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Bi-monthly April/May Blog

After several weeks the lock down is dragging everyone down. I miss seeing my mother but decided to drop off some flowers and chocolates that my sister contributed to - I parked on her drive and opened the door, “Mother!” I shouted and heard this voice, “I’m on the toilet who is it?” “Who is it?” I replied, “It’s me!” When she finally came to the door still in her dressing gown, I was sitting in the car as I knew she’d worry about social distancing and it was actually quite strange seeing her standing there as we’d usually go for a drive. She’s a star though – she told me about her gardener who’s ‘in incubation’ - her memory and choice of words making me smile. Anyway, it was good to see her and she was pleased with the flowers, chocolates and the visit. I then went to deliver Easter eggs to the lady with the boys who also looked well but having MS and two boys to look after I’m sure takes its toll but it was nice catching up before I went back to my own isolation.

My neighbours on both sides have kindly worked on my front and rear gardens which are now completely transformed and look fantastic. I suppose they recognise that I have no real ability to do it and they have worked wonders so it’s now a pleasure to be able to sit out the back in the sunshine or look out my front window from my armchair, onto the garden in all its glory!

My mate TB in the States suffered with this Corona virus, which knocked him out for a while. We talk on Skype at least twice a day and he too is a fighter but thankfully has come out of it. Whilst chatting we reflect on the good times we’ve spent together and if I could I’d be there now but obviously all travel is banned so instead we sit on Skype and have this banter that is unique; not many people find the camaraderie that we have and I genuinely love this guy like a brother. We end our calls saying exactly that, although he does like to say ta ta, as he thinks he’s being quintessentially British - and it always makes me smile.

My fingers are crossed that by November all this virus stuff will be over as I need to get to the states for my son’s wedding and to spend time with PS as I miss her dreadfully. Obviously my mate TB will be a priority and will be in need of my time as I intend spending as much of it getting him back on track as well as providing him with intellectual conversation! Being in isolation makes you ask questions about everything - and I mean everything - like what is really important and while I have no fear of dying I reflect on everything that has happened in the past with my son, his mother, my ex-wife and her daughter, as well as my life in America and the love I had over there. I sit looking out of my front window at the many people walking by, some old, some young, families and couples, and again I wonder about my own life, past and present, and how I’ve ended up here on my own with this dreadful illness. I think about my immediate family; my younger brother who died, my younger sister who recently had a birthday, my elder brother who I rarely see even though he lives just a few minutes away, and the record I posted on Facebook for the girl I often talk about and I wonder how her and her daughters are coping. I play a word game with her mother every day so I am, in a way, in touch with her. Generally though, life is all upside down and hopefully we’re all taking this time to think about exactly who is important and who you love and care about.

My bloody Neuralgia is worse than ever in my tongue; I’ve said many times and will say it again, I was born to talk and at the moment talking is really painful. Eating is too but I eat soft foods that are easy to swallow. I wake up every morning hoping I have no Corona symptoms and so far so good. I think I have too much time to sit and worry!! The Neuralgia is a real nuisance that continually brings me down.

I had a visit from my ex, and probably because of the current situation and the way we’re all reflecting, we had a deep and meaningful chat about her life in general. I know her new fella will look after her and she talked about the fact that she feels closer to her daughter who moved back up to live with her while her company has furloughed everyone, They are spending more time together than they have for a long time and I think it’s wonderful. It’s things like this which have been forced upon us but have proved so positive. Then we talked about me and my situation and revisited the frustrations that life has thrown at me. I know she will always be there for me but when I think about PS in the States and indeed her, the bench mark is high for finding another partner and it seems like something that’ll never happen for me again and perhaps I’ll go into old age single and alone, much like my mate in the States - another lost soul. It was a deep conversation and actually quite upsetting but perhaps all down to having so much time to think deeply. I guess my hope is that you all think seriously about that person sitting next to you and appreciate what you have around you.

After feeling unwell herself, my sister is back on form, doing the shopping for mother then coming to mine to sort out my meds and clean around. She looks really well and I got confused thinking she must’ve taken a day off work when in fact it was Saturday - oh the joys of isolation! It also means the following day is Sunday and that means a roast dinner will be delivered.

