There are times, like now, when I think I sound like my mother because it’s suddenly February and I wonder where the year is going and how fast time is moving. It’s not long since my January blog and with the freezing conditions at the start of the year, February started slowly for me. I tried to stay awake to watch the Super Bowl which was something I often watched in the States. I actually enjoy American football and to a degree I understand the game but there’s a big difference between being here in the UK with the heating on in the early hours of the morning while over there I would’ve been in a bar with a crowd which certainly makes for a better atmosphere. None the less I watched the Patriots walking away with the game which was quite predictable really. I knew a few people over the pond that followed the Pats and for that reason alone I was pleased. I remember it being a bit of a shock when I lived over there at all the games that were screened and followed - Baseball, Ice Hockey, Basket Ball to name a few and to be fair they all presented a great excuse to have a beer and meet up with friends.
The cold weather has really slowed me down; my joints are stiff and seem to shut down but apparently this is quite common. I post this blog on Twitter and follow a few sufferers who experience the same symptoms and issues. I take no comfort from knowing I share these symptoms but it actually makes me try that little bit harder, occasionally to my detriment but it’s something I need to do. Mentally I think life is better but physically I notice a few parts getting worse, like my right hand that is now so weak regardless of the time I spend trying to strengthen it. I drop things as I have no grip which makes me clumsy and frustrated so I’m looking forward to getting my results from the recent scan. Talking of Twitter, there are some wonderful characters on there who, like me, remain upbeat and appear to cram so much into their lives. This inspires me and it doesn’t hurt that one Tweeter happens to be a real good looker too! Yes, in some ways I haven’t changed and the site of this lady always gets a little more attention!!
We celebrated my older brother’s birthday the first week in February. On each occasion with my family I look round the table and wonder where life has gone. The grandchildren are growing into lovely young adults who you can have decent conversations with now. Then I notice the older members of the family; grey hair and features suggesting we are all knocking on but still laughing at the same old things. I know I’m a thinker as I sit and take it all in - mannerisms, body language and general ways people act. Then I look at mother - I have memories of her spanning over 50 years and I wonder what goes through her mind as three of her children are now 60. I have an illness so I’m slower and my younger brother has passed away, which must really sadden her. She still takes pride in her appearance and she has the silly sense of humour that she’s been passed onto us ‘children’! I suppose times like this tend to make you ponder more about life and how fragile it all is but having said that, we all had a great time and I know the next day I’ll be slow after eating curried banana – how? and indeed why? did someone see fit to put banana into a curry dish I wonder and yet of course I chose it (and actually enjoyed it) and yes I convinced myself it was another one on my five a day! Seriously, an enjoyable evening
So far this month, apart from feeling a bit slow, I’ve been feeling quite well. I made the decision to wear the electronic pads on my legs all day even with my slippers to try and get a little comfort. The only issue with this is the shocks running through my legs which at times are really painful. During the day I seem to accept it as I know that without them I’d be tripping and falling all over the place. I now have a covering over the pads to stop them rubbing on my clothes which was detaching them. It’s a simple thing that makes my life so much easier.
I’m having trouble letting anyone get close to me and think that maybe I have more issues than I first thought or indeed accepted. I have an ability to vividly remember intimate times – what I call my mind’s eye and a particular memory I recall was looking down at someone with their hair cascading over the pillow, eyes that seemed to sparkle and a body to die for and I wondering how someone so beautiful could allow me to enjoy being intimate with them. I realise that memories like these were the norm back then but now, due to my lack of ability to move and perform like I did has affected my confidence and the willingness to let anyone get close. I crave those intimate times, holding someone and spending the evening talking, listening to music or simply just being close. This illness has deprived me of something that was a big part of who I am, or should I say, was. I know people say that if I find the right person, they would accept me for who I am and want me for being me. But to me these are just kind words and maybe it’s because I’m still in love or with the memory of being in love. I try hard to put things into perspective and I’m not always sure whether I don’t want to or simply can’t. MS has robbed me of so much – not just the physical things but the emotional things, my confidence and being body conscious because I can no longer go to the gym and keep myself toned and trim which was all part of who I was. I took great pride in keeping myself fit and looking my best and now I don’t have a choice. I simply can’t take care of myself like I used to. I apologise for my rants and ramblings but I’m just not in a good place right now. I feel a bit deflated that the weekend I just spent with someone didn’t go quite as they wanted it to it‘s down to me to make it clear that I only want a friend, without benefits. Maybe in the past I was spoilt - or simply I have no self-confidence but because of this MS I am truly limited. Ridiculously I’m now thinking back to the leaflet the MS nurse gave me titled MS and Sex – I reckon she got a little embarrassed about it which amused me no end at the time! There we are – I’m thinking funny thoughts even as I’m getting all emotional; it’s all going to be fine.
