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September 2019

September started with a trip to Cornwall with my mother and sister; I’d anticipated it being both an interesting yet eventful few days and it was!! We arrived at a pleasant mobile home site which was clean, not cramped and with lovely views so first impressions were very good. The van - a static mobile home - was OK but dated, the rooms were small and my bedroom was a squeeze to say the least! There was a single bed on either side with barely enough room to walk down the middle but otherwise absolutely fine. Even the shower was good albeit a tight fit. We settled in and ventured to a fisherman’s bay called Mevagissey.

It was just as I remembered; quaint and as if stuck in a time warp. The three of us knew we were in for a great few days and sure enough our first night was a giggle, laughing about all kinds of silly things before eventually turning in as we planned on being busy the following day. Although the bed was small I tend to sleep very still, (as though someone has laid me out before burial!) so space was not an issue but I’d forgotten about that time shortly before waking up when you have vivid dreams! Of course I had one - chasing after a past love, I turned over and fell out of bed! I wasn’t hurt but it brought my mother and sister running in to the not-so-pretty sight of me on the floor, enough said! The following day I decided to change beds because I worked out that if I turned over it would always be towards the left so my nose would hit the wall and wake me up! Each morning we would have breakfast then shower – can you imagine the time it takes for three adults (not to mention the noises from mother and me) as we struggled in the compact shower and bathroom. Thankfully we had no neighbours!!

We really covered a lot of Cornwall starting with Bodmin and a visit to the famous Jamaica Inn where the smugglers used to hide out and which is apparently haunted. We had a great meal there before walking round the Jamaica Inn Museum. Our next trip out was to Lands End at the bottom of England. We took a steam train through some lovely scenery and in such a short time and ate at some great places. We went on one little outing which was right off the beaten track - scary and very funny because mother was sitting in the front with white knuckles as we met a combine harvester, a tractor and no end of cars in a lane that was only fit for a horse and cart in my opinion. At one point we came up to a gate which my sister had to get out and open before we continued to drive. I was taking pictures to the sound of mother telling us to drive on as the drop on her side was quite severe and the pictures I was taking were only of rocks. I think what she really meant was the drop to the sea was too close for comfort and she wanted us to move away quickly because she was scared. We enjoyed Cornish Afternoon Teas, Cornish Pasties and traditional Fish & Chips and every evening we spent giggling and having the usual banter. It was really relaxing and apart from my slowness everything was fine. I’d increased my pain killers to keep the Neuralgia away which kind of worked as I had no pain but I suffered loss of balance instead which I considered well worth it to be pain free. Overall we covered 800 miles on what could be described as a trip full of laughs and great places. I’ve attached some pictures to show the beauty of the Cornish coast.

After returning I made my first trip to the park in a long time and although the temperature had dropped the sun was shining and I hadn’t seen these guys for a good couple of weeks so it certainly was great to catch up. I ended up spending nearly three hours there which is an indication of how much I enjoyed the company. Once home I caught up on my washing and, lo and behold, the slowness started to kick in. A week away with lots of driving and a change of routine was starting to take its toll so that afternoon was spent catching up on recorded TV. How different my life has become; still no complaints and a week of watching mother laugh was worth it.

One evening I rang PS, the beauty from Florida, who happened to be doing the drive I used to do so many times through Georgia and I had her completely on her own in the car which left me smiling from ear to ear long after our call finished. We initially talked for thirty minutes before breaking off for a while and then I called her back (a total of three times) because I remember when I used to make that long journey I loved having someone to talk to and it made the driving easier. From my own personal point of view it was wonderful just to have her attention and yes, I got a telling off about my diet and sugar intake but we fell into the old easy chat we used to have. She really is a delight and every time we talk the old memories come flooding back. She told me about her younger daughter getting married shortly and how she’d be spending time with her family (who I also miss). I see their posts on Facebook but it’s not the same as spending time with them so hopefully next year I’ll get to see them. At the end of the evening I felt refreshed and in a better place – it’s amazing what a few words can do. She remarked on my trip to Cornwall and reminisced about when she came over here and met my mother and sister and had equally as good a time as we did last week. It would be great to get her over again … we will see.