Just a quick moan about the TV; what complete and utter rubbish, considering we’re in lock down and the BBC should surely accept that the abolishment of the TV Licence is a must! Not sure where that came from but seriously I struggle to find a worthwhile programme to watch. It’s probably the same everywhere and in the States it’s no better according to my mate who moans about having to pay for Netflix when he already pays for a subscription to a main provider - the world has in deed gone mad.

I have a routine every morning, where I do stretches and as much strength building as I possibly can before making my way to the shower. During this I have Alexa belting out hits from the 70s, which is OK until YMCA comes on and I don’t care who you are, the dance has to be attempted! Well my advice to MS sufferers is Don’t! I lost my balance, my towel fell down exposing my modesty and despite this I was smiling! The morning rituals of stretching, showering, getting dressed and putting on electrodes can take ages, and on bad days, forget it! However, regardless of any struggle, the current state of the world and isolation, music always makes me smile and is played all the time in my place.

I decided to drive over and visit mother again, partly as an excuse to leave the house and mostly just to see her, keeping the two metre distance. She will not, as I have mentioned before, have internet so Facetime or Skype is not an option and a phone call is the best I can do so I drove over to say hi which was the perfect solution. It was great seeing her and while there she handed me a pile of my school reports dating back to 1966 - boy was I a nightmare! “Could do better”, “Doesn’t take things seriously” and other remarks were listed along with Cs and Ds - yes there were a few Bs but nothing to set the world on fire - it brought back happy memories as I enjoyed school but also liked a laugh and was easily distracted. Then you think how life has turned out, and the fact that I didn’t do so bad considering. I thought about my mother hanging on to these school reports for all those years along with letters I’d written to her when I stayed away from her for a time. It must’ve been hard for her bringing five of us up and now having time to think must have reminded her to look through her box of memories.

During lockdown we have been mainly quite lucky with the weather which was unseasonably warm for April and after a run of hot sunshine we were promised rain which came down sure enough and on opening the curtains I see the ground is wet and the sky is dull. Sunshine really does make all the difference to a positive mood and feeling of wellbeing. The only issue is that we’d had warmer clothing out and now would have to replace shorts with jeans again! This was something I never had to think about when I was in Florida where I would roam around with little on. I remember never thinking about what to wear as t-shirt and shorts was the norm; it was so much easier then … now, apart from clothing I have to think of so many other things and the day takes quite a time before I can start it.

Now you probably haven’t given a thought to me learning to play the Mouth Organ (Harmonica) as I haven’t mentioned it for some considerable time but the fact is, I am actually looking at it again now after giving it what can only be described as a pathetic blow. The Neuralgia has prevented me from getting on with it – there is no other reason. To be honest, part of me now wishes I’d taken up the ukulele instead as strumming a few strings would have been easier! The thing is, I’ve always wanted to master the Harmonica and I feel a bit of a failure but it’s just down to circumstances and I gaze at the thing just lying there knowing that sucking and blowing would normally be things I can do but with the Neuralgia … I’m not giving up, so watch this space!

One of the things I’ve been watching on the TV (which has been good) involves a couple of youngsters from Ireland and it brought memories flooding back of when I lived and worked in Dublin for a while. Boy did I enjoy it - the people there were great and we did some good business while I was Country Director of Sales for Sensormatic, covering North and South. The Troubles had just finished so Northern Ireland was a great opportunity for us and the South was where we procured most of our business. Just thinking about my time there I could fill pages telling you stories that would make you laugh and make your hair curl! It truly was a time I’ll never forget. The house I lived in was unique - the bedrooms were on the ground floor and the living area had views looking over Leopardstown Racecourse and was on the first floor. It was a short drive to my office where I had a great bunch of people working for me. Dublin was indeed a great city and I really could go on about it for hours but I‘ll resist for now. Who knows, it may crop up again as I’ve recently tried looking up a couple of people from back them … memories hey.

