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‘Has anyone told you that you have MS?’

‘Has anyone told you that you have MS?’ was the first time I have had to personally think about Multiple Sclerosis. What the heck! The statement came out of the blue.
My Mum was diagnosed with a non-progressing MS when she was in her late 50’s. Mum gave up working in London and stopped driving, effectively starting retirement early. I never gave a thought that MS would be coming my way.

The journey started several years later. Strange tingles in my arms and legs. Numbness. Muscle spasms, eyesight issues, and suddenly not being able to understand things that I previously found easy. Colds hit harder and lasted the whole winter, mood swings, memory difficulties, bladder and bowel issues – bowel spasms which come out of nowhere, and I often couldn’t get to the toilet in time, and still can’t today. Imagine being 42 and having those problems in front of your partner and kids, feeling ashamed, embarrassed and very angry.

Being a stubborn man, for a long time I ignored my partner’s nagging to go get it checked out. I had a pre-existing mobility issue from childhood which my doctor at the time said was growing pains (but was about to be a seriously dislocated hip, or slipped upper phemeral epiphasis), and so I thought the physical symptoms I was experiencing must have been because I had two worn out hips and a knackered back.

Life was busy, I’d left university and was just starting my career in the construction industry – I didn’t have time to be ill.

Around 12-18 months after those effects, I noticed an issue with my eyesight deteriorating. I’ve worn glasses since a child, so being referred to an eye specialist was not out the norm.

The optician referred me to an eye specialist to get a scan and on my second visit to get the results, the doctor walked in, said ‘Has anyone told you that you have MS?’, realised this was news to us from our shocked faces then just left the room. My partner and I were speechless, we had no idea how to respond to that, so we just left with a promise my GP would be in contact.

By now our first daughter had arrived. A joyful little bundle of non-stop crying and screaming but that’s a whole other story! She had her own additional needs. We moved house (another stressful life event) and had to get a new GP too and carried on as normal trying to forget about the possibility of having MS as there were more important things to think about.

I started pushing my new GP for the results of my eye scan from the eye specialist years before. Suddenly things moved quickly. Numerous neurology visits, MRI scans, various tests including two visits to London for a spinal procedure which involved numerous nurses/doctors practicing their techniques on me due to my unusual back and hip alignment and a ruined shirt walking through London looking like I had been stabbed in the back.

The result? I did indeed have MS, more specifically, Relapsing Remitting MS (RRMS). The results found four areas of scarring on my brain and two along my spinal cord/nerves.

Cue quickly diminishing mental health, deteriorating relationships with my partner and a young daughter who was now presenting symptoms of Autism.

With all the ‘good’ news being received, I nosedived into a blackhole of self-doubt, self-pity, fatigue and let my inner bully take over. I ended up causing rows and arguments daily with my partner, sending her horrible messages from the train/work along the lines of ‘I might as well just end it all’. I didn’t want to be around my daughter as I couldn’t cope with an innocent 3-year-old girl. I tried to push them away so they wouldn’t have to deal with me. I tried to take my own life a few times, and nobody understood what I was going through – after all, I looked okay from the outside, no visible signs of illness or injury – work didn’t care, my family were oblivious even on the few occasions when I did try to talk, no one helped. The rock in my life, my one constant saviour just wouldn’t leave or let me end it and set her free.

The blackhole just kept getting deeper. I went on long-term sick leave and resigned from my job with nothing to walk into. I was desperate.

Treatment for my RRMS was offered. I started on the daily injections but after a while the injection sites became hard and very sore, more importantly they had little effect on the symptoms I was suffering.  Plan B, I was offered Alemtuzumab, a chemotherapy medication designed to “reboot” my nervous systems and stop the damage done by the MS, not curing me but pausing the symptoms. Treatment was given in two parts over two years. It came with risks and a commitment of monthly blood tests for many years to come, but life was becoming more challenging as baby number two was on the way, and it was worth taking that chance.

Thankfully it worked for me. I have not presented any new physical symptoms for several years. I do live with my constant mental health demons, the effects of the original brain and spinal nerve scarring (short term memory issues, problems with body temperature modulation, overwhelming mental and physical fatigue, muscle spasms). But I’m not giving up yet. My long-awaited hip operation has given me some mobility back. Thanks need to go to my dad who kindly sped up the process and paid for my new hip. This has meant I can rekindle a childhood love of mountain biking. A saving grace contributing to a more positive mental wellbeing.

Just as I was getting the hang of being out on a bike again the steroids given to me to help speed up my recovery after relapsing caused protein build ups in my eyes. Joy of joys!!! I have now had both lenses replaced and a fully detached retina which involved looking through oil bubbles for months, but fingers crossed, my vision is better than I can ever remember it being. Colours are bright and distinct; I only need reading glasses now – a positive light in the dark.

As I type this, I’m now 42, still in a black hole trying to get out but I’m working full time, have two wonderful daughters now heading for early teens and an incredibly supportive partner who still puts up with the absolute rubbish I throw her way. We have made it out the other side, but MS with all its foibles continues to be a challenge for all of us. This has been my life with MS, a life you don’t hear spoken about, or see on TV, or read about in the media.

Around 130,000 people in the UK have MS, and 7,000 people are newly diagnosed each year. It’s three times more common in women than men, while everyone’s experience with it is different. Many MS sufferers are effectively disabled, often wheelchair bound, and have difficulty walking, running, and enjoying everyday things.

Monday 30th May is World Multiple Sclerosis Day, and for more information on MS, please visit https://www.mssociety.org.uk.

#Multiplesclerosis #Reset4Inclusion #DisabilityInclusion

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