Having MS teaches you a lot about yourself, society, and the people around you
Ian, diagnosed with primary progressive multiple sclerosis last August, tells us about his journey with MS and offers some advice for others in a similar situation.
I’m Ian, a self-employed Project Manager. I’m 53 years old, 6 foot 2, 17 stone, and shaven headed. I have a few tattoos and I probably drink too much. I walk with a stick and internal rage gets me through most days. You’ll have a picture in your mind now. Hopefully I didn’t come out of it too badly.
As I’m unlikely to ever meet you I just wanted you to know something about me.
Oh, and I was diagnosed with primary progressive MS (PPMS) in August 2017, which was disappointing…
I’d been having issues for a number of years. Severe chest pains, dizziness, exhaustion, and pins and needles in both hands, to name a few. Being a man, I had elected to ignore this.
Then things seemed to develop for the worst. Pins and needles in both hands (OK I’d had this for around a year and had been largely ignoring it), I began tripping a lot (I’d been walking upright for 50 years without issue), and I fell down the stairs at work on three occasions, much to people’s amusement.
So I went to the doctors.
A brief exam, a few questions, and a referral to a neurologist. With private healthcare I was seen within a week by a specialist in Parkinson’s disease. More questions, another exam, and an MRI of my brain and spine (during which I fell asleep).
Two days later (private healthcare is a wonderful thing) I’m sat with the neurologist again, looking at scans, with my attention being drawn to white blobs. “Do you know what you’re looking at?” “No” I replied, “But I’m hoping you do”. “You have MS. You’re very unlucky. It’s usually women. I’m very sorry”.
Having since done more reading on the subject of MS than I would deem healthy, it would seem I am indeed unlucky. Out of 60-odd million people in Britain, there are approximately 100,000 with MS. It does however get better than this. I have since been referred to a neurologist who specialises in MS. He advised me I have PPMS which only 15% of the 100,000 have. Having played with the numbers (I’m weird like that) I believe the odds are something like 1 in 4000. No lottery ticket that week…
I have since learned that my severe chest pain was undiagnosed MS hug. The cuddly sounding problem that feels like you have broken ribs and have combined it with a heart attack.
My exhaustion, that I’d put down to being 50 (much to the amusement of the neurologist), was MS fatigue and, regardless of how much sleep I got, would stick with me until I felt like screaming with frustration.
My regular tripping and stumbling was down to MS related ‘drop foot’ and spasticity of my leg. At the end of a day, my muscle control of this foot is similar to flying a remote control plane that drifts out of range. You can see it, but nothing you do is going to move it.
So, from being a strong 6 foot 2, 17 stone man in the prime of his life, 10 months later I am walking short distances with a stick and currently shopping for a stair lift. My MS means I have a constant level of disability that is always progressing. My neurologist is surprised at the rate of deterioration but, as I said to him, I like to be different.
Having MS teaches you a lot about yourself, society, and the people around you. I am very lucky to have my partner Lynne who’s constant support and positivity is awe inspiring. My daughter and her three children are a constant reminder of what is important in life. NHS staff, including MS nurses and consultants, are frankly amazing. The support of certain friends has been invaluable. Knowing a builder who can fit handrails in your bathroom was a life saver, literally. The benefits system, speaking as a member of the self-employed community is, at best, a source of frustration and, at worst, not fit for purpose.
So, some ideas for if you’ve been visited by the MS fairy:
- Take your time to digest your diagnosis. You were fine the day before it so you're fine now
- Get as much information as you can about your illness so you can self-manage and help the people who are helping you
- The MS Trust is invaluable, as are MS nurses. Keep in touch with both
- You may well feel desperate, ill, annoyed, tired, pain, frightened. This is normal
- Some websites and or people will spout the most irritating drivel you can imagine. It’s very hard to consider physiotherapy when you can’t get down the stairs or out of bed
- People do not know what you’re going through and will say inappropriate things. This is because they don’t understand what you’re going through. Either educate them or ignore them. Up to you
- Don’t keep struggling with things. Struggle until you find something to make it easier. If it’s easier to walk with a stick, then walk with a stick
- The Blue Badge scheme is a huge help. Get one
- Tell people you have MS. I’m guessing, outwardly you generally look OK. People don’t help people who look OK. If your legs hurt, or you can’t walk as fast as your companions, speak up. Those people that slow down are your real friends.
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