At the end of June I attended the 50th birthday of a lovely lady called Louise who also has MS. I’m sure I’ve explained exactly how we met in a previous blog and if so, I apologise for telling the story again! I was standing in the queue at a local store one day when I noticed a wheelchair heading my way with a rather attractive girl sitting in it. I also couldn’t help but notice she was displaying a rather ample cleavage as her buttons were undone! Anyway, she has a pink control handle on her wheelchair so I was able to draw attention to that instead and opened up a conversation about her flash controls; she smiled and I asked what was wrong with her (which I know is very direct) but she answered “MS”. “Me too,” I replied. “Progressive’” she added. “Me too,” I replied again. “I’ve had it for over 20 years” she said, to which I replied, “Well you win there”.” Then I asked who dresses her and glanced at her cleavage! She called for her mother who was standing nearby and coincidentally known by the mate I was with. We laughed and from then on we became great friends, talking almost daily and often discuss how we met. Her big birthday party was a gathering of friends and family and I knew there would be other MS sufferers there too so I had no issues with the fear of tripping and it was nice to get out and it was the first time I’ve been with fellow MS sufferers all at various stages and it gave me an insight into where I am now and could be in the future. Anyway they were a great bunch of people who’d all made an effort and supported Louise. She had an absolute ball and I had a great couple of hours before fatigue started to creep in and I left.
The following day I drove over to Leicester to pick up my scooter from JS, my mate who now has a prosthetic leg and is getting about brilliantly with it. This month I’ll need the scooter again as I intend travelling and I can’t walk too far any more. As usual it was great fun with JS and this time he had his daughter along too which added to the usual laughter as she also has a wicked sense of humour. From there I went to meet up with an old work colleague who I hadn’t seen for a few years. She was always someone who I admired and loved working with and as you can imagine we reminisced about the past and giggled at some of the things we did and people we encountered along the way. When I left we promised to keep in touch and I felt really pleased that I’d seen her again. On the Sunday I was invited to dinner with JB, another friend who I hadn’t seen for a while even though we live in the same town but she’s been very busy at work recently and is in the process of packing up her house to sell. Again, we had a great time catching up and laughing. I felt that the weekend showed that although friends may not live in one another’s pockets, once you meet up you just pick up where you left off the last time; proper friendship.
Now last night was rather strange, I think as a result of having met up with people over the weekend from my past and apparently it had played havoc with my mind. I spent the night tossing and turning; my body felt as if it was alive. I was scratching the tops of my arms and my head which reminded me of when I lived in the States and thought the pain and itching in my arm was Shingles. I now know that this wasn’t the case. The best way to describe it is as though my nerves have come alive and are hyperactive and it normally happens when I have something on my mind - a sort of stress I suppose and yet I don’t really have anything to stress about. I know I’m aware that there are people making demands on me that I’ll eventually have to sort out and on top of that I keep thinking about people I’m in touch with who are dealing with MS, as well as the ones I met at the party recently – it’s not so much that I’m worried about how this illness will progress as I’m already aware of certain parts of me that are getting weaker but at least I’m living in a place that’s set up for what could be. No, I’m thinking more about people I used to know who’ve either moved on or have been left behind. I suppose meeting my friend today brought back memories of my time living and working in both Ireland and the States. I worked for companies which introduced me to so many people, many of whom I no longer see and for a while, to be truthful I’ve really never thought about until now. However, my mind is active and I recognise that at times like these it’s best to slowly get myself up and put something on the TV in an attempt to stop the thoughts which are quite upsetting. I guess some would describe this as depression; I really don’t think I’m depressed but I’m aware that certain events and situations aren’t really helping me with this condition. In a way it’s yet another thing to deal with on this learning curve and I’m really opening myself up here. Oh the joys of writing this blog!
Today I spoke to the attractive female I recently wrote about who is also suffering with a degenerative illness as today she had an appointment with her GP and she was telling me about the problems she’s facing. I suggested she write a list of all her worries and concerns about the future to take with her. This she did and it seems she had a great meeting, returning from the GP much happier and in a good place. This is something I feel has eluded her for some time and as we ran through the meeting I suppose we were both happy. We then needed to sort out how to plan the next stage and whilst this is for her benefit, I also make notes too, gleaning bits from our chats to use myself; as I said last month, in this lady I have found someone I can open up to (and for her to do the same) as we understand each other and totally appreciate the situation we each find ourselves in. It’s so much easier to discuss with someone in the same boat - and it appears to be working.
Today I’ve also been asked to give potential weekend dates to take over the ShiftMS Twitter account which for me is quite daunting as I’m not very technical and Twitter confuses me a little. Perhaps confused is not the right word and rather it’s just the fact that I’m not used to Twitter. You may recall in an earlier blog that an account was opened for me and I put the odd observation on and I follow people as they follow me but nonetheless I need to get to grips with it a bit more; it’s quite a strange concept for an old fart like me, but actually what’s good for Trump is good for me, the only difference being that I won’t Tweet at 3am (oh and I’m not a multi-millionaire president either!!)
