Dec 10 2013
24 Comments
Emotions

Life Support

HeathNot the best week for a blog that’s supposed to show the lighter side of life with MS.

To cut a long story short, I had to take my mum urgently to A&E early this morning.

She’s chronically ill. It scares me. I may be 40, but I’m not ready to face all this. My mum has been my support system throughout the whole MS story and I feel kind of ….rudderless?

Don’t get me wrong, I don’t rely on my mum for physical help, it’s the mulling/chatting over stuff that has seen me through the last two years. She’s been there every step of the way. It pained her to the very core to see yet another family member become diagnosed with this disease.

She nursed my father through PPMS and was only 28 when he died.

And now I am the one being strong, reassuring and forward planning. It’s not easy. I feel worn out and exhausted. But in a strange sort of way, I have found some kind of strength, from somewhere. My mum needs me.

This post hasn’t been edited. I’m writing as I find. I just wanted to explain what’s happening. I’m not the sort of person who can skip over stuff. I’d love to write about stuff that happened recently that made me laugh – and there’s been plenty. But right now, I’m in adrenalin mode. I know I’ll collapse at some point, just not right now.

I’m waiting for my sister to take me to the hospital. I’m shaking too much to drive.

Wish me luck. I need my mum. I’ve just heard she’s staying in overnight, at the very least. I’m going to hold her hand and tell her I love her. Because I do.

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Dec 09 2013
14 Comments
Emotions

Thinking Of You…

thinking of youWhen I was growing up in Glasgow, my mum had a friend with two kids.

We spent countless sleepovers at their house over the years, the mums in the kitchen talking while we played outside or watched tv.

After moving to Wales when I was 14, contact was patchy. Life moved on and we all grew older as the years flew by.

I often wondered what they were doing, how their lives had turned out.

In August this year, one of them got back in touch, the one I went to nursery with. It felt amazing to have a renewed connection with Glasgow. He teased me about how my accent had changed and sometimes I barely understood what he was saying in his broad Glaswegian accent.

We had long phone conversations, reminiscing, catching up, having a laugh. He became my harshest blog critic and threw himself into researching MS and all that it meant. We planned to meet up when his work was less busy and he had recovered from a planned operation.

Quite suddenly, contact became sporadic and during our last phonecall he told me he’d be out of touch for a few months as he was going away to recuperate after surgery.

This morning, my mum told he she had received a letter from his family. He died in October.

Grief is selfish. I’m seething at the unfairness of it. I’m devastated someone could die so suddenly at the age of 40. I’m angry.

Life is short. I hope he’s looking down on me from wherever he is. If he is, he’ll no doubt still be encouraging me to get out there, make the most of my life. I hope I do.

Dec 07 2013
10 Comments
Symptoms and Treatment

A NICE Setback

AlemtuzumabLast week NICE (The National Institute for Health and Care Excellence) gave their initial verdict on Alemtuzumab (Lemtrada).

They are unconvinced there is enough evidence that it will be ‘cost effective’ for the NHS to offer as a treatment for MS.

What this means is that although it is licensed as a safe and effective medicine for people with MS in the UK (and neurologists can prescribe it), without NICE approval, the NHS is not legally obliged to prescribe it to anyone who could benefit.

On the day I was diagnosed, apart from hearing that I had rapidly-evolving, or highly active MS, all I remember my neurologist saying was that if I had Alemtuzumab, it could potentially halt the disease progression for up to ten years.

At the time, I was having relapse after relapse, each one leaving me weaker than before. I was a mess, physically and mentally. My son was 12 and I feared for both our futures.

And having grown up being aware of my dad’s accelerated MS deterioration and early death from a secondary infection (he was 35), my mind was already made up. I signed up for two infusions, a year apart. I was incredibly fortunate to be in the right place at the right time.

So what’s my verdict? Alemtuzumab has been life-changing. It really did halt my MS in its tracks. I might still have the same symptoms I had before the treatment, but there has been absolutely no progression. No relapses. I still have good days and bad, but I know with certainty that good days will follow the bad.

Before Alemtuzumab, I was never in remission. Life was an endless string of relapses. Since the treatment, I have had the chance to pick up the pieces of my life.

And as for cost-effectiveness, what price a life? Apart from anything else, I now no longer need to contact the MS team on a regular basis. There are no trips to the relapse clinic, no steroids. But most importantly, I can be a real mother again. My son no longer lives in fear and I have the energy (mostly) to be there for him.

