Well the month of April has started with a lovely, warm, sunny day but since turned wet and miserable. No doubt you’ll all be wondering why I’m talking about the weather and the answer is simple; MS sufferers struggle with weather changes. You might recall me explaining how I have to cover my head when I’m in the sun (in my wonderful Benny Hill hat!) and also how my joints seize up when it’s freezing outside, well in the same way, miserable weather actually slows me down. The difference now is that I understand how to deal with it; I ask Alexa - my little electronic Echo gadget connected to the internet with whom I have arguments and occasionally call awful names - and she informs me of the weather changing for the worse and so I set my alarm an hour earlier allowing for what I know will be a slow start. It may seem crazy but I know it’s a necessity. And now you get to understand a little more as to why I’m always early even though I can no longer rush around like I used to.
My mate who has recently gone through so much actually visited me; I was amazed and pleased as he wheeled himself in and we chatted for over six hours. Fortunately my bungalow is designed for wheelchairs so he got about with ease which was a bonus and even the toilet is higher to accommodate disabilities, so he found it something of a delight as it was much easier! We talked about allsorts like the past when we worked together and the time I lived in the States and the visits he made to see me. In fact it was a trip to Miami when his problems started as he badly burnt his feet on the boardwalk and we probably talked more than we ever have before (and trust me, we can both talk!) but we look at one another and realise how life has changed for both of us. He knows that if none of this had happened, I would still be living in the States and he would probably be running some project abroad but life has put us in a different place and we’ve each had to adapt and make the best of what we have. The cheeky sod bought me a cook book as he reckons that cooking is my weak spot (and always has been) while he has always been pretty handy in the kitchen! No doubt he’ll be checking up on me !!!
I need to point out that generally I try not to go overboard with some of the issues MS presents me with mainly because I started this blog as something that would be enjoyable to read but it’s recently been pointed out that I should explain all these difficulties if it’s a blog about MS - so I’ll share some of these events with you and hope that it doesn’t make for miserable reading. I have consciously aimed for light-hearted while still including some of the upsetting stuff (and I don’t want to scare my readers off by bringing them down!) Also I’m trying to show how somebody with a positive attitude to life is coping the best way possible with a miserable illness. After all, I have no choice so I either make the most of my situation or bemoan my lot forever more.
Anyway one morning recently it was obvious I was having a slow start - putting the pads onto my legs was a nightmare and positioning them correctly was proving to be problematic which in turn was adding to my slowness. Then I stumbled after making a mug of tea which spilt all over my new shoes and flooded the carpet. As you can imagine the attempted clean-up operation added to my exhaustion so the bad start continued. On the plus side, I was able to sit typing this blog because I knew I needed to sit and rest. It was frustrating because I’d planned to do so much but had ended up with no choice than to sit in damp jeans (which was most uncomfortable) because I was inadvertently sitting in warm tea – not having realised that the contents of my mug could go so far! My ribs had also taken another knock as I fell on my desk. Not a pretty story in my daily existence but still, I carried on smiling because sometimes that’s all you can do.
I just have to report the unlikely fact that it bloody snowed in April – crazy! It was a strange day what with the bad weather coupled with a certain amount of worry because I was aware my mate across the pond had undergone tests the day before for a big C scare and I was waiting on his results. I’m happy to report we had a brief Skype chat and apparently all was well; he has become a close friend and deals with things in a similar way to me - he hides a lot and says little but he sounded upbeat so I believed what he was telling me. After that I was glad to get my day back on track and carry on with my plans for afternoon tea and a visit to another friend later in the day.
I started my weekend blowing out the cobwebs with a trip to the local park followed by the obligatory visit to the bookies to place a bet on the Grand National. This was a tradition when I was married and I would take selections from my (then) wife, my son and my stepdaughter. This time it was only me, Norman no-mates. I wasn’t really sad but I think the combination of bad weather and wrong food choices was really slowing me down. The previous night I’d eaten pizza which is a nightmare food choice for me. I should know better because the day after having pizza is often a slow one and on this occasion it certainly proved to be the case, resulting in a necessary restful day.
The following morning I was up early and there was no reason for it which was puzzling since I’d only slept for just over four hours – could it be an age thing maybe?! Who knows but there I was preparing the slow cooker ready for later. No doubt my mate who gave me the cookbook would find this highly amusing as the book continues to languish on the side and I stick with my dependable slow cooker; the simple fact is that I struggle to hold a peeler and find it easy to buy a casserole mix – great solution except this particular morning I couldn’t open the bloody bag. I used to be so strong, lifting heavy weights every day and now I’m defeated by a plastic bag. With scissors to the rescue I then shake out the diced beef along with various herb mixes. Annoyingly, this simple task wears me out but I succeed in switching on the slow cooker for later when my mates will join me for a bite to eat and a football match on the TV. I’d even pushed the boat out and bought lemon meringue! I’m a great host but boy all that standing up to prepare the casserole had done me in and that was when I started to worry about the progression of my illness. My right hand is weaker and there is no strength left in it. I wondered whether not exercising due to my ribs had set me back? Unlikely I know and to be honest I didn’t actually have much choice as the pain in my ribs dictated that both diet and exercise had to take a back seat. I think I learnt to stop snacking (temporarily!) and return to fruit and veg as my Friar Tuck belly had returned which I can’t stand - so roll on the summer and salads - and a return to exercise.
