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MS Story - July 2018


My MS story July

Before I start my adventures from July I need to vent; yes, I’m a little wound up regarding the issue of parking. To fill you in a bit, I had to jump through a fair few hoops and was scrupulously vetted in order to qualify for a blue badge - this is the card I display in the windscreen which allows me to park in designated disabled areas and in some cases on double yellow lines. This blue badge is invaluable as on certain days when I’m struggling to mobilise myself, it’s the only thing that gets me out, knowing I should be able to park close to wherever I’m heading to. I know there appears to be hundreds of these bloody badges everywhere and some people might even think they’re handed out freely (which is a topic I could no doubt talk about for ages), but for now it’s my parking and the ensuing fines I’ve somehow managed to accrue in the past few days that I need to dwell on! So the first one happened when I took mother for lunch in Tewkesbury. I parked in an area clearly labelled disabled. I placed my blue badge in the windscreen and nipped into a pleasant little cafe for a decent toasted sandwich and drink. We were there for less than an hour but on our return there was a ticket, yep a ticket, attached to my clean windscreen which left a horrible sticky mess where some over enthusiastic warden had pressed it on really hard. And the best of it was that the notice stated a ”Civil Enforcement Officer had reason to believe that I had parked in a designated disabled persons parking place without displaying a valid disabled persons badge in the prescribed manner.” Whatever that means? Damn it. I got home and just paid the fine (although I have subsequently written in to complain so we’ll wait and find out if there is any outcome). Next I went on my much anticipated journey to Eastbourne, which I’ll be covering in detail later. My mate and I nipped out for a beer and to watch football and I parked in what I thought was a legal space. However we were wrong and yes, you guessed it, another parking ticket and charge were issued. At this point I was starting to convince myself that I’m cursed or that my new car had a sensor advising traffic wardens of my position! So after a while I’d calmed down and the swearing had subsided until I got home last night and there on the mat was a letter - YES only another bloody parking ticket from a recent trip up north. This one caused me to froth at the mouth and cuss like a lunatic, (if indeed a lunatic does cuss). The fine was for entering a car park and exiting it eight minutes later after driving round searching in vain for a space – how ridiculous. The photographic evidence they attached to it shows me driving in facing one way and driving out facing the other and yet they claim I was parked?? The world has gone mad. I have appealed this ticket as well so fingers crossed someone will see sense. This parking fine malarkey is no joke and in under two weeks I am the unhappy recipient of three parking tickets. So much for my precious blue badge! OK, rant over now onto July.

I have just had a weekend down in Eastbourne with who I describe as a great friend or a brother from another mother (as I think that is a good description). I consider myself lucky to have have two very close guys to me, one in the States and this one in Eastbourne who has two Tibetan Terriers. They are the loveliest of dogs and every time I visit I am made to feel at home by both them and my mate! I tend to eat far too much when I’m there (not sure how that works) and because I now have a stomach similar to that of Friar Tuck, I really am struggling to attain the athletic figure I picture myself with. I keep saying, “Monday, I WILL start a diet on Monday”. Do you know - and I’m sure this is the same for most blokes, I seem to remember being confident when slipping my shirt off, now I turn the lights off or breathe in as hard as I can! I know I’ve never actually housed a six pack under my shirt but neither had I been hiding a party pack up there! So (just a quick aside) this morning I attempted push ups but made the unfortunate mistake of being naked in front of my mirrored wardrobe doors … What a shock; I have breasts and a stomach heading towards the floor and well, let’s leave it there as I know some of the female readers may have their own picture of me naked exercising!!

