I’m starting October with a picture of my lovely step daughter AJ taken at the end of last month; as I’ve said many times I adore this girl and we get on so well. She’d popped in with my ex CLS and as usual I offered them a drink except this time I offered the choice from my newly purchased mugs - and as the picture shows AJ got the donut one which she struggled to get her lips round! It was highly amusing and we had a fun time chatting and watching her struggle with the odd shaped mug that no doubt will never get used again! I really enjoyed AJ’s company – it’s a shame she lives so far away because I miss her banter. Then again I rarely see my son and he lives close by but he’s busy with work and his relationship so it’s hard but I know he’s OK and I appreciate the odd Facetime call from him. Sometimes I forget that they’re so grown up now.
I was also pleased by a visit from BSM, a lovely lady who also paid me a surprise visit when I was in Florida where my friends took to her immediately! Anyway I treated her to afternoon tea which I won’t go on about as it was actually awful! The rare time I wanted to impress someone and even paid a bit extra yet it was very disappointing but the company was great and we promised to meet up again. Times like this make me appreciate the great circle of people I have around me
So I finally had the long-awaited visit with my Consultant who, for a change (and possibly because there was a student sitting in) was clear, direct and understanding. He told me my leg had got weaker and the Neuralgia in my tongue was a clear indication that the MS is indeed progressively getting worse; it wasn’t all doom and gloom though – just that it had got worse which is something I’ve accepted. For my part I need to exercise (but not go crazy), eat “boring” food (PS will say “I told you so”) and be aware of my limitations. I’ve explained on here numerous times how I anticipate a slow day if I’ve pushed myself and done a lot - and I manage that part pretty well. I was booked in for a CT and MRI scan and once the results from those come back, a drug will be recommended as it was acknowledged that I need something. I left the Consultant’s office feeling somewhat relieved because it was explained to me why exercise drains my strength and also I was told what I should do when I experience certain symptoms like the Neuralgia in the tongue, weakness in my right hand, memory loss and general tiredness. I’m now just waiting for an appointment on the 20th of January 2020 to see the surgeon who did my first operation and until then I have to cope with the pain the best I can.
On the 1st of October my great friend in the States (TB) was 70 so I skyped him and sang Happy Birthday - and let him know that he looks every one of his 70 years - I won’t repeat his response! We discussed the change of plans regarding my travel to the States - I’m living in limbo regarding my medication and the procedures I’m waiting for so I can’t really make plans until that’s all sorted. I asked if he might pay me a visit over here instead; I think a visit to the land where everything good started is actually a great idea! While TB is a man of many years – older, wiser etc –he’s an absolute girl when it comes to travel; he’s nervous and needs to have his hand held so we will have to see. I haven’t altogether ruled out going to Florida but in all probability it’ll be later in the year which is a great shame as I miss my great friends over there and Sarasota feels like my home.
Physio is now a weekly event and the amount we do is almost double what I was doing previously so it’s proving hard and when I look back at what I used to do before I had MS, it makes me feel useless. I remember how I used to run with my best mate and chat as we ran! MS restricts my range of movement and the amount I can lift – I now use 4kg weights whereas I used to work out with 20kg weights with relative ease - no wonder my shape has changed! I also realise the food I eat has a big impact but as I’ve said before, there are times when food becomes the only comfort when my body is sluggish and I feel lonely. When you sit all day barely having the strength to move, a bag of popcorn becomes your best friend! Having said all this, the group at physio is good fun (for a mix of MS and stroke sufferers). I pick one guy up on the way and we have a laugh on the short journey to the hospital where the class is. We’re all quite buoyant during the class but also relieved when it is finished.
Another thing I now do is contact MS sufferers by phone or email; occasionally I also visit them. Some of them contact me via this blog - the one I spoke with today is the lovely mother of two, who is worried with her diagnosis and takes a lot from our chats as well as giving me the strength to carry on living the life I try to lead, writing this blog and being positive. I’m in a position to be able to explain what MS does to the body and to help her understand what not do when trying to live with this illness; we’ve also become good friends and talk for ages when we hook up. I actually take a lot from the chats I have with other sufferers and from writing this blog and as time goes by I look for ways to get more readers because I think the more people understand what we go through on a day to day basis can only be a good thing. Who knows, maybe one day I’ll even write a book – it’s something I get asked quite frequently - we will see!
