It feels a bit strange writing what is, for a while, a Bi-monthly blog. I haven’t even started thinking about the much-discussed book but know I need to make a few notes as my mind forgets easily what I did yesterday let alone years gone by! February started with a Speed Awareness Course; I’m cussing just thinking about this because I was ‘caught’ doing 30mph in what, for years, was a 40mph area. Recently that changed and I know I should’ve seen the signs, but I didn’t, so there I was with 26 other reprobates in the afternoon session of this course that we’d all paid £88 for. Not bad earnings considering there are two sessions per day, which equates to a substantial haul as I believe they were there for three days. Anyway, my licence remains clean and point-free and I now drive as though there’s a person with a red flag walking in front of me!
I made a couple of trips to Heathrow to drop off and pick up my sister who’d visited her son in Texas. I know how much she enjoys seeing both her son and grandson and with that in mind, I’ve booked tickets now to go to Sarasota to see my son when he gets married in November. I’m really looking forward to it and the preparations have already started for me; diet and exercise; two things I find very difficult. I need to be careful with exercise as with MS I get tired quickly and need to approach things slowly. As I’ve said before, I sometimes forget I have this illness and its associated limitations. That said, I think I’m getting there. We all know I’m pretty useless regarding my food intake as I sit alone in the evening and tend to pick at food. During the day I find it hard to eat healthily - but hot pie is far more pleasing than a stick of celery and as for the thought of ice cream, well enough said. But every day I look in the full-length mirror and I’m convinced I can see a difference! I’ve cut out eggs altogether as well as cutting down on dairy, sugar and chocolate. I still make my slow cooker meals - I’m getting better at them and they’re full of healthy ingredients so it’s all a step in the right direction. I’ve even invested in a new slow cooker that you can literally bounce off the floor and it won’t break – I had fun demonstrating this little party trick to my ex!
My friend JF who I talk to most days, phoned me in a bit of a tizz and was altogether rather upset. On questioning him he gave me a lengthy story about how he’d noticed that one of his two pet budgies had seemed a bit off colour; he’d stroked its chest and made sure there was plenty of bird food for it. He’d then had trouble sleeping, worrying about this budgie and got up at some unearthly hour only to find the budgie dead at the bottom of the cage. He was really upset. Apparently there had been issues with this budgie before – and therein lies another short story! JF had promised me one of the potential offspring from this birds as he was convinced that his male and female budgies would mate but the (now deceased) male budgie had paid no interest at all to the female, leading JF to conclude he had a homosexual budgie and consequently felt rather annoyed that would be no little ones chirping away! I think he felt he’d let me down by not giving me a baby budgie that he was convinced I wanted. His two budgies had given him a lot of pleasure, especially when Felix the cat stared at them, probably fancying them for his dinner. The budgies knew they were safe though and would chirp away without a care! Sadly, there is now only one and JF decided to put the deceased budgie in a box (which I believe used to house a pair of Raybans) and asked me to the funeral - I made my excuses! The man is not the full ticket!!
I attended another 60th Birthday - the joys of getting older! This one was my brother’s ex-wife who I have remained friends with. I went with my companion and partner in crime, LB. It was a fancy-dress party but we decided not to dress up, which was probably for the best as we couldn’t have competed with some of the excellent costumes there. I had briefly considered going as Charlie Chaplin since I also walk strangely and carry a cane but I knew we wouldn’t be there very long as I get tired quite quickly. I bumped into a girl there who I’d had a huge crush on when I was a lad; every time I saw her, I used to go all kind of funny! Well, blow me she had the same effect on me at the age of 61 - I was all starry eyed and pathetic. She’s as lovely today as she was then - life certainly has some weird twists and turns. My mate, LB, was in love (as normal) with an old school chum who was attracted to her and as usual she was in her element! I suppose we should make more of an effort - and to that end I’ve booked a 70’s Weekend at Butlins because I did it last year and had a real laugh.
