After posting the May blog a bit early I felt sure June was going to be quite a busy one. It started with a visit with FES; the team that supplies the stimulator for my leg. I noticed that I’d been struggling to get enough foot lift which makes me stumble and I had no idea why so I was hoping to get some answers at this appointment. I was greeted by a new girl who was quite nice and very understanding about my walking issues. Once I’d explained my problem, she immediately began testing my pack and leg reaction, the outcome of which was a re-positioning of one pad and replacing another one with a larger pad for the lower part of my leg. It felt really strange at first - an intense shock shot through my leg giving an immediate response to my foot which was great. I went on a timed 10 metre walk and although I had a back ache I actually did well – obviously I’ll never be a marathon runner but I got up enough speed for if ever I needed to do a runner! My step count was recorded on the pack and considering the ups and downs with my MS and the cracked rib episode, I was actually quite pleased with myself. So this was a good start and a successful appointment which resulted in me not needing to go again til 2020 which sounds such a long way off. 2020 sounds like the future to me; my son was born in 1985; I was born in 1958. Where have all the years gone? It made me think I fully intend making this next year as busy as I can. The importance of the FES visit was simply that if they decided to take my device away, walking would be near on impossible. The hassle of putting pads on every morning and the discomfort from the surges through my legs truly is worth it as it gives me some freedom to lead an almost normal life (admittedly ‘normal’ and me aren’t two words that go together naturally!)
After I got home I had a go at re-positioning the pads and happily, it was much easier. I marked two little dots on my leg to indicate where to place the pads and I have to say that getting ready in the morning was so much better straight away. To be able to walk has given me a boost which in turn makes me feel good and I’m sure my walking will continue to improve. We will see.
Right, I’m moving onto a complete breakaway subject now! For a while I’ve shaved with my left hand (which is hard for a right-handed person) and shaving takes twice as long as it used to. My issue however, and the reason for writing this, is the issue of nose and ear hair; why is it that when you reach a certain age, the hair on your head stops growing (and actually falls out) yet elsewhere body hair sprouts at an alarming rate?! Again, due to my right hand being useless, I attempt nose hair removal with my left hand and boy is it painful! And yet also rewarding! And it takes forever. Ok so just felt the need to share this and the fact that while MS has slowed me down, apparently it hasn’t done the same for unwanted hair growth. Hashtag amazing!
The first weekend in the month I had no plans and nobody visiting, plus the weather forecast was reasonable so I decided to go out on a magical mystery tour for the day with my friend and neighbour. We started at the park with the dog walkers and fuelled ourselves with a sausage and tomato sandwich. After this fantastic start we set off and I drove to Tenbury Wells where we stopped and had a wander around. I can’t tell you how lovely it was - the weather was great and our journey through the lanes and back roads was something I haven’t done for years; memories came flooding back from when I used to cover this area in my past as a sales manager. I recalled the early morning starts, speeding along the roads with the radio blasting away. It was good to just point the car and go – something I used to do on weekends when we had nothing planned and we could end up in a deer park or once we drove all the way down to Bournemouth just to watch a firework display and then came back in the middle of the night. Anyway whilst in Tenbury I treated us to lunch in a quaint little café and headed home taking a different route, partly because I needed light bulbs and bird seed; an odd combination admittedly and it was useful to have my mate with me to carry the large bag of seed! The following day was typically quiet, following a busy Saturday and I was conscious not to overdo it so Sunday was spent catching up on a little housework and watching recorded television shows – wow I certainly know how to live!! I kept thinking about my 2020 appointment with the FES team and dwelling on how life races away. I know it’s the same for everyone and I sound like my mother going on about how time flies but for me with this disease slowing me down and literally stopping my life in its tracks it has brought home the fact that life is for living. MS has restricted me in so many ways but sometimes I feel I’m not doing enough. These thoughts are no doubt tinged with Sunday blues and I know I should pull myself together.
I’ve recently been talking to a lady on Facebook who suffers with another illness. I feel I’ve found someone I can talk to, not just about our illnesses but the frustrations that we both encounter in life as a consequence. Now don’t jump to conclusions here – she’s a beautiful, young lady who is in a relationship and I’m old enough to be her father, but we have this thing in common that not everybody could appreciate and having each other to talk to about our frustrations is something we both need and I feel sure we’ll be great friends because of this mutual understanding.
