Honeysuckle writes today’s incredibly funny/poignant Guest Blog post, – I think a lot of us will be very, very familiar with the following:
OK, what’s living with MS like?
It took a while before MS was diagnosed.
While the experts pondered, I named what I experienced FANI: Annoying Neurological Impairment. The ‘F’ is an interchangeable adjective, depending on how things are going: usually the first ‘F’ that comes to mind, but not always.
What with the life threatening, terrifying array of intractable symptoms and myriad of drugs on offer, the diagnosis of MS was a relief. Yes really. So the grief bit (you know, disbelief, anger, acceptance…) was largely skipped. It would be a massive overstatement, ok Big Fat Lie, to say that I welcomed MS. But in comparison, it’s not as scary. Not quite. Not yet.
FANI is challenging and underhand, irresponsible and unpredictable but always interesting. FANI has changed my life, on the whole for the better. No I’m not deluded or drugged, I do think this. Why? Because symptoms didn’t start until middle age and I’m still largely independent. That’s made a tremendous difference to my outlook.
That said, FANI’s not exactly a walk in the park. Initially, the early hours’ recurring loop of: You Cannot Be Serious. How Could This Happen? Tears and fears. Juddering snotty sobs. Eventually (I’m talking weeks here) followed by reflection. Fairness isn’t a concept I’ve ever believed in, fortunately. Prayer is a bit late now. Someone said, “Life is randomly cruel and kind”. This, I can live with.
Those indescribable sensations …why is an ice-cold cobbler’s lathe in my leg? Where did that shower of vibrating spikes come from?
That unrecognisable, hesitant, garbled speech. Who is that? Thanks, people for finishing my sentences with the (wrong) word that …just …… won’t… come.
Cramps…especially in my left buttock. Who gets buttock cramps? Could be funny, but it just hurts. There are few ways I’ve found to stretch and bend a buttock. All suggestions gratefully received.
Other stuff like jerky legs, limpy legs, migrating numbness and gnawing pain, frequent falls, pins and needles from face to feet, running (I wish) to the loo, utter exhaustion, daily injections now all part of the routine.
FANI you remain, grudgingly tolerated but less frightening now that I’ve learned to work around you. Not everything, but I’m getting cannier!
Life is good, although things have gradually deteriorated with each relapse. Orange, my future’s a mood-dependent turquoise or crimson, but you’re right, it’s bright. Because…? Well, shit happens and in the grand scheme, things could be much worse and there are many positives that I’ve come to appreciate. Happy to elucidate if invited back!