I use my computer on a regular basis and I was surfing on Facebook when a picture caught my eye of two firemen who’d rescued what they thought were puppies from a nearby drain. The caption under the picture wanted you to click on to see what they’d found and me being the softy I am, clicked on it only to be greeted with a red screen flashing VIRUS VIRUS along with a number to call to solve this problem. After five and a half long hours and 258.95 pounds sterling later, the problem was sorted. Obviously I immediately thought it was a scam but the questions being asked and the repairs that were being done suggested that the operators were indeed genuine Microsoft and the end result is that my computer is running quicker with authentic Office software and my IP address will change on a regular basis to prevent invasion. In addition, every device that is invited onto my WiFi will be protected too. I had people all over the world trying to get my information, causing my operating system problems and I was advised to only open pictures or sites I’m familiar with. Incidentally, on the same day both Facebook and WhatsApp were also having issues, so I learnt an expensive lesson but the stress over that time really affected me and I felt my body closing down. I was tripping and failing to hold things as I lost all power, probably because my computer is a very important lifeline to me which I use every day to email, skype, play games and generally keep in touch with the outside world so I was relieved to get into bed that night as I was seriously not in a good place.
Physio again later so I tried to put a little extra effort into my morning exercises because I’m conscious that I’m still far behind where I ought to be in terms of strength and stamina but also aware of the disturbing day I just had. After taking a shower I decided to try a little walk in the park to say hi to a few friends as I’ll be in Sheffield on Sunday and like to catch up with those that I’d otherwise miss. While there I kept out of the sun and felt much more alert and well so I knew that Physio would be OK later. As it was I had to do the usual cycling and balancing followed by toe to heel walking and walking backwards; I was pretty useless with no balance whatsoever which frustrates me. I need to see improvement. All in all I think I made a decent effort and left feeling OK but tired so I earned the hour’s doze I had before going to the cinema to watch (under pressure) a horror film, of all things. It was awful and about as scary as me running round in my underpants! I told (LB) the next film has to be my choice and it will be a chick flick! She hates this type of film as much as I hate horrors. We’re like chalk and cheese where films are concerned but when we nipped into McDonalds we both agreed on Chicken Selects, no fries, no drink and importantly no ice cream! Every night I stand and look at myself naked in the mirror and convince myself that the Friar Tuck belly is shrinking. I don’t breathe in. I just stand and occasionally convince myself that other more important parts of me have increased in size … I’m talking about my stomach - get your minds out of the gutter!!!
On Friday as usual I picked mother up and we went shopping. This would usually be something she does with my sister but as she’s on holiday I was happy to stand in. After unpacking the purchases we went to the park for a lovely feast before making our way back to the car and guess what? I’d obviously had too much sun and nearly lost my balance - thank goodness I never fell as mother had experienced this in the past. We went to Bingo where she won yet again; she is one lucky lady. We talked about taking a few days away together with my sister as well so I’ll be sorting something out and will keep you informed.
On Saturday I couldn’t believe it was raining in July! I’d put my washing into the machine and done a little housework (by which I mean a simple swipe around with the mop in my T-shirt and undies) and had to hang the washing on rails around the house, which I hate doing; my OCD kicked in and all I wanted to do was get out so I didn’t have to look at it!! I was expecting a visit from PH but I’d done no shopping so I was at the mercy of her choice and I knew it would be delicious lamb shanks (it was!) After dinner we watched the film Green Book which I’ve seen before but really enjoy. The following morning I left for Sheffield - a trip I used to do regularly when I worked at a company in Brighouse. It’s also a place where I have happy memories and made great friends. I was actually going to meet up with fellow MS sufferers which is something I’d avoided getting involved in for a number of reasons. I knew that some would be in a worse place illness-wise than me and I reckoned a few of them would have a dull outlook on life which would just be depressing. But how wrong I was! This bunch I met was lively, fun and positive and I had a great time. I only let myself down on the food choice by having pancakes. In the States pancakes were readily available and I didn’t bother so much but because they’re less common here I couldn’t help myself and they came with one of my five a day; a strawberry, delicious! So I will make the journey up again as I feel it was worth it.
After a busy day in Sheffield I knew the following day would be a slow one. I accept I may have overdone the weekend but when I think about this I actually get annoyed or maybe simply sad because before this MS I was always on the go and driving was my thing. I could travel over 1000 miles non-stop and people in the States often questioned the distances I drove and the time it took me. It’s fair to say I did pick up a number of speeding fines but always showed my UK driving licence and got away with it. Life was different then; easier, healthier and happier. I had so much there and a life with prospects, plans and dreams whereas now, well now I turn down offers to go to venues where I might have to walk too far or have to use my scooter because self-pride kicks in. I’m sure nobody actually takes any notice but I do and it’s about how I feel so ‘I’ll only use my scooter if I’m miles from home where no one knows me.