Anyway, back to the weekend - I occasionally forget that Eastbourne is a popular holiday spot in the UK as to me it’s just where my mate happens to live – that is, until I spied holiday makers getting burnt and apparently squeezing this year’s body into last year’s clothes which was quite entertaining! The unusually sunny weather had brought lots of flesh to the seaside!! So we went to a bar and met up with a group of my mates’ friends to watch football. Once the match had finished and I had been greeted by that parking ticket, we all headed to a local Indian Restaurant and the evening was a great laugh. The following day there was more football and England won taking us to the semi-finals which was great. Pretty much the rest of the weekend was spent eating and laughing. We made our obligatory visit to Fusciardi’s ice cream parlour which is a must not only for the fantastic ice cream but also because the owner is a friend. I travelled the 180+ miles each-way trip with relative ease as I’m so familiar with the route but when I got home I had to spend a quiet day relaxing as exhaustion was taking its toll. I always pay the price after a hectic weekend and I’m all too aware that this MS controls my body every day (well tries to) so with the long drive as well I know my body goes into a mini relapse and resting is all that will get me back to some sort of normality.

Quick mention of the football - we got to the semi-finals which was exciting but then we were beaten and ready for the team to come home so not much else to say really except the whole country was gripped and had a genuine belief that we could win which was thrilling really but still, in four years’ time we get another go.

This summer in the UK we’re having a heat wave which is glorious, but for me I am limited due to my MS and know that now I suffer in the heat. At least with the knowledge I now have about MS I can control my body’s reaction - unlike when I went with my sister to Malaga and foolishly sat for hours in direct sunlight, completely oblivious to the effect it would have on me and my brain obviously boiled as I had no balance, I was weak with slurred speech, and to be honest it really slowed me down which in a different way to heatstroke. I now recognise what I need to do and sit in the shade.

When I’m in the States, much to the embarrassment of my friend, I wear a bush hat and while it might make me look like an idiot these things have to be done to protect me from the heat. The last time I was in Sarasota (where I used to live) I sat on the beach with my head under a brolly with my bush hat on and I was fine - not necessarily eye candy for the beach babes but it prevented me from suffering. It’s taken a long time to understand what this illness can do to the body and I continue to learn all the time but coupled with a decent diet, it all becomes a little easier. I’ve mentioned diet before and I genuinely do try (believe it or not – but I’m easily lead!) and living on my own where the evenings stretch out, trying to adhere to a healthy eating plan is hard, trust me, it really is and in all honesty I’ve always said if you were supposed to eat greens you’d have long floppy ears. But hey, seeing myself exercising (naked) in the mirror is this month’s incentive.

I have recurring dreams back to when I had a fully functional body and lead the life I used too. I also think back to when MS was present in my body and I didn’t recognise it. In this particular dream (which actually happened for real) I was at Daytona Raceway with a young lady and had quite a long walk to the Stadium but there was no way I could make it and took a couple of tumbles. When we got to the multi-level Stadium getting to the level where we were to sit was a problem and at the time I think I blamed all the issues my body had on an old disc problem. I had no idea what was going on at the time, and when I spoke to an MS nurse she informed me that this illness incubates in your body for around five years. I remember struggling back to the car afterwards thinking what a worry I must have been to the girl I was with. I woke up feeling sad and upset and wondering what has happened to me and how, over a short time, my life has changed. This happened to me whilst living in America I often think of my days there, many with a lot of happiness. I enjoyed my work and my life but then I get hit with a lot of sadness and the feeling of complete loss and lack of understanding as to how quickly life can change. I try to pull myself together, wipe my eyes dry, get on with my ritual exercises and take my special Daytona Raceway shirt from my wardrobe, I suppose to remember the events of that time, and then my day begins at my usual slow pace.

Another thing that really grinds with me is the simply daily task of shaving, making sure that my face retains its immaculate softness - yes, when the Neuralgia was giving me grief I often went to the barbers for a wet shave but now I am able to shave myself but finding the right blades is difficult. I have tried the highly advertised ones and parted with a lot of money. My problem is that I am right handed but have little grip or sensation in my hand so the razor slips from my grip or is embedded into my skin, leaving an awful mark and loads of blood. I used to smile when my dad would walk around the house with bits of toilet tissue stuck randomly to his face and here I was doing the same!!!