I’ve talked before about how I plan every day ahead, just in case I have a slow one and sure enough, one morning I woke up (knowing I had nothing booked in) and boy did I struggle to get out of bed. My balance was non-existent, and my limbs were refusing to move. I forced myself out of bed at 9.00am which was late for me (because I hate being in bed) but I actually slept on and by mid-morning I needed to take my medication so had to get up and if anyone had seen me they’d have been convinced I was drunk. I very slowly pulled on shorts and a shirt, then made my way very unsteadily into the bathroom to freshen up. I took my tablets and just sat there. After about an hour I found the strength to make a bowl of porridge, which is a case of adding milk and popping it into the microwave; a simple task for many but a big effort for me. This probably seems ridiculous to people who know me - 6ft tall and normally strong as an ox, but believe me, while I wasn’t in pain, I felt absolutely useless. I spent the whole day doing nothing. I couldn’t remember the last time this had happened, and I sat there mentally going through everything I’d eaten over the last couple of days. These days I always look at the ‘traffic lights’ on food packaging (then try to read the ingredients that are so small it’s virtually impossible) before I buy it but I really couldn’t think of anything that might’ve set this off and to be honest I don’t get stressed either so it was a mystery. By that weekend I felt reasonably well and hopeful that the MS meeting I’d organised could still go ahead.
As it was, the MS group get-together had a decent turnout, despite one guy ringing to make his apologies but the group is definitely growing, and we will nurture great friendships as we go along. While we sat chatting and drinking coffee at a local hotel, a guy came over and introduced himself as Chairman of a charity called AIMS, helping MS sufferers with a procedure involving chemotherapy. What a coincidence and how bizarre that two MS meetings were on in the same hotel at the same time! We were invited into their meeting and it was interesting especially as one of our group is a young mother of two boys who wants to explore anything that may help. As the weather improves we’ll look to change venues and have days out but I accept the importance for us all to talk about MS and our experiences because sometimes it’s a comfort to know that the things happening to our bodies are not uncommon.
Following my setback I’m pleased to say I started feeling pretty good and was even told I was looking well too which I’m sure was down to my diet (cutting out dairy and eggs) and the exercise I’m doing at the gym late evening when most people have been and gone already! I think my recent body shut down, coupled with what I thought was a UTI, turned out to be a cold. I’m determined to be in better shape by the end of the year, fingers crossed.
I was on my way to meet Damian, a great friend of mine from way back and my mind drifted back to the early days when I took things like driving for granted. I had an Alpha Romeo GT with manual gears - a performance car which was nice and low but over time I struggled to get down far enough to get my legs in! Then drop-foot became an issue so before I knew it, I’d be speeding along without realising; as a result, I decided to change to an automatic car which was adapted with all hand controls. While it wasn’t the greatest choice, it allowed me the freedom to get out and about. These days, getting into the driver’s side of my car can be quite tricky, but it’s do-able, whereas the passenger side is almost impossible because I have to get in with my right side first and the MS affects the whole of my right side so I struggle to lift my leg because of the drop-foot. All this performance is probably the reason I tend to pick people up, so they don’t see me struggle. My friend, GH, who I go to lunch with, recently took delivery of a brand new soft-top Jaguar and has offered to pick me up in it next time we go out but the mere thought of it makes me feel uncomfortable so I will no doubt take my own car. It probably seems ridiculous that something so simple can play havoc with my mind, prompting my anxiety to kick in. I have no doubt that people reading this (who’ve known me forever) will find this hard to understand because nothing ever fazed me in the past, but there you are.
After the recent MS meetings as we shared our experiences (like my car struggles and anxiety) and the realisation that we’re not alone, it got me thinking that maybe a podcast is needed; I have no idea how that works or what it entails, but there are sufferers out there who never get to talk about the things that worry them or things they need answers to. These are often things they can’t get from the professionals either; perhaps because they’re too scared or just not confident enough to ask. So we’ll see about a podcast as I feel it’s do-able with the help of a few capable people I know and as I’ve said before, the book idea has to take a back seat.