My mate, who I’ve mentioned in past blogs, has recently been a bit down following his life changing surgery and as hard as it may seem, I’m the one trying to be positive and encouraging him to be strong - yes me. Not currently the greatest role model perhaps but I genuinely care about him and fortunately a bit like me, he’s back on form. Talking to him made me realise that for probably the first two years after being diagnosed with MS I felt awful. A lot of it was to do with drugs and my lack of understanding but also the fear of not knowing how bad I was or would be and coming to terms with how drastically my life was changing. And of course importantly I had to accept this illness. Now four years on, I recognise when I’m tired, how much I’m able to do, what weather affects me and a few other basic things but believe it or not there are occasionally times when I forget and I might turn quickly, forgetting to turn my tens machine on and fall over or start to walk without my cane and lose balance. Funnily enough I’ve never been questioned by the police when wobbling to my car, probably looking a little tipsy and getting behind the wheel of my car! Just an observation but just you watch now, I’ll probably get pulled over!
Valentine’s Day just passed which is a day that seems to upset me more than others as I always loved spoiling the person I was with and spending time together but now I seem to have blocked it all from my mind and to a degree see it as just another day and a waste of time. It’s just another thing that MS, for the moment, has taken away. So I spent Valentine’s with the bingo crowd, watching a film and eating Chinese. The film was a Christmas film and the Chinese has slowed me down the following morning. A memorable day for all the wrong reasons, singing along with Do They Know it’s Christmas, bizarre but funny! All that said, I did receive cards not from secret admirers but lovely none the less.
I’m lending my electric scooter to my mate as I know that right now he needs it more than me. As I’ve said before, pride stops me whizzing down the local high street and I suppose the fear of rotting fruit and veg being thrown at me although I realise this will never happen, pure pride stops me. Anyway my mate will benefit from using my scooter as it will allow him to get out and about to the supermarket and bank and to a degree, relieve his frustrations and the feeling of being restricted. When I dropped it off it took only a short time until he was whizzing around like a nutcase. For a moment my mind went back to when we were both Sales Managers for a large company and running teams of people - we had great plans for the future and I’m sure we never thought for one minute that this is how we would both end up but I believe the most valuable quality we both possess is our ability to remain positive and send each other up as often as required! After all we’ve been through he has remained a great friend. I remember the times he visited me in the States; the bars we went to and drank copious amounts of beer, danced on the poles and generally acted like fools! My ringtone for him is breaking the Law which happens to be my mate’s favourite track but a band in one of the bars we were in played it and it was awesome.
My son also spent a fair amount of time with me when I was living in America; I remember air drumming with my son (slightly inebriated) completely in sync, as we both used to play and we loved every minute. A stand out moment for me was when he surprised me with a visit. I genuinely had no idea and as usual I was talking rather loudly in my usual crowd of friends when I turned around and clocked a decent looking chap behind me and for a moment it didn’t register but then I took a second look and yep, it was my boy! I had a mixture of feelings - it was an emotional time a bit like now, tears in my eyes partly with happiness at the memory and also once again with the frustrations of MS. I had planned to do so much with my boy - go for a beer, help with his business and all the usual father/son things. In fact every time I see the many pictures of him around my place, I think of everything I wanted to do and maybe I think too much. He is grown up, runs a business, has a beautiful girlfriend but I see so little of him. I wonder whether he struggles with my illness - one minute he had a successful Dad, married, earning a decent living and generally good fun to be around and suddenly that all changed - now he’s seen me in hospital, weak, struggling to walk and no longer the go-to guy I once was. These sad thoughts probably mean I do think too much but all this is part of my insecurities and lack of self-esteem. Don’t read this and panic or think “God, I never knew he was feeling like this” let me assure you that I am turning a corner. At the start of 2019 I made a pact with myself to do more and already I’m feeling better as I understand more about my illness and once again I’m watching my diet and trying to exercise more even though it’s still slow.