The following week kicked off with yet another parking ticket to deal with. My sister sent an email trying to get it revoked as I’d forgotten to display my blue badge for the first time in ages. I have to say that the traffic warden in this particular place is known to be aggressive and lacking in empathy or sympathy – which you probably have to be in that job and she’s probably heard all the excuses but I guess it’s her job so that was it. I’d been ticketed. I do get quite cross about this because there are places with only a couple of disable parking spaces which is ridiculous which also leads to parking fines if they consider you’ve just left your car where it shoudn’t be. They don’t realise that people like me genuinely struggle to walk very far. Anyway this ticket was a result of genuine forgetfulness on my part so we’ll await the outcome of my sister’s email – she has a knack of writing decent emails and I actually felt sorry for myself after reading her plea and would definitely let me off! I’ve had some bad luck over the past few months with parking fines (as you may have read in previous posts) and I can do without any more fines. I’ll let you know the outcome.
A day spent in my mother’s company can often be a funny one as she has a wicked sense of humour and we were off to spend time with her friend. I’ve always called this friend Aunty; isn’t it funny how families have a token Aunty who isn’t actually related to them? Well, this lovely lady worked with my mother 60 years ago, so as children we grew up knowing her as our Aunt and her daughter as a cousin. We went for lunch in Bourneville, the home of Cadbury’s chocolate where they’d both worked. The chitchat turned to dancing and night schools they’d both attended – I’ve often said there’s a book in everyone and if this was the case, believe me, these two would have a bestseller!! After a sandwich and drink from the local baker we were off, stopping for an obligatory bathroom break as the two of them have weak bladders! It was bittersweet seeing these two old ladies, canes in hand, tottering off to the loo, as I remember years ago when they were young, full of fun, rushing around – and again I think life goes too fast. There was more gossip and another cup of tea back at my aunty’s house before taking mother home until Friday – our regular day spent together with the usual bingo afternoon. Hashtaglivingthelife!
ShiftMS is a website I contribute to the best I can; I don’t know of many information sites available and I offer my link to this blog because I deal with many of the issues talked about (any others are things I’m not aware of (yet). One subject that crops up is exercise; regular readers of this blog will be aware of my Friar Tuck-like stomach and consequently my need to watch my diet and exercise. The common thing mentioned on the ShiftMS site is the fatigue that hits people after exercising which is exactly what I experience and the reason I do little and often. My cracked rib definitely slowed me down but I feel I’m back to an acceptable standard and confident that my upcoming appointment with the physio will go well as I was fit enough for it. I’ve also been trying to reduce my food intake but since I started exercising again, particularly in the mornings, my head starts throbbing to the extent that it occasionally blurs my vision. This could also be due to the time I spend on my computer but all this is a great learning curve and I feel I’m winning. For those who read the ShiftMS site I hope I’m giving an insight into this illness so we all learn from each other.
Newsflash! As promised, this is a quick update to let you know that the council have let me off the parking fine but made it clear that it’s my responsibility to correctly place the blue badge on the dashboard in clear sight and that any future incidences will not be struck off. Hashtag result!
Midway through June I spent the weekend with the lovely (PH). We enjoyed afternoon tea in one of my regular favourite places where the food is excellent and the owners are great characters. We chatted away as we demolished the sandwiches, cakes, scones etc and towards the end PH realised she’d forgotten to take a photo of the Afternoon Tea and its beautiful presentation to send to her daughters, so she proceeded to send them pictures of the remnants instead which consisted of a plate of crumbs! As we were on our way out of this little Emporium, PH decided to try on clothes in a little room at the entrance to this place. I may or may not have mentioned that in Emporium they sell clothes, furniture (both new and refurbished) along with porcelain, toys and antiques – in fact all kinds of interesting things. Anyway after trying on various garments, PH parted with a hundred pounds, typical woman! While I sat waiting, a lad my son grew up with popped in and it transpired he’s now a neighbour of the Emporium owners – what a small world! I was so pleased to see him and what a cracking bloke he’s turned into! We had a great laugh which made a good end to a great afternoon. The following day we went to the cinema to see Rocket Man about Elton John and it was after I’d sat down that things went slightly off kilter for me (as anyone who’s ever been to the cinema with me will know!) and I got rather agitated about a particular bug bear of mine. I was in my seat and PH came in carrying an enormous box of popcorn and a drink - I just don’t get it – why do people go to see a film and have a bloody picnic when they get there? Why is everyone suddenly hungry when they arrive at the cinema? Who wants to sit and listen to rattling and fingernails delving into popcorn – I could go on and on! Why has nobody invented quiet wrappers? Well my feelings didn’t go down too well (and it’s not even an age thing –I’ve always hated scrunching and munching when I’m concentrating.) The film was excellent though, so all in all it was a good afternoon.