When I’m writing this blog my mind races away with things I want to write – I know I go off at tangents in an attempt to get them down and here we go again! I remember when I was in the States there was a lovely lady who cooked at the restaurant I frequented and she encouraged me to eat vegetables. I was probably 52 when I ate broccoli for the first time but she was such a great cook, beautiful lady and wonderful friend who started me on my journey of sampling different food. Then I started to see the lady I have previously spoken about fondly – the one who has a huge place in my heart - anyway she had zero tolerance with my diet so I began to eat all kinds of green stuff and vegetables. She would leave instructions for me while she was working on how to blend, boil and make great soups, which often looked awful but were healthy. It was almost as if she knew I was ill and when I was diagnosed she bought me a book entitled Wahl’s Protocol about a doctor in Massachusetts who had MS and was wheel chair bound but after following a strict diet she improved her life and walked again. I know I should try to eat the same green things but seriously, living alone it’s easy to avoid the rigors of preparing food and anyway my body sometimes just can’t stand upright for long enough so I resort to pre-prepared food (I try for healthy options which are fresh) but I know if she was here I’d get a boot up the backside. She was such a great motivator and I’m really not good on my own but I am where I am. Wow, this month is full of honesty but it’s a depressing read so let’s see what I can do about it over the next week!
It had begun to feel like there was a football match on every day, it being the end of the English season so there were more televised games which in turn meant my popularity grew because I have them on my TV! To be honest I love the company but I may as well have a “Roger’s Café” sign outside, the amount of food (even desserts) I was supplying and I doubt they’d ever eaten so well!
I began trying a bit of morning exercise again - attempting to squat and use weights very gingerly to tone up. I laugh at the thought of my ill-fitting undies which had become even more ill-fitting and not a pretty sight. I should probably invest in some new pairs given the fact that I have a habit of opening the blinds, preparing my breakfast and taking my medication in clear view through the window - but perhaps the neighbours are quietly excited by the return of the ill-fitting, brightly coloured undies and the vision of this quite heavily overweight nutcase of a resident – you never know! In truth I haven’t managed to do much exercise at all this month because I’m not sure why but I’ve been feeling awful and as much as I try to hide it, I think some sort of relapse is taking place. I’ve had severe headaches lasting almost 24 hours as well as experiencing general slowness and all I seem to do is sit. Luckily I have friends calling in which is refreshing and football gives me plenty of company. The neuralgia in my tongue is sometimes so severe that talking is painful but gesturing to the kettle seems to work as a cup of tea quickly follows! Seriously though, I am determined to get over this.
I’ve had an old mate to visit who moved to Turkey. She’s a good friend - we play Word on Facebook and exchange messages regularly. She was one of the gang when we were growing up and her visit perked me up – and not just because she arrived bearing a selection of cream cakes (yep bang goes the diet again!). I had another female friend who visited, who is also great company but quite vociferous let’s say and I tease her about being loud; I suppose living on my own and having thin walls I’m aware of not being too noisy so I suggested on the next visit we’ll cover her head with a tea towel - I remember when I was a boy we had a budgie called Pip and every night mother covered his cage with a tea towel to keep him quiet and amazingly it worked although I doubt my friend will agree to me throwing a towel over her head!!!
I was expecting the mate who gave me the cook book for dinner and he had high hopes of me pulling some homemade dish together from the book but given everything I’ve already explained, I went to the butchers and bought two lamb hot pots and a load of broccoli instead. I realise it’s taking the easy road but it is what it is. He reckons the next time he comes he wants me to cook scones from scratch. This would be nothing short of a miracle as even without the lack of power in my hand and the fact that my right arm has a mind of its own, it was never something I would have attempted even back in the days before I had MS. I suppose I could recruit help and tell him a white lie ...
www.shift.ms requested a Skype call because they need volunteers to become a ‘buddy’ to new sufferers. I think since my visits to their website coupled with this blog having a decent readership, they were aware of my attitude towards MS. Generally speaking I try to lead my life in an upbeat way and after this call part of me was actually glad to be able to help someone else but I just hope I don’t get too involved - we shall see. This adjustment of attitude towards MS has taken time and I suppose I’ve been happy to distance myself but now I understand more so I’m prepared to give this buddy thing a go.
I took my mother and sister for an outstanding afternoon tea as a Mother’s Day treat at a little Aladdin’s cave near to where I live. It’s called Emporium and inside you will find all sorts of things packed onto shelves from pottery to old toys, garden furniture to clothing and re-conditioned (or upcycled I think it’s called) furniture which is all very interesting and added an extra dimension to the tea.
