I can’t actually believe it’s June – we’re half way through the year and I can’t help wondering where the year has gone and what happened to all the plans I made that didn’t materialise. Obviously Covid stole the first part of the year and looks likely it has changed the world forever so who knows quite what the future now holds. I joined a gym that had to close but I am still trying to eat well (he says, eating the last of a Crunchie bar that somehow just fell into my mouth). I‘ve been trying to exercise at home but the pain from my tongue and mouth has been so bad and exercising aggravates it. It reached the point at night where the pain was so bad I resorted to taking a drop of pure cannabis (ask no questions but desperate times call for desperate measures). Suffice to say I managed to obtain some from a friend, (I’m beginning to sound dodgy!) but in the States you can get it in a vape whereas here it comes in a syringe and I promise I am no junkie!!!
When the lockdown eased a bit I spent a day in the park with my friend and fellow MS sufferer along with her two boys; she actually put together a picnic, bless her. It was great fun – we chatted and kept moving from bench to bench to stay in the shade and everyone passing either said hi or stopped for a conversation. My friend was surprised at how many people I know and how confident I appear, being able to talk to anyone but as I’ve always said, the walking and tiredness I can deal with but the restrictions of talking due to this Neuralgia are what I find hard. The day and the weather were indeed perfect; I really enjoy the fact that now the weather is changing I’m able to visit the park and my friends.
My mate JS visited and I knew straight away it wasn’t going to be a relaxing day! He came into my tidy bungalow and moved all my cushions around, knowing that my OCD would kick in - then he moved the drink coasters too just for fun. This guy is a complete nut case but boy do we laugh! We went shopping where I bought fresh food from a lovely store which I then prepared and it was excellent. My next door neighbour who also joined us, ate so much yet still complained that there was no coleslaw and there was water missing from the table - amazing, you just can’t please everyone!!!
Then we acted like children, asking Alexa to make the sounds of breaking wind (farting for us commoners) which had us laughing like idiots. Then we found YouTube also has the same thing so there we were with three phones all making disgusting sounds and boy did we giggle! We also went through old photographs, sharing memories of days gone by. Luckily due to the increased amount of painkillers I was on, I had a virtually pain free mouth and was so happy to be able to talk and eat!
After unprecedented good weather we suddenly hit a cool patch - What the heck was going on? I was suddenly freezing and seriously thinking about putting the heating on. The cold really doesn’t agree with me; my body seizes up, my fingers stiffen and my legs feel like lead. This MS is so confusing – when it’s hot I have to protect my head so I don’t overheat. Then getting in the car is an issue and as for showering … once in, is a relief! Never a dull day!
For those that know, I am obsessed with cleaning and keeping everything in its place but the bathroom is an effort. I have to take a chair in and sit down while I scrub away for 10-20 minutes then rest for the same amount of time. Then I soak the shower curtains in bleach before putting them into the washing machine. I need assistance hanging them back on the rail as my right hand and my legs can’t cope – they literally start going as I stand at the sink and I drop into a squat like stance. Anyone with MS will relate to this but I appreciate how hard it is to grasp for most people how a well-built chap like me can have such a problem. I doubt many consultants or specialists really have a true understanding of the various issues and effects this illness throws up but the end result of my cleaning isn’t that bad and I have a clean washroom, happy days!
There are times, and probably because I’ve had too much time on my hands during lockdown, when the frustration of my MS is more evident. One morning recently I was slow getting up and as I headed for the shower, my legs completely gave way for no apparent reason and I literally folded like a concertina, crashing to the floor, catching my head and arm on the door on my way down. As you know, I usually try to laugh it off when this happens but this time it was so unexpected that it annoyed me and for the rest of the day I was slow as well as struggling with the constant Neuralgia pain and with the addition of blood from my arm and a splitting headache. The result was that I spent the day gazing out of my window feeling useless and remembering how life used to be which added to my consternation. My ex popped in looking absolutely lovely, bringing with her photos from the past; they were happy times and great memories came flooding back - pictures of me and her daughter, when she was about eight and loads more. I posted a few on Facebook and had lovely remarks but if the truth be known, I was thinking of the time I walked with ease and the frustrations of no longer being able to walk, work and earn money crept back. All these restrictions caused by MS have stopped me being able to do the things I loved. I make changes, my life is slower and my expectations are minimal so I’ve tried to accept it as best I can. I also looked at our wedding photos - that day was without question one of the best for too many reasons to mention but the cost was something that I’d never be able to afford again because I can’t go out and do what I do best – sell and manage a team of people. But I have the memories and thankfully the people that matter, so I suppose I should take comfort.
