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!
great post and agreed – my own MS is called “Gaucho” – explanation here http://itsashitbusiness.blogspot.co.uk/2012/10/gaucho.html
Hi Steve,
Nice post, loving Gaucho! I haven’t actually named mine yet – must get thinking cap on, but probably couldn’t write it on an, ahem, family website….
X
Great post! Love the idea of a name, but I agree that it would be difficult indeed to come up with one that didn’t contain at least one obscenity.
Yup. Anyone watch the Danish drama Borgen?? Might name my MS after Kasper Juul, the spin doctor baddie. KJ for short.
X
Hi Honeysuckle , GREAT BLOG !!! It made me remember the day I got my dx , & yes I felt that relief to it took them almost a yr to dx me , & iremember feeling like “yes , now at least it has a name” and it not CONVERSION REACTION !!! Thats what they were saying it wasafter every other test came back neg , & nothing drives you crazier than a Dr. telling you your crazy !!! But anyways again gteat blog & hope to see you blog again . Don’t make you feel good to do it ( WRITE A BLOG THAT IS ) !!! Lol …. X <3 🙂
Hey Scot,
Lovely compliment for Honeysuckle (she’ll put me out of blogging business, lol). Jealous, me??
Isn’t it weird that however much we don’t want to be diagnosed with MS, the overwhelming feeling when we are is one of relief? It was probably one of the happiest days of my life. Very odd.
X
I feel your description of the weird pains we get…..heat seems to make me have spasms in my legs even after I had a baclofen pump surgery this past year ….so I try to live on the edge of freezing (I may blog about that)
Hi Kim!
What’s your blog?
x
Hi Kim , my name is Scot , I see you’ve had the back of hand pump surgery it’s something they’re considering doing with me and I’m really interested to talk to somebody else has had it done , how is it going for u ??? here is my email address if you’d like to email me that would be great !!! Mtocs66@gmail.com… I would really appreciate your input ., Thank you . 🙂
Sorry that should say Baclofen pump !!! Talk-to-Text gotta love it !!!
Thanks everybody for your lovely comments. Really appreciated!
Honeysucklex