Dec 27 2013
18 Comments
Daily Life

MS Doesn’t Take A Holiday….

MS grinchWell, the big day has come and gone.

Shame I can’t say the same about MS, which had the bad grace to leave a few extra presents under the tree.

It started so well. We had our company Christmas bash – just me and the boss marooned in a restaurant full of proper office parties (all excruciatingly forced jollity, loud voices and a solitary woman crying in the loos).

We had a glass of wine at my place afterwards, where I amused the boss by holding up the plastic wineglasses my mum bought me for Hallowe’en after I smashed my last one. ‘Spooky ghost or howling skull?’. Awkward.

The next day I had champagne with the family while The Teenager was in London. I took it easy, inwardly congratulating myself but MS had other ideas. The last thing I remember is getting home, feeding the cat, tripping over, hitting my head on the door and knocking myself out. I woke up several hours later with the cat next to me shaking her head sadly.

Then my arms started to go numb at inopportune moments. Normally it’s one or the other, along with constantly buzzing legs and feet. So with two numb arms and dodgy legs, Christmas Day was a trial. We helped to serve Christmas lunch to a roomful of pensioners. Someone thrust a jug of gravy into my hands and motioned for me to go forth and pour. Gripping the jug as tightly as I could, I made my way round.

I did try to explain that gravy washes out of clothes quite easily, just pop a bit of Vanish on first, but they were unimpressed and a good few elderly ladies glared at me as they dabbed ineffectually at their skirts and blouses.

So now we are in that odd period between Christmas and New Year. Numb arms or not, I have still managed to polish off a tub of Quality Street (the pain was worth it). I fall asleep at odd times of the day, I’ve tripped over a stray bauble and am considering installing grab rails in the shower (you really, really don’t want to hear that story).

MS has certainly made Christmas that little bit more interesting. Laugh? Til I cried….

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Dec 19 2013
8 Comments
My Ramblings

MS Christmas Survival Guide

santa asleepChristmas is the one time in the year us peeps with MS can really blend in.

Over the next two weeks, it will be perfectly socially acceptable for me to nod off at odd times of the day, stumble and talk gibberish. Last Christmas, I fell up the stairs, followed by a round of applause.

However, a little forward- planning is still essential, so here is my quick guide to surviving the festive frolics:

  • Internet shopping – it’s still not too late! I have not had to brave any crowds, queue for hours or fight over the last Christmas pudding. Plus, I have a rather handsome postman I have seen so often I’m sure the neighbours think I’m having a clandestine affair (I wish).
  • Sleep – make the most of this time. No need to explain why you’ve dozed off in front of the telly for the third time that day, or fallen asleep face-down in your turkey dinner. People will laugh rather than gasp. They may even take a photo and put it on Twitter. Instant fame guaranteed.
  • Stumbling/tripping – let’s face it, everyone will be doing a lot of this. It’s practically mandatory. Why not have a festive quiz? If you trip, turn to your assembled family and say, ‘aha! Now was that MS or the extra-strong mulled wine?’ Winner gets the last purple Quality Street.
  • Cog fog – this is especially handy during Christmas. When (not if) a family argument starts and you’re asked if Auntie Doreen really did say that terrible thing about Auntie Doris thirty years ago, just put on your most tragic expression and tell Auntie Dot that you’re a hopeless case, you can’t even remember what you had for dinner yesterday.
  • Extra help – if you’re having a bad MS day, waylay a passing small(ish) child and tell them you want to play a game. Little kids love dressing up and pretending, so why not pop an apron on them and tell them you’ll give them two quid if they play at being a maid, like in Downton Abbey. That way you can have a steady stream of Twiglets, refills, magazines and chocolates delivered straight to your sofa. Plus you get extra Brownie points for entertaining a child for seven hours.

So, I wish you all a very merry (hic) Christmas. Hold your heads up high (with a sneaky peek at your feet), go forth and celebrate.

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Dec 17 2013
4 Comments
Emotions

Um, Om?

meditation

After The Week From Hell, which saw my stress levels catapulted into the stratosphere, I thought it was time to chill out, breathe deeply and relax.

A spot of meditation perhaps?

Call me a skeptic however, but both my ‘journeys’ into meditation have been unmitigated disasters.

The first time, I signed up for a class to impress a new partner. Big mistake.

The session was led by a wild-haired woman dressed in a flowing dress and beads, perched on a dais high above, beaming down upon us lesser mortals. A self-styled guru who had changed her name from Brenda to something vaguely spiritual-sounding.

