Blogging MS

Living with MS has a dateline. Who knew?

I was officially diagnosed and became disabled seventeen years ago, almost eighteen, when my daughter was born. The date of diagnosis was c. a month or two later, when vision disappeared, it all went black due to optic neuritis and as a new mum, I begged my gp to give me something to enable me to care for my daughter safely.

Moving on a few weeks and my husband and I are back seeing the neurologist being jolly about how well we look as new parents. This neurologist had been present during my pregnancy as I had been victim to unusual symptoms which had seen me hospitalised after strange Bells Palsy like paralysis and numbness. My pregnancy being eighteen years before had been fraught… would I make it, would the baby? And I was a premagravida (older mum) so nothing was ever sure.

But nothing went in to my befuddled new mum brain like being told that optic neuritis confirmed MS. Because I had stopped breast feeding my body wasn’t “protecting” me from the virus that caused episodes of MS, or it was believed some mothers (me) were unlucky enough to have worse symptoms while my body prepared to look after baby…

We had this jolly chat about this life changing diagnosis and didn’t really ask any of the right questions. I was told I “shouldn’t” have got steroids for it, as they are reserved for “serious” episodes. But I considered looking after a newborn half blind to be serious… it was the start of confusion and utter disbelief.

We didn’t leave the appointment with the same joie de vivre (time away from the baby, nappies and feeds) as we went in. The neurologist was kind of cross I had been given steroids as they should be ‘saved’ for serious episodes. And I’ve not had them much since. My condition has been stabilised by seriously expensive treatment which thus far is provided by the NHS.

Drugs for everything?

Injectable Rebif then Tecfidera tablets and now HRT as well. GPs gave me this with caveats of the awful possibility of osteoporosis or the return after five years of breast cancer. (I had that too. How lucky am I?) The neurologist gave me something for my bladder last month. (I could look up the name but ask me if it would help…)

So nearly eighteen years later and it’s my abnormally normal life to understand confused spells, speech not making sense, fatigue and insomnia as the messed up major symptoms, and dizziness and vertigo (the jelly legs at the top of some heralded vista or viewpoint we’ve held hands to visit) or the multitude of invisible symptoms as my new ‘normal’. I have been on different DMDs or DMTs (disease modifying drugs or treatments) which have cost the NHS an eye watering amount. Some were only allowed to be prescribed in the last few years, so things are moving forwards and drugs have been designed for other conditions and have proved to help MSers along the way. A treatment, not a cure, but MSers are hoping that cure is in the pipeline. Close but maybe not close enough…

Other things

I’ve also had to understand neurodiversity and question whether it’s part of me or just something I’ve passed on. A question for the time when the computer can put it all  together? We’re getting closer… just like the cure for MS which was mentioned as being possibly ten years away in that dingy room eighteen/nineteen years ago in Hemel Hempstead Hospital.

But the dog needs fed and I just better stop depressing myself with the stuff I have/Id rather forget I have, to deal with. I’m not going to say I’m lucky (I’m not!) but the truth is I have worked out ways of ignoring the worst parts of living with this condition and it’s hopefully not going to stop me.

I just want to BE normal. I never saw this coming! There are lots of seeming widespread neurological problems in the 2020s. Over a million of us have MS. But many have co-morbidities and live with conditions that never had names when I was growing up. The illusive cure is just around the corner but will it cure ALL the many strands of mitochondrial abnormality. Normal? Or not?

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