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My MS Adventure - March 2018


Quick recap; It’s March 2018 and MS has a firm grip.

I am dealing with it and getting more aware of my body’s limitations, making life a little easier. I’m not in denial, I’m just stubborn and think I can do everything (or at least try) but it really is frustrating when you try to unscrew a water bottle and have to hand it to someone else because you don’t have the strength - or when you’re walking and have to stop - not to catch your breath - but to prevent your leg from dragging and risking a fall.

I have a cinema card which allows a carer to accompany me – something I used to find a little embarrassing. However, despite having a carer to accompany me, it’s ridiculous that the cinema nearest to me has no hand rails, so I always order the tickets online and try to ensure the seats are near the front, at the end of a row so as not to disturb other people – all things I never had to consider in my healthy past. On one occasion I tried to make my way up just a few stairs, but stumbled as there was nothing to hold onto and fell, trapping myself between the seats which was so bloody embarrassing. After the event you try and see the funny side - like having a carer should supposedly prevent this kind of upset! I tend to take a female carer as my thoughts are fairly simple and I reckon that if I’m going to fall then I need a soft landing and certain parts of a lady’s body surely provide a softer cushion!!!

In mid-March I attended a wedding , which is a really big deal for me these days as you know there will inevitably be a lot of people you haven’t seen in a while who are either inquisitive or overly sympathetic when all you want to do is just want fit in as best you can - and not be defined by MS. But I got the chance to wear a suit, (something I used to wear daily for work but haven’t worn for quite some time) which is another change from the norm. I spent time fixing electrodes to my leg, securing them using a stocking type bandage - this is actually something I do every day to enable me to walk in a reasonable fashion! I actually felt good that day and looked OK too so I felt confident enough to go and try to enjoy myself. And do you know what? I actually did! I felt like my old self for the first time since I was diagnosed; my humour was quick and I even did a bit of ‘Dad dancing’. (For anyone unsure about the term ‘Dad dancing’, it is basically where you think you’re throwing a few cool moves but in actual fact look more like you’re having a fit! So yes, I played the unsteady-on-my-feet card and surrounded myself with busty ladies in case of a fall!! I ended up staying till well past 10pm when the tiredness just hit me and I had to rest. But I really enjoyed my time and felt I was finally regaining my confidence after dreading the thought of going out and being in a crowd for so long. This would sound absolutely crazy to anyone who has always known me as the loudest, most confident person in any social situation!) … and long may it continue I was thinking.

Since being diagnosed I have always appreciated the help and support I get from the QE Hospital in Birmingham and particularly my sister who has been my rock and also happens to be a nurse at this hospital. My way of giving something back is to be a volunteer patient at the training carousels for future consultants and GPs. I also make myself available for their exam days. At both of these there are a number of us with various illnesses and we are there to answer questions and be examined for the trainees to give their diagnoses. It’s interesting – I’m often diagnosed as a stroke victim (as it’s my right side that’s the worst affected) and sometimes they diagnose correctly! The training these people do makes you realise why the NHS is a world leader.

So March was appearing to be the month when my confidence was running high and I decided to dip my toe into Internet dating! Why internet? I have no idea - perhaps it seemed like the easier option as I wouldn’t need to hang around pubs, parks or places of interest. It is said that you’re more likely to meet someone where you work or socialise and since I currently do neither this left the internet as my best choice so I set about writing my profile - what a performance that was; do I mention MS? What pictures do I post? And then interests … You hear horror stories where people meet up and don’t recognise the person from their profile pictures because they’re several years out of date or they describe themselves as ‘carrying a few extra pounds’ … So I decided to be honest; George Clooney looking , marathon running, dog loving, fine art loving male!! OK maybe in my dreams!

I told it straight and added that although I walk slowly, I’m good company - and I received lots of views but no replies or requests. I guess the fact that I had put MS scared them off which is sad, but to me it yet another setback. It’s particularly galling as I’d never previously needed to use this approach so a rethink was in order. I re-wrote my profile and flowered it up as best I could admitting that I had MS but that if anyone was looking to walk mountains or take part in Strictly Come Dancing I would not be your man but if good company and a friend was of interest then I would potentially fit the bill! I had a couple of bites but suffice to say my stories of internet dating end here! I decided to wait for some good weather when I can go out and about and use my personality to attract a mate - who knows, from April onwards I just might have a juicier story to include? You never know! I live in hope!

