Author Archives: stumbling in flats

Public Speaking and Other Horror Stories

I am not, by any stretch of the imagination, a public speaker.

It’s something that has always terrified me.

I trace this back to moving from Scotland to Wales when I was 14, and asked to talk to my English class in a new school about some topic I was passionate about. The girl before me spoke about The Body Shop and smashed it.

I mumbled and stuttered through an excruciating two minutes and swiftly sat back down again, cheeks flaming.

Since that time, I vowed never, ever to speak to an audience again.

Until MS.

Why did MS give me back a voice I lost?

For one, accent doesn’t matter. Second, a slick speaker is all well and good, but sometimes it is just as important to hear from someone like me, an average person , saying it as it is, mumbling and pauses accepted.

During my work in raising awareness about MS, I have been fortunate enough to speak at MS conferences in Hungary, Greece and Denmark. When I say speak, I mean talking with passion to audiences, voice wavering. I always keep in mind that if I can survive a two-hour lumbar puncture by a Doctor who has never done one before on a live patient, I can survive anything (true story)

And that’s the thing about passion – at my last conference, we were talking about Patient Focused Priorities, something I’m, well, passionate about. We had all chatted beforehand, ran through some scenarios, but to be live (it was live-streamed), to be there, at the conference, for that twenty minutes, I wanted to give my all.

It could have gone either way. I blow-dried my hair (taming the unruly curls), I dressed in smart black trousers and a grey top and made my way to the conference room. I was led to a bank of dials and switches and mic’d up (bit embarrassing, muffin top). Then I sat down, heart pounding.

It seemed a good idea weeks before, so we agreed, as I was in Scandinavia, I would explain my background. In Norwegian. A language I used to speak fairly fluently until MS blasted me with a massive relapse of the speech part of my brain, which I’ve been told is quite unusual.

However, me and my wonderful Norwegian host began…

Reader, it was amazing. My Norwegian was awful (to be expected) but our rapport carried us through,

Looking back, I think it is the same for all of the conferences I have spoken at. I’m not coached, tutored or subjected to a round of interviews: I’m invited because I am me, living with MS.

I would like to think that a genuine speech about someone living with MS is more effective than any PowerPoint slideshow.

I may mumble, stumble and fumble, but I get my point across.

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Lemtrada – Fact and Fiction

As a three-time recipient of the MS drug Lemtrada, I was concerned back in April this year when a report came out about it being restricted.

I read into it further and realised my own (possible) courses of this treatment would be secure and I wrote an earlier blog post about this issue.

However, I’m still being contacted by several concerned friends(some of whom have also had Lemtrada) and organisations who referred to the temporary restriction as a ‘ban’. Again, I looked in to this further as the word ‘ban’ was pretty emotive for me, and somewhat frightening.

In short, Lemtrada (also referred to as Alemtuzumab or Campath)  is a mono-clonal antibody which can give remission from MS for years. It’s what my neurologist told me back in 2012, when I was first prescribed it off-license, as my  MS was rapidly-evolving and highly-active.

I jumped (badly, and with a stumble) at the chance as I could see my future health deteriorating with alarming speed. Having a child starting High School when I was diagnosed, it was imperative that I had a swift, sharp shock when it came to MS.

To date, more than 22,000 patients worldwide have had this treatment for MS. Alasdair Coles, who was closely involved with Lemtrada development said, ‘In treating (MS) I use the strongest drug I can, as early as possible, and I like to use (Lemtrada) … first-line, unless the patient doesn’t want to take the risk.’

Well, that’s me. I took the risk and developed Grave’s Disease as a result. I knew I had a one in three chance, but the alternative was far worse. I would rather be fat and MS-happy than thin and on the floor, the way I was heading. Don’t get me wrong, my weight gets me down (lol) but I can cope with it; MS nearly destroyed me back then.

Lemtrada has been temporarily restricted – it’s not a ‘ban’, it’s a ‘label change’. It is still prescribed, even for new patients, and this is in line with the American prescribing guidelines. The review of Lemtrada will be carried out by the Pharmacovigilance Risk Assessment Committee (PRAC) and will deliver recommendations.

I can only relate my story – I was told Lemtrada could hold back MS and for that reason, I took it. I’m lucky I have access to a fantastic neurologist and am aware that not everyone has this option.

I’m only one of the many human faces of Lemtrada and I dearly wish the medical authorities will listen to us when they decide our fate and those of all the people who are being newly-diagnosed every single day.

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A Wrestler in the MS Ring

The last seven days have been interesting, if nothing else.

Each day brought a flare-up of existing MS symptoms; one day blinding fatigue (hit by an anvil), the next Bambi legs.

Then there were the dodgy hands (hello smashed crockery), the stumbling, the teeth-gnashing nerve pain, the upside-down balance issues.

As I normally do when this happens, I retreat home, batten down the hatches and conduct life from my sofa and my bed. It’s taken years of practise and I think I now have it down to a fine art. Even the cat knows what’s expected from her. She has a chair opposite my bed (with a special blanket on it) and keeps a beady eye on me and also dominates the sofa opposite mine (much to The Teenager’s chagrin when he’s home).

MS is a boxing opponent who just won’t give up. They might leave the ring for a little while, to grab an energy drink or something, ready for the next bout, then they’re striding towards you once more, when you’ve barely made it back on your feet.