She promised to share with us the mystical training she had received over the last hundred years and travels through several continents (by donkey). I left after three hours and split up with the partner not long after.

A few years later, I tried again, this time when I was living in Norway. At the introduction session I was told I would be given my very own meditation ‘word’ by another guru, a ruddy, wild-haired man dressed in a flowing silk shirt and beads. The word would be whispered to me and I would use it as a focus to help clear my mind. Unfortunately, the word imparted to me in Norwegian sounded very rude in English and I burst out laughing which was not particularly enlightened of me.

Would I be third time lucky? I already take time out each morning to mentally floss my brain, so how would I fare sitting still with a blank mind? Thanks to MS, that’s actually not particularly hard. My brain is frequently blank, tumbleweed blowing past and I sit down an awful lot anyway.

I read up on it, took ten minutes out and sat in a quiet place. My neighbour started drilling next door, the cat yelled for more food and I heard my post being delivered. But that was ok, I was supposed to listen to the noise, my mind would get bored and would naturally move on.

Then it was all about counting my breathing, so if my mind wandered, I could pull it back in and focus again. After ten minutes, I opened my eyes, glared at the cat and asked myself how I felt.

To be honest, not that bad at all. Will I continue the good work? I’ll try anything once three times…

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Dec 15 2013
8 Comments
Blogging

The Ghost of Christmas Past

ghost of christmas past

Mike has written a guest blog post about adjusting to life with progressive MS:

On Christmas eve 2010 I was in hospital for an unrelated illness. I had already been to see my GP about a tingling sensation in my right arm and was waiting for an MRI, so they decided to do it there and then.

Then came the worst Christmas present ever. “You have over 15 scleroses of the myeloma, which indicates you have MS” said the consultant before discharging me to go home for a very uncertain Christmas.

I was 58 years old and had been retired for 3 years. I was driving double-decker buses part time and took part in long distance mountain bike challenges all over the world. Now I drive a mobility scooter with a top speed of 4 mph as I can only walk a few metres, my balance is shot to bits, my life has been completely turned upside down.

That’s the physical side, the mental side is another story. Frustration, fatigue, anger, depression, black holes, lack of confidence, I’ve had them all.

There are many aids available to help with the physical disabilities, mobility scooters, power chairs, stair lifts etc, but the mental side requires a huge amount of self-will , self-management and goal setting just to list a few and this is where I am struggling.

I have a very long-suffering and understanding wife, and Wendy, the MS nurse who is just wonderful. My wife has to put up with my frailties when I fall into the black hole and refuse to talk to her for days and am unable to give any explanation for my behaviour. I get frustrated when I can’t do many of the things I used to do and love – walking the dog, gardening, cycling etc and then become angry, get depressed and the cycle begins all over again.

Over the past few weeks, Wendy and I have been exploring ways of combating these issues and I really do believe with a lot of perseverance and talking to professionals and loved ones, there is light at the end of the tunnel. Dwelling on pre-MS activities and pleasures does not help, but instead looking at what pleasures I can achieve today. Setting realistic targets and reveling in the enjoyment when I achieve them, and always pacing myself to try to minimise the awful effects of fatigue.

Of course, I will never defeat MS, but if I can go some way to combat the pain and misery of that wretched Christmas present of 2010, I am going to give it my best shot.

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Dec 12 2013
10 Comments
Emotions

Says Who?

bubblesWe always read that we live in an increasingly disconnected world, each of us floating along in our own bubble.

I couldn’t disagree more.

I had a pretty traumatic day on Tuesday. I went home alone, tired, shaky, emotional.

But I wasn’t alone. For me, the online community has been a godsend, ready with comforting words and good wishes. Some came from people I already knew, some from people I met through social media, and others from people I have yet to meet, but would very much like to.

Imagine the same scenario just a few years ago. I’d be going home alone, fears swirling through my mind, facing a long evening of torment and worry.

Without wanting to sound too dramatic, the support I had made all the difference. Even yesterday morning as I was waiting for news about my mum, I had lovely messages on my Twitter timeline.

So where am I going with this? Really, just a quick post to say a huge Thank You. You all picked me up and I am beyond grateful.

The good news is that my mum was discharged from hospital last night. My blog has taken a distinctly depressing turn this week, but it’s not a real blog if I’m not honest. In other news, I will be trademarking the Stress Diet (TM). Not to be recommended, but boy, it sure does give results. In celebration, I have bought myself a rather large bar of chocolate.

Every cloud…

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