Talking of new beginnings I doubt that I’ve mentioned that I‘ve taken up playing the Harmonica (more commonly known as a mouth organ). I can guess what you’re thinking – why? Well it’s easy to hold and I’m generally known to be full of wind. I’ve spent some time sucking and blowing – that’s correct - the book said to suck and blow! The sounds I produced were, (if I do say so myself) quite tuneful. I am however mindful of next door - I try not to be too loud but it’s easy to get carried away and for a time I actually thought I was performing – you know, a little hip movement and foot tapping … watch this space and I’ll keep you posted. If I actually get to a decent level I may try and post a tune, who knows?
I had planned to do so much but to be honest who was I kidding - a trip to Leicester, loading and unloading my scooter then the trip back, a day out with mother and visiting my sister has all taken its toll. I refuse to think this slowness could be purely down to the Malteasers I consumed last night as this morning I felt like I’d regressed to how I was in the early stages of this illness; sluggish, unbalanced and to be honest, completely knackered. I had a shower holding on for dear life to my grab rail, sat and dried myself, then just put on a t-shirt and shorts for what I knew would be another slow day, oh the joys!! I had to put a load of washing in and attempted a little dusting as when I’m sitting my OCD takes over. Seeing dust drives me mad, so out comes the duster. The neighbours must think I’m a bit crazy and an awful dresser – picture it though - this man, clinging on to furniture and window brackets whilst trying to flick his duster around and every so often pulling up his ill-fitting shorts! Not the prettiest sight but I suppose it beats my usual baggy underpants (with the odd fall out) sorry too much information! A slow day also means that deep down I want to shout with frustration at not being able to do anything, then the frustration often turns to sadness and the worst part of all is that this is not me. I have so much I want to do but even my washing sits wet on the table as I have no energy to walk to the driers or to hang it on the line. Even writing about it gets me all wound up. So I end up putting on AC/DC and at least I can lose myself in that and let my mind wander. I am learning - I know what I have to do – relax and let it all wash over me but those who really know me will understand how difficult that is. I‘ve just had a thought - mouth organ - let’s have a suck and blow to pass the time!!!
Amazingly just a couple of days later I feel great and my body has been working well so I went to a café I hadn’t been to for ages for my friend’s birthday. Amazingly the ladies working there remembered me even thought it was so long ago – not long after I was first diagnosed and in fact very ill. I was there with my ex-wife which they also found fascinating but actually quite nice and to blow them away again in she walked again as we are both friends with this person! When the birthday girl arrived we ordered coffee and cake and I was annoyed when I found out that had we booked we could’ve had full afternoon tea. The reason I hadn’t used this place in the past is simply because it was too far to walk but now the parking has changed and I will use it as a new venue.
Today I had a call from the States from my special lady over there thanking me for the package I’d sent which had finally arrived and then we chatted and promised to Skype call later as she is incredibly busy and there is lots for us to discuss.
The last weekend in February I am going down to Eastbourne, involving a trip to the Emirates to see Arsenal play Southampton as my mate is a serious fan and really looking forward to it. I’m keen to see them all at Fruscardi’s Ice cream parlour – I can’t think why?! I really do love going down to see my mate and this time it’s been too long. On my return home I will catch up with a very close colleague – again someone I haven’t seen in ages. Reports on both these visits will be in the March blog as my ex-wife who, as we all know, proof reads, is moving house and doing a Yoga course so this is it for the February blog and next month I am off for four days to a 70s event which should be fun. Before anyone asks, yes on my own, a ground floor suite with walk in shower so I will be fine and if I feel slow I will rest but hopefully I will have some great stories!!!