By Martin Baum
MS blogger & influencer
Challenging Multiple Sclerosis, one blog at a time.
Sometimes it takes only one act of kindness and caring to change a person's life. Lizzy, my wife and carer, and myself as an MSer of over 40 years, have together been living that one act for 32 years. Kindness is the love that binds us, notwithstanding a feeling that our marriage could make us feel trapped inside a living Groundhog Day experience, when in truth no two days are ever the same.
Situations and sacrifices come our way because of living with MS which, given our circumstances, are only to be expected. We’re not unique so why should life’s challenges be any different for us but – and isn’t there always a but? - one of the biggest tests of character we face are the never-ending sacrifices of independence. While we do our best to live with the illness as a matter of course, it’s adapting our lifestyle to accommodate a disease of the central nervous system that has a knack of making our lives interesting.
Take the joy of motorhood. My joy of driving. Long gone are the days when I was able to grab the car keys, put the pedal to the metal and hit the road without so much as a care, while giving Motorhead’s Lemmy a run for his money as Ace of Spades blasted through the speakers. I bothered nobody and nobody bothered me until MS, being the buzz kill that it is, put an end to that little pleasure, thank you very much. Driving became more about my lack of concentration, comfort and being less than alert behind the wheel which was something my pride and ego had trouble accepting was finally over.
But then as I was mourning this loss, I failed to acknowledge Lizzy was experiencing similar feelings of change after she, consequently, became my accidental full-time Uber driver several years ago. If you think about it, or at least I do, it’s a bit like living with a stalker because wherever I go, she goes. And if, heaven forbid, I ever thought about having an affair, then what a look that would be with my designated driver dropping me off and picking me up to and from my less than covert assignation. This is not a good look for a wannabe lothario.
Sometimes, though, my powers of recall are no longer what they once were because these days MS does addle the grey matter. I’m not so sharp at personal finances as I used to be, useless at handling change which makes me thankful for this cashless society the banks have forced upon us and don’t get me started on medication. Given I can stock a small pharmacy with the number of prescribed pills and potions I have to take, sees Lizzy with absolute control over dispensing my medication, metamorphosing into Nurse Ratched from One Flew Over the Cuckoo's Nest. I jest of course.
Because without her unerring ability to call things right as opposed to mine for not, we never lose our ability to live life and not MS. This is important and never to be forgotten. So, we do our best to carry on as normal but not without the risk of Lizzy becoming the embodiment of Joan Crawford pulling at me when about to cross a road without noticing the green man is flashing. Or riding an escalator without checking my footing. It gets old. ‘Thanks, Mum!’ is my exasperated retort which is always guaranteed to raise a few heckles from someone who could, theoretically and literally, throw me under the bus.
Yet despite my ‘mummy dearest’ taunts, because I do regularly lose my balance, become disoriented, and quite literally spin like a top without warning I could, without Lizzy’s astute care and fast reactions, trip and throw myself under the bus. This is not a prospect that fills me with any joy and nor, I can say with confidence, is it Lizzy’s. Yet when I do spin - and it is with quite a sudden jerk to her hand that vibrates through the wrist – she still firmly holds onto my arm. It comes not without consequence of pain for the both of us because, and there really is no other way of saying it, it bloody well hurts.
And yet here we are. Thirty-two years after we married under the shade of a coconut tree in the Bahamas, before the illness became more aggressive and my MS became our MS, a shared experience that we try to live with as if the three of us – me, Lizzy and ‘Ms’ as we refer to the cuckoo in the nest that is MS - were a happy ménage à trois. But we deal with it. Although I have no choice Lizzy, unlike a previous significant other I had become engaged to many years before, she has never so much as wavered in staying with me.
I was never met with any enthusiasm by my ex-fiancée’s father. As far as he saw his daughter’s future, if she married me and we had children, then she was destined to be a housewife, mother, and nurse if she chose to live her life with someone with Multiple Sclerosis. So, we split up which, inadvertently, was the best thing to ever happen to me. I was yet to meet Lizzy who did become my wife, did become a mother to our now 29-year-old son, but didn’t become my nurse because we are more than that. That’s not who we are because we have MS and wouldn’t live our lives any other way.
Here's how Access Care can help: For those who don't have a 'Lizzy'
For those who are not lucky enough to have been blessed with a Lizzy, a home carer can play a hugely positive role in the lives of individuals living with Multiple Sclerosis. Their dedication, compassion, and personalised care contribute significantly to the well-being of MS patients. By providing physical assistance, emotional support, and independence, home carers empower those with MS to continue leading fulfilling lives in spite of the challenges they face.
Much like Lizzy, a home carer’s presence is a beacon of hope, making a positive difference in the journey of managing this complex condition.
We might not be able to offer you Lizzy, however, we do have a Lisa, an Alice and a Todd. If you or your loved one has MS and would benefit from having a Live-in Carer or would like more information, please call us on 01264 319 399 or email hello@access-care.co.uk.