I posted my last bi blog a little early as there wasn’t so much to say and then out of the blue I had a visit from my mate in Eastbourne! It was lovely to have him stay with his two dogs. He was driving his mum and dad up to Telford so they could spend a couple of days with their new great grandchild who they hadn’t yet seen and they stopped off to see me on the way. I know them both well and his mother, who is just lovely, came armed with cake and fruit bread which I gingerly tried with this awful Neuralgia. I was so pleased to see them both as neither of them have been too well over recent months. Anyway, after dropping them off in Telford, Steve returned and spent a couple of nights with me. It was good to catch up and talk about life and where we’re both at. My handy next door neighbour kindly cleaned Steve’s car which took him over an hour and then the three of us went for a meal at a local pub, which was nice although very painful as eating is an issue.
My ex popped in one afternoon to show us some photo albums she’d sorted out as well as to see Steve because they’ve actually been friends since school. I was sad to see him go when he left but hopefully I’ll get down to Eastbourne sooner rather than later to see him and the friends he’s introduced me to over the years. It depends whether this Corona Virus spikes again.
I went shopping for some non-food essentials which involved wearing my obligatory face mask which I hate. I almost missed my niece as you can’t see anybody’s face properly and had no idea it was her until I heard the words “Uncle Roger!” As we stood together I suggested we run off and rob a bank since we were dressed for the part but she wasn’t keen so I gave up on that idea. After picking up water, pickles and frozen veg, the girl at the checkout panicked me a little when she advised me to bulk buy as there’s a spike in the virus on the way; talk like that can indeed cause a shortage of essentials and is really little more than panic-mongering.
I visited my good friend the dentist, (yes I actually look forward to seeing this guy, even after he screwed implants into my jaw!) That part didn’t faze me but he does talk as he’s working and it’s hard to reply with a drill buzzing away and a suction pipe hanging from your mouth! Anyway, after inspecting my teeth he declared them ok which confirms that the discomfort I’m in is indeed some kind of Neuralgia but I had been keen to double check; hence the visit. He did give me a valuable tip for all readers - he advised taking Vitamin D along with Vitamin B. Apparently the D vitamins help the fight against Corona as well as assisting the immune system - he gave me a full explanation of the benefits to my health so I sent for some along with some B’s which are good for the nerves. Whichever way you look at it, it’s a cheap option to improve my wellbeing.
Armed with the knowledge that I am suffering with neuralgia, I arranged for a chat over the phone with my GP to request a referral back to the specialist who operated on my Trigeminal nerve a while back. He increased my pain meds while I wait for an appointment which is all very complicated but I feel a corner has finally been turned. The pain is awful, I talk like a ventriloquist, am unable to suck or blow on my harmonica (mouth organ) but saying all that, I still try to reassure my American buddy, Tony that I am great.
Talking about feeling good, I’ve been chatting to a lady I met through posting this blog on ShiftMS. I think she’s in a bad place, surrounded by negative people and feeling down which is very sad. We started off just texting which then turned into speaking; we seem to get on very well and the fact that she is slender, elegant and great fun is an added bonus and I hope her interest in me is reciprocated. There are a few issues to sort out before we meet but sometimes you just know that everything is going to be OK. I suppose I’m adding this information as a way of reassuring you all that this George Clooney lookalike still has it, regardless of the pain! It might surprise (and impress) my friends at the park who occasionally see me dribble as I struggle to drink my coffee.
I took some food round to my good friend Jules who then cooked it; we do love to chat and laugh. This particular Friday was no exception as we were both on good form even though she misses her chap, Alabama John, (his name is John and he lives in Alabama). They would have been married by now if it wasn’t for this corona virus but until it’s sorted they can’t even meet up. The following day my ex popped in for a good chat and I know some of you find it strange that we get on but it is the way it is; above all, apart from a great respect for one another, there is a love and care from us both. Even stranger, my ex from 40+ years popped in - a visit I always enjoy as our history was years ago and the conversation just flows. It’s her 60th soon so no doubt we’ll pop out for afternoon tea somewhere to mark the occasion.
I was invited for Sunday lunch by Anna, my dear friend and fellow sufferer in Worcester. She amazes me with her wonderful cooking and the way she keeps control with her two lads to look after. I was really no help at all - I took dessert with custard and even managed to get that wrong. When I unpacked it the custard was strawberry flavoured! Whoever heard of strawberry custard? Or is it really blancmange? Anyway thankfully she had normal custard in her cupboard. It’s good to have someone I can talk openly with about everything regarding MS; tremors, pains, spasticity, absolutely anything and we both benefit. Her self-confidence has taken a beating and my anxieties are discussed - there are very few people you can talk to like that who totally understand. I arranged a day to look after the boys to give her time to pamper herself – doing whatever girls do!!