It was my ex (CS) birthday and whereas I usually celebrate with her, this year is different with everyone in lockdown and she has her daughter with her too so a couple of days beforehand I gave her a box of beautiful handmade cupcakes and a gift to open on the day then messaged her on WhatsApp on her actual birthday. It felt a little strange but I knew she was enjoying the day. Talking of food! I’ve recently started having fresh meals delivered from the local butcher/produce store called Banners where everything is additive free and delicious and on Sundays I generally get a roast dinner from my sister. For the first time in a long time I was able to eat with no pain as the Neuralgia only appears in the evening at the moment which is both a joy and relief as it was depressing me.

It seems that lockdown has given us all a time to think and during my daily call with JS, (the guy who has lost part of his leg), we both started to reflect on how life has changed for us both. We spoke about our frustrations and on how we deal with what life has dealt us. I’d sent him some pictures that were taken while I was married to my ex CS when both he and his partner were great friends. We were laughing and messing about at a ball where we dressed up in our dinner jackets and bow ties; we laugh obviously but we also discussed where we are now and our anxieties but both agreed that our personalities have helped us cope. We both have our down moments but we are fighters and we battle on. It was another great chat (like the deep one I mentioned having earlier with my ex) where we understand more about the lives we now lead and recognising that things may change but we are always there for each other.

There is always an incident that brings home the fact I have this nightmare illness called MS and as much as I try to battle on and believe I’m still the same as I used to be, suddenly, without warning, I get a reminder; I was getting out of my car and turned towards the rear not realising that there was the smallest of ridges in the floor of maybe an inch, which I stumbled on and crashed to the ground. Being a concrete driveway, I ended up with a bruised knee, arm and ribs, as I’d tried saving my head from hitting the floor. As I’ve said in past blogs, I’ve become a master at falling and seriously thinking of applying for a job as a stuntman! Getting up is as much as a nightmare too as the receiver box on my foot, although quite small, prevents my foot from getting a grip but thankfully my upper body strength is still reasonably intact so I managed to get up and brushed myself down. I smile but inside I want to swear and cuss as once again my exercise programme takes a knock because it’s uncomfortable but I’m sure in a few days it will get better. So as much as I push MS to the back of my mind I really do have to accept that it is there and in areas is getting worse but I will fight this.

As the rules of lockdown were relaxed slightly, I had my first venture out to the park to meet a friend who wanted to discuss her relationship issues. We arranged to meet where we could sit at a reasonable distance and then by surprise her father also turned up to do a bit of exercise and as he was also a good friend of mine for years, the three of us ended up sitting for quite a long time chatting about everything apart from the relationship issues she’d wanted to discuss! What a great morning – partly I guess because it was the first time meeting up with anyone since lockdown started but also it was good to see my friend’s father looking so great and being on good form. We covered a variety of topics which was a sign we’d all been starved of decent company, but for me, a trip to the park was what I needed. It was lovely to see a couple of the regulars walk by too.

Now, some may think I am a softy but recently, and I have no idea why, I get emotional at the slightest thing - it may be the drugs that I am taking or the effect that MS has on me but my ex-wife was talking today about the effect this isolation has had on her and how she was feeling very low but couldn’t explain why. I often think about the things I was able to do before all this and now, thanks to MS, I can’t walk or do certain things without giving it a thought and my lack of a relationship is also, I believe, a big factor. What I have noticed is that I’m in tears at the slightest thing yet when I fell onto concrete the other day; I got up, brushed myself down and got on with it but I suppose having a few days completely pain free is a bonus and I will go along with the thoughts of many and that is that I’m more like a girl than a bloke!

