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?
Two stories using my Travelscoot
I have owned a TravelScoot since 2010. Here are two stories using my Travelscoot. Just in case you didn’t know the Travelscoot is the lightest mobility scooter, has a unique design and is practical in so many ways. Two stories using my Travelscoot It is known affectionately as The Trike. Everywhere I go The Trike […]
Progressive multiple sclerosis treatment
Options for progressive multiple sclerosis treatment are non-existent. If you have recently been diagnosed with MS then there are treatments available to reduce and even stop progression. That is fantastic news but it is too late for so many people. I am one of those people If you have progressive MS then the outlook is […]
Multiple sclerosis is a funny old disease
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 […]
Life before diagnosis of multiple sclerosis
I was diagnosed with multiple sclerosis in 1995 but my journey started much earlier. In 1972, only 18, I was in the pub having some beers with a couple of friends. Suddenly I had the urge to go to the loo but when I went nothing happened. I didn’t think anything of it at the […]
Sometimes I cannot get out of first gear
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 […]
Action packed couple of days in Barcelona
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 […]
Capability for Work questionnaire
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 […]
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 […]
Think about the positives
Too many people with progressive MS suffer in the heat, I know I do. I’m not naturally lazy quite simply I am clobbered by the heat. The energy just drains out of my body and worse if its humid as well. Two hot days and already I’m apprehensive of the summer. I must remember to […]
Penultimate visit for the MS SMART drug trial
My penultimate visit for the MS SMART drug trial was always going to be a very short visit. Replace the old pills with a new set. These will then see me through for the final six months of the trial. I also give some blood, how I hate injections, I even have to shut my […]
The Wife and I flew to Barcelona from Luton airport
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 […]
Stumble fall crunch and wallop
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 […]
I love my Taotronics LED desk lamp
I bought a Taotronics light over a year ago and I have not broken it yet; that is a good start.. It is an energy-saving and eco-friendly lamp. I guess these features make up for the terrible title to this blog so if you have read this much you might read the rest of the […]
Another sponsored walk
Well it’s another year and I am starting to think about one of my annual challenges. I like to have challenges. They have to be achievable and put me outside of my comfort zone. So time for another sponsored walk. The right distance In 2015 I had tried to walk a mile with my rollator […]
Another milestone in the inevitable progression of my MS
Something has definitely changed in the last few weeks. It was not an ‘Oh my God’ moment as in a flash of inspiration. Instead it was an ‘Oh my God’ realisation and it took a few weeks for me to understand. Let’s call it another milestone in the inevitable progression of my MS. Life moves […]
Reasons why I enjoy my Travelscoot
I first saw a Travelscoot in the summer of 2010. Straight away I knew it was going to be the ideal solution for me. By then multiple sclerosis had limited my walking to the extent that I struggled to walk more than a mile. Up until then I had managed with a manual wheelchair but […]
Bed is the only place for you
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. MrsB took my temperature, 38.3 and added. “Yup, bed is the only place […]
Feeling of being flattened by a steamroller
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 […]
MrsB and I went go on a London Road Trip
MrsB 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 MrsB and I travelled into London independently. I arrive […]
Imagine life without multiple sclerosis
Sometimes I like to play a simple mental game. Picture myself going up a flight of stairs. Maybe I can see myself walking to the shops and then carry the shopping back home. Drive the car instead of using the bus. I can still visualize myself striding out for a walk with the dog, not […]
MS claims another activity this time a close shave
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 […]
DWP invite me to a meeting, The Department for Work and Pensions
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”. Instead the DWP invite me to a meeting, much more sinister. The basic gist was as follows The […]
Sometimes I want a bit of stress
We can all recall moments when stress has got the better of us. Moments of bad stress might include road rage, trolley rage, package rage and even computer rage. All caused by heightened anger or frustration. Sometimes I want a bit of stress. Sometimes I want a bit of stress Stress like this lasts for […]
Is liberation and freedom just a Botox away?
On Wednesday 1st Feb I went to Queens Square to receive Botulinium Toxin or Botox injections into my bladder. I had wanted the injections for over two years. Life with a badly behaved as well as irritable bladder is no joke. I had learnt a lot of techniques to make life with this handicap easier. […]
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 […]
Red Telescopic Anti-Shock Hiking Walking Stick
This is a simple and sturdy Red Telescopic Anti-Shock Hiking Walking Stick. It is telescopic so you can also use it as a walking pole. It has a non slip handle that means it is easy to hold it as a walking stick. There is strap that you can put round your wrist so you cannot […]
Who knows where the time goes?
Back in the day I used to get up just after 7, help my wife get the children up, have breakfast and be at work by 9. Nowadays I get up by 8.30 and I’m not downstairs eating breakfast until 9.30. That was all 20 years ago Who knows where the time goes? It’s not […]
MSitis and the story of the forgotten catheters
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 […]
I wake up every night to visit the lavatory
I saw my MS consultant for the annual visit in November 2016. He asked me if there were any changes since my last visit to the clinic. I said to him “Now I wake up every night to visit the lavatory and have a tiny pee”‘ I wake up every night to have a pee […]
How to have a happy Christmas dinner
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 […]
Every morning its four sticky FES electrodes
Every morning its four sticky FES electrodes. I must put them on my left leg. Two go onto my thigh and two go just below the knee. I started using the FES two years ago in December 2014. I estimate that I have taken the sticky electrodes off about 720 times and put them back […]
48 weeks so I am almost half way there
I started the MS–SMART trial on January 7th 2016 and I take the MS-SMART pill twice a day. Its now 48 weeks so I am almost half way there. This two year trial is looking at 3 different drugs to find out if there is some neuroprotection in any of them. 48 weeks so I […]
Why multiple sclerosis makes me anxious
Multiple sclerosis is a scary disease. It’s progressive and unpredictable. As it progresses you become less capable of undertaking physical activities. You are very aware of its progress. It is no great surprise that sufferers are apprehensive of what the future holds for them. This uncertainty is often the cause of stress and anxiety. Why […]
Going away for a short break
Going away for a short break used to be so easy. The hardest part was deciding where to go. The wife and I would finally agree on a place. From then on it was a simple process. Throw a few clothes into a suitcase, grab a book, car keys, wallet and the cheque book and […]
WorldvsMS challenge and The Amsterdam HACK
The WordvsMS campaign is an initiative that had been setup to give a voice to people with Multiple Sclerosis. The campaign has asked people with MS to list their challenges in everyday life. Three challenges were accepted from 103 that were submitted A weekend in mid-November was selected when groups of people were invited to […]
Finally I think progress is being made
A couple of weeks ago I wrote a post expressing my frustration with trying to get Botox treatment for my bladder. If you missed the post and would like to read it then please click HERE. Yes, I was unbelievably frustrated. Overnight the hospital had shunted my appointment from the next day to March next […]