I’m feeling quite lucky in the female stakes as a lady from far away has been corresponding with me; she is elegant, (as the pictures she has sent suggest), and like me has a series of ailments making her life hard. She has a partner who really has no idea what life with a disability is like and I hope writing these blogs highlights some life issues that people face regardless of their condition. It’s also important to remember that many problems are invisible. Anyway, back to this lady - we exchange emails on a regular basis and I hope to meet her very soon as I know we will be great friends and in a way she has become a joy in what can be a boring day.
During these strange and depressing times I’ve thought about not writing these blogs any more but a number of people and groups have requested I keep on, so as a compromise I shall put out a bi-monthly blog. It’s actually quite hard to write about doing nothing and I don’t want to trouble my ex too much as I’m still thinking of putting all my previous posts together with a little more background detail and making it into a book format, which I will also need her help with so let’s see.
More recently I’ve been feeling the best for a long time partly because the Neuralgia eased off due to the increase of pain killers and my whole being is in a better place. I accept walking is still an issue and the use of my electrodes (FES) will always be part of my day. I’m also aware of the weakness in my right side, but apart from that and the constant tripping and falls, I’m actually great and feeling good. (My ex and I have just laughed at the absurdity of that sentence! but if you can’t laugh you’d cry!)
On Father’s Day my son and his wife-to-be called in for a visit and talked about their wedding plans and what they will or won’t be able to do. I really hope that the wedding can go ahead in November but regardless, I would still like to go over as I keep telling my friend that he needs me because senility is creeping in and his efforts with females are in need of my English charm. We must keep our fingers crossed that this pandemic clears up and the wedding in sunny Sarasota, (my home for many years) can take place.
I’ve noticed that my morning routine is taking longer which is a sign that MS is actually with me. I fight it during the day but getting started is, mostly, a nightmare. I know as soon as I wake up if it’s going to be an effort – I can literally lie there for half an hour before I can move. By nature I have always been an early riser but I know sometimes that I can’t move my limbs. On days like this, I lie for a bit then roll myself out of bed onto the floor and make my way into the lounge to my chair – sometimes crawling to get there. Once in the chair I could (on a bad day) sit there for several hours, only moving to get to the bathroom. Other days I can move and attempt some stretching exercises then do a few squats holding my dumbells. I then try to tighten my chest as I am definitely sagging in this area before making my way to the shower, gripping the handrail as I wash. Drying myself can be an issue as my balance is always a problem – I wonder why nobody has invented a great bit dryer that blows warm air all over your body cos that would be ideal! Generally I just sit and drip dry. Putting my contact lenses in can be a problem and I often end up poking my eyes as I have no control over my right hand. After what can be a long time I return to the bedroom to attach the FES pads - I have lines drawn on my legs that indicate the best position and hope that I position them somewhere near as boy does it hurt when the first shock of the day is applied. Once they’re on and all the wires are attached, I protect them with a stocking bandage to keep them in place and once my clothes are on, I’m good to go. In the evening I take the pads off, coat them with gel to keep them sticky and put them away. So you can see it is an issue and also (when/if the opportunity arises) something of a passion killer. On a serious note, you have to understand that without these pads I wouldn’t be able to walk so they are my life line. Uncomfortable, yes but you tolerate it. Many people see me as buoyant and have little or no idea of how I’m feeling - it’s a defence mechanism; I have anxiety when chatting to females, even though I’m a flirt but when it’s one to one I think of all my problems and issues and it becomes easier not to take things further. These are issues that are common to sufferers of this illness. One thing I do know is that I’m not going to be single going into old age!!
