Multiple Sclerosis
Moving house, negotiating hurdles
Negotiating hurdles is one way to describe buying and selling the family home. We had lived in the house for 25 years, selling it was a difficult but obvious decision for many reasons. Negotiating hurdles When MS forced me into medical retirement in January 2012 me and MrsB knew it was only a matter of […]
Do you know I have smouldering MS
I have smouldering MS. Multiple sclerosis first struck in 1972 when I was only 18. My bladder let me down on several occasions in the next 10 years. I didn’t speak to anyone about this problem, young men do not like going to the doctor. Big mistake, but I doubt if anyone would have made […]
3 traumatic injuries to me
Visits to hospital Multiple Sclerosis was the the one factor that joins these 3 traumatic injuries together. None of them could be described as fun but hey, I survived. Sepsis December 2013 I have used intermittent self-catheterisation to empty my bladder since 2005. this visit to hospital occurred in 2013. I had just received a […]
My life with MS and invisible disabilities
My life with MS is turning into a balancing act. Not the high-wire type of balance, just making sure I don’t do two things simultaneously. My life is now just one job at a time, no more walking and talking. Invisible disabilities rule plus they control my life. Nobody knows I have invisible disabilities unless […]
Time to move into a more suitable property
Me and MrsB decided its time to move into a more suitable property. Multiple sclerosis and age have finally caught up with me. Our Victorian five bedroomed terraced house is beautiful, but not at all practical. The local council built a wet room a few years ago. It made washing and going to the loo […]
My own cannabis experiment
I’ve had MS since 1972 and it has had a huge impact on life. It now affects me in every which way. The wonderful NHS prescribes drugs that will ease my symptoms so every day I have to take a cocktail of pills. Time to look at other solutions. I decided to do my own cannabis experiment. […]
I forget what I was going to tell you
I’ve had too many ideas on blogs to write over the last few months. Some frustrations, some positive experiences and even some actual thoughts. But when I start to write a blog there is a crisis that needs my full attention then I forget what I was going to tell you. I’m ten Recently this […]
My interview on Tring Today – Friday 18 February
Bored on Friday 18th at lunch time? Why not tune into Tring radio on Friday between 12 and 1 and listen to my interview as a guest on Tring Today. Tring Radio is a local community radio station run entirely by volunteers. Two people started the station two years ago at the start of the […]
My MS journey begins, 24 years before diagnosis
Some events are very significant, and the emotional impact is unforgettable. Think of marriage, death of a spouse or parent. I will never forget that moment in 1996 when the consultant uttered the words “You have multiple sclerosis”. Many years later I realised my MS journey started 24 years before my diagnosis. My MS journey […]
Medical retirement sounds relaxing until it happens
Imagine I’m 10 years younger, a mere 56 but still with advanced MS. Faced with the prospect of returning to the office or still working from home then the idea of early retirement is exciting. The children have flown the nest and grandchildren are imminent. Would a city break in Europe suit me and The […]
My sewing skills are tested in the Under and Over trial
Twelve weeks to test my sewing skills. Another one of my MS stories. That old friend MS is now slowly destroying the nerves I use to control the fingers of my left hand. Find out how I discover my sewing skills have deteriorated. My sewing skills There was a time, many years ago when I […]
2021 MS Awareness Week or living with my multiple sclerosis
It’s the annual chance to make people more aware of the problems of living with multiple sclerosis. Yup, its the MS Awareness week. Multiple sclerosis is different for everyone, The handicaps, niggles and disabilities all gang up and form your own personalised version of MS. I have my own unique selection, but hey-ho things could […]
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? […]
Adapt my MS normal to Covid 19 isolation normal
9 April 2020. Right now the chips are down. I need to find a new life that includes Covid 19 isolation. I must not allow depression or anxiety to intrude or overwhelm life. We all need to come up with a new strategy or routine. I must change my MS normal to Covid 19 isolation. […]
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 […]
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 […]
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 […]
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 […]
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. […]
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 […]
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. […]
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 […]
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 […]
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 […]
Multiple sclerosis is such an unpredictable disease
I am getting my life back onto an even keel. Botox is working, Fampridine looks like it’s a winner and spring is in the air. Just when I think all is looking hunky dory and everything is under control ,BANG, something hit me in the solar plexus. Multiple sclerosis is such an unpredictable disease. It […]
#ThinkHand Campaign for Advanced Multiple Sclerosis
I attended the launch of the #ThinkHand campaign for advanced multiple sclerosis by Barts MS Health at the Bankside Gallery in Southwark on Thursday 22 February. I have advanced MS and this is a big step in the right direction. My multiple sclerosis I can still walk, but it is a very slow walk and […]
Will the lumbar puncture hurt?
I have now had four lumbar punctures. A small sample of fluid is taken from the spinal cord to measure the activity of multiple sclerosis. Think lumbar puncture and my hair stands on end. The idea of a syringe going into my spine and thinking ‘will the lumbar puncture hurt?’ are two concepts I don’t like […]
The Website aid4disabled.com
There are numerous multiple sclerosis (MS) websites. There are those run by large organisations and there are ones like this one, run by one man and his dog. I hope this one is different and makes you curious. The main aims of the website Aid4disabled.com are to provide two different services. The two main functions […]
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 […]
Expert by Experience
I have never liked the term ‘Service User’. Would I rather be called a ‘Client’ or a ‘Patient’? No I don’t like them either. I think the term ‘Co Worker’ is okay but not perfect. I do like the idea of Expert by Experience. It is a positive description. In the video just below I […]
Totally unrestricted and able to move easily
There was a wonderful time when I had felt totally unrestricted and able to move easily. Even on the fateful day in 1995 when the consultant diagnosed me with multiple sclerosis I was just a normal guy. Multiple sclerosis, I had never heard of it. I had to look it up in an encyclopaedia and […]
What would I like returned to me by Multiple Sclerosis?
What would I like returned to me by Multiple Sclerosis? I’m talking about basic abilities, ones I have lost for ever. The list is far too long to bore you. In my dreams there is only I would like back. I’m sure it’s something lots of people take for granted. Right now I am really […]