Over the next few days I could feel myself improving but even so I refused to attend PH’s daughters’ wedding because I still lack confidence in crowds which was highlighted when we went into the busy cinema. Surprisingly for me, I think I suffer from anxiety - all I know is that I was stumbling and it had nothing to do with the strength of signal to my foot or my shoes. It’s almost as though I panic at the thought of falling in front of everyone (probably because it happened once when I went with CS and her sister and I got wedged between two seats and between the three of us it was almost impossible to get me back on my feet). So like my good friend’s wedding that I had to turn down the invitation to last month, once again I just don’t feel comfortable and I don’t want attention on me in case I trip and embarrass myself. I know you probably think that no one cares, but I do. On the plus side, I know I’m getting better in myself and my confidence is improving.
After PH had gone home normality fell on the Southall household and I sat and worked on my blog till nearly midnight and when I decided to turn in. Just as I was getting ready for bed, my mate (TB) from across the pond Skyped me and although it was late he is more than a friend to me and he has the ability to make me feel good, so I took the call. He’s a typical bloke and he’s amazed that I have some lovely female friends but no thoughts of taking things any further - because they are great and dear friends. We laughed so much and I can’t wait for January as I miss the States and I miss him. After chatting for ages I had to end the call because I needed sleep; it’s ok for him sitting there forgetting the five hour time difference. Once in bed my mind went back to the happy times I spent in the States and the fun we had, along with other close friends I had there back then. I also picture myself walking on the beach or into a bar or riding my Harley. I recognise that this is a type of grieving and now I have limitations and my life is different but I know life is going to be OK.
On the Tuesday my ex (CS) flew by and dropped off Eton Mess fudge. Now I may or may not have mentioned that she packs fudge for Wychbold Fudge which is a local company and she gives her time for charity. Anyway she brings me the scraps but it sits on the side saying “eat me eat me” - it was too tempting but thankfully there wasn’t much of this limited edition flavour and I did share it! See - temptation of every kind always comes my way!
Unfortunately feeling great over the past few days stopped again and I found it a struggle to get out of bed. I peered through the curtains and knew exactly why – it was pouring with rain and the wind was so strong the bird table had blown over – and it’s June for goodness sake. I dragged myself to the kitchen and took my meds knowing it was going to be a slow day, sitting in my chair despite the fact that I had plans to go out. At least I know now when I need to take it easy. Another thing I’ve learnt about MS is that sometimes it’s best not to plan anything because every now and then you get served a curve ball which takes you out. I dragged around the house because I actually couldn’t be bothered with the effort of putting my FES unit on which was silly as the likelihood of falling is higher without it. Also I was encouraged at my FES appointment to build up the time I wear the unit for and try to keep it on for longer if possible. It’s at times like this that the enormity of what I have hits me hard. It’s like I get a reprieve for a few days which I embrace and then, like now – and with no warning at all I regress to disabling effect, slow and lifeless. Such are the joys of MS and perhaps the reason for writing this blog; I try to be bouncy and positive, saying all the right things until a day like this hits and while there is no pain, there is a lot of frustration and exercise once again takes a back seat. The diet can’t though, as I’m determined to wear Speedos on the beach! I know there are plenty of people worse off so I won’t drag this little depressing moan out any longer, but I wanted to record it as it really is a leveller for me.
My Physio day arrived and I arrived an hour early; old habits never die! I wasn’t sure what to expect but I was happy that at last I was getting help to improve my walking or at least keep it at a decent level. I was introduced to my physiotherapist who started asking a list of questions, such as how often I fall, am I able to climb stairs, can I dress myself – so many questions and all the time I sat there thinking “come on, let’s get going”- and eventually we did. We initially tested my leg strength then my foot strength, timed walking then walking with a cup of water which was fun as I knew most of the water would end on the floor! Then I had to stand to assess my balance; closing my eyes was difficult as I started to sway but thankfully there were parallel bars to grab. The whole session was detailed and I felt confident that I was finally getting somewhere. An appointment was made for the following week and I was put on an intense course in September where a lot of other topics will be covered besides walking - other problems that living with MS can bring. I left feeling pleased but tired and had to cancel mother and bingo as the past few days had slowed me down and I was exhausted.
