As November kicked off I decided to take up the Harmonica (mouth organ) again because I was having a quiet spell from the Neuralgia and felt the urge to give it another try - not something many people would appreciate I’m sure but I reckon playing an instrument is a great stress reliever. Anyway the sounds resulting from my sucking and blowing suggested that I was well out of practice so I need to keep practising.
The weather during that first weekend was rough; rainy, windy and bloody fireworks going off all over the place which made me feel sorry for the animals. I might sound like a miserable so-and-so but I’m not really - I think getting older might turn me into one though! I spent the entire weekend doing nothing (which as it turned out was only the first …) My sister had brought me a homemade cottage pie to eat while I stayed in watching TV and the odd game of football - life in the fast lane eh!
Now let me just back up a bit here to my previous life and explain what I used to do in America … My company strived to get a product launched onto the market - which on reflection I think we were a bit premature with, as in the current market there is a much higher demand now for better air quality and the drive to constantly improve emissions. Our product did exactly that a few years ago. Funnily enough a lead has recently come up out of the blue from an old distributor – who know - it may just be a dream and frustratingly I’m 5000 miles away but the thought of getting things moving again is actually quite exciting. Our (catchy) company name was American Idle Reduction and the product, after we redesigned it, was actually very good; all the issues we had at the start were sorted and a unit that was ready for the market was there but unfortunately the market was still a little behind and, as you’re all aware, I got struck down with MS and had to leave America, thereby leaving the business in the capable hands of a lovely guy who was an equal share holder. Some of the tales we have to tell will no doubt be covered on here one day.
Living in America allowed me to visit many states and meet some great people and these are precious memories I hold dear; like driving on Turnpikes, heading into New York, seeing signs like ‘Texas Welcomes You’ and ‘Georgia On Your Mind’ and as always that buzz I got as I passed the Florida State sign and knew I was back home; driving through Tennessee and Virginia in the fall (autumn) was spectacular and the days I spent in Las Vegas left me in awe. I truly accepted and appreciated the size of this wonderful country - you could go from extreme heat to freezing cold just by travelling from one end of the country to the other. All I know is that these memories will never leave me. My English accent certainly opened doors and of course I exaggerated it by using words like ‘Cheerio’ and I’d constantly go on about the right way to make a cup of tea! My colleague found it amusing the way I would flirt outrageously with waitresses and make them blush but it was all harmless banter! My friend TB used to tell everyone my real name was Gus from the Bronx and he cringed at my ability to attract females. Sadly I seem to have lost that knack over here. My forthcoming trip to the States that I mentioned in last month’s blog is now up in the air so it looks like TB may well be travelling over to the UK to see me during July/August, so I’m set for a big adventure! One thing he’d love to see is a Bournemouth football game (soccer to my American friends) so we’ll see what can be arranged if, indeed he plucks up the courage to come!
I’ve previously mentioned that I’m a relative newcomer to Twitter as a social media platform and post the odd thing on there but I’ve noticed as I’ve gone along that there are a few people who either post a lot or who just post things that make you smile and grab your interest. One such lady (who also happens to be incredibly attractive) posts some really great stuff and I’m sure she probably gets the odd crank or pest responding to her stuff which she deals with in her own style. Anyway one of her posts which caught my eye was about how she just wanted to drive and listen to music. I quickly responded stating that while the age gap and taste of music may be an issue, I would be happy to buy her a Happy Meal! (Alright, alright, I know I’m a smooth operator) Surprisingly, she actually replied and we got chatting - I told her about the time I lived in America (where she lives) and the miles I covered over there; I explained how I’d had to come back to the UK due to my illness and gave her the link to my blog. Since then we’ve exchanged messages and I’ve been pleasantly surprised that despite being a real good looker with a following of almost 2000 people, she is one of the sweetest, most caring people I’ve spoken to in a long time. Her life has its own issues but she was completely understanding of my situation and we offered a listening ear to each other if ever needed. The thing is, she not only gave me more reason to carry on with this blog, but also more determination to be there for anyone else who needs someone to talk to. Her kind words actually touched me and made me look at her in a different light - naturally I still appreciate her looks but now I also know how kind and caring she is. I guess you should never make assumptions without getting to know the real person and not jump to conclusions based on appearances. Talking of which … I took my friend from physio to see the film about the actress Judy Garland who led such a sad life, controlled by nasty people and who seemed to constantly be searching for something – I won’t spoil it for anyone who might still go and watch it but anyway we were the only two blokes in there and I’m sure we received a few strange looks!
