Monthly Archives: December 2013

Dec 12 2013
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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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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
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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
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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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