(The MS Society will be campaigning for NICE to overturn their decision and a public consultation is open until 9th January 2014)

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Dec 05 2013
10 Comments
Daily Life

And Here’s One I Made Earlier….

starsWho knew crafternoons could be so stressful?

I had a couple of days off work recently, and inspired by countless articles in picture-perfect Christmas magazines, I had amassed a whole pile of crafty bits just perfect for creating a home-made Christmas.

Getting into an arty festive mood, I put some Christmas carols on, brewed some cranberry herbal tea, tied my hair up in a scarf, and set to.

After an exhausting afternoon spent weeping into my glitter, here’s what I learned:

  • Invisible thread is called invisible thread for a reason.
  • Air-drying clay does not dry in 24 hours.
  • The cat likes licking air-drying clay (ew).
  • Metal star-shaped cookie cutters are painful.
  • Potato stamping isn’t half as much fun at 40 as it was at 4.
  • Paper folding is not relaxing.
  • Cutting card with a craft knife is deadly.
  • Too much herbal tea was a mistake.
  • The magazines lied.

I don’t give up that easily, so the next afternoon, I put some hard rock music on, made some mulled wine and wrapped my hair tightly with an elastic band (glue guns and hair don’t mix).

First up, the easy one. Slice some oranges, put in oven at a low heat for four hours (‘a delightful aroma will infuse your home with a wondrous Christmas spirit’).

Next, glue-gun some baubles to a distressed wooden frame, in the shape of a Christmas tree ( a simple, yet charming idea).

Finally, make your own candles (‘a bee-yoootiful gift for friends and family’).

My oranges curled up and died, sending out plumes of evil-smelling, acrid smoke, I became more distressed than my baubles and frame and after boiling up wax pellets for the candles, I realised too late that the wicks I had ordered were too short.

All I have to show for my efforts is a string of clay stars. After all the pummeling, rolling out, cutting out, three days of air-drying and chasing the cat away from them, I was determined not to be beaten.

The next day, I went to Poundland (three fold-out stars for a quid), chucked out all my magazine articles, cursed Kirstie Allsopp and Pinterest and flopped on the sofa to watch ‘Elf’ for the eighth time (with some re-heated mulled wine)….

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Dec 02 2013
12 Comments
My Ramblings

Life Sure Ain’t Like The Movies…

popcornA funny thing happened the other day.

I was lying on the sofa reading a book, plucking Maltesers from a box I’d craftily hidden from The Teenager.

The next thing I knew I had woken with a start, the book (and Maltesers) having crashed to the floor.

This may sound boringly insignificant, but I thought stuff like that only happened in movies for dramatic effect – just like you can see the Eiffel Tower from any window in Paris.

I ranted to the cat after she’d stopped chasing the Maltesers round the floor – how could anyone fall asleep so quickly that they couldn’t put their book down first?

Either explanation is most unpalatable:

a) old age creeping up on me

b) worsening MS fatigue

Mind you, if my life were a movie, there would be a conveniently-placed handsome man who would gently prise the book from my fingers, wrap me in a cashmere blanket and gaze upon my slumbering face before dimming the lights and nestling another log on the open fire.

Furthermore, kindly neighbours would have left a pile of casseroles and lasagnas outside my door during my worst relapses two years ago. They would also have surprised me by putting up my Christmas tree and arranging for an angelic choir to sing carols outside my door, snow falling softly.

On recovery, I would magically spring the money to spend a month somewhere exotic to ‘find myself’. There would be shots of me wandering sadly down golden-sand beaches. Towards the end however, I would be laughing and learning important, life-affirming lessons from the wise natives, arriving back home with a new-found sense of purpose in life.

But life isn’t like the movies. When I woke and found my book and chocolates on the floor, I was cold, I hadn’t started dinner and I found The Teenager hanging off an open fridge door bemoaning the lack of junk food (‘everyone else in school gets to have it, why not me, you meanie? What am I supposed to do with a tangerine?’).

I explained to him what had happened. He was unperturbed (‘mum, you’re, like, old, you know? It’s what old people do, my grandad does it all the time’).

Out of interest, I asked him what he would like to see come true from the movies. He didn’t hesitate – ‘one of those huuuuuuuge American fridges crammed with junk food and my own den in the basement  and……(I stopped listening after five minutes)……

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