Monthly Archives: January 2013

Love Your MS Nurse? Tell The World…

The ‘My Super Nurse’ campaign for 2013 will be starting very soon, leading up to MS Awareness Week in the Spring, and the MS Trust really want to hear from you. The campaign goes live on 7th February, when you can nominate your nurse online.

But you don’t have to wait til then – the MS Trust would like you to write something about how fabulous your MS nurse is or, if you’re camera-happy, record yourself talking about them! It’ll only take a few minutes – just use your digital camera, your phone or your laptop, say something nice and send it to them. Click here – ‘My Super Nurse‘  for more details.

I spoke to a lovely guy at the Trust yesterday, raving on (intelligently, I think/hope) about how much MS nurses mean to me, so if you feel the same way, join in. You may be aware that some MS nurse posts could be under threat, so let’s all gather together and prove to the powers that be just how much they help us out.

I am lucky. I live in a city and have a whole team of MS nurses at my local hospital. Even though I have my own dedicated nurse, I know all the MS nurses and they are quite simply amazing. They remember every detail, every symptom. They care. Passionately.

My journey through the whole system, from first bizarre symptom to diagnosis to treatment has been made so much easier with their support and guidance. I hate the idea of calling nurses ‘angels’, but in this instance I can make an exception. I’m not quite sure where I would be without their calm, caring manner. I have called them in tears, I have left garbled messages on their answer phones and rung them with the weirdest symptoms. They have always been there for me.

So, let’s give something back? Take five minutes, write or record something and send it in. Spread the word, tell your friends too. We need our MS nurses. They are our lifeline.

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Muddy Hell…

The Teenager had a rugby match on Sunday. After the snow thawed, the torrential rain came so we were convinced the match would be cancelled. A pitch inspection was due the day before and after the groundsman had waded through inches of mud, he declared the pitch good to play. Of course.

The Teenager had a lift with the trainer and off he went with his Lucozade and boot bag. Three hours later he was returned, a huge blob of mud standing on the doorstep.  The only un-muddy bit of him was a grubby bandage wound tightly round his wrist, which he held out sadly with a pained expression.

He’d only played for ten minutes (so who knows how much more mud he could have gathered if he’d played full time), as someone had trod on his wrist during a try and he was out for the rest of the game. Anyway, he stripped, I picked up the sodden clothes and chucked them in the machine as he squelched his way to the shower. Within ten minutes, there was a yell:

‘Muuuuuuuuuuuum!’

‘What?’

‘I’m in aaaaagony. But we won, 43-0.’

‘Glad you won! Ok, I’ll bandage it up, don’t worry. Then you can go and do some homework.’

‘Too sore. I’m dying’.

‘Ok, just do it quietly’.

Believe me, I was sympathetic, but this continued in a loop all day. He’d appear in front of me, a wan-faced vision. He’d lie on the sofa, asking for help to pick up the remote, but oddly not needing the same help to play on his iphone.  I made him a hot chocolate with a dollop of Fluff on top and helped him pack his bag.

Monday. I bandaged, unbandaged and bandaged his wrist so many times I lost count. It got in the way of his x-box controller. I got a bigger bandage (ha!) and wrapped that round his wrist instead. I’m not a horrible mum, honestly, but my nerves were stretched.

One sulky Teenager plus one (slight) injury has made for a very unhappy household these last few days. To top it all, after helping him with his school jumper yesterday morning and packing his school bag once more, I offered to bandage his wrist again. ‘Nah, don’t worry, it felt better on Monday, I just enjoyed wearing it, everyone was asking me about it at school……’

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Eye Don’t Believe It…

The dodgy eye saga continues. Yesterday I went to the eye specialist at the hospital after being referred by the neurologist. So far so good. I settled down with a newspaper and waited. And waited. And waited. No mobile phone reception either, grrr.

Then a nurse called me in and squirted my eyes with stinging liquid to dilate my pupils. I joked that a glass of wine would have done the trick just as well, but the sun wasn’t yet over the yardarm. She popped me back to the waiting room with the warning that my vision would be blurry for up to six hours.

After the receptionist had left for lunch, I was still waiting. I picked up my book but couldn’t read it, so played solitaire on the phone for the next hour, squinting at the screen through one eye. Finally, I was called in and my eyes were  squirted again and I was weeping yellow tears. Ewww.

