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August 2019

I started this August blog a little earlier because I felt July’s blog was bordering on being too long so this includes the last few days of July. So on the last weekend of the month my ex (CS) visited with her beautiful daughter (AJ) and I’ve attached a photograph of the three of us. We had a lovely few hours even though I had difficulty speaking due to the neuralgia and CS finished the blog while I listened to the latest news from AJ who works in Windsor. They are both so acceptant of my condition and I appreciate it must be as hard for them as it is for me because we all share the same happy memories of the years we were together. I’m sure they identify my frustrations and accommodate the fact that I struggle with the continuing Neuralgia and with those close to me. When AJ walked in she looked as elegant as her mother and I reminded her of the first time we met just after her 8th birthday and we visited the deer park at Shattersford, which sadly is no longer there. I gave her my coat as it was chilly and now, well the attached picture speaks for itself – she’s a beautiful lady! We took a selfie – get me; I’m getting into this technology jargon!

While I’m aware this blog is to let you know about MS and how I deal with the issues it brings, I’m also aware that I’ve never really expanded on my life in the States and how it came about. Back in 2008 I went to Massachusetts to run a three month marketing exercise for a company that had invented a special unit which fitted into the window on trucks (lorries to natives of the UK) that offered an environmental benefit. To explain in more detail, by law trucks had to rest for 10 hours a day in America which meant the trucks were idling –this is basically when the ignition is still on with the engine running. Because of America’s extreme temperatures this was difficult as in one State it could be over 100 degrees and in another minus 30 so this machine gave temperature controlled fresh air, internet and power to the truck so they engine could be switched off thus there was no noise and cleaner air. After a successful visit I was invited to take control of Sales and later that year I moved over and based myself in Florida - a deal had been made with another company promising sales and as I knew people in this State it was easier for me to get a foothold. I formed my own distribution company with the help of two other guys and eventually was asked by the UK investor to take over the whole operation and become CEO of a new company. I discovered as I went along that there was a lot wrong; mis-spent funds, incorrect designs and really the whole setup needed re-organising. Sometimes I look back at the opportunities I had and the amount of States I visited and I comfort myself with the memories I have. I was fortunate enough to meet great people and spend great times in a lovely country. Despite the amount I lost due to circumstances beyond my control, such as the investor walking away, re-designing the unit and website, I have no regrets.

I’ve mentioned meeting great people and particularly a special relationship I had with the lovely PS who I struggled letting go of for a long time; in fact for ages I would sit and wait for contact and constantly think of what we had and indeed could have had if it wasn’t for this terrible illness cutting my life down in America completely. You have to understand I was not a native of America and I didn’t have a Green Card. I was on a working visa and an illness like MS is too prohibitive over there – the medical costs are astronomical so once I’d been diagnosed here in the UK there was simply no way back. Anyway, now the contact with PS is less frequent but we both know that we’ll always be there for each other and I doubt anyone will ever replace her and the special connection we had. She has her whole life and family over there and it is, I’m sure, as hard for her as it is for me. When I go to the other side of the pond we often meet up and of course it’s great seeing her although I suppose bittersweet. My very good friend (TB) who I stay with relates her to Kryptonite as sometimes I melt and literally go weak at the sight of her because she really was/is that special. My friendship with TB is also incredible and he’s actually more like a brother to me. I know we’ll be in each other’s lives until the day we die. so briefly there is an update, sad I know but boy am I lucky, one to have a great mate and secondly to experience a love that will never die. The whole experience I am sure will be revisited in parts throughout the writing of these blogs.

The neuralgia in my tongue is still getting me down but with a slight increase in pain medication I do get some pain free periods which I try and use to my benefit. There has been another afternoon tea with GH. We went to the Grafton Manor which I had been to before with CS and JB and to be honest we hadn’t been very impressed but this time was a completely different experience and the two of us thoroughly enjoyed it; even the miserable weather didn’t dampen our day as this place was truly lovely. I‘ve booked afternoon tea in Dudley for next time which no doubt the local readers will question! But this place is on the canal and a first for us as it will involve travelling a bit farther afield and who knows we may end up taking a barge trip too while we’re there! Watch this space.