I took my next door neighbour to see my mate JS in Lincoln so we could get out for the day. We drove through lots of local villages, into Melton Mowbray and stopped off at a farm for fresh eggs and milk (straight from the cow). Every time I walk into my mate’s house, Felix the cat runs up to me, jumps on my lap and happily curls up for a doze, much to the annoyance of my mate - because the cat generally won’t go to anyone else except me! I tell JS I’m a Cat Whisperer just to wind him up. We had a great meal and lots of chat. JS appears to be doing well but I’m unsure despite our in-depth chat the other day. Like me his life has changed and has placed restrictions on him as he tries to come to terms with a prosthetic leg. It’s hard especially when you think of our pasts - he was the one who visited me in Florida and the one who worked with me all those years ago. We’ve been friends for over 25 years, which is scary, and we’ve had some great times. These days we’re helping each other get through the barriers we now face. Anyway, as we had a lot of fun and for the first time we didn’t get home until late. Another day to remember for some time.

I visited my son to drop off his birthday card - unfortunately the present I’d ordered almost two months ago was delayed due to this virus which was a nuisance especially for me because I was excited! It was good to see him although I stayed in my car for social distancing which was frustrating because I’d still like to give him a hug in spite of the fact he’s now a grown man! I then headed to see PH as it was her 60th birthday and I wanted to drop a gift in and say hi. I’d also recorded a birthday video that morning as her daughter had asked a group of her friends to each do a little clip in an effort to make her day a special one. Whilst recording I had to keep re-adjusting my position to get the best angle and light - how vain am I?! Anyway, it was good to see her and she loved her video clips. Once again we all adhered to the distancing rules in her back garden.

Speaking of birthdays, mother had phoned to see about getting my son a birthday card and she started by apologising because the only cards she had in her box were ‘normal’. Firstly I smiled thinking about her having a box full of assorted cards because that shows your age! Then I remembered I have one too!! Secondly I’d asked what she meant by normal card, and she replied that she felt awful as she had no 40th cards. “Mother!” I responded loudly, ”he’s 35 not bloody 40, how old do you think I am?” She started laughing explaining she forgets what day it is, never mind anything else. Anyway I couldn’t wait to tell my son!!

Now, I’m fed up with moaning about it all the time but this Neuralgia is so bad it keeps me up in the night as the pain is so terrible. It’s in my tongue but appears to have travelled all along the right side of my mouth and pain killers have little or no effect. It ends up being easier to get up and sit watching rubbish on TV and talking makes it even worse but communicating makes the day go quicker. I found it difficult talking to TB on Skype and when I saw PS was on Facebook for once I shortened my message as talking to her would be too painful. Apart from the pain in my tongue I feel OK; yes my walking is hard and the deterioration in my right hand is there but seriously I feel fine; it’s just that all these things are sent to try me. I am eating things like chilli and food that basically I can just swallow. The one major thing that’s beginning to make me swear is doing buttons up! With all the good weather we’ve been having I like to wear shirts but what a nightmare it is trying to do buttons up with a right hand that refuses to work so I stand cussing because it adds even longer to the hours I now take to get ready, oh the joys.

The past couple of days have been a welcome break as I invited the young lady with the two sons over and we went to the park (keeping our distance) where the café was open just for take-away drinks. We spent a while there chatting and also bumped into the woman who once ran me over on her scooter! She hates me bringing that up but that’s how I always introduce her! She’s actually a wonderful, well known lady and it was nice to see her. After returning home and seeing my friends off, I really appreciated how having MS while bringing up two lads is not the easiest combination. The following day another rather lovely local lady popped in and we sat in the back garden once again adhering to social distance rules. This lady had been due attend the MS monthly meeting which had to be postponed due to the coronavirus. Anyway she was delightful and we chatted for some time and agreed that until the meetings start up again we can meet up on a regular basis.

The final day I’m reporting on had started out as a day with no real plans and turned out to be one to remember; I’d decided to go down to the park again before picking up my medication and I’m so glad I did because I met up with a few friends who were all on good form and happy to be able to chat together after so long in lockdown. When I got back home I had a lovely surprise when my son popped by and we sat for some time in the sun enjoying a decent chat. I sometimes feel he’s a stranger but after our time together I realised that he is, in fact, not too dissimilar to me! I gained a better understanding of his plans and the fact that above all he is happy with life and was still optimistic that his upcoming wedding in November would still happen as originally planned - who knows, fingers crossed. We also chatted about his plans for the future. His hair, like mine, was in need of an urgent seeing to as well !!!