So, I digressed from the start of the previous paragraph when I was on my way to see Damian! As usual it was great to see him and we laughed and reminisced. I’d also arranged to meet up with a new MS sufferer at the same place (killing two birds with one stone!) This lady was lovely and will hopefully attend the next meeting. When I arrived home afterwards, I had a visit from CL to finish off what was an active and thought-provoking day. My mind was buzzing well into the evening. I have long ago recognised that being on your own allows the mind to wander off and I’ve often mentioned memory corner, where I have photographs of people who have (and still do) play a part in my life. I also contemplate where I am now and what the future holds; I convince myself that all will be well and I’m sure it will be. The young mother I talk about often thanks me for helping her and for being so positive but sometimes I find it hard. On the plus side I see more of my son now which makes me very happy and although we may not say much, you just know things are ok. He’s actually a very good communicator and is running a good business so I must have done something right!!
The forecast was for more rain and we, like most of the world, were living in fear of the Corona virus as we watched it unfold in Italy; so much started being cancelled and my mate TB delayed booking any tickets to come to the UK, with travelling becoming such a big worry. My ex CL had recently booked a holiday to Thailand with her partner, but I hoped it would be cancelled as I worry not only for her but for him too as he really is a decent chap. I’d only booked a short trip to a 70s weekend at Butlins in Minehead and couldn’t foresee any problems with crowds; I decided I could always ask (insist) LB wears a balaclava to prevent infection!! Seriously it has become crazy; my mother blames the things that we’ve sent into space because it’s not right in her mind to have all this junk floating around up there! In her opinion it’s the reason behind global warming, this new virus, rain, in fact everything, bless her. In fairness, she is 83 and lives very much in the past, but there are times I look back and think the world was a better place; people talked, kids treated elders with respect and there seemed to be less illness. I also recognise the fact that I am getting old!
My visits to the gym have been going OK. I don’t push myself and as soon as I feel a bit light-headed, I call it a day. Gone are the heavy weights and speeding on stationary bikes - I am slowly trying to increase my time and overall, I feel fine. As I write this, I have finished one session which I started at 9.40 and finished at 10.20pm and after getting home, drinking water and taking my meds, started typing this up before falling into bed. No doubt tomorrow I’ll start the day slowly, see what energy levels I have and how my body reacts. I find it hard accepting that things are so different. These days I struggle into the gym, wires hanging from my shorts, cane in hand and my electric pads sending signals so strong you can see my whole leg tense up. At times it’s quite painful but without it I wouldn’t be able to walk and then I’d be completely useless, but the fact I try to alternate nights is a sign of my determination. As far as my diet goes, I’ve only snacked on red berries and bananas – none of the usual chocolate bars or crisps. I will get there as I’m determined to be in shape for November.
A common cold for many is a walk in the park but for someone with MS it’s a different scenario. Mine started on a Sunday and by Wednesday I was over the worst. Actually I needed food by then so I had to get myself up and out, but boy did it knock me about; (can I just mention here that there are people who offer to shop for me but I am determined to do things for myself as much as possible). I had no balance, no strength and I constantly felt tired but the only thing to do was sit the damn thing out. Naturally I blamed the MS for the fact that a simple cold had knocked the stuffing out of me, and I cursed the day I got it. I had visits from my neighbour and my ex who I would seriously be lost without, not only for their company but because I get a cup of tea without spilling half of it before I get to sit down! Once again, as always happens when I sit on my own for long periods, my mind starts to wander to the past and I reflect on the highs as I look up to my collection of framed pictures. I start thinking not only of past loves but the tricks I got up to, like walking the hills in Scotland with my mate SS, or the time in Spain with my ex when I’d decided it was cool to go out wearing white shorts and t-shirt, when a strong gust of wind knocked a glass of red wine all over me! But reminiscing isn’t a great idea when you feel awful. Anyway, later that afternoon I’d promised to take two lads to the cinema and that spurred me on to snap out of it - even though the film was Sonic the Hedgehog! I must’ve had a momentary lapse of madness when I agreed to it but I had no doubt I’d enjoy it regardless.