Now this is completely off track but I’ve just had a phone call from PS in America! We had a lovely chit chat about everything and nothing and this is why I love her so much. As usual she preached about my eating habits, telling me to cut out the rubbish and I know when she reads my blog her hair probably stands on end when I tell stories about nipping into McDonalds and going for cream teas! I told her that when I win the Lottery she’ll no doubt be there looking out for me again. I know when we lived together I ate well and lived life in a better place because I know a better diet really does help but I’m no cook and it’s hard when you’re on your own, not only to find the incentive but also because it’s a lot of effort in time and effort to prepare anything with MS as my one hand doesn’t work and I can’t stand up for very long. On a more positive note though, I no longer have chocolate or biscuits in the cupboards and I’ve almost stopped eating bread. The afternoon teas might not be the healthiest but the company and places I go are good for my soul; life is hard enough and I know what’s needed. I wish I still earned what I used to but in all honesty I doubt things would change as I’ve always been the same! My mate TB is right in saying I’m hopeless and the call with PS reminded me not only of the wonderful life we had together but also the fact that we ate well and that is exactly what I need. You see, that call from has put me in a determined frame of mind and a happier place. I know we speak less because she has to try to get on with life too but when we do talk it’s so natural; she is and always will be that special lady.

I took my friend MR for a consultation at the hospital where I get my FES (electric box and pads which proved not only beneficial to her but for me too. I made an appointment for myself because the lift in my leg is not good. I’d been hoping they could add a third pad but unfortunately it’s not possible. Since going to the weekly physio appointments it’s apparent that the lift in my right leg is nowhere near good enough. My impatience with it all kicks in and after four years of little to no exercise, I have a big journey ahead but the more I do the worse it makes me feel and my body suffers. I’m sure with an improved diet (he says, smiling as he writes this!) and the weekly exercise, I should eventually improve – I have to think positive! In October I’ll hopefully start a new drug as I know things aren’t good. Let’s see …

I had a visit from MR and her partner - they are a married couple and MR who I took to the hospital, has Cerebral Palsy. We chat constantly and take strength from both having illnesses which has cemented our friendship. There are those who will look at this as slightly strange but the night was varied with plenty of chat about our day-to-day difficulties, listening to music and plenty of laughter, re-living events and memories that the music reminded us of. Sadly, I had to end it prematurely as the neuralgia kicked in, bloody nuisance.

The football (soccer) season has started and the lads converge at my place; this time one of my friends brought me down a dinner of gammon and fries that his wife had cooked with my favourite pineapple slices. What a lovely lady she is. The match was great and as typical males we were full of advice on how to play the game! For the next few months the weekend will be full of football games with the lads coming to my place – I say lads when the reality is they are 80, 66 and 62 so I’m the youngest – and that’s the thing when you get old, a girlfriend can be 60! And I don’t know about lads cos we’re all coffin dodgers!!

While the neuralgia is bad, the MS is ok; yes at times I need to rest but I actually feel good. I started reading up on drugs (otherwise known as disease modifiers) and I’m going to see a doctor to give him an update and sign-off my prescriptions. I had to cancel my dental appointment because it would’ve been too uncomfortable having a hand in my mouth. I now have to plan pain killers around what I’m doing so when I went to the park recently it was almost two hours before I took any pain killers and consequently I ended up talking without moving my mouth in the hope my tongue would stay still - in fact I’m becoming quite a competent ventriloquist! For someone who was born to talk it’s hard to forget the pain sometimes and it frustrates the hell out of me - yet I get the feeling people around me are quite happy!