At this point in the month, health-wise I was feeling good - everything was under control and I’d been feeling great but in the evening (well almost midnight to be precise), I felt lonely and just wanted someone to hold and snuggle up to which may sound daft but it was honestly how I felt and if the lady I’d been chatting to on Twitter had been in reach that is exactly what I would’ve done; two warm hearts in need of a little love.
Waking up the following day is something I’m still trying to come to terms with as it was evident straight away that my limbs were weaker and standing was an issue. Shaving has become difficult as I now have to use my left hand (which for a right handed individual leaves me cut to shreds) and for an hour afterwards I wandered round with bits of tissue dotted all over my face and if the Neuralgia kicks in, forget shaving altogether and then I have no choice but to go for the George Clooney look! The main reason for telling you this is that when I wake up, I’m never sure if I’ve just had a dream but just at the exact moment that I’m waking, I’m complete again - no MS, nothing but the way I was a few years ago, riding my motorbike, running, everything that I used to do pre-MS. What’s that all about? Reading this you’re probably wondering what I’m going on about but for me this is actually quite upsetting; the memories of being normal (I hate using the word normal) - perhaps slower is a better word but it’s not just that – I’m also a lot weaker and unbalanced. Anyway, my dreams recently are all about things that I’m remembering from before, which is strange. Once out of bed and after attaching the pads and FES to my leg, I pull my jeans on and start to move quite freely. I drank the smoothie I’d prepared the night before and that’s how I begin the healthy start to my day. I’ve tried cutting out sugar which means no more biscuits, chocolate or cake. I keep persevering though and I know PS across the pond will read this and be impressed with the improvement to my diet. I know I’m on track as my belt tightened to another hole. Result!
My physio class is not getting any easier – I’d hoped that with time I would begin to feel the benefits and while my trouser belt would suggest I am, on reflection it is more likely down to my smoothies and (almost) complete removal of sweet stuff. After the physio class I foolishly went to the local supermarket and certainly learnt my lesson – ie do not exercise then go shopping straight afterwards when suffering with MS. I basically bought a load of stuff I already have loads as well as boxes of Christmas chocolates (to give away) along with a Thornton’s Chocolate advent calendar - no problems there as the ex (CS) will have that! My point is that I bought a load of rubbish and got home absolutely shattered so it was an unnecessary task. When I got home I put a lamp on as it was getting dark and pop, the bulb blew, so I decided to unscrew one from another lamp to use in the short term but stupidly used my right hand, forgetting I have no strength in it and dropped the bulb which broke - necessitating another journey to buy bulbs! I was shattered, highlighting my limitations living with MS. In all my years on this planet I think getting used to this condition is one of the hardest things I’ve ever had to deal with; the slowness, loss of mobility in my limbs, the weakness - I could go on but just remembering to adjust to life with MS is hard. As I always try to remember though, there are many worse off than me.
My planned journey to see my mate in Leicester had to be cancelled as his sister was very ill. I’d been looking forward to seeing him as it had been a while and although we speak most days, sometimes two or three times, I like to see him with my own eyes so I can check on how he’s really doing and he can’t hide behind jovial phone calls. I’d been hoping to take a photograph of the two of us as he complains I don’t show enough interest in him - the only reason I was going to take a picture was so l could post it on here then you could copy it to stick on your front door to scare off carol singers!
The day arrived for my MRI scan and as usual I got there early, only to be called in at least 20 minutes late (as usual!) Getting prepared for this scan is a bit of a nightmare having to remove my FES unit which makes walking an issue. Anyway I was put into the scanner for the first bout which lasted about 30 minutes before coming out and having a needle put in my arm that pushes coloured liquid into my veins then back in I went for maybe another 40 minutes; luckily I don’t have any problems about going in there - except maybe the fear of breaking wind! I actually fall asleep - amazing I know - but I actually do. Once I’m slid back out, I’m done and go home. The results won’t be back for a few weeks and I tend not to be overly worried as it is what it is but the results will determine what drugs are prescribed for me so I know it’s important. With the MRI done I’m now only waiting for the appointment to see the specialist regarding the Trigeminal Neuralgia.
I finally gave in to the constant nagging from mother (every time she visits) to get some curtains. According to her, curtains will keep me warm and stop nosey neighbours looking in and while I’m not really a fan, I went with my sister and purchased a pole and some curtains to please mother. I just hope once they’re up they’ll look great and I won’t sit here feeling overwhelmed - we will see!
