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MS Story Continued ... - June 2018

June - the months are racing by and I ‘m thinking of trips that need to be made and particularly those I consider a priority, like a visit to my old mate in Eastbourne. Also this month I’ll be talking about the Trigeminal Neuralgia I suffered last year and I‘ll also touch on my personal life and how the MS is, let’s say, a little restricting … so let’s start …

Trigeminal Neuralgia will mean nothing to many people and previously I was one of them. I never expected to suffer pain like it where even the simplest things in life were just too painful. Talking, eating, puckering up for a kiss or even receiving a peck on the cheek was an issue as my face was too sensitive to touch even lightly. When my mouth moved the nerve pains shot across my face making my eyes run and it became easier just to be quiet – no doubt that was a bonus to many! As for eating, I could only stand soft food so I at least hoped to lose a little weight although sadly that too was never going to happen! The pain of shaving was too much so I had no choice but to grow a beard - which I suppose added to my George Clooney looks. Actually, in reality after a few days the growth made me look like a stamp-collecting geek or the type of saddo you might find at the back of a cinema with a woolly hat! On the rare days where I had a break from the constant shooting pains I would race down to the barbers who offered a wet shave. The barber knew I was in pain and would speed along with his blade to give me a clean shave but there was a time when he was halfway through and the nerves started to react sending severe shooting pains up and down my face so he had to stop. There I was, half my face as clear as a baby’s bottom and the other like a rough street urchin. It reminded me of the sketch where Tommy Cooper dressed as two different characters and he turned from one side to the other with different voices which was very funny. This however was not. I asked the barber to carry on despite the awful pain. I wanted to scream but I managed to stick it out and it really was an incident I’ll never forget. Having someone touch my face or for me to pucker up for a kiss was not only painful but sometimes upsetting as I did have the opportunity to get close to some beauties!

I visited a consultant at the QE hospital who informed me of a procedure that could be done under general anaesthetic to numb the pain but the success rate was difficult to assess as every case is individual - but he was prepared to do it. Believe me, not only was the pain unbearable but the amount of pain killers I was taking was off the scale so I would have tried anything. And a date was booked. Prior to the operation someone had seen me mention the dates and outcome of the meeting with the consultant on social media and he was damning of the whole thing which worried me a little - but you always hear of someone who (for whatever reason) offers advice that you think about and then ignore anyway through desperation. The picture below was taken by my Sister as I was wheeled down - the lines on my face indicate the position where the needles would go in and leave a coating over the exposed nerves, so fingers crossed that a successful operation would take place.

As the months are passing I am more aware of my body and the fact that I spend days where it appears to just shut down - normally after I’ve been out or when I’ve attempted some housework. I’ve always been a little over the top with cleaning and the frustrating part is that I can no longer spend the time I used to. Now when I clean the bathroom I take a chair from the kitchen and sit in my underpants scrubbing with bleach … (yes I know, the female readers may be getting a picture of me in my undies but believe me it really isn’t a great sight!), but I work for a while then rest and it takes me a while but I am gradually trying to do more.

Exercising is also a slow job. Those that know me will understand the need for me to exercise which I always did every single evening but now, running or walking with drop-foot is really a no go, so stretching and a bit of crunching is all I am currently doing. The main thing I need to do is eat less, which is not easy. I eat sometimes out of boredom and probably from loneliness. It’s very difficult when shopping to pass the biscuit aisle with my head down! I remember my old love telling me to read the labels and look for the green marks on the packets and avoid the red. I do really well Monday to Friday then at the week end I over indulge! Even as I‘m writing this I ‘ve got my eye on a box of dates which I was told contain sugar so perhaps I’ll have an apple instead?!?

This month I took an old friend to see a medium. You may ask why? Well it was in support of the MS Society and I really had no idea what to expect. (If anyone reading this objects to my views please remember that’s exactly what they are - my views). Anyway the room was full of people who really wanted to contact someone which I personally think is like grasping at straws. I wasn’t sure how long I could manage to keep quiet but my friend was giving me ‘that look’ - especially when the medium started to say, “Birds, I can see birds” and a woman shouted out, “That’s Bill, Uncle Bill, he kept pigeons, really”. Hey, people enjoyed themselves and raised over 400. I won the raffle - tickets to see this medium again!! I gave them to a couple of ladies who were well into it.

As usual I had a visit to the cinema to see Jurassic Park in Imax. It wasn’t my kind of film but my friend had always wanted to see it and a second mate pitched in as well so the decision was made and we were off. Five o’clock is a quiet time and as soon as we got into the cinema my two reprobates were like children! My mate went right to the back and there was no way I could get all the way up there and as for my other friend, she sat drinking her wine halfway up the seats and as usual I sat at the front, really not looking forward to this film! I remember the trailers coming on and the next thing I recalled was a rather lovely female being chased by a dinosaur; yes, I’d fallen asleep for a lovely 30 minute nap! MS for once was useful as the film was awful and a good nap was a bonus. I’m told I’d been snoring (but this friend has always been prone to exaggerate!) On the way home we stopped at McDonalds - why is there always one right near to where you’ve just visited? I had Chicken Selects (remembering the diet) but the large fries swiftly followed. (I know I know) but when I pull into a burger place I always remember the lady I was with in the States who had a body to die for but always loved a portion of freshly cooked fries which she ordered with no salt. The fries always came hot as they had to be freshly cooked and when she came to pay she would then ask for salt! We always giggled when we did this, but the following day she would cycle 16 miles and there was no chance of me doing that! The following morning I always paid for the rubbish food I’d eaten the night before - I had a slow start as it took time to get my body going, but still, it was worth it.

This month I picked up a new car which is smaller than the old one but more economical and things have changed regarding my situation. When I was first diagnosed I really took little notice as to what was going on regarding my personal situation and driving was bottom of my list. I remember making the decision to let the Alpha GT go as I had trouble getting into it and it was a six speed stick shift. I needed an automatic. I tried a couple of cars before deciding that I may need a large mobility scooter to get around on when I arrived wherever I was going. So I ended up getting a larger people carrier because it had the room for a hydraulic lift. The car was a tank and I didn’t really like it plus it guzzled the fuel. I now have a sexy, blue coloured Ford that does 40+ miles to the gallon and I can comfortably fit my smaller, foldaway scooter in if I ever need it. The car has been adapted to drive with my hand as drop-foot would mean a heavy foot on the accelerator and speeds of 100+ (A bit like the old days I suppose!)

I previously touched on the fact that the internet dating had taken a back seat due to the standard of female interest! When you look at the historical female interest, it is at best Shrek like! I try using my charm and personality but all the time in the back of my mind I’m thinking of the beauty I left behind in the States (and indeed the lady who proof-reads this blog). I did recently manage to attract a lady but unfortunately it didn’t go all that well.

I’m unsure whether American or foreign readers will know the TV programme we had here a few years ago called the Golden Shot but basically there was a blind folded guy controlling a crossbow with a contestant shouting out directional instructions then shooting at the target; well my brief venture into the female form was pretty much like that - up a bit, left a bit, down a bit, no! then there was a thud as I fell off the bed. MS takes away balance which is a bit of a disaster but I’m sure it was a funny episode. Needless to say I’m a little reluctant to attract another female until the right one, if ever, comes along. My regular visits to the park, (especially with the current hot weather we’re having) does have the added bonus of bringing out the yummy mummies and the female dog walkers so I live in perpetual hope!

That really is it for June and I’ve recently booked dates for the training carousels -as they are known at the QE hospital - so in July there’ll be an update on those and my forthcoming trip to Eastbourne which had to be re-scheduled and I know that will be fun! So until next month …

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