The weather has been so unpredictable, raining and windy one day and the next day you have to guess as the sky may be grey but the sun is trying to break through; this not knowing with the forecast not only restricts my little trip to the park for daily exercise but also for washing my laundry - I fear hanging it out to dry in case it rains because I’m not quick enough to get it in and could then be lumbered with wet washing. To most this would be a minor thing but for me it’s a genuine issue and the effort to get the washing out in the first place is enough of a nightmare, never mind rushing to get it back in again! And obviously not overlooking the fact that I’m no longer the racing snake I was but more a lumbering walrus these days. (I know, I am a master of comparisons!!)
My mate in Florida went down again with another suspected case of covid; he was sweaty, weak and generally unwell and trying to get tested in Florida has been almost impossible because America has seen massive spikes so testing places are swamped. It really is a worry, not just for my friend but for the States in general. 2020 I believe will be a year to forget and I am now setting my own defences up, having food delivered, taking fewer trips out, wearing a mask and constantly sanitising my hands, and always aware of those like myself with an illness or disability.
One of the things I try to hide from family and friends is my stumbling and falling. I kid myself a little that it’s due to me forgetting I have MS so I turn or stand up too quickly, forgetting the FES electrodes aren’t switched on. It’s so annoying as there are times when I feel great and it’s the easiest thing to do but recently I’m aware that I’m falling because I’m not feeling too good and then my balance just goes. Blaming this on the increase in pain medication is the easiest thing to do but deep down I know I try to do too much – and even as I write this, it sounds ridiculous to say I do too much when the reality is that I used to do far more than now. It’s very hard to accept what I have and the constraints I now deal with; for instance let’s talk about the Blue Badge and parking in a disabled spot; I constantly let people know how easy it is to park near an entrance with my badge on display, when the reality is that I’m actually annoyed by it but it’s another part of having to accept my condition. It’s similar to when I drive on a journey of 60 miles and have to remember how tiring that will be for me and yet I regularly used to drive over a 1000 miles without giving it a second thought when I was working. Now I sit watching other people tending my front garden because I find it difficult to do even the most basic of tasks now. Having MS is bad enough but the issues it throws up are unbearable. Another today I went to the park when the sun was shining and forgot my hat so my head was in direct sunlight - getting to my feet was an effort and making my way back to the car was a bigger problem so someone kindly walked with me, and as nice as it was, it’s another acceptance of the state I’m in. I doubt that I’ll ever get used to it and I suppose my humour acts as a shield; I hear people say how good I am and what a shame it is for me but these are not words you ever think you’re going to hear and whilst they are meant in kindness it frustrates me. The enormity of this illness hits me every day from the amount of tablets I have to take every single day to the changes in what I can or can’t do – I have been robbed of my ‘normal’ and it upsets me more than people realise. Yes this is an expression of self-pity which I’m sure anyone with a debilitating condition has to come to terms with.
On a brighter note, I took my neighbour to dinner at my friend’s house (as he too has made friends with her). As usual the food was excellent and we sat chatting with her and her son. I was the butt of the humour with the son cheekily amazed by the amount of female attention I get which convinced him that I must be paying them! I wish … if only one of them had that little extra-factor to share some special time with. Anyway we had a great evening at her beautifully refurbished home that she recently moved into. I then returned the favour by inviting her to what is now known as Faggot Friday and for anyone who has no idea what a faggot is, the best description would be a sort of soft meatball with gravy – delicious! My cooking skills leave my friend JS highly amused as I don’t have any but my oven heats up a delightful meal of home-cooked fare from Banners where I order all my meals from these days.