I took a long but well worth drive down Eastbourne to stay with what has become my close mate (SS). This time his old flame was also over from Canada. I have fond memories of the four of us, (which includes CS – my ex and the blog editor) when we used to spend time together - happy times in Scotland roaming the Glens and visits to one another’s homes for Christmas, Boxing Day, birthdays and just to see each other - happy memories indeed. Anyway while I was there this last time we went for a meal and visited the best Ice Cream parlour in Eastbourne called Fusciardis, which is owned by friends of SS and actually have become friends of mine too and it’s always a laugh when we go there. The weekend was great fun and went too quickly. I’m planning to visit again at the end of next month. I’m always made to feel so welcome which makes it hard to leave - even the dogs are sad to see me go! On my return home my sister had popped in again, tidied up and left a beef casserole in the slow cooker. She’s such a star. When I opened the fridge I was delighted to see a sight that makes me go weak at the knees – a large slice of Banofee Pie that my ex had left, knowing that Banofee is my favourite. I have a quick story about Banofee Pie and my ex; one day we’d gone to a local craft centre and ended up in the café where there was a huge array of cakes on display and I asked her what she fancied. My gaze went straight to the large Banofee while she, (being adventurous) picked something else. While I was paying she took the tray to a table and when I turned around, to my horror I spotted that the nose of my pie was no longer there and she smiling with delight. My love for this lady was great and I know murder is a crime and I had no gun but if I had she would’ve taken a bullet because no one takes my Banofee! She thought I over reacted but never did it again and to be fair she makes an amazing pie which she occasionally brings round for me, as she had the day I got back from Eastbourne. All the time I was away, the Neuralgia behaved itself and walking was a lot easier so all in all it was a lucky weekend added to which I had a £30 win on the Lottery, happy days!
I may have mentioned that over at the community centre, as well as the Bingo hall there’s a kitchen where they were offering the opportunity to do a few weeks’ simple cooking classes and I thought why not? On the third session we baked a Forest Fruits crumble which all seemed easy enough except that as my right hand no longer has either the strength or ability to hold fruit to dice with a sharp knife, I let another member of the class to do it for me. Later on when I was home I tasted the finished article and was amazed at how lovely it was!
I was visited by the friends I mentioned who recently got married and I couldn’t attend. Anyway they were going away for eight weeks to catch up with family and dropped in with lunch that she’d prepared before coming. What a lovely time it was - I was really pleased they’d made the effort and it gave me the opportunity to get to know my mate’s new wife. As they were leaving another friend popped in for a cuppa and as we sat chatting about her new house, my ex (CS) also dropped and the three of us sat chatting. When they’d gone I had to go and get cash out as I was taking my old friend LB to meet my brother’s ex-wife (who is a good friend of us both). As it happened the evening was a washout because the third party had forgotten leaving LB and myself sitting in a bar on our own. The drinks were ridiculously expensive - £9 for a glass of wine and a shandy (about $15 to my American friends). I rarely frequent bars as my joints seize up especially in the cold and trying to lift my leg into the car, while looking funny, was in fact an awful event with me grunting and groaning along with the odd rude word thrown in for good measure. I was happy to get back home and put the kettle on - this was the first time in a while where I struggled with the MS and my mobility and I know as it gets colder I have more to come.
At my next session of Physio I was slow, really slow and I had no idea why. I wondered if I’d been doing too much or if I’d eaten the wrong food but seriously I could think of nothing. I know the exercise does me good and the chap I pick up is a super guy who I have a good laugh with; in fact the whole group are decent people. After I’d dropped off the old guy I went to lunch with one of my football buddies. We went to a garden centre which offers cheap pensioner meals - he went to order as I hid out of the way, trying to convince myself that there’s no way I look like a pensioner! (The dribbling and odd breaking of wind I put down to my illness!) It was a healthy dinner followed by a proper old fashioned pudding of Banana’s and Custard, which I hadn’t had in ages and I gulped it down like a kid rushing to leave the table which wasn’t far from the truth as I didn’t want to get found out but walking with a cane and a dodgy right leg I bet people were thinking, “He looks good for an old one”!!! Later that evening I went and visited (AS) and we talked about our illness and the FES that I wear compared to the leg brace she’d been offered. We talked a lot about the restrictions MS brings and I met her boys who were both fascinated by my control of FES and how my foot shot up when pressing a button. They are two lovely, young lads who I’m sure are confused and concerned for their mother. We discussed our insecurities, our anxiety and low self-esteem; looking at her chatting all I see is an attractive female full of charm and determination, whereas she feels, (like me at times) that no one will want her with this condition so she is down and I suppose a little scared of what might be.
