I knew that heat or fatigue made my condition markedly worse and so I applied – and was approved for – a blue badge. This was no big deal for me as I know it is for others, if anything I felt relief as my commute was getting me down. I wrote in my blog from the platform at Manchester Victoria 

“I’m really feeling my symptoms. I’m at the end of a working week so feel a bit wiped out. I’m all over the place actually and got a bit paranoid that the security guard on the door thought I was drunk”.

So with symptoms of fatigue and a blue badge as motivation, I spoke to work about parking in the disabled bay a couple of days a week. It was a relief to kiss goodbye to my commute on public transport as it was starting to become untenable with my unpredictable bladder. 

My friend Za celebrated his 40th with a surprise birthday party in Altrincham. Elaine and I went and as was now customary, I offered to drive rather than drink as by now, it was starting to disagree with me. I didn’t care anymore about being drunk – I was wobbly enough anyway – so during the celebrations I played the ‘MS card’ with my friends. Seeing an empty table by the toilet I decided to sit there and invited my friends to join me. They did so and I felt like a disabled person ‘proper’.

I should mention that I had deployed my home spun ‘MS card’ on a number of previous occasions. It was a means by which I assumed ‘control’ of any given situation, whilst sometimes actually profiting from it; I worked a reduced week, got out of social events that I didn’t wish to attend and more. And whilst I thought that I was ‘cheating’ at life, these interventions were sometimes now needed (whether I acknowledged this or not).

In April, my childhood friend Neil Tague, completed the Greater Manchester Marathon. Commenting on his Just Giving page he said, “I’m running the Greater Manchester Marathon for Multiple Sclerosis Society because of a midlife crisis/our mate Tom/free jelly babies”. He posted on Facebook after the event, “Eh Tom we bloody did it man. A grand raised, so cheers everyone for support, sponsorship, kind messages etc. Run was fun up to 16 miles and then a whole world of pain. Off to the pub, I may be some time.” 

A couple of events followed which were hindered by my waterworks. The first one was a birthday party for Caitlin which we held at a trampolining centre in Manchester. The event itself was brilliant and the kids loved it. What was not brilliant was the urinary frequency and urgency that I experienced. Luckily I got away with it with a strategic wee behind the car and a nearby toilet inside. 

Elaine and I travelled to Scotland to liaise with our wedding venue and chat to the photographer. We were given a sample of the wedding menu but the Castle’s hospitality surprisingly didn’t extend to an overnight stay. So at the Holiday Inn down the road, we enjoyed drinks in our hotel room. I passed out at some point. Not that I’d had a skinful but that I was very poorly with Multiple Sclerosis. There’s the MS Card again!

In Summer, Elaine and I travelled down to Poole for one of my oldest friends Hoylie and his partner Fran’s wedding. After the happy ceremony and during the meal, I gulped the wine down like water. This resulted in my becoming so pissed that I couldn’t stand up and ‘required’ the assistance of Rebecca, Vicky and Caroline. I remember my mate Mo hammering on the toilet door to check that I was ok and another friend Za, sitting me outside to sober up. As Martyn said after his Mexican-themed house party the following day, “Thank you for being part of the best two days of our lives. Muchos, muchos love and tequila xxxx”. It wasn’t the tequila that did me, it was the table wine!

Soon after and regrettably, Elaine and I split once more as I decided to move into a flat in High Crompton, just round the corner from my old house. The place was on the first floor and I even helped my dad carry the fridge freezer up the stairs although tellingly, I asked someone else to help me back down after my tenancy finished.

The place seemed perfect – I could even wave to Molly during her playtime as it overlooked her school playing field. However my time at Primrose Hill Court was short lived due to loneliness – a memory that I have of the place is getting stoned, on my own, and writing gobbledygook on my blog!

Caitlin wrote a beautiful and honest appraisal of my condition and her feelings at this time;

“Positives – independence at an earlier age, matured earlier than my years, learned the value of life and have come to appreciate the importance of life and everything in it. Negatives – doubted family structure and my role as a daughter, drifted from my dad as of lack of education, stress of illness and dad not being able to do as much as he used to. Questioning myself – and whether the world is really a good place, been some really dark days. Felt like friends wouldn’t understand with anger and hatred at the world.” I love you so much Caitlin, and am incredibly proud of you XXX

I decided to move into my parents’ house – or more specifically their garage – as they had converted the space into a ‘garden room’, complete with toilet and posh bifolding doors. I set up a bed, wardrobe and desk and carried a large shelving unit in but was punished for my actions by falling backwards through the garden gate. It was full of spiders although they were friendly enough. I had to retire to the house as Autumn arrived.

My bedroom was on the first floor and I started to notice difficulty when climbing the stairs. Luckily, my parents had bought the house from an elderly lady who had fitted double handrails.

mentioned this to Dr Talbot in November. He wrote to me with his clinical opinion, “I am concerned that Mr Llewellyn is entering the secondary progressive stage of MS. Unfortunately none of the currently available disease modifying drugs are effective for disease progression and clinical trials are ongoing.”

So that was it. The next day, I went into work, arranged a meeting with my line manager – and quit. She was kind and encouraged me to take some time away and think about my decision but my mind was made up. I had received news that I’d been dreading for so long.I felt motivated to spend the rest of my life doing things that I felt passionately about.