Lots of eyeball to eyeball contact with the doctor, then he went off to consult with someone else. By this time, I’m quite worried. I had seen that he’d drawn two eyeballs on his notes with lots of squiggly lines on one of them. When he came back, he told me the good news was that I didn’t have optic neuritis. Phew. But. Oh, a ‘but’.

He had detected that the retina in one eye had a weakness. He wants to see me again in two weeks and if the weakness is still there, he’ll recommend laser eye surgery. Visions of that scene in ‘Clockwork Orange’ sprang to mind. I clutched my appointment forms and left, telling my mum the news. ‘Oh, they’ll clamp your eye open and inject it before zapping you’, she said. Thanks mum.

Anyway, in my new spirit of positive thinking, I am so, so relieved it’s not optic neuritis or even MS-related and incredibly grateful they’ve picked up on a potential future problem which can be fixed sooner rather than later. How lucky am I? Plus, I’ve just found a whole bag of Bombay Mix in the cupboard. Simple things, eh?

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Well Hello, Fani!

Honeysuckle writes today’s incredibly funny/poignant Guest Blog post, – I think a lot of us will be very, very familiar with the following:

OK, what’s living with MS like?

It took a while before MS was diagnosed.

While the experts pondered, I named what I experienced FANI: Annoying Neurological Impairment. The ‘F’ is an interchangeable adjective, depending on how things are going: usually the first ‘F’ that comes to mind, but not always.

What with the life threatening, terrifying array of intractable symptoms and myriad of drugs on offer, the diagnosis of MS was a relief. Yes really. So the grief bit (you know, disbelief, anger, acceptance…) was largely skipped. It would be a massive overstatement, ok Big Fat Lie, to say that I welcomed MS. But in comparison, it’s not as scary. Not quite. Not yet.

FANI is challenging and underhand, irresponsible and unpredictable but always interesting. FANI has changed my life, on the whole for the better. No I’m not deluded or drugged, I do think this. Why? Because symptoms didn’t start until middle age and I’m still largely independent. That’s made a tremendous difference to my outlook.

That said, FANI’s not exactly a walk in the park. Initially, the early hours’ recurring loop of: You Cannot Be Serious. How Could This Happen? Tears and fears. Juddering snotty sobs. Eventually (I’m talking weeks here) followed by reflection. Fairness isn’t a concept I’ve ever believed in, fortunately. Prayer is a bit late now. Someone said, “Life is randomly cruel and kind”. This, I can live with.

Those indescribable sensations …why is an ice-cold cobbler’s lathe in my leg? Where did that shower of vibrating spikes come from?

That unrecognisable, hesitant, garbled speech. Who is that? Thanks, people for finishing my sentences with the (wrong) word that …just …… won’t… come.

Cramps…especially in my left buttock. Who gets buttock cramps? Could be funny, but it just hurts. There are few ways I’ve found to stretch and bend a buttock. All suggestions gratefully received.

Other stuff like jerky legs, limpy legs, migrating numbness and gnawing pain, frequent falls, pins and needles from face to feet, running (I wish) to the loo, utter exhaustion, daily injections now all part of the routine.

FANI you remain, grudgingly tolerated but less frightening now that I’ve learned to work around you. Not everything, but I’m getting cannier!

Life is good, although things have gradually deteriorated with each relapse. Orange, my future’s a mood-dependent turquoise or crimson, but you’re right, it’s bright. Because…? Well, shit happens and in the grand scheme, things could be much worse and there are many positives that I’ve come to appreciate. Happy to elucidate if invited back!

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Who Wants an Online Book Club?

I’m breaking my usual Silent Sunday rule! We’ve been having some chatter about starting an online book club through my blog.

I’ve had a word with my techie expert (hello Jan!) to see how we can start a page that can be sub-divided into separate books and their comments, so we don’t have thousands of comments about all the books in one long stream.

Jan will do her usual magic and get back to me, so if anyone out there would really like this to go ahead, please comment on this blog post so I have a rough idea of whether it is a good idea to launch ‘Reading Between The Wines’?

Maybe thinking about doing one book a month to stretch our MS-foggy minds? So let me know (and please spread the word!!) and we’ll see where it takes us…..

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