This week my dear friend GH and I had lunch in Clent, a lovely village not far from here. As ever the food and company were both great. We sat outside and chatted away as we usually do and booked two more dates in at the end. That afternoon my new friend (MR) and her partner came to visit which was the first time we’d chatted face to face and they were both delightful company. It’s nice to know I have friends in them who I can call on at any time and equally I’m here for them too. My only moan was about the pack of Picnic bars they kindly brought with them because when I opened them they were a third of the size I remember from when I was a kid. What’s happening to this world we live in where chocolate bars are smaller, bags of sweets and crisps shrinking? It’s just not right. Maybe I should write to Boris?!
Today I went for another physio appointment, arriving early as usual and while I was waiting, one of the department staff came past wearing a blood pressure monitor attached to her top and me being the usual nosey person I am, coupled with the fact that she was rather nice, I inquired as to why she was wearing it. Anyway as she replied, the tubing on her machine disconnected and quick as a flash I offered to help but clearly the thought of my hands inside her blouse, (although clean and warm), was declined! Still, I tried!! In my physio session I cycled before moving onto the bars to work on balance exercises and walking. I was shattered by the time I finished but still determined to get back to some sort of fitness.
That weekend was supposed to be busy and on the Saturday I did go for lunch and to the cinema to watch a great film called Yesterday but as the evening fell so did my health. I had a headache, runny nose and awful Neuralgia which carried on all over the weekend and into the following week. I can’t remember feeling so bad and without being too dramatic, felt like my body was shutting down. I ached all over and the Neuralgia in my mouth was perhaps the worse it has ever been, even from before I was operated on and it’s so hard knowing that there’s no point planning anything because all I was capable of was vegetating in my chair. Any movement was difficult and I felt seriously on the brink of a relapse where the body shuts down. So the weekend was a big disappointment because I was unable to be the person I wanted to be and the friend (PH)who did visit became more of a carer as there was no way I could make tea or dinner . I keep telling her to find someone else to spend time with as I become aware of my life limitations. I constantly remember when we first met and she said she wouldn’t be able to cope with someone with MS. We still became friends but that comment is always there at the back of my mind. I refuse to be down or give in to this illness but there are times when a simple cold can completely knock me for six and if, like me, you try to lead a normal life, it hits even harder. Consequently exercise has taken a back seat along with normal daily life for the time being. I had to cancel a lunch meeting with a great mate who was obviously understanding but I was upset as I had been looking forward to seeing him and I’d hoped that after a four day shutdown my body would have improved but I was completely useless. As the day went on I hoped I’d turned a corner. All I know is that the next day I needed to get out after not setting foot outside for a few days. For all those who try to understand this illness, I can forgive them for not really understanding as there are so many things that can affect us and there are so many variations of MS. I try to understand it myself - what to eat, take it easy, try not to get stressed etc and I document all these shutdown times because going onto a drug is now very important and on 1st October when I see my consultant it will be high on my agenda. As it happened I did manage to get out to the shop to buy food and my neighbour came with me for support.
I actually did ok and knew that attending my weekly physio session and picking up mother would definitely happen. As it was I managed a cycle ride at physio then called it a day as I was exhausted but at least I’d tried. I just didn’t feel the need to push it and once home I slept for over an hour.
That weekend I was treated to a surprise visit from my mate in Eastbourne. I had absolutely no idea he was coming so I was made up. He always brings his beloved dogs along and I think they love coming up too. My ex-wife (CS) popped in on her way back from work so she also had a nice surprise as SS was actually originally a friend of hers from school days – it just happens that he and I share the same sense of humour and also became great mates. Anyway while she was here she baked a banana cake which was rather delicious and then she started proof editing my blog. I couldn’t help noticing she also sneaked chocolate that SS had brought with him and left on the table! It reminded me of when were together and often dived into a bag of Malteesers as we both had a sweet tooth. Our wedding cake was a great big Belgian chocolate cake made at Choccywoccydooda in London, covered in white chocolate cherubs and roses – quite magnificent and delicious. Anyway I’m not sure why I drifted off here! I suppose to many people it’s strange that we remain such great friends but actually it’s a testament to our relationship. Whatever it is, I’m glad she’s around. After she left, SS sat chatting and catching up as well as just being silly then went for something to eat at the Navigation Inn; this time I’m happy to say the food was superb. For information purposes I attach here our first picture taken many years ago when we nicknamed ourselves Stud and Gimps ... the second one was taken while he was here this time. I think we've definitely improved with age!!