I would never normally buy anything from online sites especially from Facebook but recently a razor was advertised on there offering a start-up package for a little over three pounds and I just decided that having spent a small fortune trying to get a shave, why not give it a go so I ordered the start up package which duly arrived, with Harrys written on the box. Hallelujah I could grip the handle! It felt lovely and rubbery and with my weakened grip it was a joy to hold and I had an excellent shave. Then I needed to try and change the blade which is often an ordeal but there was no fiddling - just a little squeeze, job done. I have made a point of not mentioning names on here but I do know a lot of people would benefit from these easy-to-use razors so here it is again, Harrys. As an added bonus, I am looking good, clean shaven and saving a fortune both on blades and toilet roll!

Today as I write this it is Sunday and I’m listening to love songs; the weather outside is once again a typical English, summer’s day; wet and windy! And for me, the second day feeling slow, off balance and nursing a splitting headache, following a long drive back from a busy, last minute trip to Cornwall. The dramatic change in the weather will no doubt stretch this to yet another couple of slow days, although I’m hopeful that tomorrow I’ll be back to some sort of normality. When I say normal I mean the new normal as this is not a word often associated to me back when I was moving around being my usual chatty self.

So a good friend asked if I’d like to join her and her faithful, four-legged friend to stay in a little cottage she’d booked in Cornwall where we’d be company for each other and give me a change of scenery. I agreed and off we went - and boy did we have a giggle! It was a much needed break for both of us. We explored Looe, a lovely seaside village where we indulged in the local Cornish pasties and afternoon teas. As I’m writing this I know my foreign friends will have little or no idea what I am talking about, so quickly, a pasty is like a folded meat and potato pie and Cornish afternoon tea is scones with jam and thick clotted cream with a cup of tea or coffee, (or in my friends’ case, a glass of wine) - but I’ll come back to that later!

No doubt you can tell by the description of Cornish fare, my Friar Tuck stomach has returned and certain clothing is a lot tighter (obviously the Speedo swimming trunks didn’t make an appearance either!! We really did eat and kept thinking, “Monday we start the diet again”. The eternal vicious circle! We visited a few places but mostly stayed in the bungalow as we were close to the sea which was relaxing. I mentioned the wine earlier and admit I may have gone a little overboard about her drinking and smoking but thankfully she took no notice because she was relaxed, enjoying herself and is always a good giggle when a little tipsy. We visited an amusement arcade and my competitive streak reared its head - I was rolling coins into a machine that shoved them along a platform in the hope of dragging out little stuffed animal key rings - which I did eventually win even though the attendant had to come and open the door to liberate them after admitting they were too big to fall through the slot! Outrageous! But still, I was quite pleased with apart from the fact that the key rings were probably worth a pound and I spent five pounds to win them. To add insult to injury, in the process of stuffing coins in the machine, my hands were filthy and my OCD kicked in, necessitating the search for a bathroom to clean up, much to the amusement of my friend. We were also in contact with folks in the States - my friend would be lovey dovey with her man in Alabama every night and I had a surprise video chat with my old love in Illinois; a very sweet and uplifting chat, she looked as lovely as ever and it was truly wonderful. On this trip to Cornwall because no one knows me, I used my mobility scooter. Without it there was no way I could’ve covered the miles we did. I am a little crazy speeding along and believe I’m a formula one driver racing into bends! And if there was a handbrake, believe me, a hand break turn would be achieved! All the time we were there I avoided the afternoon sun and actually purchased a hat which I felt sure gave me the appearance of a Columbian mafia boss. Well that’s my take on it even if the fact is, like all hats, I probably looked a knob!!!

So that’s July - a look back at my time in the States, a little explaining of MS with a few adventures thrown in. I know what I have and I continue to learn my limitations, hide my frustrations which to be truthful I haven’t shared even though they’re always with me - like watching my mate walking in the sea and remembering doing the same or the frustration of using a scooter when I used to be able to walk with ease, but hey, I did it and August I will have more to write - who knows what may happen?

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