Sep 10 2019
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Emotions

What Is Grief?

I’ve written about the MS Grieving Process in my blog; our health is compromised, our lives change and we need the chance to mourn.

It’s a terrible, horrendous time more often than not, especially as we’re usually fairly young when we’re diagnosed.

I thought I knew how grief felt – because of MS, I had already lost my dad at a very young age to a rapidly evolving form of MS back in the 1970’s and then my partner and my job disappeared when I was diagnosed.

Now I know, I knew nothing about grief

The grief of losing a sibling is beyond anything I have ever experienced.

My brother died two weeks ago and we are heartbroken.

In my head, I race through memories, his quirks and his mannerisms. I can conjure him up in the blink of an eye. I can hear him speak. He was so utterly vibrant, it’s difficult to imagine him inanimate.

We spent 46 years together. And now, he is gone. The realisation that he no longer walks on this earth is bizarre.

Grief is cruel, breathtaking and vicious.

We are all living in a new world now, one in which my brother does not exist. And that blows my mind. His Celebration is two weeks away and he will be buried in a woodland near to where he found true happiness.

I last saw him in July – he’d driven up from Down South and we had a fantastic catch up. He was full of plans for the future, asking lots of questions about starting a blog where he could share everything he had discovered over the years. He had helped so many people through his quest for enlightenment.

I’m in the shock stage. I know he is gone, but am finding it hard to accept.

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Aug 01 2019
10 Comments
The Teenager

Farewell To The Teenager, You’ve Been Amazing

If-I-could-I-would-give-you-the-world

I started this blog back in the Bad Old Dark Days of 2012.

Just diagnosed with MS after long, agonising months of full-blown symptoms, The Teenager was also at the start of High School.

We were yet to face the full force of my eventual legal employment battle, although the bullying I was enduring at work was horrific.

I had to squeeze in my first Alemtuzumab treatment when The Teenager was on holiday with his father, and I had less than 48 hours to recover and appear ‘mum’ before he came home. It wasn’t ideal, but we made it work. Three times in total.

Looking back, we both had to grow up pretty quickly, The Teenager a lot more so than me. I was/am a single divorced parent, shouldering the vast majority of care. He was vulnerable, unsure of his place in the world. The once active parent he was accustomed to was a distant memory as I struggled with ever-worsening mobility.

And that’s the thing – this blog has always been about both of us; MS does not exist in a vacuum – it touches everyone around you. We argued, fell out, sulked, argued some more, but ultimately, we always met somewhere in the middle, after discussion, time and a lot of readjustment. I was adamant that his childhood would be as minimally disturbed as possible. A big ask.

Readers who have followed our story from the beginning will remember the School Uniform Wars, his very short-lived job as a newspaper boy, the endless rugby mud, his tantrums and the moments of blinding self-awareness. Our cottage, our cats and the low ceilings (he’s now well over six foot tall) have all featured, and will hopefully continue to do so.

He came with me to my first march against austerity, although a little embarrassed. He’s been to award ceremonies for our blog in London and visited Amsterdam twice to take part in a hack with MS firmly at it’s centre. He took his Google Maps and aged 15, worked his way around the Dutch city so well that he guided a bunch of mates a couple of years later for a mini-break.

I could go on, but I won’t as he would be modest. He knows he’s amazing and he knows that you guys know it too. We sometimes posted queries, asking for advice and you answered quickly and with a lot of common sense, especially when he was going through a really hard time a couple of years back.

So here we are. August. The Boss’s birthday, then mine, then Christopher’s. It will be odd not to refer to The Teenager. Someone wisely suggested calling him the Ex-Teenager and I quite like that.

On the cusp of 20, the only thing I can do is thank him for being so open to new experiences, so willing to go through difficult times and come out the other end wiser, more confident and a son I am so very, very proud of.

Jun 29 2019
8 Comments
Daily Life

Honestly? MS, Again and Again and Again

Just when I think I’m doing a pretty decent job of faking it with MS, I discover that no matter how hard I try, it will always make its presence known.

When I say ‘faking it’, I don’t mean denying I have this illness, it just means that I try to hide stuff from the people who mean the most to me.

Yesterday, this hit home in an unexpected way; I had been at work and once back home, I put the fan on to cool down the house.

When The Teenager came home, he found me semi-relaxed, reading a book and being blasted by a formidable Arctic chill. So what followed was surprising:

‘You ok?’

‘I’m great! Fab fan! You ok?’

‘God, it’s depressing.’

Hmm, did he mean something had happened when he was out? Or was it the state of the world? Politics? No.

‘I just feel so sad that you have to sit in front of that thing to feel ok. It’s depressing.’

I tried to explain it was all good, I felt fine, I was just dealing with a symptom.

‘Still crap.’

I understand where he’s coming from – he’s had a fair old journey as the child of a single parent with MS which hit right when he started high school. He knows my MS foibles inside-out, but no matter how much he’s witnessed over the years, I’ve never relied on him as I wanted him to blossom and grow despite MS. The same wish I have for myself, I guess.

Of course, he will always have this hanging over him, as I am his main parent. He reads too much on the internet and stores it up until it explodes in fear and anxiety. I will always provide a safe harbour for him to come back to when he needs to.

I guess I am the Great Pretender. I refuse most offers of help, I push myself to the point of exhaustion and in some ways, I gain a lot of satisfaction by doing that and stuff the consequences. Yet within myself, I have somewhat calibrated MS to suit me; I go to work when I’m at my best MS-wise, I catch up on paperwork when I know I can engage my brain, I write randomly, whenever I can and I now accept that when I can’t, I can’t. No matter how frustrating.

When that happens, I’m stuck on the sofa, or in bed. Lying flat in a cool bed sometimes brings more relief than any meds. I realise my life has shrunk, but in a bizarre way it’s also grown. Without MS, I could still be in a dead-end job with a dead-end partner, cycling through life with no real care or direction. Life has been honed down towards what is most important, and that’s been a huge learning curve. I’ve discarded all thoughts of what I should be doing, could be doing, ought to be doing. I now choose.

So yes, MS happened. It’s not the best, it never will be, but I will try for as long as I can to continue to be the best parent I can, above everything. If I could only reassure The Teenager more, I would be happy forever.

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Jun 15 2019
4 Comments
Emotions

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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Jun 02 2019
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Symptoms and Treatment

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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