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My MS Adventure - April 2018


April - where is the year going? I can’t believe it’s already a third of the way through the year but hey here we are again, ready for a monthly update. What’s actually quite annoying is when I open my diary and as usual I’ve noted all my medical appointments, battery changes for my leg electrodes, lunch and evening dates, when people are visiting and other stuff that I cannot bloody read as it comes out as completely illegible gobbledy gook because I have no strength in my right hand. It’s hard to believe I once prided myself on my hand writing, believing it was very artistic but now, well, let’s just call it scribble! So once I manage to decipher it I can start to write what has taken place this month. MS really has a lot to answer for (as I said in the March blog) and I hadn’t expected to lose control of my right hand - but once again Ill adapt and soldier on. So April has been a terrible month for my mother who spent almost three weeks in High Dependency at Worcester Hospital. This was very worrying times which took up a great deal of time for myself, my brother and sisters but thankfully she is now at home. The worry definitely affected my sleep patterns and strength levels but my sister took me backwards and forwards to visit most of the time which was a huge help while we all tried to rally round. On the occasions I made the journey on my own, I managed to get lost pretty much every time! I did a lot of roaming around the hospital and I’m sure the nurses all had a giggle about it and when I finally located the right ward there were times when mother was occupied with doctors or indeed ‘otherwise engaged’! and one day I caught her snoring – I have to admit here that if I’d remembered to take my mobile phone I would have taken a cheeky picture and probably would have shown them all at Bingo (oh yes I would!) So this month’s write up will be shorter as so much time was spent travelling to and Worcester Royal Hospital where they were all fantastic to her.

April was also my youngest sister’s 50th birthday. It seems like only yesterday when I remember mother coming home with this little bundle on her lap and I asked if we could keep her, thinking perhaps my mother had borrowed her like a library book! Fifty years - boy, could I tell you some stories but I will save her blushes! The party was for friends and family and at the time I was really weak (probably from worrying about mother) but it was important for me to go and I am glad I did which was a result. It would’ve been nice to stay longer but my energy levels were just too low. I’m sure for many people who know me, this is hard to grasp as I was once the loud guy who loved a laugh whereas now, due to my lack of confidence and energy along with the lack of ability to walk means I leave early and (mostly) quietly. MS is difficult for people to fully understand as there are so many different levels. I often hear “Oh my mate’s mum has MS and she gets tired every now and then,” or people who reckon MS is all in the mind. It’s very annoying when they don’t understand the devastation MS brings; what you’re going through and what you’ve lost -and I guess this is the reason I feel compelled to write about how I’m feeling and how this illness affects me day to day. Throughout the month I try and get to see friends and trips to the cinema are always a favourite of mine. Someone always comes along with me and this month as a change I took an old girlfriend to a local theatre to see a Led Zeppelin tribute band. No sooner had we got to our seats when I spotted a pathetically small drum kit on stage and immediately decided it was time to leave - I forgot to mention I used to drum (so I like to think I know a little) and I’m pretty sure the late, great John Bonham from Led Zeppelin, who had a marvellous drum kit, would’ve turned in his grave if he’d set eyes on centre stage. Sure enough they were awful, so we left and no doubt will be sticking to the cinema in future – but at least I am still getting out! I also went on a couple of lunch dates with guys who used to work with me. It’s great hearing about their working lives and how things are in the industries I used to work in. One thing I realised is how doubtful it is that I could ever hold down a full time position again. I made sure I was up by 6am to meet up with both these guys to ensure my body would be functioning by lunch time. On a previous occasion I’d had to cancel an appointment as there was no way my joints were going to move and I ended up spending the day in my arm chair waiting for whatever was happening to pass. It’s very frustrating but I needed the time to sort myself out and I suppose regular viewing of Bargain Hunt (an antique buying competition) can’t hurt even though I have outbursts of bad language when the contestants buy total rubbish! I tell people I also have MS Tourette’s - I know there’s no such thing but it causes a smile! On the odd afternoon I visit the local pub to watch football with a mate who has crippling arthritis. The staff there know us and carry our beer and food over to avoid it more than likely ending up on the floor! There was one time when I’d recently been diagnosed with MS when we were leaving and it was raining; I struggled down a step, slipped and fell on my backside. My mate who was hunched up in pain offered to help me - I swore at him and told him to leave me as passers by would see one cripple trying to pick up another which might be funny to look at but not funny for us at the time. However we do look back now and laugh as it would make a good comedy sketch. In my bungalow I decided I could really benefit from French doors leading directly from my bedroom to the back garden as it is increasingly difficult to drag myself round the side door and ensure everything is locked. This means that on a weak day I can have the doors open and sit outside. My family and friends have worked on the front and back gardens which are looking good now. The back is flat and in the better weather will make it easier for me to exercise as I’m aware I need to do more to ensure my limbs are working as well as possible. With every month that passes I am hoping to get back to the gym and maybe take up water exercises. I hope my strength and confidence will allow me to do that very soon. MS will live with me not me live with it - I have learnt that my emotions run high at times and I allow myself to have the quiet moments and I do feel sad at how life can change in the blink of an eye and that the people you love and hold dear sometimes are far away through no fault of your own and life has to move on but boy it has taken a long time and I know that there will be more to come. That’s April all done now - mother is home and a normal May will hopefully proceed. All this will by now be online and I look forward to writing again soon.

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