I was wandering around the supermarket yesterday and accidentally went down the Baby aisle.
With the last 18 years of bringing up The Teenager fresh in my mind since taking him to Uni, I felt a bit of a pang.
I gazed upon the rows of feeding cups, teeny tiny outfits, creams, ointments and the inevitable ‘How-To’ books.
Someone once said to me, when I was heavily pregnant and reaching for my second ice cream sundae, that babies don’t come with an instruction manual; probably the best piece of advice I’ve ever had.
In a way, having a child and being diagnosed with MS are weirdly similar, and having been through both (and survived to tell the tale), I can quite confidently say, ‘MS does not come with an instruction manual.’
In the beginning, I thought it did. Similar to being pregnant, when I was diagnosed, I was bombarded with stories (both good and bad), told to do this, told to do that, take this supplement, eat this raw bark by the light of a full moon. I read endless articles online, mostly grim, and I envisaged a similar future. The few positive stories involved wildly expensive treatment and/or jumping out of a plane for charity.
When I had The Teenager, I constantly referenced books, other people, forums, random strangers – ‘why won’t my baby stop crying?’ Whilst the deluge of advice was welcomed, it wasn’t helpful. Just like MS, every baby is unique. What worked for me (draping my baby over my arm and rocking him in tune to The Verve, a completely accidental occurrence), didn’t work for others. We found our own groove through trial and error.
MS has a virtual cornucopia of symptoms and none of us are the same, just like those tiny week-old humans. You can read as much advice as you can, you can pin your hopes on a miracle cure, just like I did to cure The Teenager’s colic. Nothing worked until I found my own solution to our own unique problem.
Being diagnosed is about finding out what works for you. Your symptoms will nudge your life in different ways, to cope with various symptoms, be it fatigue, cog fog, mobility and all the rest. When you seek advice, take what you need from it and discard the rest. It’s your life and your life with MS is not the same as anyone else’s.
I’ve found my MS groove, just as I found my Baby groove. I don’t drape myself over anyone’s arm, but I’ve re-calibrated certain aspects of my life which work for me, but which I would never foist upon anyone else.
I know when to sleep, when to do paperwork, when to shop, when to go to work. I know when to be extra careful going up or down stairs and I now know how to cope with dark days. All this works for me, but probably won’t for you.
Examine your MS and find out how to play it. It’ll take time, trial and error and blind alleys.
But you will find it.