Group hug

I just wanted to post something after the sad news of Carolyn Flack…

Around five years ago I created a twitter account to learn more about my new illness multiple sclerosis and what I learnt very quickly was alot of people genuinely cared about how I was coping with it and wanted to give me moral support.

I was so confused, didn’t know where I would be the following day. I learnt to hide some people’s comments, block others and slowly I found I was genuinely caring about fellow MSers, this was never my intention, but in hindsight it was inevitable. We learn intimate details about each others illness and the affect it has on others too, plus we hear other news, whether it is good or bad. I am truly grateful for twitter, as I am in a better place for it, I know if I ask a question, you will jump to my assistance, give advise or support.

It’s so sad Twitter has a real negative side to it as we all know too well, but our little MS community is amazing, and I am only too happy to say a big thank you.

If you’re struggling, if MS is being a bully, please post it, we’ve got your back.

Stop getting shot

If you’ve seen the film “Lock, stock and two smoking barrels” you’ll know the scene where the baddie says “will everybody stop getting shot”!  That’s how I am feeling right now, there just seems to be so many people getting shot down by MS and I feel like shouting “will everybody stop relapsing”! 

I won’t name names but my 2 favourite people on twitter have both disappeared from  twittrr and without actually knowing why I think the strain of relapsing and the constant battle with MS meant they found it easier to just disapear. MS is hard and I’m sure my fellow MSers will agree that if someone needs help we will be there for them.

So to anyone feeling the strain, just shout and don’t hide. Please.

I’m no superman

It’s amazing what Multiple Sclerosis can do to a person, a neurologist can tell you a lot of things about the affects, but there are many things only we experience.
I hope I am not alone in having that feeling of invincibility at certain points in my life, for example I believed that I was immune to the perils of smoking, so I smoked and smoked and smoked, and God I looked cool. I also wondered if a person could live forever just like the highlander and if so why not me, and this wasn’t just until the age of 6 or something but probably until the last 10 years or so. (I’m 45 by the way). I also chucked what I wanted down my throat (insert Sid James laugh) and ate a lot of garbage and drank an excessive amount of alcohol on a regular basis, as in I’d have a couple of days off the booze sometimes to regenerate my liver, yes I believed that too!
Now for some reason I got bored of smoking and took the scary 1st step of joining the NHS quit smoking club, and 3 years later I still haven’t put a fag in my mouth (Sid James laugh again). 

At this point I had an inkling I might have MS due to a few odd symptoms, so when I confided in a colleague, he reassured me by saying “if I had MS I’d kill myself”. In hindsight and a few internal bad thoughts towards my suicide guardian I wondered if he might have his own issues and maybe not the best person to turn to for moral support.

Invincibility now seems like a distant memory and believe taxes are 1 of the 2 inevitables and I do find myself watching what I eat, drink and not smoke, I surround myself with good vibes and people and plenty of David Bowie chooons. I don’t beat myself about work, avoid shouting at others on the M25 and I have forgiven southern rail, no really I have, no really I forgive you. 

As usual I don’t know how to finish my blog or summarise so I’ll just say what I said last time. 

Piers Morgan is still a @$”#.
PS. If you were wondering who Sid James is.

The social experiment

Just over a year ago I lost someone very close to me and it hit me real hard, harder than I ever thought it would, I had gone

 over the day in my head before, but nothing had prepared me for the waterfall of emotions that hit me that day. Now this wasn’t a family member or a friend, it was a rock star, it was David Bowie.

Bowie had become my hero in 83 when I was 12 years old, Lets dance was at number 1 and the exotic guitar sound and his soulful voice just grabbed me, I discovered an incredible back catalogue of music, a man with a different perspective to anyone else and a little bit weird if I’m honest. None of my school friends really got what I got about Bowie, which I quite enjoyed deep down, he was my passion, my obsession, my icon.

There were many great moments for me, seeing him many times in concert, visiting the V&A exhibition, and not that long ago hearing the long, long, long awaited album “the next day” and being blown away by how good it was, I along with many fans wondered if another tour was on the cards, there were rumours it was about to happen, and I wondered how much a ticket would be, how much could I afford. Sadly the day never came, and we all know what happened next. I visited landmarks in London, listened constantly to his music, the only thing I couldn’t do was listen to his final album “blackstar”. Music is open to interpretation, and to me it was his goodbye, beautifully written, with some heart breaking lyrics to boot.

Bowie had also written a musical which was on it’s way to London, and I had balked at the price, but thanks to father christmas and my wife, I was to see Lazarus. This felt like my chance to say goodbye to my hero. And this is the reason for my blog, every day for the last 3 years I had been an avid user of twitter, I have 3 accounts, 1 for music, football, comedy and social use, 1 account for dodgy sports streams and an account for multiple sclerosis, my “inconvenient” illness. Anyway like many people I found words like Trump, Morgan, Gervais, Hopkins Farage would pop up in my timeline too often even though I had blocked them all and it always left a bad taste in my brain, now I had 2 choices. 1. Ask everybody on twitter to reframe from using the above words or 2. Have a break from twitter, and option 2 seemed the way to go.