I had an appointment with the MS nurse and to be honest I’m not sure what I get out of these visits but on this occasion I was determined to push for an appointment to treat my Neuralgia because I really want another procedure done to relieve the pain. As it happened all I got was the same referral to my consultant who I’m already seeing in October. New drugs were discussed along with my general well being and really the visit was just confirmation that all is well and I’m coping. I also had my bloods taken to look for any adverse happenings. While I was there I met a fellow sufferer and it was only because I overheard her ask for the MS nurse that I knew she had the same condition. She was very elegant and it was only as we chatted that I realised how much she was suffering. She has young children and her life is busy but as the MS is unpredictable she struggles. I actually felt for her - not sorry, because she’s a fighter - but I just wanted to wrap her up and let her know all will be well. I’ve written before about how sometimes that’s all you need because you know this MS is never going to leave you so you just need an arm to hold you and to be told that things will be OK. I tend to joke my way along and never really let people know what’s going on but I can’t hide this Neuralgia - but as I always say, there are many worse off than me.

I mentioned in last month’s blog that I’d booked Afternoon Tea in Dudley with my regular companion. We sat alongside the canal near the Black Country Museum which was actually a lovely place with lovely food. As I mentioned earlier, PS over in Florida had admonished me about my sugar intake having seen me go on about my afternoon teas so I’ve been trying to restrict the amount of cake and scones I eat - which I managed to do despite the temptation - and coupled with a little encouragement from my friend GH. I was really pleased with myself for exercising such control and we boxed the leftovers up for GH to take back for her husband – I was very pleased with myself!! The canal side location was better than I’d hoped for and I was interested in a boat trip through the old tunnel nearby, where, in the good old days barges were pulled by horses and the barge folk would lie on their backs and walk on the tunnel sides to get the barge through the tunnel while the horses walked over the top. Now of course the barges have engines which I find all very interesting – so much so that I’m going to look into another visit to include a boat trip as well as afternoon tea. Anyway after two pots of tea, two glasses of Prosecco and a lot of chat, almost three hours had passed so we decided to head back. When I arrived home my sister had very kindly left a chicken curry for the following day as well as cleaning my home and changing the bedding which is such a great feeling - clean sheets are such a pleasure!

I was due to go to the prosthetic clinic to have my FES re-configured because my walking had not been what it should be and my electronic box was set at a painfully high level. Well what a pleasant visit it turned out to be as I was given a new box and once my pads were re-positioned my walking improved immediately which was marvellous. I’d taken my friend MR (with cerebral palsy) who was meeting a new physio and she also came out feeling determined - so all in all it was a successful trip all round. I decided this was actually quite amazing considering it was Friday the 13th. Later that afternoon I also won at bingo – it’s always good when the caller wins!! The weekend was quite relaxing and I took mother over to see my sister to firm up our Christmas arrangements - yes I know it’s early but it’ll be here before you know it! We also needed to talk about a birthday cake as someone turns 60 at the end of December! Mother will then have three of her children over 60 – how fantastic!

As predicted, all the extra walking and visits here and there once again took their toll on me so a quiet day was the order of the day – at least the Neuralgia was lying quietly in the background since increasing the pain killers so for a while now things are good. I’m supposed to attend a new physio course soon which I’m looking forward to and I also want to keep on restricting my food intake which is beneficial too. I’ve made the decision to cancel my involvement with the Carousel (the training days at the hospital) that I’ve attended in the past and the reason for this is simple; I need to focus on getting myself stronger and I know I don’t have the energy for both. I’m accepting the restrictions in my capabilities which are now more common because I know I’m slowing down; we will see.