Having agreed to give my sister and her husband a lift to the airport to visit her son in Texas, I made sure I was up at 03.20am and got to Heathrow for 07.00am. I got back in time for a 90 minute doze lying on my bed and it felt like the old times both here and in the States. The only thing missing was the inspirational telephone calls from loved ones to keep my heavy eyes open. In the States I would drive non-stop for over 15 hours at a time, only stopping for fuel and McDonald’s coffee (and a few chicken nuggets). Back then life was so much easier and things were effortless whereas now a relatively simple trip to Heathrow will play on me the day after.

When MR, the lady with CP popped in she noticed my balance was shot and I tried blaming it on the ill-fitting electrics in my shoe, but in truth my co-ordination and balance have worsened along with the return of the neuralgia, so following my GP visit (which I will come back to later), I am now on an increased dosage of pain killers which affect both my balance and to a degree my speech. I just hope I get some relief. Anyway having seen my sister off on her trip to Texas, I had lunch with the lady who has become a good friend through sharing our respective problems, trial and tribulations and we laughed and chatted, which can only be a good thing as we battle with our illnesses. Later on the lads came round for football so I had a houseful and my dear friend (LB) popped in, consumed a bottle of wine and left smiling; she looked happy tonight so I guess her house move has cheered her up.

Now let me get started about my experience at the Doctor’s; I consider myself a calm individual but after my appointment with the latest doctor I don’t believe I am! The opening question was “What can I help you with Mr Southall?” to which I responded, “I beg your pardon, you asked me to call in because my meds needed signing off.” After doing this she then asked if there was anything else she could help with. I explained that the neuralgia was back, in my tongue this time. “How do you know it’s neuralgia?” she asked,” it may be dental.” My response was to ask if she’d read my file as I had previously been treated for Trigeminal Neuralgia and I have Progressive MS. She had no idea of my condition nor had she bothered to look over my notes. She then proceeded to dictate a letter to my consultant even as I informed her I already have an appointment for 1 October. I was starting to lose my patience and by then she was also getting flustered; she basically just prescribed the same pain killers that had previously made me unbalanced (although in fairness they work) so all in all it was a lesson in the need for preparation and understanding the facts. I always smile when I’m there because the alternative would be to scream as every time I go in the response is always put down to the fact I have MS.

On the third day taking these pain killers I was all over the place as anticipated, bumping into things and generally feeling quite high or tipsy although pain free which was a great bonus for me and for those first two days I was feeling elated as there truly was no pain at all. I made the decision to stick with them and see how I go on. It’s been suggested I use a walking stick (cane) in the house but as usual pride steps in and I lurch around the furniture instead. I know it’s stupid when you think about it; a 60 year old man worrying about what other people might think and refusing to use something that would help! The thing is, I do have though a walking stick and a mobility scooter which I loaded into the car ready for a trip I’m taking that will involve a great deal of walking and unfortunately walking any distance is a big NO for me.

I have no stamina and once tiredness kicks in I go into shut down. On the plus side the lack of neuralgia is great and I can cope with the lack of balance for now so we’ll see how I’m getting on later in this blog.

My friend MR talked about visiting her aunt in Weston Super Mare who she feels close to and in my opinion it would do her good so I offered to drive her there. The night before I took a risk by reducing the dose of tablets so I wouldn’t feel giddy and also in the hope the pain would stay away. I had my scooter in the boot in case I needed to walk far so I was all set. On the drive as we chatted away I could feel twinges in my bottom lip, desperately hoping the neuralgia wasn’t starting up again, which thankfully it did until we got home anyway. I was quick to get some more tablets down me once I was back and literally straight away I felt unbalanced on my feet. I have to say once again, it’s a trade-off that I believe is worth it. Weston wasn’t quite as I’d remembered it back when I took my son as a small boy. It’s now very commercialised and set up to take your money! You pay to walk the pier and at the end there’s only an arcade which takes more money, followed by the obligatory bag of chips which we ate sitting on a bench playing the game Marry, Snog or Avoid. It turned out I was by far the choosier whereas my friend was, in a word, easy! She was quick to pick her choices but mine were pure class! My friend’s aunt came along and things changed for the better; a smile and warmth that I hadn’t seen before. This lovely lady is real family and after a coffee and long chat with her we headed home. MR’s wife had returned and I was also getting tired. In fact I’m surprised how well I coped with the day; yes a little slow but having the scooter was a help. The following day another mate came visiting to show me photos from his wedding which I’d missed, along with a piece of wedding cake.