So after a week here is what happened. I put Bowie’s final album on, listened intently, played it again and again and again, then I just carried on immersing myself in all kinds of  music, my karma was good, my thoughts were my own, i started reading newspapers again, not having 50 other peoples opinion spinning in my head at the same time. The day of the concert I plugged in my headphones and headed to the big smoke, Bowie in my ears all the way up there, I was so in the zone I was giddy, I met a couple of lovely women whilst queuing and we swapped our stories about our mutual hero, then I chatted to a nice family after taking my seat, the musical came and went too quickly, tears were shed, my goodbye was said internally at the end and I slowly headed for the doors, I needed a drink so I headed straight for the theatre bar, 2 men were already there propping it up dissecting what they had just seen, but for me to just have been there was plenty and my break from 140 character opinions was so refreshing, I decided to keep on walking and head to a different bar and sit with what I had just seen alone.

I  did spend a few minutes in a trance, but then got in a debate with a couple of blokes about why Tottenham won’t win anything this season, but hey that’s my opinion!

What have I learnt about social media? I have thought long and hard about it and have felt a small change during my break but truthfully I’m not exactly sure, but I do know Piers Morgan is a cunt.

Juggling my MS

Back in May I started a new role at work as a site manager, and as such I wanted to impress, so agreed to take a week off after the job was completed in late september. My boss kindly agreed to pay me this week as long as I wouldn’t mind popping in to let tradesmen pick up their snags and then next week I can have a proper break, (unpaid of course).

Now as anyone who has worked in the construction trade knows, the final week of a job is the hardest. This is when the unexpected happens and anybody who might let you down, let’s you down, which is exactly what happened to me.

In that last week, I was doing 12-14 hour days, sorting out loads of problems, arguing with sub contractors, running around the south East of England for materials and certainly not eating as healthily as I would normally like.

The old me would be happy to do work like this, but the MS me knew my lifestyle that week was the perfect cocktail for a relapse, but my alternative was to tell my boss I’m going home early as I’m concerned I might relapse and the job won’t get done on time. As nice as boss as he is, I also know he is a business man 1st and as such needs reliable managers on site who will get the job done, so what did I do? 

I gambled with my health!

Thursday I got to work at 6am, finished at 9pm, back again at 6am to meet the cleaners, did another 12 hour shift, getting stressed when my boss was snagging the job with me.

Anyway, the good news is the job got done and my body let me get away with it this time, but it’s a dangerous game I played and I certainly don’t want to do it again.

Is there anyone out there who has had a similar experience, or who has found a practical solution to the  work and MS juggling act?

Look at my invisible illness

December 31st 2014 I woke for the 1st time knowing I had MS, the following day and the 1st of 2015 I woke knowing I had MS and every day since it has been the same and it will be until someone discovers the magic pill we all crave.

And this blog isn’t about me expecting everyone I know to think about my illness 24 hours a day, that would be exceptionally selfish of me and unrealistic too, but my pain is always there, as is my fatigue and many other symptoms too, but  nobody can see this because all these symptoms are neurological and therefore invisible and to be honest if I hadn’t seen the lesions in my brain maybe I would still question my own illness too! 
But here I am 20 months into my MS life and I’ve worked out that outside of my house I get asked about my MS less than once a week by anyone, friend or family, which now that I think about it…..meehh.

I guess until I get a walking stick, foot drop, fall over I will always have a truly invisible illness and I will be seen as such.

Lucky me

Migraines, numb hands, muscle spasms, blindness, incontinence, muscle weakness, depression, the MS hug. These are some of the symptoms associated with MS which I haven’t got, and this is why I sometimes feel guilty on social media talking about my symptoms. What it is, is MS has never stopped me doing what i want, working, exercising, socialising (drinking) so why does MS weigh heavy with me still? 

Well it dawned on me recently that when I wake up and my first thought of my day is-ooh numb toes, quickly followed by-oh yeah I’ve got MS, and I get reminders like that every hour of my waking life, but the thing is I see what other MSers are coping with and I decide to keep mum about my symptoms…. I’m tired compared to, you fell and split your head open and ended up in A&E, well poor old me, didums!

So when somebody says they admire me with how I cope with MS, I will graciously smile and quietly raise a glass of socialising to those with the  symptoms I have avoided.


Meet my MS

This is my 1st post on here, and want to tell my story.

I’m John, 44, live in the UK, married no kids and work in London mostly. 

Nothing annoys me more in life than rude, self absorbed people (says me writing a blog about me), but I’m sure I’m not the only one. 

But the main reason I’m writing this blog is because around 18 months ago I got diagnosed with MS, the day before new years eve. HAPPY NEW YEAR! and although I already had my suspicions, it was still a surprise and telling friends and family was like my “coming out”. Telling people to sit down I have something to tell you was very surreal. I think deep down I knew who my support network was and I was prettu much right.

In 18 months I have had 2 rounds of lemtrada treatment and 1 relapse which is unusual with this type of treatment, but I was the chosen one.

I’m generally positive about my future, I’m still fit and able and keep myself 

active, I know I am lucky to be this way and grateful I got MS now and not 20 years ago when the medical world were still looking for ways to help us MSers. 

 I will blog when I can or when I can be arsed. But for now take care. 🙂