Every now and then you get a wake-up call with this illness and I’d woken up knowing my balance was all over the place so I gingerly got out of bed and thought better of doing any exercise. Instead I stood in the shower holding on to the grab rail, thinking about what I’d eaten the day before – I’d actually eaten really well so I couldn’t think what had put me in this state. I then remembered asking Alexa (my Amazon Echo) what time it was in the early hours of that morning and she’d replied 3.11 to which I’d given no more thought - then it dawned on me that my Neuralgia, which was lingering in the background, must have woken me, explaining why I was feeling so bad. It’s just one more of the joys of MS. I was slow, un-balanced and my co-ordination was completely shot but by taking it steady I knew I’d get through the day. I started by sitting down and eating a banana with a cup of tea. Slowness is not something I deal well with - going from a go-getting-rushing-around way of life to now holding onto door frames, walls or any bits of furniture which just isn’t me. As the day progressed I hoped I‘d be fit enough for physio but as I was making tea my right hand gave way depositing the contents of my mug over the work top, which led me to thinking that MS sufferers should get a discount on kitchen roll since I used 8-9 sheets mopping up the mess! The kettle had to go on again, this time remembering to use my left hand. I try to laugh every time something like this happens because getting upset or angry isn’t worth it and I’d end up spending my day miserable – and to be honest I have no interest in being miserable. I sat listening to Adele on my Echo which always puts me into a reflective and morose frame of mind so I had to change to the Proclaimers instead, which I sang along to at full volume and forgot all about the spillage! I’ve learned that life has levellers which dissipate the frustration! Thankfully I made it to Physio as it was the last one. The following week I was going to join a circuit along with a number of fellow sufferers which I’m told is harder and lasts around 90 minutes. After Physio I actually felt ok despite a little Neuralgia pain but I forced myself through it and once home sat quietly again. Later that afternoon my ex (CS) popped in to see how I was and to ask if I needed anything. She was going to come back the following day anyway to make a start on my blog, bless her.

As the Autumn evenings have started getting colder, which is something my body doesn’t like, I refuse to put my heating on but know the time is getting closer, with the nights drawing in and my winter clothing gradually starting to replace the summer wear. This condition is affected by temperatures and weather conditions and I truly am dreading this winter being a cold one as forecasted. I already know to keep my head out of direct sunlight in the hotter months but the approaching cold weather seizes up my joints, affecting my walking and even the ability to talk properly. No doubt the coming blogs will document all this and how it affects me. I still find it crazy that when I lived in the States I appeared fine; the temperatures were quite high and when I look back I do question things like the slowness, tripping and tiredness but as I’ve said before there was only one person who recognised there was something wrong with me and she tackled it by improving my diet and for a while I survived quite nicely. I suppose being relaxed and in a place I wanted to be fooled me into thinking everything was OK. I realise now what was happening to me and I can’t believe the time I spent on treatments that were a complete waste of time but now at least I know what I have and what I need to do to help me live through this unforgiving illness.

I’ve been thinking hard about a trip next year to the States; the thing is, I need to be well and judging by this morning and how slow I was again despite the fairly warm weather, I need to know that I can control this Neuralgia. I tell people I was born to talk but when it’s too painful and I can’t talk, I worry. Added to that I think of the expense, which I should be able to cover, but it’s my mate and friends who I miss and look forward to seeing which puts me into a dilemma. I speak to TB regularly and I know he’s hoping I make it - as do - I but it’s not as easy as that as I have to take into consideration the nuances of this illness. Admittedly I’m hoping to spend some time with my lovely PS as well as my good friend GB, the restaurant owner who has also been ill. Writing this I recall a drive down to Miami to watch England play football with a group of lads over there. We piled into my car and off we went to watch what turned out to be a great match. As GB had to close his restaurant after this outing – and also needed to get back later that day, he decided to drive my car; we sped along Alligator Creek as if we were in a Formula One car, in excess of 100mph. I should point out that back in the day he’d been a world class driver and represented the UK so yes, we did get back in plenty of time but what a journey and fantastic day to remember. I’m dropping little snippets like this in from my past hoping they don’t bore you but all this is to do with the decision about when I take my trip to the States – I’m still hoping to travel in January and stay for a few weeks, depending on my health. Life has a habit of throwing spanners into the works but I’m seeing my consultant soon and may go on a new drug, plus the procedure to sort out this Neuralgia may be appointed too, who knows.