As I’ve explained before, with Progressive MS one day you can feel great and the next day - Wham, it can hit you like a freight train. I was sitting (as I do most years) watching Children in Need on TV, an annual UK charity for children who have all kinds of illnesses from cancer to blindness and tears were running down my cheeks at their struggles. When children die so young and you see the parents, lost and distraught, I realise that my suffering is very little compared with theirs. While I was watching, and in fact for most of that day, I had terrible ear ache - every time I moved my head I had a shooting pain in my ear and then I got a bad head ache. I could only put it down to the recent flu jab I’d had and blamed that but after a disturbed night’s sleep I woke feeling awful. I struggled to get to the bathroom for a shower, leaning on the walls and doors; thank God I have grab rails in the shower. After getting myself ready I went to get my smoothie and sat down feeling absolutely exhausted. The girl I’d arranged to see who has Cerebral Palsy was also feeling slow and we were going to chat about how we were both coping as we have an understanding about one another’s illness. She cancelled which meant I had a quiet day, feeling slow, weak, in pain and to cap it all the Neuralgia returned. Every time my tongue touched my teeth – Boom! a sharp pain shot through my face, so sitting still and being quiet for the day was the only thing I could do – and hope that it would ease off …
Still feeling terrible, the following day I went to see the lady with the two boys who also has MS - she amazes me - mid-thirties and still works with the same strain of MS as I do, however it was noticeable that things are getting harder and the MS is slowing her down. She was due for the next infusion of her drug in the next couple of weeks and I hoped things would then improve a little as Christmas is approaching and with two young boys it will be a strain. We talked about understanding MS and our energy levels – it’s easier for me in as much as I can have a slow day and sit quietly when I’m struggling but for her there is no respite with the boys and work so by the end of the day she is exhausted. I offer her useful advice but in all honesty she needs to look at her life in the New Year and drastically reduce her hours at work. She’s a remarkable lady and still manages to look lovely. Writing this blog I feel I should introduce people who are in my life and she is one, along with the group I do physio with and there are a few characters there who also deal well with MS.
My mate JS called to say he was popping in to see me and needed food. He had a mate with him and they pulled up in a sports car which was pretty awesome and would no doubt get the neighbours talking! I decided we could all get into my car (Boy those two are big guys!) and off we went to a local café where we ordered three breakfasts which were grilled and therefore a little healthier! It was really good to catch up with JS who’d had to cancel the week before so seeing him looking his normal witty self was great; again I didn’t take any pictures but he did scatter tissue all around my place and move cushions about as he knows I have OCD and hate mess. As soon as they’d gone I went round straightening things up and tidying up tissue. He’s a nightmare but a great friend; a complete screwball but an incredible guy.
At this point I was really suffering. The ear ache was very bad and while taking my medication, the water to swallow down my tablets set off my Neuralgia. The pain was excruciating and to add to all this I’d developed a horrible, painful rash on my shoulder. I hoped it might just be the side effect of being rundown but I woke up the following morning feeling awful and low. Although I hate saying this, I was depressed and felt like all I wanted to do was sit and cry. I didn’t understand why these feelings had reared their head as I thought I’d got them under control. I spent the day in shorts, T-shirt and glasses (as opposed to my contact lenses) and didn’t put the FES on my leg so I was dragging myself around - a bad start to the day which I thought could only get better ... As it turned out, the day got worse, the Neuralgia was awful and what I thought was shingles appeared to be spreading. Also, for some unknown reason I was feeling over sensitive and a little emotional. I always try to think things through and find an answer for everything but I couldn’t. This is when it’s hard being alone, constantly niggled by this MS, so any addition to feeling bad just gets too much particularly after what had been a decent period of feeling good. That’s when you start wondering “Why”? I know you might be thinking how sad this is but as always I try to put it into perspective. I know what MS is and what it can do to your body but perhaps I ought to concentrate more on my mind. I’m sure this time of the year also gets to me - a simple thing like buying cards becomes difficult because going out shopping is out of the question. I do all my purchasing online now and Christmas is not what it used to be. I really am low and suffering; I guess there’s more to all this than I realise. I look up at memory corner, as I call it, and remember what I would normally have been doing. For years I was reasonably fit and I’d be out, shopping, visiting places, getting into the festive spirit and certainly not feeling like I do now. Hey ho - tomorrow is another day.
Going back to Twitter - this is a strange thing. That evening when I was feeling so fed up, I was once again cheered up by an interesting female – this time from Canada; she read my blog and struck up a conversation; this lady who’s into classical music was very interesting and intelligent. My English charm and mention of afternoon tea had no impact on her as she’d been in Canterbury and had actually enjoyed afternoon tea! I enjoyed a lengthy chat with her – so much so that I even let the Strictly Results programme fade into the background - the sacrifices I will go to for a lady! But seriously, if used well, Twitter is actually a great tool for meeting and chatting to people all over the world. As a lad I was excited stringing Coca Cola cans together and chatting to my brother who was on the top bunk - and now look how far technology has come - crazy!!