The monthly MS meetings have been gaining momentum and I received a phone call from the wife of a sufferer, asking questions about the condition as she naturally has concerns for her husband. I think all MS sufferers need a friend in a similar position - and not one who is negative, but one who fights with a smile; as I’ve said so often, this is exactly why I write this blog and why we are now having monthly MS get-togethers; it’s so important because the reality is that dealing with MS can be a lonely, frightening place for some and often a friendly voice is all you need.
Following my recent cold, I was naturally thrown off the exercise regime that I’d built up but fortunately my diet hadn’t suffered since I hadn’t really felt like eating. I drank plenty of water and ate pineapple but as my runny nose, sore throat and the general feelings of lethargy were fading, surprise, surprise the Neuralgia in my mouth came back with a vengeance. I couldn’t believe my luck as a shooting pain so severe it took my breath away, shot through me as I opened my mouth. I’d forgotten how awful it was and hoped that by the following morning it would have calmed down or (please God) gone for a while as even I need a few days where I feel good. In this MS Awareness Month, I hope reading this gives you an understanding of exactly what it can be like; one minute calm, where life is bearable and the next fighting just to keep going and trying not scream. (Ok scream is a bit dramatic, and I tend to swear instead as I find it’s a great reliever!)
Today I had my feet done; admittedly something I guess a lot of men might shy away from but I love it! When I lived in Florida I regularly had a manicure and pedicure and felt great afterwards. Generally I feel great as the pain killers are beating my Neuralgia, my diet is going well and I’m back doing exercises. I had to start all over again and was back to where I’d been months ago, but hey, I’m doing something. The Corona virus I mentioned earlier has hit the country hard and pretty much everything started to be cancelled, and our country was placed into lock-down - where will it all end? I feel quite annoyed about losing my 70’s Weekend as it places yet another restriction on my life; what with dealing with MS I now have Corona to think about.
So currently there are numpties collecting as much toilet paper (!) and food as possible; there are supposed to be a couple of hours each day where key workers, the elderly and slow, doddery folk like me get a chance to shop at a speed that is acceptable - but no, I was barged away by a rather large, busty lady who was determined to fill her trolley with whatever she could get her hands on! It’s crazy, this virus does not affect our bottoms; it’s our respiratory system that’s affected, but we will always have idiots racing round like mad, stock-piling toilet rolls, tins of food, dried pasta and jars of sauce like we’re approaching a famine at breakneck speed. Seriously though, it’s a great time to people watch. On the positive side, I have also witnessed kindness; neighbours have called by, members of my family and indeed my ex have all been superb. Now we are in total lock-down with pubs, clubs, parks and gyms completely closed, what will I fill my day with? No female company, useless television and no park café to visit my dog walking friends?
My sister, (who now works for an undertaker) who is always there for me and organises all my meds, changes my bed sheets and does as much around the house as possible, invited me over to do a funeral plan; I know it sounds dark but actually I had been paying far too much into a plan I already had and with her new job she has access to competitive deals! While I was there, she cooked me a big breakfast, all grilled so very healthy and absolutely lovely. I’d forgotten how much I missed my big breakfasts.
So a quick recap; the Corona virus has gripped this country, everywhere is shut, no sporting events or concerts will be taking place for the foreseeable and we have a ‘keep two metre distance’ plan in place. The world is a different place. I must self-isolate – me, the most personable person who loves meeting people! What am I to do? I can’t hold a pen so there’ll be no drawing or crafts and no walking with my useless leg. I suppose I could go out on my scooter but that’s not going to happen. Life will be different for a few months and this blog will be different as there’ll be no adventures to write about and hopefully please no virus for any of us. So to you all, stay safe and be kind and thoughtful to all.
Until next time …