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December 2019

December started with some great news - my son and his young lady got engaged on a beach in Sarasota - a place that I called ‘home’ and where, I suppose I would still be if it wasn’t for this illness. I’m so happy for them and I know Ian and Abigail will have a lifetime of happiness. He surprised me with a video showing him getting down on one knee with the sun setting in the background - very romantic indeed. Sarasota was where I spent some great times and I guess during the time my son used to visit, he also got a liking for the people and the place. He surprised me once before - I have another video of him walking up to me in a bar on Siesta Key; I was holding court, being my usual loud self when I turned round and spotted a decent looking guy, and then it suddenly clicked that it was actually my son and everyone except me knew he was coming! I was gobsmacked and, unusually for me, lost for words - but what a marvellous moment. I sometimes worry that there’s a distance now between my son and I and I don’t know if it’s because of my illness and the change in me or simply that he’s now a man building his own life. When I think of the things he does and this video of his engagement, I comfort myself with the fact he still thinks about me. Since the day he was born he’s always been the first thing on my mind and when he was younger we were inseparable. He knew all my friends and we spent lots of time together; he was just my boy and now, well now, I suppose he’s a man. I know he’s there if I need him and lately I’ve been spending more time with him which is lovely but whatever happens he’s turned out to be a gentleman. So here’s to the next chapter.

I’m pleased to say that the increase in pain meds initially had the desired effect on my Neuralgia. It meant getting up earlier in the morning to cope with my lack of balance (a side effect of the painkillers) but believe me, a day without pain was a dream. I think because of this I felt a lot better; the shingles cleared and although a little slower I actually felt great. MS sufferers will understand these next few sentences - the cold weather really slows me down so getting into the car is an effort (a funny one if you happen to be listening to my cussing) but I have to force my leg in and because my right hand is getting weaker all the time, grabbing the car door is like a sketch straight from a comedy show. I was laughing whilst Skyping my mate in Florida as I had to change the battery in my FES, open new pads and cut a length of gauze virtually one-handed and all just so the following day I’d be able to walk in a fashion, all this whilst trying to hold a conversation. I really struggle to tie lace which is also something I laugh about. I laugh because otherwise I would scream but my mate understands and we will talk again soon.

After a short time my eyes go out of focus along with my ability to write. I’ve mentioned writing before and when it came to doing Christmas cards I struggled and where I once prided myself on my card writing abilities, now I can barely read what I’ve written. I persevere because it’s important to keep things going; use it or lose it, as the saying goes. That includes exercise and my regime (limited as it may be) needs to start again as and when I feel strong enough. I feel stiffer and the odd ache is coming back, oh the joys. After being forced to reduce the amount of talking I did due to the Neuralgia I was starting to feel comfortable bringing it back up to an acceptable amount. This sounds weird but it’s all about getting to understand my capabilities.

Chinese food is always a treat for me and the usual restaurant we use was not answering calls so we decided to try a different place that offered a delivery service. I tried to remember the last time I’d used this place (and indeed if there had been a reason for stopping going there) as the following day I was really lethargic and had to spend a quiet day - not wearing contact lenses, not fixing on the leg pads and even forgoing hair gel (all sure indicators that I was feeling bad). I actually don’t think I looked too awful - the hair was a little scary but I only had the lads coming round later for football (soccer) so there was nobody to impress and regardless of how I looked we still had a laugh. I also went down to the park for the first time in ages and the usual gang were there. It was as if I’d never been away – they’re a great bunch of people.

It is becoming quite apparent that my body is fighting harder to try and keep this bloody MS at bay. I know a number of people who suffer the same illness and some who have had it for years - and because I’m online a lot, I see the symptoms and recognise the limitations. I try to use my left hand as much as I can but after 60 years of being right handed it’s not easy. I tried scooping the last two spoonfuls of porridge from my bowl using my right hand but my hand just shook uncontrollably and oh what a mess as I aimed for my mouth, (which is no small target) and yet I kept missing. I recently watched a video on Twitter where a girl with MS was doing finger/nose exercises so after the porridge episode I tried to give it a go and I wasn’t too bad except my right hand banged into my nose with such force I actually swore. Swearing is actually quite common for me lately; I swear at the TV, when I’m driving, generally swearing at anything actually - which I think might be a release - letting go of my frustrations. I could do what all GPs do and blame everything on my MS and the finger/nose exercise is a clear sign that the right side of my body is struggling. I’m still waiting to hear about drugs, not that they will help but they prevent severe relapses where the body shuts down.