And the worst thing about this? Every single one of my symptoms are virtually invisible to all but the people closest to me. If I have to explain nerve pain and fatigue one more time, I’ll scream. And if someone says, ‘but you looks so well’, I’m half-tempted to say, ‘yeah, bit fat, got MS’ and see if they shuffle away.

MS is a very lonely illness. Of course, I live alone, but still. It shoves you into the deepest, darkest corners of real life. I had to cancel meeting a friend yesterday and I was devastated. I schlepped around the house, slept three times and listened to life going on outside my window.

So, I went to work today. I know I’m lucky, working with my best friend. He picks me up in the van, coffee ready in the cup-holder. He takes me shopping and on errands. At work, he made me take ‘cool breaks’. We had a laugh and it felt wonderful to be out and about, engaging in real life, despite my legs crawling with pain. For a short while, MS didn’t matter.

I get knocked down and I get back up again as the song goes and MS truly feels like that. Each day is shaped around MS and I could let it dominate or I can work with it to make it work for me. It’s amazing what you can get done from a sofa before nodding off to sleep yet again.

There may come a time when the balance tips, I know that. But until then, I’ll take the blows and get back up again.

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Has MS Changed Me? Hell, yeah …

I’ve been thinking.

MS has almost taken me back to my wild teenage years, when absolutely nothing held any fear.

Take a train to Austria after your last A level? Yup.

I travelled the world, got into numerous scrapes, came out alive and picked myself up. Crossing a river in The Gambia in a sinking ship springs to mind.

Then, when I was 26, I had The Teenager and life naturally took on a more sedate pace.

Which continued for the next 18 odd years.

I settled into a nursery/school/rugby/the many other activities routine. I was in a job I loved, working with a wonderful person but it had no future. However, it was close to his nursery and school and that was all that mattered.

Then, MS. An explosion, obliterating life as we both knew it. I remember a conversation with The Teenager, as he stood on the threshold of High School, when we discussed how we should approach the MS imposter. By this time, I had had my first treatment of Lemtrada and was back on my feet, just.

We decided we should throw ourselves into campaigning and so it was that we attended our first march, against austerity and benefit cuts (‘I’m Not a Scrounger, I Have MS’ placard) back in 2011. The Teenager came with me and was delighted to hear the speakers swearing. He then came with me to awards ceremonies, meetings and discussions. He was interviewed, photographed and involved in all the media projects.

I had changed jobs through this time and was subsequently sacked from it after my diagnosis. The Teenager went through the whole legal case with me, alongside navigating the high school system. But we came back stronger. I got a new job, enrolled in a Master’s and he knuckled down to studying.

Life wasn’t at all easy – I had to sleep a lot, which I think is frightening for an only child with one main parent. I know it still scares him.

Every single event or speech or article I take part in is a blast into the unknown. Public speaking terrifies me. Seriously. Yet I keep putting myself out there and campaigning for disabled rights and acceptance. Most recently, I have been shortlisted for a Wales Online Digital Award and am due to speak live at a conference in Copenhagen at the end of the month. Gulp.

So has MS made me more brave? Erm, yes. What is the worst that can happen when the worst has already happened? I’m still terrified of public speaking, I would like more Photoshopping, a rapid weight-loss solution and a Master Class in public speaking.

However, when I am on stage, I am … me.

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Nothing About Us, Without Us?

The news came through a few weeks ago that the medicine I chose to tame my multiple sclerosis (MS) had been restricted by the European Medicine Agency.

Obviously, having had three courses of Lemtrada, I was concerned.

I read further.

22,000 of us have had the treatment. 39 strokes have been reported, often within hours of treatment. There are many other statistics I can’t make head nor tale of, as they are written up in medical lingo. In my experience, I had a horrendous flood of weakness after the first administration, then nothing. Just the usual tedium of being hooked up to a bag on a stick for several hours.

I was contacted by various people, worried that I hadn’t heard the news and I would drop dead fairly soon.

I didn’t die, but discovered that the overall risk of stroke after (Lemtrada) may not be statistically greater than stroke in the untreated multiple sclerosis population.’ When I decided to take Lemtrada, I knew the risk of Grave’s disease – which I had – leaving endocrinologists flummoxed as Lemtrada-induced Grave’s was a whole new ‘illness’.

So, I packed on weight. Gah. But, in the grand scheme of things, I would rather be fat (which I am) and happy than skinny and immobile.  I took the risk and it didn’t work out. It happens.

The temporary guidance advises that Lemtrada is only used on new patients after they have previously tried two other Disease Modifying Therapies. That just doesn’t happen with Lemtrada – it is a first line defence, for those of us who experience  a rapidly-cycling form of the illness. By the time a newly-diagnosed person has gone through two other treatments, they are no doubt not eligible for Lemtrada.

Within this whole confusing scenario, I wish the EMA had reached out and asked some us how Lemtrada had worked. But apparently their guidelines have not mentioned patient input.

So 22,000 of us have no voice.

This is completely unacceptable. Any form of medical restriction must involve the patients who have already taken the drug? Surely this is the first and foremost consideration?

It’s an oft-used phrase, ‘Nothing About Us, Without Us’,but when it comes to halting MS, we should be consulted.

Why wouldn’t we be?

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