My Neuralgia is the worse it’s ever been. The pain is so awful I sometimes despair and then I try to balance the fact that while the pain is so bad I can’t eat and hopefully the weight will drop off me. My whole way of life seems to have regressed - I regularly fall asleep in my chair which prompted my next door neighbour to kindly take a photograph of me, which is not a pretty sight. I’m also more than a little off balance and to be honest the increase in pain killers is not enough. They’re just not working.
I occasionally see the odd view of an MS blog on Twitter which I read with interest. The author is a pretty lady from TN in America who writes with such truthfulness. I thought it might be of interest to some of you so I include the link to her page.
I often wonder what life will be like in the future and I recognise just what MS has done to me which stops me doing so much. I sometimes look at this blog and decide that how I am is just fine - and that I should stop trying to recapture who I was before and rather concentrate on who I am now, if that makes sense? You have to understand that underneath this illness (which sadly now defines me), I am still the same person, with limitations that have, and are, getting worse.
I’m not generally either a moaner or someone who stresses about things - although my dentist may say different, given that I had to go back to see him to make doubly sure my teeth are ok - and indeed they are. That means I know for certain that they are not the cause of my pain. I may just be a little paranoid and hate taking tablets but the constant pain dictates that I have to in order to control it. The worst thing is that I have to live with this level of discomfort until I am given an appointment with my consultant which could be weeks or months. In the meantime, I keep telling everyone I feel great in myself – and I really do – but this pain in my mouth says different. After months in lockdown we recently resurrected the bingo that I take mother to across the way and where (for my sins) I have been the Caller for the past couple of years. I struggled due to the pain but tried to keep the humour flowing. A little shopping trip at the end of the day corroborated the fact that fatigue is creeping in all the time. I’d only popped out to buy some fruit and my legs started to give way, so I knew I had to get home and rest. It’s so frustrating but it shows I understand the limitations of my body.
My ex, Cindy has recently started to prepare breakfast pots for me - she makes them with no sugar and only healthy ingredients which contain an array of goodness. I intend starting every day with one of these. She kindly offered to make me a load that I can freeze and defrost when needed and after sampling a few I’m quietly excited. She gave me a Brownie one which turned out to be made with sweet potato, fresh ginger, spices, oats, mashed banana and oat milk. I have to say it was delicious and a good way of improving my diet. I keep telling her it’s still best if I don’t know what’s in them though!!
On the downside, I was visited by a friend who brought some tasty macaroons with her as a treat – (for my overseas friends, all you need to know is that they were pure sugar) and boy did I suffer the following day. My body was weaker than ever and my balance was all over the place - a lesson learned as I spent a very slow day. For literally a few brief minutes I had a break from the pain and hurried into the bathroom to shave. I was desperate to remove the itchy, ugly facial hair and I felt great but as I was shaving the left side of my face, the pain returned. The job was done though. I was clean shaven again.
As a kid we used to go on day trips to Blackpool to ride the donkeys, eat rubbish and the famous illuminations which was the highlight, so when Julie recently asked me to drive her to Blackpool to visit her sister for a few days I jumped at the chance, just to break the routine. I loaded my scooter into the car as I thought we were bound to take a trip along the seafront. When I went to pick Julie up, at first glance it looked like she was off for a month away; bags, blankets and a canine pushchair for her poorly terrier Robbie. So with the car well and truly loaded, we set off. It turned out to be a decent trip, lots of laughs and good conversation. We played ‘the first one to spot the tower’ as we approached Blackpool! We arrived at the apartment - not the usual bed and breakfast but a rather posh, self-contained place in an art deco-style building which was lovely and well equipped. We had a little rest before going to meet the sister for a meal. The few days away were great for Julie but not so good for me unfortunately. Whether it was the drive up there or something else I’m not sure but I had a very slow day where I was off balance and took a fall or two. Julie is familiar with my illness and instructed me to rest so to be honest I did nothing other than purchase the obligatory rock and tea towel. I hardly used my scooter as it was wet and windy an, if I may say, Blackpool was a sad place - shops and hotels closed and the lights were very basic and full of advertisements like ‘visit Bill the Builder’. As a kid I must only really have enjoyed the coach ride and donkeys!!! One day we visited Lytham, a beautiful place. While there I went into a disabled store and enquired about foldaway scooters - how fantastic – you simply push a button and it folds up, like a Transformer. I was very enthusiastic but I knew a phone call to my sister would be in order as she would be on my case otherwise. And boy was I right! So I booked a home visit with the scooter company to come and demonstrate. The whole trip with Julie was great, and together we had a great time, but it did make me realise that as much as I fight it, I am getting worse; the falls and general slowness making me accept that an easy-to-use scooter would be both useful and very much needed. The whole time we were there the Neuralgia pains were awful but somehow, (and believe me it was hard) I kept smiling, even though my strength was weak, balance shot but my humour remained intact. I accept life is changing, it takes even longer to button a shirt, I sit to pee as my balance is so poor and walking is exhausting. But please God let me fight this; I get emotional typing this as I rarely open up but I suppose being honest on here is easier. Having said that, I think I need to stop writing these blogs - we will see.