A visit to the local Doctor confirmed I was suffering with Shingles which had given me ear ache and compounded my Neuralgia. This had also affected my throat - and let’s not forget the unsightly rash on my shoulder that had spread up my neck. I asked how long I could expect this to carry on, to which the response was to not scratch and prescribed me Antibiotics; five a day for five days. I suppose the upcoming modelling contract for Speedo trunks will have to be cancelled then! Part of me smiles and I feel thankful for all the years where I was healthy. After feeling down and sorry for myself I got back up as sometimes it’s the only thing you can do and again I try to think of those worse off. The reason I write this blog is to inform you about life with MS but also occasionally to remind us all how lucky we are.
The following day was much the same. CLS kindly made me one of her special omelettes then proceeded to wash all my utensils as they apparently smelt stale! It’s hard for her and the few people who see me like this as they want to do something but can’t because there is nothing they can do and they feel helpless. I spent another evening doing nothing and felt reluctant to go to bed as I was itching. It reminded me of mother telling me, when I was a boy, that wearing boxing gloves was a great way for me to stop doing the things that boys do!! If I’d had some gloves I think I may have worn them to stop me from scratching at my skin. The drugs were making me feel slow but I hoped they’d do the trick; I was getting a sense of how the Elephant Man felt and was sure I’d look a sight the following day.
I had to cancel going to see my son, cancel the Neurological Conditions Panel and cancel physio the next day as I was lifeless. I’d also been told shingles can be contagious, deep joy. With a new day I had more lumps along my neck and chest and decided I would sit and feel sorry for myself. But not for long - that was just not going to happen so my leg patches went on, I dressed myself in jeans and t-shirt and convinced myself that from a distance my George Clooney looks had returned! If you were in a darkened room and squinted I reckon there’s a slight resemblance! I simply had to get on with the day as best I could.
Writing Christmas cards is an issue so while I was stuck inside I decided to attempt writing cards to those closest to me. I struggle with myself as my handwriting - which I used to pride myself on is now almost illegible because holding a pen is difficult and my hand judders with involuntary movements. The unsteadiness makes me swear, but I managed a few and decided to revisit the task when I’m a little calmer. I think sending email cards will be the way forward more and more. For many reasons Christmas no longer holds the same charm as before and one of the main ones is that I can no longer shop and feel the festive atmosphere, but I try my best.
The following evening was also pretty grim; I tried a bowl of chicken soup as the Neuralgia was the worst I’ve ever suffered and even swallowing was agony. Shooting pains in your tongue is not pleasant at all and I deliberately stayed up very late in the hope I would eventually get a decent night’s sleep and maybe some respite from the pain and discomfort – unfortunately there was no chance of that as along with Shingles, every time my tongue touched my teeth a pain would shoot up my face and take my breath away. The next morning I was up early and had to cancel my lunch date with GH who I have never let down before. We’d been due to return to The Four Stones in Clent - a place we’d both enjoyed and we had so much to catch up on so I was gutted at not being able to make it and so another day began without the pads on my legs, sat doing very little. My ex popped in as she does to check in on me but otherwise it was miserable and lonely and when you feel as bad as I did you don’t really want people to see you anyway. Seriously this is not the way I normally lead my life. MS has upset everything; not just me but those around me too. I’d had to cancel seeing my Son and friends, I couldn’t take calls because I couldn’t speak without pain and I just wondered how long do I suffer this; I know not. I attempted a bowl of porridge with kitchen roll at the ready to catch the dribbled bits on my chin - I’m not a good advert for attracting females am I?
There was no let up with the Neuralgia but the Shingles was healing very well. Taking the tablet five times a day was murder as tea or water to swallow them down set the nerves in my tongue off. CLS has been golden, nipping in between work to make scrambled egg or omelette for me which is easier to swallow but like my porridge goes into the left side of my mouth and I dribble a bit but that I suppose is something I am getting used to. My routine has been shattered, I didn’t leave the house for seven days except to take the rubbish out and apart from CLS and my Sister I saw nobody. I know I’m getting better and thank God for Twitter - my Canadian friend has been super company and we chat by texting every day. It’s all so frustrating as talking is the issue and as I often say, I was born to talk!!
I’m ending this month with a poem I read on Twitter by Julie Stevens. You can find more of her work at jumpingjulespoetry.com Her work can be found on most social media sites and explains about living with MS.