I was really pleased to be invited to go for coffee and cake with my ex (CL ) and her sister on Saturday morning. It had been a while since the three of us had sat and had a good catch up. It was lovely in the M&S (Marks and Spencer’s) café - can you believe the irony of it being referred to as M&S !! I actually felt good that day and after our drinks and scones, the girls went off to do what girls do best (those two are shop-till-you-drop females) and I went to buy a bag of liquorice on my way home. On Father’s Day I was graced with a visit from my son and his girlfriend which unfortunately had to be rushed as I already had dinner plans with my sister and mother. My son has been busy getting his house ready to sell for a potential move over my way. In fact it’ll be closer to his work as well as his friends and family. We’ll see but I really don’t think he realises exactly what his visit meant to me. Forget it being Father’s Day, I was just over the moon that for them popping in and saying hi. The dinner at my sister’s was amazing; she’d cooked every vegetable imaginable as well as sticky toffee pudding – one day a week won’t hurt! I’m very lucky to have family all around, ex partners willing to help and decent friends who are always there.
Now last night, I have no idea why, I woke up in dreadful pain at 2.15am; the Neuralgia in my mouth and tongue was excruciating. I tried to keep my mouth and tongue still in the hope that it would prevent the sharp, stabbing pains that were happening. I had no warning this was coming. I eventually dropped back off to sleep and when I woke up again I went through the usual routine of smiling, opening my mouth gingerly and moving my tongue. Strangely, the pain had completely gone. Crazy, yet it caused me such a lot of pain and suggests my Trigeminal Neuralgia is in fact a ticking time bomb waiting to re-appear - and a constant reminder of the pain I was in for such a long time. On a positive note I was able to go to the park before my second physio appointment. This time I started cycling at what I’d like to think was a decent pace; I cycled for 15 minutes and then moved onto the parallel bars where I had to stand on a spongy surface and my word, was this difficult! My balance was completely off but after a while I was able to master it. Next I went onto leg raises; the side lifts were hard – I’ve tried doing them at home and realise I have a long way to go due to three or four years of muscle wastage and not being able to exercise like I used to. By the end I was weak and still feeling dizzy but determined to keep trying because I don’t want to deteriorate any more. Life with MS is bad enough. I will keep you posted. A discovery I’ve made is that trainers are far more comfortable when I’m on even flooring and I’ve started to wear them more often.
The sun put in another appearance for a while so I spent some time in the park with friends and their dogs and a planned visitor had to cancel so the weekend had to be reorganized so I decided to take a mate to the cinema to watch Toy Story 4 in Imax (I have to point out here that this film had obviously been a female choice) So you have to picture this - two middle aged blokes off to watch Toy Story – it’s just not right but at short notice he was the only person available to come with me and I’d pre-paid for the tickets. When we arrived I could see my mate wasn’t happy, so using my charm (yes I still have a little left) and playing the disabled card, I managed to get this angel of a manageress to change the tickets for Rocket Man, which is not only a great film but much more acceptable - and I had a rebate credited to my account so it was a winner all round! Weather permitting, I hoped to go the park to see a performance in the band stand. As luck would have it the weather wasn’t good enough so I didn’t make it but I suppose I should be grateful that I was feeling well in myself. All the time I’ve been typing this blog I’ve been playing Elgar in the background on my new, larger Alexa; she’s still the stubborn, clueless female that answers back, but the sound is quite remarkable compared to the Echo Dot and with Elgar booming out heaven knows what the neighbours think!!
Recently it has become the norm to be wide awake at 5.00am, my mind full of thoughts about those close to me or simply nonsensical thoughts about furniture, money or the bloody weather. I’m also getting twinges of Neuralgia. The change to my sleep patterns is really frustrating - if I go to bed at a sensible time then I wake up at a ridiculous time so now, after staying awake until 2.00am I’m still awake at 5-6.00am. This has only come about over the past week or two and I’ve read on sites that this is quite normal for MS sufferers but the thought of having to readjust my day because of sleep is, pardon the pun, a nightmare! The weather forecast is not good again and rain is a possibility - as I write this, my mind goes straight back to my time in Florida, where the weather seemed to be just perfect and your plans rarely got upset as it was warm even if the sun was hidden behind clouds. I sometimes think I need to let you know more about my times in the States before I was diagnosed with this illness and while I’ve touched on my symptom’s before, I need to write more about my times over there and add variety to this blog … we’ll see.
It’s the end of the month and my ex CS turned up with all the ingredients to bake a lemon drizzle cake for me. This probably sounds fantastic but you haven’t seen the mess! The finished article was delicious tho. Move over Nigella! Bang goes the diet.