I took another trip up to see my good friend Jamie, who might be loud, in your face and a damn good laugh but also, like me, is a thinker. Losing a leg and being close to death, has made him fully aware of his lot and he deals with things in his own way but one thing we both have in common is the people still in our lives who really matter. He had a rude awakening when his social circle all but disappeared completely (by his own doing) as his life and outlook changed which is something I completely empathise with. I‘ve always been sociable but with a select few - when I was working it was with those I held in high regard and those who wanted to help themselves. If I’m being totally honest, to a degree I let slip of a few people who really mattered, in pursuit of things that really didn’t matter like success and recognition. You just don’t realise it at the time but now, look where I am, struggling with an illness where one day my body is slow or I’m in pain and the next celebrating a brief reprieve from the Neuralgia pain for how long I never know. It feels like every waking moment I’m running my tongue across my lips and sigh with relief as it appears I may have another pain free day despite the niggling twinge.
For no particular reason I wake up at 3.40am and decide to try and exercise. I say exercise and smile as I struggle to lift my right leg knowing that the drop foot is making it feel like a dead weight. I do a few lifts then turn on my side and try to lift my legs sideways, which again is pretty useless and then I crouch like the pouncing tiger I believed I once was. I look in the mirror and see an untoned body, which for 61 years of age is probably not too terrible but for me, the ravages of MS are apparent. I move onto the Ab Curler in an attempt to rid my Friar Tuck tummy but again it’s pretty useless. I’m often told to listen to my body and have always laughed at this advice but to be honest I now do exactly that. I think about my recent falls and stumbles due to lack of balance and suddenly realise why I’m actually awake at such an hour - the rain is hammering down hard and I end up pouring out all these thoughts on here as my head is full. I’ve been thinking about my life and the people I have around me, like Nina - my sister, Cindy - my ex, Rob - my next door neighbour and Julie – my friend who I suppose are always there but I miss having that someone special who’s there all the time. I’m lucky that I can nip to the park (when I’m able) to spend time with the lovely bunch of people there where my humour and patter seems to attract them. I also have my regular lunch dates which are a welcome break, and how could I forgot Lyn? My long time ex, who is golden. It goes without saying I have my greatest friend, Tony in the States, who is like a brother and who I wish I could spend more time with. Unfortunately with the expense and now Covid it’s impossible, but at least we laugh and share our thoughts everyday on Skype. Then there’s my good friend Steve in Eastbourne who also looks out for me – and again, we’re like brothers. I love both Tony and Steve and it’s frustrating that I can’t do anything for them. I’ve been criticised for not really going out of my comfort zone and doing more, but my response is that I don’t know how long I’ve got with this condition, or indeed how long have any of us got?
As I previously mentioned, I’ve continued talking to the lovely lady who contacted me after seeing this Blog, and I just know she would make a good fit for me. I’ve ignored all the concerns and advice about getting involved with someone I haven’t met in person but I know my own mind and actually stepped it up a gear as I believe in throwing everything at an opportunity like this; I feel like Heaven has sent me a perfect match because we both have health issues. I imagine many of you struggle to understand my thoughts and ramblings and to do that you need to understand my anxieties, insecurities and fears about this condition - Everything I do needs planning; trips out, intimacies, getting ready, literally every small thing can cause a panic. I may sound daft but a simple thing like tying my shoe lace now takes forever. I have to ensure my electrode pads are correctly positioned and then I worry about how to deal with a restaurant - are there steps? Thick carpet? Large crowds? Will my mouth be OK? As time has gone by my insecurities have increased which is mad as I’ve always been one to give advice to others on how to cope and yet here I am, (coping to a degree) but only living a basic life style so I know the time for change has arrived.
An evening with my neighbour and Julie is becoming a regular occurrence, and most recently conversation turned to Christmas. Julie kindly offered to host Christmas Dinner but I’m not sure because of mother - so I guess we’ll have to give it some thought. Who knows where I’ll be in the relationship stakes anyway. I do know this new lady would be an easy fit and be included to whatever is on offer. Anyway, after the meal with Rob and Julie, we went over to my sister’s to pick up some chairs for Rob’s garden. My sister knew he loved brightly coloured chairs and because she was having a change around, offered them to him as a thank you for all he does for me.
