Diary of a Man with MS
Started in June 2016. Diary of a man with MS is a sporadic report of my life with MS. There are so many ups and downs, twists and turns. Sometimes I think it is worth telling other people about them.
Sometimes I want to keep the story to myself. None the less this whole website is a story of my life especially the tab ‘Living with MS’.
Diary of a man with MS
MS is another piece of baggage that can make the emotional roller-cosaster ride of life even more exciting or should I say daunting as well as frustrating.
An after thought
I have divided the diary section up into years that way it is easier to see what happens and when. I think this makes it more logical.
Unless I am careful this website is going to get too large and unwieldy. Maybe it is there already. Who knows?
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 […]
The Wife and I went up to London to see Iolanthe, a Gilbert and Sullivan Operetta performed by the English National Opera (ENO). It was a fantastic performance, bit frothy but we both enjoyed it. You’re probably thinking that we are rolling in money and with rather aristocratic tastes. Nothing could be further from the […]
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 […]
Everyone who has progressive MS has their own unique set of difficulties. The issues can’t be papered over, they are with you day in, day out, all day and every day. I have one visible problem, mobility or balance and an invisible problem, my bladder. Of course I’m always looking on the bright side of […]
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 […]
Enjoying life, it is the reason to get out of bed each morning. Okay I do have a few problems but hey who doesn’t? I’ve had multiple sclerosis for over two thirds of my life and now I’m medically retired. I’m still learning the art of getting the best from my life. The biggest game […]
Access and facilities for physically disabled people are needed today and why ever not? It would be so unreasonable in this day and age to exclude the physically disabled from our activities. From my experience disabled access is turning into a tick box exercise. Remember disabled access is not a tick box exercise. Disabled access […]
I recently attended a one day seminar on ‘paying people who receive benefits’. Typically these people are service users. How can I condense an intense six hour seminar into 500 words? Not easy, so here are a few important points. Paying people who receive benefits is not straight forward. The rules are complex. Also the […]
I have been a member of Toastmasters for several years. The first Toastmasters competition for me and I had reached the second round of the Toastmasters humorous table topics competition. Toastmasters humorous Table Topics competition Table topics, you either hate ‘em or love ‘em. Just make an impromptu unrehearsed speech on a random topic lasting […]
Multiple sclerosis is a funny old disease. No it is definitely not funny ha ha. Trying to get my head around continual progression ain’t easy. There are always changes and it catches me out. I just get the hang of what’s happening then there is a bit more progression. Multiple sclerosis is a funny old […]
We can all have good days and bad days. People with Multiple Sclerosis seem to have more bad days than good days. Just at the moment I’m not sleeping well. During the day sometimes I cannot get out of first gear. It is sooooo frustrating. It is an invisible symptom. Just at the moment I’m […]
I flew out to Barcelona for a couple of days. I took The Trike with me as one does. No, I was not going on a holiday. It was for a meeting with RADAR-CNS. A research project wanting to develop ways to measure Long Term Conditions using wearable devices and smartphone technology. I was there as a […]
Every once in a while the postman delivers a letter and I think ‘Uh oh this could be trouble’. On the front of this letter in big black letters I was told ‘IMPORTANT INFORMATION THIS IS NOT A CIRCULAR’ and it was ‘PRIVATE & CONFIDENTIAL’. The really important clue was the sender, printed on the back […]
When I am going on holiday I start at point A, have my holiday at point B then return to point A at the end of the holiday. In this case it was a five day city break in Barcelona. The Wife and I flew to Barcelona from Luton airport. What can I say about […]
Monday evening We had finished watching episode 5 of Line of Duty. No spoilers I promise. Program finished and we were done. All that was left was to clear up the room and toddle off to bed. The Wife had taken the glasses through to the kitchen. All I had to do was switch off […]
Thursday 30th of April arrived I felt decidedly second-hand when I woke up and it went downhill from there. I felt as if I had been rejected by the local rubbish dump. Eventually I retired to bed very early in the evening. The Wife took my temperature, 38.3 and added. “Yup, bed is the only […]
Do you remember a blog I wrote a month ago? The Department of Work and Pensions (DWP) summoned me to an interview. I arrived at the appointed hour and came out 30 minutes later feeling as if I had been mauled by an angry lion or flattened by a steam roller. This will definitely not rank […]
The Wife and I went on a London road trip on Saturday 18th March. See the Hockney exhibition at the Tate Britain and then on to the Coliseum to see Pirates of Penzance. It’s always the other little events that make the day interesting. The Road Trip The Wife and I travelled into London independently. […]
I have suffered from multiple sclerosis for more years than I care to remember. Quite how I have managed to live this long has been a big surprise to both me and The Wife. Life has been a series of close shaves. Far more than I would ever want to admit. Diagnosed with MS in […]
The postman delivered a buff brown envelope on the 7th Feb. The Wife gave it to me. The return address was DWP, PO Box 585, Belfast. Straightaway I said, “Oh this is something about my disability allowance”. She made me open it. It was dated 1st February 2017. The basic gist of it was as follows. […]
Saturday 7 January 2017 and five of us go up to London to see The Dresser, a play starring Tom Stott and Reece Shearsmith showing at The Duke of York theatre. It was a great production, loved it but not so keen on the disabled loo in the theatre. Horribly cramped, in fact not enough […]
The problem is how to have a happy Christmas dinner. I’m the one who needs to take things gently,. Pogressive MS, this dreadful disease makes me clumsy and inept. I can easily fall over or lose my balance so it is vital that I spread the work over the day. That’s the theory, if only […]
There are days when living with MS is really not too bad and there are days when it is awful. There are even days when it can be exciting. This has been a week when I have gone through all of these emotions and more. I even broke my Leki walking stick in a dramatic […]
There are decisions I must make every day from the moment I wake up. I have to make a simple decision every morning when I get dressed. The result depends upon the mood I am in, how I feel when I wake up. It is my decision and it affects me for the rest of the […]
Two reasons why living with multiple sclerosis is no laughing matter. Saturday 24 June I always look forward to Saturday. Not because it’s the end of the week. Not because it’s the start of the weekend. It’s the day I go to the local bakery buy bread and Chelsea Buns. Last Saturday came round and […]
The weeks just roll on one after the other and they seem to pass in the blink of an eye. Almost the longest day of the year and it seems to have crept up unannounced. It’s not just one week morphing into the next it’s one month morphing into the next. The time only passes […]
Diary 12 June 2016 Here’s something to think about. It’s a quote from Mary Kay Ash, an American businesswoman and founder of Mary Kay Cosmetics. “There are two things people want more than sex and money; recognition and praise”. In case you were wondering the Travelscoot that was for sale has been sold. I have […]