I’ve mentioned that the bungalow I live in is situated in a small community and on Fridays it has become a regular afternoon for bingo and quizzes. As time has gone on, the numbers have increased up to around twenty - making the jackpot an exciting 10 pounds! Hey, when people are on a limited income this is worth winning. I am now the resident Bingo caller which allows me to use my humour and get everyone laughing. Remember for a lot of these people, Friday is the highlight of their week and it’s actually rewarding to be able to cheer them up a bit. I try not to be too rude but I’m very suggestive - the noise of laughter is a great boost not just for me but them. I need to brush up on the bingo lingo as one day I just might make the dizzy heights of national bingo calling!! The people who come along are all ages and from various backgrounds and they all have their issues and things to cope with but they’re all willing to join in and have a good laugh.

Health wise I have had a few days where I just sit from early morning until late at night as my body just won’t work and the feeling of exhaustion drains me all day long. This is nearly always a result of over doing things – maybe trying to clean the bathroom, driving too far or simply because my diet may have been bad the previous day but at least now I recognise what is happening. It feels like a mini relapse but it’s a warning and I deal with it. I am continuing to take the CBD oil and as yet I am not on any MS-specific drug directly aimed at relapses but I feel that the review in June may see me consider trying another one. Who knows? I’m still taking medication for Neuralgia and that is under control but I get constant reminders that it’s there - the odd shooting nerve pain across the face, but when I remember the pain before the operation it is nothing. I also take my usual stomach protection which my sister kindly puts into daily boxes with various other tablets in each. I always have two weeks’ worth there for me to take – marvellous! I just hope there’s nothing dropped in there as payback for some of the terrible things I used to do to her when we were kids!!

I also try to exercise every morning and sometimes at night, depending on how I feel. The morning exercise regime consists mainly of stretching and sit ups, in an attempt to get rid of my Friar Tuck like stomach! MS and the problem I have with walking prevent me from doing the kind of heavier exercise I used to do. Walking miles or riding a bike would both help to burn calories but I can imagine I’d end up riding a few miles then having to rest before setting off again so a 10 mile cycle ride could take 12 hours! When the weather improves I’ll start walking in the park and take a route with benches situated along the way so I can rest. I wonder if people can really grasp the frustration of having once been reasonably fit and now coping with having to attach electrodes to my leg and planning a walk around resting stops. In addition forget hoping my stamina won’t give way as that really hit at any time. But the saying “Use it or lose it” rings in my head and believe me, I want to keep what little I have!!

March flies by but I managed to have lunch with my son. He has turned out well and I understand he is now a man. He travels back and forth to the States as I once did as his girlfriend is from Ohio; a State I know well. His business is connected to the Exhibition trade. Sitting with him I remember him as a boy and the times we spent together and I hope he remembers those times too. When I lived across the pond I remember a day when I was in a bar (being my usual loud self) and in walked my boy - I had absolutely no idea! My heart pounded but that was a day I will never forget – just recalling this is making me well up. I truly believe my mental state as a result of all the changes and illness has made me even more emotional than I used to be and I feel that sadness has a big part in my life now. On my wall I have framed photographs - all memories I treasure and all of people dear to me. I glance over at them and mostly they are a comfort but also it’s quite remembering the good times; the normal, healthy times when I visited places, went for afternoon walks without having to think and plan ahead. But hey, there are people in far worse situations, so I kick myself, smile and get on with life.

I hope these monthly reviews might be of interest and perhaps make people aware of what MS is all about. I know when people see me they have differing views - usually feeling sorry for me, which is actually hard for me. Generally people have no idea of the restrictions that MS brings – and everyone has different symptoms with this disease but to be honest sometimes even I am a little unsure because the changes can be unpredictable. For instance, my right hand is so weak I have trouble picking things up, holding a pen and cutting up food. There is general stiffness which I am trying to slow down by improving my grip, like squeezing a resistance ball and clenching my fist as often as I can. I never had this down as a potential problem, unlike the constant tripping when my foot sticks to a carpet. My speech and memory also deteriorate as the night draws in but these are problems that I’m aware of - but I still think I’m winning.

Well I think that will do for March and I am aware of not wanting to rambling, so until next month …

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