I often get asked about CBD Oil and whether it helps me - what I can say is that with the constant Neuralgia and my right hand getting much weaker I decided to stop taking CBD Oil to see if it makes any difference because it’s expensive if it doesn’t. I think the time has come to evaluate my approach to this illness and in 2020 I need to concentrate on eating a healthier diet and exercising because I have a lot to look forward to. It’s evident that just being positive is not enough and at last perhaps I am having a wakeup call. Having the odd Chinese meal or cream cake is no longer acceptable. I need to eat more greens, more smoothies and do more exercise - well as much as I am able to but I have to start and 2020 I feel is going to be a big year; an adventure.

I went for a Christmas meal with the club members from over the road. I say club members when in fact they are the Bingo crew! We went to a local restaurant and it was absolutely delicious. We had the usual turkey and Christmas Pudding (plum pudding to all my American friends) and at the end of the meal my mother took a turn for the worse. She went grey and clammy and her pulse was racing so we had to call an ambulance and I looked on feeling quite useless. The ambulance crew who took mother to hospital were great and I’m happy to say that after all the worry she’s fine and was back on her feet a couple of days later so we had an afternoon with more of the same group where there was a singer and mother was tapping her feet and smiling which was good to see. It’s not great knowing your parents are getting older and as much as you might prepare for the worst, you never actually do. We spent an enjoyable time reminiscing about the past; my mother, who can be a fusspot, is actually a sweet lady and a big part of my life. If there is anything good to come out of having MS it is the fact that I’m in the UK and able to spend time with her in spite of the fact that sadly I’m no longer in a relationship myself and suffer anxieties about my wellbeing but at least I am home and able to see mother – this may be a strange way of looking at things but there we are …

Every morning after taking my medication I sit for a while to let my body settle and then I get dressed which is liberally peppered with bad language and laughter as I put my under pants on back to front (if I haven’t completely forgotten to put them on), then as my jeans are being fastened, my leg pads are back to front and the electrodes give me one almighty shock. Tying my shoe laces is nigh on impossible as my right hand appears to be completely shutting down. Typing this blog is becoming an issue so I’m definitely going to look into getting software that automatically types as you speak. It’ll still need editing and will probably be even harder for my ex to sort out!! Anyway, back to the dressing which takes me forever on my own. I have the Eagles or Super Tramp playing in the background in the hope the music will spur me on! (It doesn’t!) I could list music that hides the frustration of MS - there are tunes I play when I’m down and feeling sorry for myself - normally Adele or Gary Moore.

I had a visit from my mate in Rutland and we set off to see my good friend LB. I’ve posted a couple of pictures as JS always complains that I rarely mention how we speak on the phone every day and how I’ve never posted pictures of him so this was taken in LB’s home. She’s done a great job of decorating and furnishing the place. We had mince pies while JS had sponge cake (which is strange for someone who eats just about everything else!) We planned a return trip to Rutland after Christmas – we’ll no doubt be chastised for not staying long enough but the one thing JS hasn’t grasped is that too much activity stresses me.

I have no idea why but I experienced a day of falling down - not tripping just boom - flat out. The first fall happened when I had a mate round and it shook him as I fell flat on my face heading for the kitchen. He panicked so of course I played it down as being the norm but in truth it actually shook me as well. Then later on just before going to bed my legs gave way and I fell backwards next to the toilet where there was nothing to grab to lift myself up and to be honest I had so little strength anyway. Eventually I managed to turn and was able to get up on my feet. I have no idea why it happened as, apart from the obvious weakness in my right hand, my legs have never gone before, which is a worry. I lay in bed going over what I’d eaten and what I’d done, knowing really that there was no answer. I wasn’t panicking but knew I’d be bruised and sore the following day. I hadn’t experienced anything like this before - yes the odd trip occasionally, but to fall completely flat out? Well, I can see Sumo-type padding being needed soon! I make light of it all if anyone asks but wasn’t great falling down onto the toilet brush.

I’ve taken my friend MR to hospital a couple of times recently. She has CP and is a very organised lady - or so I thought. The first appointment was for a scan and we arrived in plenty of time, had a drink and made our way to the imaging department, only to be told she wasn’t due for another three hours! You can imagine the grief I gave her! We headed back to the café for another drink to kill time and I knew I’d get some mileage out of this! I’m sure she checked and double checked the second appointment before we went - she really is great fun and we do laugh.