I had planned a trip over to Leicester which was a round trip of about 140 miles in the rain but it proved to be a lovely day regardless of the wet and torturous conditions. My first stop was the Marriot hotel for coffee with my friend MS who I mentioned in last month’s blog - we worked together a few years ago in the security market in a company called Sensormatic and then in the Utilities market place at MEB which later became Npower. We reminisced and talked about how life has turned out for us both. She is happy in her world and that makes me happy as she is one of life’s gems. We’re glad that we’ve reconnected and next time we’ll meet for lunch. After leaving her I set off to see my friend who’s on the mend after an operation. He also worked alongside myself and MS who I’d just seen. JS had cooked stew and dumplings and his daughter cooked a lovely apple crumble; for one so young she is a marvel in the kitchen. I stayed a few hours and had a good laugh at the stories we tell - while I’m sure they’re a little exaggerated, they’re so damn funny and we never get tired of telling them! We both care for one another as he has suffered a great deal yet gets on with life and then there is me, slow and doddery; we try and outdo one another as to who is exactly the most disabled when in fact we actually hide the frustrations of the condition we are both in. Humour is a way of masking the harsh realities of life. I headed home to get onto the main road before dark as my mate lives right in the country where the lanes are narrow and the lighting is non-existent so the concentration needed to drive actually wears me out. I made it home in the pouring rain and in fairly good time. I knew after all the driving that the next day would be a slow one and sure enough my Neuralgia was awful, perhaps due to the talking and the tiredness but also I believe the pain comes in waves. It’s like a week or two of calm followed by intense nerve pain shooting through my tongue into my bottom lip.
This month it may appear that I’m on my last legs as I‘ve been in touch and having quality time with friends as though I’m about to pop my clogs. (I’m not by the way) - it’s just that all my meet ups came at the same time and off I went again to meet friends in a new restaurant called EGO. I must say I was very impressed with the quality of food in a quality place; the couple I was with are close friends and I even went to their wedding whilst in the early stages of this illness. I’ve known Paul since we were young and I felt comfortable in their company as they are both understanding of my condition. The evening flew by and I really enjoyed myself. The following day, (and the reason I refused a dessert the previous night) I headed towards London to meet up with yet another close friend; It’ll be no surprise to many of you who know me that I arrived two hours early! I took the chance to have a doze and woke to a message asking if I was there! “Five minutes away” was my answer and to all those who criticise my time keeping I just say ‘the early bird catches the worm!’ We talked for ages as we always do when we meet, and again I count my blessings for having friends like this; she’s a diamond!
Not many people know much about my working life and perhaps this is not the month to briefly cover it (as my ex-CLS will say I’ve already written six pages!) and there are more to come! I haven’t decided yet whether to break this month into two parts as I feel the need to explain …
I started sales in the greeting card industry and also double glazing with Everest – you may remember the advert with that bloke who let go of a feather? Anyway back then, LB was my partner and along with her mother we built up a greeting card business. After that I moved into the security industry and worked for Sensormatic as Country Manager in Ireland and as manager in the UK. I also worked for Secom and ADT which were also in the security market place. This was followed by a brief move into Utilities, starting with MEB (who became Npower) and then Atlantic. I also did some consultantcy selling everything from pre-paid credit cards to workwear and crazy air machines that pumped various smells like coffee, freshly cut grass and other fragrances into garden centres and then I was offered an opportunity where the States beckoned.
American Idle Reduction units that we sold in the States. These supplied temperature controlled air along with power and internet so the truck’s engine could be turned off.
So it was a varied sales career; some might say stressful, others who know me would say successful. I believe I was good at my job and a decent manager. I’m often asked if the stress was a contributor to my condition - my simple answer would be no. Did I recognise symptoms while working? At the time I didn’t but now that I have more understanding of this illness, I think there were many little signs; I was treated for shingles,; I had acupuncture for my spine issues; strange tingling when dropping my chin to my chest; stumbling for no reason. When I talk to friends and colleagues they sometimes jolt my memory about an incident that I can now explain. I worry myself constantly because my tolerance levels were perhaps low and I was inexcusably short with those that I loved but one thing I know for sure is that I could not prevent this illness from happening. It incubates for 5-6 years. I wonder if my diet played a role; I smoked, drank and did the odd bit of weed but I was young, fit and lived life to the full. I travelled all over the world and did so much with the partners I was with. My first relationship in the States was another chapter that was different and meaningful. As I’ve said many times on here, PS was special and because of this MS it put the brakes on our relationship. And even when I look at CLS editing this blog – sometimes I see her smile or hear the odd cussing while nibbling on popcorn or chocolate and I feel sadness – don’t get me wrong, I know she’s safe and to a degree settled, but when we first got together we were special, we laughed, travelled, went to gala balls (with my mate who recently lost a leg) and met great people. I suppose like many of the friends I mention when writing, they’re a great part of my life and now, being stuck with this, I write about the ones who are still around and indeed the new ones who’ve entered my life. Things are different now; slower and I’m restricted but somehow I know I’m getting there. I understand more about who I wanted to be and I recognise that perhaps I valued things which weren’t important. Now as I have little choice, I live on a budget although I still try do a lot; I may not walk mountains but I can scooter along seafronts; I may not command a crowd like I used to but I still retain a personality and yes I may find it hard to let myself love again due to anxiety and lack of self-confidence but I know I’m on top of this MS.