I know I go on about this bloody Neuralgia a lot and yet again, after a few days pain free I was sitting with Lyn trying to hold a conversation when it soon became almost impossible to speak as the pain increased. After taking her home, decisions had to be made about how to deal with the pain, so like a desperate man I went to the syringe of pure cannabis I keep in the fridge and applied what I thought was a small amount however, I accidentally squirted a whole lot over my finger and panicked, putting my finger in my mouth without thinking and consumed it all - perhaps 15-20 times the normal amount. I knew I’d been an idiot in my attempt not to waste any but ignored it, tidied up, took my meds and went to bed. On refection taking the meds was probably a bad decision and no sooner had my head touched the pillow that I was out like a light! The following morning I woke up feeling very strange - happy but very strange and my body was somewhere else but making it to the bathroom was indeed a task; I was smiling as I bumped into doors and hanging on to whatever I could. I managed a shower of sorts and wore shorts and t-shirt all day. I sat in my chair and consumed three bananas, a punnet of grapes, one cottage pie and a carton of crisps (chips) followed by a carton of pineapple and three bottles of water. I was literally grazing – as well as (apparently) making crazy calls to my female friends and all my inhibitions had disappeared. The following day I called to apologise, but I was high, yes actually high, I’ll know better next time but I must say I actually enjoyed the experience!!!!
I’ve decided me and exercise are not a good match any more after I scuffed a toe on my right foot, against my desk, ouch, MS Tourette’s again. Also while working with 4kg weights, (yes only 4kg) my balance is all over the place. I catch a glimpse of what I hope is a perfectly toned body, let out a sigh and think the mirror needs dusting as, I’m convinced that cannot possibly be me standing in front of it, oh well onwards and upwards, I know that I will get there.
The most recent MS meeting was poorly attended, probably due to the fear of Covid. Anna had a perfect excuse as she was exhausted after taking her boy to one of those play centres and couldn’t get him out of bed the following morning, so there was just four of us and we had a laugh and covered a few subjects related to MS. The next meeting I hope we’ll have a better turnout as fears are unfounded regarding Covid; the hotel was so safe - I loaded a barcode to order drinks, which for an old fart like me was amazing so I may even nip in again just to order a coffee! We’ve come a long way since I was a kid when my older brother and I communicated using a length of string and two Cola cans, which we thought was the height of technology back then! It was great under the sheets of our bunk beds though!!!
I enjoyed a lovely Sunday roast at Julies, and while there I mentioned getting someone in to clean my oven - well she got all excited, found out her rubber marigolds and volunteered to do the job as oven cleaning is her delight! Strange woman. Although in fairness I often sit on a chair, in shorts, scrubbing the bathroom, knowing it will take hours but I feel better when it’s done so I guess we’re both a bit OCD – me loving the smell of bleach and Julie, I’m not sure, she is one hell of a woman but strange!!! The dinner was great and the following day the cooker and bathroom were done, even the washing machine had been cleaned, but boy was I shattered.
Jamie visited, armed with food as he delights in telling the world that I can’t cook and I suppose he’s right. So bags, pots and pans were plonked on the kitchen side and away he went; he truly is a marvel. After a while he stopped and said “right come on let’s go to the park”, and off we went! Oh boy what a laugh. We met up with the lady who ran me over on her scooter (as I tell everyone who’ll listen) and Jamie regaled everyone with all sorts of stories. He was like his old self - confident and hilarious. We spent quite some time at the park but had to head back as I was starving. The meal of chicken cooked in cream with mushrooms and Indian rice was delicious and I went back for seconds. My only contribution to the feast was some French sticks and fresh cream but it complimented the dessert - a damson, raspberry and apple pie. I knew it would wipe me out later, (and indeed it did). I was slow to the point I just had to sit quietly all day, apart from having to find the tins of beans that Jamie had hidden all over the place, on top of cupboards and in my shaving cabinet (for a laugh) and putting cushions back because he knows how bad my OCD is and takes delight in making as much mess as possible just to see me twitch! He really is a great friend.
I had a visit from Caroline, a friend who decided to move to Spain - she was upset at all her self-doubt, this virus and leaving her family. We chatted for hours even though my Neuralgia was agony but I truly felt for her as she’s a great friend and I’ve promised to visit her in Spain. Although I think she left in a happier place, she even got upset about my situation, struggling to come to terms with MS and the problems it has thrown my way. I think she’ll be ok as she has a strong mind and caring heart.
I suppose this s a good way to inform you all that I am ending these posts as I feel a break is needed for both Cindy and myself and I can’t help but feel that the readers of this blog must feel that they’ve heard enough of my trials and tribulations for now and I feel like I have nothing new or exciting and don’t want it to get stale.
Most importantly though, after a long time of not letting anyone in, I am happy to say that the lovely lady who I’ve been talking about called Carol – who is 62 years young, is now residing with me here in my small bungalow and things are going well. So you see, even a chap with an illness can find happiness and I need to put all my attention into this great new relationship and who knows - I may well resume this post at some time in the future, but just want to thank you all for following my journey and goodbye for now!