tHE TRUTH HURTS
You know when you suspect something isn’t quite right but you are not quite prepared to deal with it, well that was certainly me. I’ve always kinda known I have wonky genes and I just put that down to the fact that there had to be some correlation between my Mum having MS and me being accident prone.
The first time I can really remember when I was singled out, for being a complete klutz, was during a school trip to the Lake District. Hiking and me really did not go together and I spent more time in the mud rather then walking over it. During the week, I was the one with the dirtiest clothes and did not have a clean pair of jeans or combats without a mud stain on either the knees or backside. This was only after day two, with more costume changes than a Beyonce concert. Inevitably on the coach ride home, awards were given out for the best pupils, you know usual stuff most miles walked, most hills climbed, best school rep and so it goes on. At this stage I was pretty sure everyone was getting a prize for something and then it was announced ‘the wooden spoon’ award. This award was being given to the pupil who had spent over 20 instances (someone was counting!!) of landing in the mud either onto her knees, backside and on one occasion, face! Yep, it was me and the fact that this was nearly forty years ago, I obviously don’t hold grudges.
As I went through my adult life completely unaware of the lesions I have on my brain, I happily continued to trip up on air, lose my balance, fall off my bike, struggled to run, twisted my ankle wearing heels and walked like I was drunk a lot of the time. I just carried on completely in ignorant bliss. Then I started to notice that walking at pace or even a short distance was becoming an issue. Its funny cause I still didn’t get it and I was falling over more frequently. I can not tell you the number of times I fell over enroute to a gate at Stansted airport, oh silly me was my reaction at first. I can remember being screamed at by a lady at the (low cost) gate telling me to run as the gate was closing. Now this was after a gate change from one side of the airport to the other and then a fall, I just smiled saying ‘I’m coming as fast as I can’. This is the first time I can remember knowing I wasn’t quite right and as I walked to the lady to show my Passport, I felt I deserved an Oscar for holding back the tears.
I persevered; however, I realised I couldn’t walk up or down stairs without a handrail or someone’s help. Now at this point I’m in denial that anything major is wrong and wow did I make some cringe worthy and embarrassing decisions. One of which was a very high-profile account’s conference, my colleague was dying (not literally!) on stage and rather like a superhero or to be fair more like Hong Kong Phooey I crawled up the stairs onto the stage. I grabbed the mike and said ‘oops sorry bad back, let’s give my colleague a round of applause, who wants to win…..’! Then another time at a fancy awards ceremony I was called up on stage to recite my sponsored speech. Slight problem, steps, and no rail, I stand at the bottom of the stairs and basically call out to the President (not the US one) to come down and help me up. After these episodes I knew what questions to ask whenever presenting so I didn’t put myself in an awkward position.
The catalyst for doing something about my progressive issues came about because of a leisurely day out in Windsor with friends. It was great strolling along The Long Walk to the castle and stopping for a light lunch. On the route back to our cars I started dragging my left foot and it was becoming more and more difficult to walk. I’d convinced myself that I had a bad back because that seemed to be where most of my pain was concentrated. As I continued to deteriorate, I carried on lying to myself as well as others and this set me on a path to self-destruct.
Ill talk about my medical diagnosis another time but the point of this article really is to acknowledge Jack Nicholson was in my head shouting ‘you can’t handle the truth’ 24/7. I really couldn’t, even when I was told it was Multiple Sclerosis, and that it was mild. I’ve spoken before about the stages after a serious diagnosis i.e., grief, anger, denial, and I didn’t get angry in fact I never have. I started on a journey of denial i.e., no this is a mistake MS isn’t meant to be hereditary how can this possibly be? I then set about being fixated on my back pain thinking if I resolve this then all the MS nonsense will go away. I even went to the extent of having cortisone injections in my back and guess what? It took a little of the pain away for a short time and as I hobbled into the surgeon’s office for my post procedure check-up, he was horrified. So much so he organised physiotherapy to re-commence as a matter of urgency.
I get to see a Rehabilitation Specialist every six months and every time we meet I turn into Jim from the Vicar of Dibley ‘No, no, no, no’. He wants me to make life easier for myself, this is a perfect example. I decided to try to reach the coffee shop near me, a healthy person could walk there in a few minutes, its about 1000 steps. I take my rollator and I make it in just over one hour, yes one hour. I sit drink coffee, have a chat to some of the ladies and then back I go, taking yet another hour. The sense of accomplishment I had was unreal, I can do this I thought, this is progress. I advised my Rehabilitation Specialist with such delight, and he said, ‘oh Amanda you could have done that journey in less than 15 minutes’. My ears pricked up at this point ‘all you need is a little motorised scooter or wheelchair’. ‘No, no, no. no, no!’ Jim was back. You see whilst this maybe his best advice it’s a great example of the truth hurting and well, I’m choosing to believe in myself.
Its funny cause I’ve never been the type of person to say, ‘right MS you can do one I’m going to fight you every step of the way’. Don’t get me wrong I have improved things massively for myself such as correct diet, building strength, practicing mindfulness, and stretching. The thing is I’m the type to be ‘hey MS let’s be friends you don’t really want to hurt me, do you?’. Reality is it doesn’t work like that not everything in life is nice but sometimes you just need a little bit of luck. I know I have what’s called Primary Progressive MS (it’s just a label!) and let’s just say I have been told to expect a call from the Octopus!