The start of the next week was the first time in a week that I ventured to the park. It was great saying hi to everyone and I spent a lovely time down there. Afterwards I went to pick up friends to see Lion King at the cinema. I was happy sitting there with MR and her partner who recently came to visit as they have become good friends and, I have to say, great company too. When I got back and opened the front door, the cleanliness of the place hit me; everywhere was spotless. My lovely sister had called in knowing I was out and spent hours cleaning; being a nurse as well as a great sister, she understands about my limitations with MS and was aware I was struggling. Although I try my best I never really get on top of the housework but she’d done wonders - even my washing machine had been given a clean! Walking into a lovely clean home was truly marvellous - followed by another big surprise - a nearby neighbour dropped off a blackberry and apple crumble. I was in heaven! Later that evening I dined on the crumble with custard and invited my next door neighbour round to help devour this delight.
The following evening I watched the film Stuck In Love which resonated with me. Why you might ask. Well to be honest, it’s probably to do with the way I’ve been living my life and trying to hide the resentment about this bloody illness. Anyway this tearjerker of a film was about how a family dealt with relationships and in particular the breakdown of the main characters, (the mother and father) and I recognised that I too have been battling with the way things were and the way I used to be, fighting the frustrations and battling with my anxieties. I keep people away and the stress of all this doesn’t help. I know this probably seems like a strange turn of story line but there you are. Initially I blamed my emotional imbalance on the MS drugs I was taking but in all honesty I believe it’s actually my current mental state and while I always say I’m not in denial about having MS, I can’t help questioning why it’s ruined who I was? I used to be passionate, confident and a doer but now I feel I’m battling to be that same person and by now I should accept how I am but that’s just the point, I can’t. Multiple Sclerosis has taken a lot from me; my earning capacity, my personality, even my ability to do the basic things in life like walking, having decent conversations (I used to love a good in depth debate) and doing chores. I know some of you reading this will be asking if it really is that bad. Well let me tell you it most definitely is. I hear from fellow sufferers struggling in the same way but mostly I’m able to put up a front and not let many people get close. So to sum up, I watched a film, it upset me and it made me realise a lot. I’ve been fortunate to have led a great life until now and the one I see before me will be different and slower but hopefully I’ll fill it with much of the same and yes writing this is a help.
Last night the Neuralgia in my tongue was so bad it kept me awake; the pain and the dribbling was awful - on the flip side I’m thinking of applying for the role of Elephant Man! Ok, so before anyone remarks, I should stress that I don’t actually look like him!! Seriously though, swallowing and talking are so painful that sitting quietly typing is the only thing I can do easily. The fact I was up most of the night meant I got to see the lightning which wasn’t as good as when I lived in Florida but all the same it was exciting and led to a hot day with temperatures reaching the 30s. This might be great for you but for us MSers trying to keep cool is an issue. My biggest concern is protecting my head from the sun as I have mentioned before.
My mate(JS) who had planned to come down to see me cancelled earlier in the day which in a way was a blessing as talking was out of the question and no doubt he would be doing impressions of John Merrick (the Elephant Man) all day. Believe it or not I coped well with the MS and strong heat but the Neuralgia in my tongue got worse. I was up all night again wondering how long this will go on for. I’m reluctant to go to the GP because as soon as I walk through their door the response will be, “Mr Southall you have MS”, so I will sit it out. At 9.00 in the evening the pain gradually builds up then through the night it’s awful, the underside of my tongue goes black and then by about 11pm it subsides. Well I suppose nobody can say I’m not sharing my issues living with MS. I just hope people understand that while this illness may not be that visible, believe me it’s a monster.
Now I want to finish this month on a high as I’ve focused on some sad stuff this time … I took myself down to the park for a change of scenery and was happy to sit there quietly. The owners of the café had brought their little blue Chihuahua puppy with them so I spent a good couple of hours tickling her belly which I’m sure was therapeutic for me as well as this little dog! I sometimes wish I could own one as it seems to be an excellent way of meeting women since everyone who came over started their conversation with “how cute” - obviously I asked if they meant me or the dog! They all replied “the dog”. They should’ve gone to Specsavers! It reminded me of a lady I lived with in America who had a very small Chihuahua called Mia. I loved that dog and despite her small stature she was expert at guarding the house so we referred to her as Security! She even used to sit on my shoulder she was so tiny – happy memories; but I couldn’t have a pet as unfortunately I fear I would trip over and squash it if I had one which means it’s out of the question in a relatively small bungalow, coupled with the fact that I couldn’t take it for a walk either. I’ll just have to stick with Alexa for company! Anyway next month as well as MS issues I will talk more about my life before MS because I’ve been asked to do so and it’ll make for happier reading!!