The following day I stayed in to clean the wet room, again not the prettiest of sights as I take a chair from the kitchen table to sit on while I scrub the floor with bleach, sporting my underpants and t-shirt. I know I constantly live in this attire, not because it suits me so well but because it’s practical. I also re-arranged the framed photographs that hang on the wall, with a little help from my sister, putting up a few more to add to my memories which are so dear to me. I’m pleased with the result and when I glance over I can often lose myself in the moment. Later that afternoon was another football and slow cooker night; good tasty, hearty food shared with a good mate who lives in the Centre over the road. We both love a good game and on this occasion there were two matches so happy days.
Billy Joel is playing in the background, “Always a Woman to Me”, a beautiful song and I’m in a calm, reflective mood. This day has been a funny one starting when I went outside to get the garden cushions and parasol out of the shed; I had a weird feeling as my legs started to feel weak and give up on me and I knew after reading posts on the Shiftms site that it was time to sit and thoroughly read the write up on the drugs available for MS. While I was determined to avoid taking medication, based on the fact that I’d initially felt much better after giving them up twelve months ago, I realised that things had gradually deteriorated and I was getting weaker. After this episode I sat down, rested and read. Later in the day I had a visit from a young lady friend who popped in for a coffee and catchup. She always brightens my day and it was a great hour but while making the coffee I dropped the kettle onto a full cup of hot coffee which went everywhere. This was yet another sign that I needed to look into drug options. While I was frustrated she started clearing up and we resumed our chat in the garden on a lovely sunny afternoon. After she left I pondered my work in America -the frustrations of having a great product in an ideal market place which I thought I’d let go of, but recently opportunities were mentioned which had kept me awake the previous night, making the day overall a mixture of pleasure, pain and pondering “what if” and “if only” - anyway I deal with it by putting on smooth music and writing this blog to clear my mind.
In the run up to Easter I completely forgot that the country comes to a standstill on Good Friday and Easter Sunday! It’s funny really because as a lad it was far worse - everything closed, then I suppose we were only interested in chocolate eggs!!!
On Good Friday there was no bingo so instead I took mother to a Garden Centre because she had something she wanted to return (as women do!) We popped into the restaurant for tea and a toasted tea cake before setting off to see mother’s younger brother, my Uncle Gerald who has always been my favourite. As a youngster I lived with Nan and Uncle Gerald for a while and actually went to school over there, I’m not even sure how long for but I guess it was to do with mother and father issues. My memories of that time are happy ones and I was fascinated not only by his strange ways, getting up at silly hours (around mid-day) but his general way of life. I suppose I was a little in awe of him and he introduced me to the joys of music; we spent many happy hours listening to his smart Sony stereo; Pink Floyd, Jethro Tull and the Moody Blues to name a few. He really was the uncle you loved spending time with and we had a great time.
Later in the day on Good Friday I had a surprise visit from my ex-wife with her daughter who’d just bought a cute, little gold convertible Nissan. To see my step daughter driving such a lovely car actually melted my heart. She is such a beauty. This car she’s named Gloria! maybe a few years old but is in excellent condition. We sat in the back garden and had a great catch up and fell about laughing watching pigeons going at it on my roof and I have to say it was a lovely day - unplanned but absolutely wonderful.
The next morning for some unknown reason I felt great. I had Alexa playing power ballads as I showered singing along to Cher’s “If I Could Turn Back Time” which was quite poignant, followed by Whitesnake and “Here I Go Again” while drying myself and I felt like I was on Stars in their Eyes! When it got to Adele, I stretched my arm out to reach for that note without realising I’d let go of my towel and catching the glorious sight of my naked self and for a long time I felt like my old self. “Everything I Do” by Brian Adams brought me back down to earth along with the tiredness and realisation of what I have but hey, I still had those few moments. I miss being the fool, making people laugh and generally enjoying life but now the mask is on and the day ahead will be dealt with.
I visited the MS nurse and decided on the particular drug I’d decided to take, only to be told I couldn’t as it was too early. I had to drop down to a once a day capsule the side effects of which include thinning of the hair and an upset stomach which is actually nothing too worrying but I really do need this support, so fingers crossed that my body reacts well to it. While there I stressed the urgency to see a physio as my right leg is getting weaker so I’m waiting. Overall it was a great visit and even the bloods taken were not too terrible. At mid-day I had a Skype call which was a kind of interview to see if I was suitable to become an MS Buddy; someone who is there for a newly diagnosed MS sufferer. I know in the early stages when I was first diagnosed I would have welcomed this as the unknown is actually quite scary. You’ll be pleased to know I’ve been accepted and will now be part of the MS shift team which I’m looking forward to it and the opportunity to help others. My MS nurse and her collegue are two lovely ladies who genuinely want the best for me and are great fun. I have super, caring friends including the guy, whose wedding I’m off to next month who is my advisor on this web site and a generally decent, fit guy - I say fit as he completes triathlons and Iron Man events, which is pretty impressive for someone well into their sixties! Both he and his fiancée offered to come and cook for me as they know I’ve been a little slow lately which was very kind.
That’s it for April and looking forward to May …