The weather was so cold, grey and wet through most of December that the little Christmas spirit I’d had slowly seeped away. I’d done all my shopping online and bagged it up so I was at least quite relaxed about that which is quite an important consideration these days.

I’d arranged to spend the weekend with someone very dear to me in Stafford – she’s always been there in one way or another and since I’ve been back in the UK we’ve made numerous plans to meet up but each time either I’ve been too ill or she’s been too busy. On this occasion my car had been making strange noises for a few days, as though the brakes were grinding and this would never have stopped me as I would simply have left earlier to get the car into a repair shop. (Those who know me are aware that despite driving hundreds of miles and perhaps a little too quickly, whilst in the States I paid no end of $$$ in speeding fines - always showing my UK licence and playing the innocent, apologetic Brit). Anyway to get to the point – and the reason I was typing this up at 04.10am on a Sunday morning was that the odd niggle of Neuralgia had returned with a vengeance. This time it felt like the back of my tongue was being stabbed with little needles so after taking pain killers and reluctantly having to swallow them down which caused so much pain, I was not a pretty sight; dribbling at my computer in the middle of the night but at least I could type away without disturbing a sole and hence I had no choice but to cancel my long anticipated journey. We will re-organise but I was annoyed as I was keen to see my sweet, caring friend – I hope at least after reading this she will hopefully understand.

My mother continued to feel unwell so my sister Nina had to keep going over and taking her out as well as making sure she was eating. I called and tried to be there but because she appeared to be suffering from a cold I was advised to keep my distance. It was all very frustrating right before Christmas Day.

Christmas Day arrived and because my car was off the road for a couple of weeks due to brake pads and cylinders, my sister had to fetch mother while my brother-in-Law came to get me and a couple of my kitchen chairs - this reminds me of the comedy sketch where everyone is sitting round the table at various levels – it’s a Peter Kay sketch that you ought to watch if you haven’t already! Anyway the table was laid out beautifully and looked very festive; the food was delicious and it was altogether a super Christmas Day. Mother was OK and enjoyed herself, as did my sister’s grandchildren. When I got back home my son Face Timed me which was a highlight of my day as he was in America until New Year’s Eve. He looked relaxed and content and we had a decent chat. I shall see him again early in 2020.

On Boxing Day, which I’d been looking forward to, my Step Daughter AJ had arranged to come over and we’d planned to have lunch, relax, watch movies and eat chocolate! We accomplished all of this – we had a decent lunch of potatoes, pigs in blankets, a selection of meats and pickle. AJ mashed and then fried up the potatoes and I have to say it was heaven. We exchanged gifts – I’d bought her various bits of makeup and she got me a perfect Donald Trump mug! I have a liking for weird and wonderful mugs and I shall be making sure I’m drinking from it when I chat to my American mate TB on Skype as he loathes Trump! AJ and I chatted and spent the afternoon watching films and seeing who would be the first to shed a tear; no prizes for guessing who won that!! So I spent Boxing Day afternoon in the company of not only a stunning young lady but a pleasant one; I consider myself lucky that I’ve been able to retain a relationship with her.

Now I have to report that my right hand has steadily become totally useless and when I decided to change my jeans I couldn’t button up after using the bathroom. This is especially annoying for me as I’ve always worn jeans with button flies. I know I keep going on about being unable to write but the deterioration now is so bad that even typing this last paragraph has been unbearable and it really is time to get the software I mentioned earlier in this blog.

My concluding piece for December is about a trip to see my mate JS again – the one pictured with myself and LB earlier. LB came with me so she could do the driving since I still only had a loan car which, although lovely, was difficult for me to drive without hand controls. We arrived in plenty of time so took a little detour into Melton for a cup of tea which was very pleasant and as lunch was imminent we managed to resist the temptation for cake! Sure enough the food was being dished up just as we got there - every seasonal treat you could imagine, followed by Christmas Pudding and boy was it delicious –heaven. We were absolutely stuffed and retired into the lounge where the usual reminiscing took place and we laughed as the stories got more exaggerated!! Normally I leave early because of the dark and my tiredness but this time I wasn’t driving and it was my friend LB who had to get back to look after her grandson. Every time I visit the food, company and in fact the whole visit is excellent. Such great friends.