After a much needed relaxing afternoon I took my fellow female sufferer who I’ve spoken about, to the cinema. It was a delightful evening even though the film was a little strange, in a fairy-tale kind of way! We watched it in Imax and my interest was mainly kept due to Angelina Jolie who, in a purely academic sense, also got my attention! The following day was a football day so I made my usual chicken casserole and had a great but restful time ahead of a busy week.
On the Tuesday I went for lunch with a true gentleman. This thoroughly decent chap who is also blessed with a great sense of humour, recently had a stroke and he is the person I pick up on a Thursday for physio. We started off at the park for a cup of tea then went for a carvery and then I finished a really good day with a evening watching football. Earlier that afternoon my Neuralgia had kicked back in with a vengeance and later on had spread into my lips with pain shooting up my face. I suppose the fact that I didn’t wake until 9am suggests I had an undisturbed night but the Neuralgia was with me constantly and so the countdown to January begins when I see the consultant who fixed me before.
Now a serious update; in the mornings I feel really slow and as I stand my legs seem to concertina like they’re giving way. I had a similar experience at physio and the other day while I was cooking, I had to sit down which I’d put down to exhaustion but in the morning after a good sleep I can’t make sense of why my legs just go to jelly. I make my way to the bathroom and I’m aware that my legs seem to want to be somewhere else. I rush to put the pads on so I can move around although I’ve had to increase the amount of power going through which is bearable but painful. At night when the pads are off I go back to sliding around. I must point out that I’m not so much worried as aware of what’s happening. I try to exercise and I write in this blog about how I do try but I recognise the fact that I’m weaker and as I said earlier it was interesting that the Consultant pointed out the progression of this illness. I’m still waiting for the scans and the Neuralgia appointment is booked for January but as for my legs, I have to keep doing what I’m doing – it’s a case of “use it or lose it” in my opinion. My bungalow is user friendly so on that front I have no worry; as the weather gets colder I know I struggle more and getting my leg into the car becomes more difficult but I think about everything - the signal going through my leg being stronger; my balance being awful. MS really is something that differs for all sufferers but for me I will keep moving forward with as much confidence as possible. I know I have something that will take some beating and it’s going to be hard. Unfortunately the Neuralgia decided to give me a couple of heavy weeks and then amazingly it nipped off for a couple of weeks! Sometimes I think MS wouldn’t be so bad if it also did the same - two weeks on then two weeks off! Ok, moan over. As I always say, I try to be honest.
My Birthday morning started with a visit to Physio where they sang Happy Birthday to me (mad lot that they are!) but once again I felt exhausted after the session. Despite this, I had to visit the social centre near home for their monthly gathering - I didn’t stay long as I needed to sleep which is exactly what I did for an hour when I got home before my brother popped in for a coffee to offer his best wishes which was soon followed by a visit from my son who was then flying out to Vegas for an exhibition. What a life - just back from Sweden then straight off to the States! I was so pleased to see him though. I had a generally busy day with loads of cards and gifts and an evening meal with friends at The Navigation - the food and company was great. I often go on about the good friends I have and that night I felt especially blessed. It was a fun, relaxed and memorable night birthday. I was only disappointed that nobody took any pictures which is unusual - clearly eating and drinking were our main focus!!
By the end of the week I needed a quiet weekend and had only planned to watch some football on the TV. On the Friday my friend PH popped down and we had a nice Chinese meal followed by a lemon drizzle cake she’d made. Then I did exactly what I had hoped for - absolutely nothing! It was heaven as I didn’t need to attach the FES to my leg, I didn’t put any hair gel in or wear my contact lenses - and I actually remembered to put the clocks back too! So on reflection I had a decent Birthday, spent quality time with mother and received some thoughtful gifts. The slowness I’ve been suffering has been bearable and I’ve been relatively free of pain throughout the day from Neuralgia, so all good. My ex,CS and her daughter AJ are away at a wedding in Crete they’ve both been on my mind; not so much missing them as thinking about the fun we used to have when we went away. These days it’s an ordeal for me to plan any journey but I feel comfortable here at home and thankfully I have my memories. I mentioned earlier how lovely it would be to have two weeks on and two off with this illness - the simple thought of two weeks where everything we take for granted comes back; walking, memory, ability to hold a lengthy conversation without forgetting what you’re talking about, the ability to enter a room without the fear of tripping, being intimate with someone special without having to think about it … the main reason for writing this bit is simple - everything would be so much better but for now I have to keep working on how life is with MS - slower, restricted, anxious and at times frustratingly awful.