Another day and another slow start but eventually became a great one after my body warmed up and I’d been out in the fresh air at the park, had plenty of coffee and chat. How long this good feeling lasts I had no idea but after meeting up with my old buddy SH and chatting up the staff at Morrison’s as we always do (they love it!) followed by a visit from the ex and her daughter which was such a lovely afternoon. I do miss the chats with these two so this was a mid-week treat. As was when writing this my Facebook Messenger pinged and it was from an old work colleague. “Where am I he asked?, followed by more banter and ridiculous suggestions of places he might be – and then in walked my Scottish buddy, NC! You could’ve knocked me down with a feather. How did he know where I lived I thought? We chatted and laughed, catching up on events and the time just flew by. He’d bought custard creams (my favourite) along with a few other delights. What a fantastic end to a fantastic day which left me floating; there are times when life deals you days that make everything worthwhile and this was one of them.

Me with my surprise Scottish visitor!

After the visit from my mate my mind was full of the past and although I no longer earn like I used to (in the Security industry) and I’m not travelling the world like I used to, even having MS I have a sense of contentment and I suppose life is settling down as it would have eventually if I’d carried on until retirement. While I have all the frustrations of being restricted, I retain so many happy memories that will never leave me; I have friends and acquaintances that I hold dear. MS has completely changed my life for the worse and I know there are times I really struggle but I realised when I was talking to my friend the previous night that my personality hasn’t changed and although I have to approach things in a different way, very little of the essence of me has changed. I still do a great deal, I can drive in my modified car and I can definitely still hold a conversation - and indeed an audience! I hope I still retain a little charm as I know I’m still a dreadful flirt and I remember each morning I wake up feeling good (in fact probably a lot more than most), that I’m lucky. The visit from NC had really boosted me – he’d gone out of his way to spend time with me which is something that means so much; thanks mate.

I paid a morning visit to the fellow MS sufferer who I’d met a while ago - the young mother of two who is just like I was in the early stages of progressive MS, struggling with the anxiety and fear of how life will change. I hope I offered her the hope she needs. She is an amazing mother who still holds down a full time job offering care to people in the community but it’s evident that as time goes on it’s becoming harder. The second part of her drug allocation takes place soon and I’ll be available if needed and in the meantime we’ve made arrangements to meet again soon. Later the same day I was invited to dinner at my sister’s. She’d made a lovely chicken pie with a load of mixed veg which was delicious. Meals like this help to balance the times when my diet is less good!! After dinner I left to meet with a dear friend who is having life issues. Sometimes I think the views of a male can be useful to a female – well at least I hope so! So I’d spent the day offering help and I felt that my pearls of wisdom also confirmed that what I’m doing and how I’m living my life is exactly where I want to be right now.

Bingo day with mother went well and the laughter was, as they say, the best medicine. Even at the grand old ages of 70- 80 the people in this group have a wicked and quick sense of humour. I also received a letter confirming the referral for my nerve operation although how they sort a tongue out is a mystery to me but I’m sure there’ll be something. I will update as and when I hear. My mate and owner at the café in the park is turning 50 (I know we all thought he was older!) so a spread had been put on (NB a spread means a selection of sandwiches and cakes for those in the States). The group of regulars had also put together for a balloon ride for him. Anyway this guy was really surprised and it was nice to see how much he’s appreciated. I didn’t stay long because I was stumbling and the Neuralgia was back but the others partied on and a good time was had by all.

I’m finishing this month’s edition with a visit to another old mate and colleague at our usual haunt called the Fig and Favour - a great place to meet and as ever it was easy company as we get on so well and it was nice to hear that his work and life is all good. Seeing him reminds of the banter and work which I miss.

On reflection September hasn’t been too terrible; the Neuralgia has been managed even though it makes me stumble and I’m aware winter is on its way and I’m useless in the cold weather. I have a busy month ahead so fingers crossed a decent read for you all next month!