I have MS. I’ve had it for 37 years. I’m now a full-time power chair user with use only in my right arm and hand. For the first ten years, or so, it came and went in that ‘relapsing/remitting’ way, and only occasionally impacted on my life. Then I would go to ground, have a hefty dose of steroids and wait for life to return to normal which, usually after about 6 weeks, it invariably did.
I married, (more than once), had two children and lived life, I felt, in a ‘gung-ho, nothing-can-slow-me-down’ kind of way. The nature of The Beast, nevertheless, has been degenerative and insidious, relentless in its’ determination to try to undermine and eat away at the very essence of me, chip away at my confidence, as I’ve been forced to relinquish my privacy and dignity and rely totally, over the years, on the help and goodwill of a variety of carers, family and friends.
All sounds pretty desperate, right? And at times, believe me, it can be, but I am still me. Still the same person. Still in charge. Great generals don’t actually go out shooting guns and digging trenches, do they? They oversee the whole operation. They make the decisions and decide who does what and when. This is exactly how I like to see myself, organizing the troops (aka my husband) to help me in my battle and to make my life as straightforward and normal as possible. Sorted. All well and good. As long as no one throws a spanner in the works. Which, of course, someone recently did and – it was my husband!
My number 1, best (and only) helper hurt his back and could no longer lift me, something which, in all honesty, he should not have spent the last ten years doing, but he did it so quickly and easily that it made life, well, quicker and easier. How many times have we heard a sharp intake of breath from a health care professional, horrified as he popped me from my wheelchair onto a bed, in the mere jiffiest of jiffys, during a hospital appointment? How many times have they muttered, ‘you really shouldn’t do that,’ before turning away, or actually leaving the room, in order not to witness this folly, but that’s the way it worked for us. Until Easter Sunday morning, when he got up with agonising back pain, in truth, possibly not caused by lifting me, but most likely, and that, as they say, was that. No more lifting. Ever!
What ensued saw our lives change completely, as a hospital bed and, horror of horrors, a commode, were delivered to our home before you could say knife, and an emergency team of nurses came twice a day, every day, for the next three weeks, morning and night, to wash me, get me up and put me to bed. I was thrust, unhappily, I have to admit, into the world of the hoisted.
If you’ve never had cause to be hoisted, let me tell you, it’s a strange and unnerving feeling the first time it happens, particularly when you’re naked in front of a room full of strangers, albeit kind and helpful strangers with only your best interests at heart, who want to wipe your bottom for you! In one fell swoop, I lost complete control of my life. I had to go to bed (at 7pm!) and get up (anytime between 8.30 and 11am) in accordance with someone else’s schedule. I was forced to leave our beautiful new bed in our beautiful, newly-decorated bedroom and sleep in a single hospital bed in the dining room. My husband was the one injured and yet I, suddenly, became the patient.
The strange thing was that, although I know I’m disabled, until that moment, I hadn’t really felt it. The fact that I’ve become incapable of doing things I used to love to do, such as baking and driving, were hard, but not the end of the world, and I’d got used to my new role as chief navigator, or recipe reader. I still had a part.
My husband and I had perfected a way of doing things that didn’t feel so labour-intensive. Everything just flowed. Now, suddenly, I could no longer rely on the person I rely 100% on and I didn’t feel in charge any more. The Beast that I’d spent so many years believing I was one step (not literally, of course) ahead of, had not only caught up with me, but had overtaken me and taken over completely.
As a patient, I became a problem to be solved, someone to be managed and handled. I wasn’t used to it and I didn’t like it! I still don’t, if truth be told, but it is what it is and I am getting used to it. Hoisting, now my newly-recovered husband is doing it, is actually quite pleasant. Swinging gently in the air after 18 hours of sitting in the same position, brings great relief to my nether regions, and I’m in charge of the controls that raise me up and down, while he guides me to where I need to be.
However, being hoisted in a sling that is soaking wet from the shower? Relief then comes only when I’m back on the bed, wrapped in a warm and fluffy towel. The downside is that everything takes longer now, but that’s only because we’re new to this regime, but we accommodated my shortcomings before, until they just became part of everyday life, and we shall do so again.
The last few weeks have been a wake-up call and a tough learning curve for me. I want my husband to be the one who sees me through all my most vulnerable moments. I only really feel safe when he’s there to help me, but his safety is even more important because, without him I am, to quote Blanche Dubois, dependent ‘on the kindness of strangers.’
My husband always says he isn’t my carer, he’s the person who cares for and about me. We have new rules to follow, but it’s not as undignified as it first felt. I’m back in front and The Beast is back in its’ box.
Lesley Greenwood enjoyed a modicum of success in a previous incarnation when her children were smaller, as a writer of pre-school children’s stories under her maiden name of Lesley Rees. These days, she lives in the countryside with her fabulous and long-suffering husband and has developed a passion for oak trees.
While officially classed as ‘severely disabled’ by certain short-sighted and ill-informed medics, she prefers to view herself as amazingly and extremely ‘differently-abled’ as she hurtles across the field in her super-sparkly, turbo-charged power chair.
Watch out for her next blog – it’s bound to be an interesting read!