary

40 years and still happily married even though multiple sclerosis is the fly in the ointment. The Wife decided we would go away to celebrate the occasion. Somewhere relaxing, not too demanding but a bit of a blast. We decided on a week long holiday for our 40th wedding anniversary. She really wanted to go […]

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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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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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Luton Central railway station

Luton Central railway station

Luton is a large town in Bedfordshire with a population of over 210,000. Luton Central railway station is busy with five platforms and about 12 trains an hour stopping there. Lots of London commuters use Luton Central railway station. Just recently I visited the Luton campus of Bedfordshire University to give a talk to 2nd […]

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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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Have you tried using a Knork?

Have you tried using a Knork?

I have slowly been losing sensation in the fingers of my left hand since late 2017. My writing has deteriorated as fine control has ebbed away, it’s now a childish scrawl. I struggle to unscrew the lids off jars and bottles. Now I am hardly able to twirl spaghetti round a fork. This isn’t right […]

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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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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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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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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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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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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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Oxo Good Grips angled measuring jug

Oxo Good Grips angled measuring jug

Oxo Good Grips angled measuring jug is a new take on an established design. It is a very practical addition to your kitchen. It’s so easy to use. When I want to measure hot or cold liquid I place the Oxo measuring jug on a work surface. Now I can sit down in a chair […]

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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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Flexible walking stick holder

Flexible walking stick holder

Recently a friend wrote to me talking about this wonderful thing she uses to secure her walking stick onto her mobility scooter. “Foolproof” she said. I thought I would test it out and I did not expect to be so impressed. In every sense of the word this is a flexible walking stick holder. It […]

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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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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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Negotiations with the NHS after a UTI

Negotiations with the NHS after a UTI

Within 3 hours of arriving in Seville on 14 Feb I was in a hospital because of a UTI, a nasty bacterial infection. An indwelling catheter was inserted into my bladder; a 6 inch piece of rubber tubing hanging off the end of my willy, it was no fun. A simple rubber bung jammed into […]

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It all began 38 years ago in 1981

It all began 38 years ago in 1981

I was 19 and I started to experience numbness and pins and needles in my fingertips. It all began 38 years ago in 1981. The doctors suspected a trapped nerve in my shoulder, because I carry a heavy portfolio at work. I was an artist’s agent working in advertising for a leading creative agency company […]

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Five fly to Seville and I got myself a UTI

Five fly to Seville and I got myself a UTI

Five of us fly to Seville for a five day holiday on Valentines day. The Ryanair flight left Stansted airport at 6.40 in the morning. It’s a 3 hour flight and it takes an hour to drive there. It was going to be a long day but at least I had a little nap during […]

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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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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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Ways to Help Cope with an MS Diagnosis

Ways to Help Cope with an MS Diagnosis

A guest post from Dizzy and the Dinosaurs. You can visit the blog at dinosaursdonkeysandms.com Ways to Help Cope with an MS Diagnosis It was nearly four years ago that I was diagnosed with MS. And for me it was rather a shock. Before I started acquiring my weird collection of symptoms (have buzzy feet, seeing […]

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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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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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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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My amazing Travelscoot and true independence

My amazing Travelscoot and true independence

Guest post written by Abgail Budd.  I finally accepted my need for wheels in 2014, six years after my diagnosis of multiple sclerosis. I’d been spending time with local people who also suffer from MS. I had struggled with 2 walking sticks but I would miss out on so much due to sheer exhaustion and […]

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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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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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Creating my own social capital

Creating my own social capital

Social capital is happening all the time around us. Reading this blog is social capital. Just being with other people gives you social capital. I expect you’ve already gone to Google and typed in those two words, billions of hits. Now I am creating my own social capital. Creating my own social capital I won’t […]

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Unplanned flight incidents for my Travelscoot

Unplanned flight incidents for my Travelscoot

I think I’ve got a problem sorted then something happens and no amount of planning I do can possibly predict this. I have just returned from a five-week trip to Australia with seven flights. Call two of them problematic 🙁 just unplanned flight incidents for my TravelScoot. My mobility scooter was damaged by an airline twice […]

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Getting air miles with my Travelscoot

Getting air miles with my Travelscoot

I am the proud owner of a TravelScoot lightweight folding mobility scooter. I have my scooter safely on over 75 flights. There are simple rules to follow that will significantly reduce the chances of damage to the precious scooter. Unfortunately accidents can happen. Here are a few simple precautions that you need to take. Getting […]

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