As I mentioned earlier I know I have too much time on my hands which makes my mind work overtime, thinking about things that probably shouldn’t matter, like my personal life. I’ve probably said before that in the past I was spoilt by having the company of two beauties in my life (not at the same time I hasten to add) and I’m aware that finding another special lady is proving hard because however hard I try, you can’t help making comparisons and I miss the company of someone special. Don’t get me wrong, I have plenty of friends but sometimes you need that special someone in your life.
On a plus point my mate in the States is feeling better, scare over.
Last week my mother came to mine to have her hair cut and styled. The person doing it for her was my Ex-Ex – ie the mother of my son and while she was cutting mother’s hair, I nipped out to meet my Ex (proof reader on this blog!) for coffee and cake. I know to some this might seem strange but I’m happy that there are no bad feelings and I actually love the fact that I get on with them and know that if I really need anything they’ll be there. This paragraph made me smile though!
The other morning I was so slow starting my day in what seems to have become a pattern. I don’t know if it’s the change in the weather or my diet. I know it can’t be stress as I don’t have any but as much as I tried my body just wouldn’t do what I wanted it to. With the added pain of Neuralgia I’m aware that my condition is not in a good place; I’m losing my grip which meant that the night before I couldn’t open a jar of beetroot and had to go without. It might not seem like a big deal but the struggle I have just holding onto things and trying to open them is so tedious. Even a bag of crisps (chips to my American readers) is proving difficult (on the bright side I can’t eat so much junk!) but I’m fully aware of the situation; stumbling and falling when I lose balance is common place. I know you probably think I say nothing - and nor will I as I battle on, but you need to understand that this illness can take hold at any time. The following morning, although slow, I managed to get up and out for lunch with my friend DW who is always a laugh and shares my sense of humour, so I was glad to meet up with him. Later the same day my neighbour and I went online to purchase masks for members of our neighbourhood who are relatively housebound as we believed it would help them. Yes, we’re a couple of softies but looking out for others gives you a great feeling
I’ve started having really vivid dreams, (or what I recognise as being dreams), where my mind travels back to the various companies I used to work for and the people who played a big part in my life at that time. These dreams are not only very vivid but strange and as well as work colleagues I see females who I got on with and a few guys who were instrumental in my success. I’ve even woken up and asked Alexa the time, (04.20am was her answer) gone to the bathroom then back to bed only to pick up where I left off. In all these dreams I’m completely well and physically fit, smartly dressed and very efficient in all my roles. I feel that sooner or later I should end up in the present day, maybe walking slower with a cane? What relevance is all this, you might be asking? Well only that after one of these dream episodes where I was fit and healthy, I woke up pain free and exercised more than I have done in a while, feeling positive and full of life. Is it or was it an after effect, I wonder? Who knows, but the day got better as I visited my friend in Worcester. It was her one sons’ birthday and a great visit it was as the son was excited as expected. After I got back, I had a surprise visit from my step daughter, (I hate calling her that – step - as I look on her as part of my family). She was off back to London after a long stay with her mother through this shut down and I know my ex will miss her as she’s a breath of fresh air, beautiful too. All in all after what was a strange start to the day it finished on a high.
After another Faggot Friday I was invited back to my friends’ to have a curry. Now I’m not the best where curries are concerned because too much spice can slow me down the next day, but this homemade curry was full of flavour, with poppadums, Naan and Indian roast potatoes (Sag Aloo). To add to the evening we had authentic music playing in the background and it was actually a fantastic experience – we’ll talk about that evening for some time as we had great food and a good laugh. Surprisingly, although I was suffering with severe Neuralgia pains throughout the night I anticipated suffering the next day but it was completely opposite - a day free of pain and feeling great; so much so I took a trip to a friend who was celebrating her birthday and managed to arrive just at the right time as she was serving up lunch! You know me; I stayed for a while as both she and her boys are good company.
For the rest of this month I’ll be doing my usual mundane things like having a pedicure and trying again, (Neuralgia pending), to master the harmonica, make a visit to my dentist to ensure these pains are indeed nothing to do with my mouth and the rest of my time generally being my normal self – I realise normal is not a word to describe me but some of the enclosed pictures may say otherwise!!!!