I’d noticed while showering that my limbs had tightened up so decided the exercise had to take a back seat once again. First it was due to the neuralgia and then the instability and it is so frustrating as there is so much I need to do. The other side effect is sleep; I sleep so well and actually, in my mind, too well because it’s hard to wake up and I’ve started having really weird and upsetting dreams – strangely I don’t have any of the illness or side effects which affect me now. In my dreams I’m the me I used to be, performing without a thought, riding motor bikes, entering bars, having the company of females – and in one dream I was actually hand gliding,. I have no idea what that was about especially as I’ve never had a desire to hand glide. Sky diving yes but not hand gliding!

I’ve been to lunch with my usual female companion (GH) before she disappears on yet another break. She leads a great life and chatting to her is always a pleasure, hearing about her two daughters who also have exciting lives; a family that never seems to stand still. On this occasion we went for a carvery (for any foreign readers, this is a meal where you take your plate to a counter where there is a selection of meats which are cut and placed on your plate, then, to my amusement, a selection of vegetables, potatoes and good old Yorkshire pud with sauces and gravy. Trust me, the plates are filled and carefully balanced back to our table where the food is devoured.

the down side to this is that there is so much food on peoples’ plates which means there’s a lot of waste and those who do manage to finish their plates are normally very full and still manage to top it all off with a dessert! No wonder we’re so obese! Just my own observation but it is comical seeing these full plates making their way across the dining room.

Writing this blog and posting on Twitter and ShiftMS is a leveller to me; today for instance, a very attractive, ex fitness instructor posted that she was excited in a mobility shop. Normally I wouldn’t take a great deal of notice of this post but as my ex-wife is a fitness instructor I can absolutely understand how devastating this would be but us sufferers seem to adopt a front and put on a brave face. This unfortunate lady who’d posted today always cheers me up with her daily life. I’ve also had a lady thank me for writing such an honest blog as she too is suffering with neuralgia in the tongue and because she had never heard of such a thing, had thought the worst. Her email also made me happy as I felt it was all worthwhile. My condition, which I talk openly and frankly about, is indeed changing. I notice when texting on my mobile phone that I have little control over my right hand, so now I send fewer texts. Typing this is becoming harder too and for those who know me, my typing skills aren’t that great to start with - I even stutter while I’m typing so now mistakes are frequent - thank God for the old “her indoors”! Seriously, MS is like walking into the unknown yet many of us smile and try to get on with it. Another lady who is perhaps one of the most inspirational and lives in Cheshire, regularly chats and is always ready with a smile, yet MS is gripping her awfully. She also brings up a family. You may ask why I’m writing all this but while we all say yes everything’s fine, deep down inside we’re hurting. My friend (MR) with cerebral palsy is the same and I know she hates fuss but occasionally people need that arm around them telling them everything will be ok. I will never let that be the case and try to be inspirational, playing the joker and trying to hang on to the fact that really we’re all lucky to be alive. But, and it annoys me, tears are rolling down my face as I remember life before MS and how getting dressed and walking were things I took for granted and I cry with frustration when I stumble making my porridge. The other night I had a fall as I was squatting to untangle wires and had probably spent too much time crouched down so my balance went and I smacked into the radiator. There are so many things I miss and know will never again be part of my world like going to outside concerts, running for a bus or any number of things you all take for granted. Life sometimes is hard but as I say all the time, there are so many worse off.

I made the return trip to Heathrow to pick up my sister and her husband after their trip to Texas and had a couple of visits to physio which have been hard. The neuralgia had eased off thanks to the tablets but on the flip side my balance was all over the place. As I finish this month’s blog I’m sorry to say that I have increased neuralgia in my tongue and lower lip and I really am feeling very low.