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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Less Can Sometimes Mean A Whole Lot More

I lived with a millionaire for four years.

I know, weird, huh?

Shortly before that, I was a cash-strapped au-pair in Austria. On pay-day (£35 a week), I schlepped to the supermarket on the main square and bought a single vanilla yoghurt.

It was the most delicious treat in the world and made the endless toddler-wrangling of the previous seven days all the more worthwhile.

When I was living with my new partner, I went to the same supermarket and bought five and ate them all in one go.

They were awful. The taste had gone. When I could have as many as I wanted, I didn’t want them and that unique taste which made them so irresistible had died.

Fast-forward a few years and I’ve pretty much been cash-strapped for the last two decades. Unexpected bills, a brutal divorce, a rapidly-growing child, school trips and all the other weird and wonderful paraphernalia of bringing up a child without passing on the money worries to him took its toll. But we got through it, trimming bits here and there, never making him feel he was different from his friends.

The Teenager would often come home from school and find me giving a new lick of paint to my most recent Gumtree find, or extolling the virtues of an empty pot of earth, which eventually grew into a chestnut tree. Until he went to high school, a lot of his clothes came from charity shops, as did most of his books. Despite the roller-coaster of financial ups and downs, we always just about managed to get through.

Then MS hit and the reality of losing my job and taking on alternative work at a much-reduced wage was tricky. I realised I was never going to earn a decent income, so I ploughed this anxiety into studying instead and it’s been the making of me.

There’s nothing more heartbreaking than your teenager asking you if we were ‘poor’.

We weren’t. Poverty is relative. He always had what he needed, perhaps second-hand, but he had it nonetheless. Technically we were disadvantaged and according to statistics, living close to the poverty line, but he did not need to grow up with that stigma.

Now The Teenager is forging his own life at University, I can fully appreciate the fantastic house we have created – our plant pots may come from a skip, but they produce a wondrous ambience. Our garden table and chairs are from Gumtree and were nothing a quick wash didn’t solve. Most of our furniture is second-hand, but lovingly-chosen and restored, the rest is donated.

Living with less – financially and health-wise – really made me wake up and appreciate every single thing I have. I’m not denying it was difficult but when I welcome The Teenager back home on vacation, I feel proud that we have made such a cosy and warm environment. The love and care that has been put into our house speaks volumes and I always want him to feel he has a safe space to come home to.

Looking back on my ‘Five Yoghurt Scenario’, it really did teach me many valuable lessons – you can’t take it with you, love is priceless and be careful what you wish for.

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When Is A Teenager Not A Teenager?

I think it’s when they ask you, in all seriousness, for a spare dish to cook lasagne in (from scratch) to take back to Uni after the Easter holiday .

Or when they finally learn the point of coat-hangers, and how to work the vacuum. They even make their bed, this strange, unfamiliar breed.

The Teenager is twenty this year. It hasn’t sunk in. I’m of course nowhere near old enough to have a child of that age.

It’s been a mixed joy to have him back for the Easter break. My heart lifts when he remembers to lock the front door, then sinks when I come down to a kitchen full of cereal bowls and coffee stains in the morning. If I’m reading in bed at 9pm, he now knocks my bedroom door instead of crashing through it like he used to, before bouncing on my bed, making the cat fly right off.

He remembers to open the bathroom window after a shower and (sometimes) remembers to hang the bath mat back up. He’s airing his bedroom (gasp). Mind you, I did tell him I would hang him outside it from his ankles if he didn’t, as I’ve had it repainted three times. It worked!

In short, he is growing up. He’s understanding real life.

However, there does tend to be some kind of invisible force-field at my front door, which, when he passes through it, he reverts, in some ways, back to a school-age teenager. Take the ‘Actimel Problem’. I buy bunches of them, probiotics, one a day. He takes eight a day. I buy low-carb bread and ham. He eats all the bread and leaves the ham. If he runs out of shampoo, he doesn’t think to replenish from the supply under the sink, he uses my very, very, very treat-worthy products on my shower shelf (we have a shelf each). You see my problem.

Yet in the midst of this transition from Teenager (and we have been through ‘A Lot’) to adult, it’s heartening to see the change in him. He now has a Scandinavian-heritage jawline. He speaks in really grown-up sentences about really important things. We have the most amazing conversations. He is tall, overpowering our tiny cottage with his welcome presence.

When I look back over the last twenty years, I’m stunned that I could have produced such a confidant, happy, well-adjusted human being. It’s astounding in some ways, considering what he’s been through. The abject fear of losing the care of his main parent, his worry for his own MS legacy, given I was a second-generation MS’er. He’s bucked the trend.

After two years of adjusting to a new life in the big, wide world, he is doing just fine. We’ve had our blips, our terrible moments, but thankfully I have been close enough to be there quickly.

I’m always going to be there for him, but for now, I think he’s doing just fine. He’s amazing.

Leave No-one Behind

Some of you may have seen my tweet about my dad yesterday.

It would have been his 76th birthday, but MS took him from us shortly after his 35th, back in 1978.

Of course, MS was vastly different back then – no DMD’s, no MRI’s, no MS nurses and no real understanding of the illness. A severely weakened immune system with no way to stop it meant that people like my dad were susceptible to normally-treatable illnesses.

Thankfully medicine has moved on in leaps and bounds over the following decades and a diagnosis of MS is no longer seen in the same way it once was.

When I was diagnosed in 2012, there was an abundance of medicines, support, online help and a plethora of organisations who reached out and helped me through the Newly-Diagnosed forest.

I count myself as immensely lucky to be living in these times. My medication held back the onslaught of the worst that MS could throw at me, and I was able to see my son through high school and into university. Unthinkable for a lot of people just a few decades earlier.

I admire the drive to cure, and the medicines which are life-altering for so many people. Yet, we must also concentrate funding efforts on living with MS. Many people with MS cannot access treatment or are ineligible for DMD’s. Money must be found to support people, and their families, who fall in to this category.

I know first-hand the utter loneliness and isolation MS can bring. The depression (rates which are a whole lot higher than for the rest of the population), the despair. We need to ensure that every single person with MS, whether they may benefit from the shiny new medicines or not, are supported and cared for.

Families too must be supported. Child-carers should never exist. Partners of people with MS must have access to support. But we know this simply does not happen. Benefit cuts, gruelling re-assessments for our incurable illness, lack of work options, a non-supportive, primarily able-bodied society. These all combine to make life with MS an all too often uphill struggle.

No one should face MS alone, whether it is the person with MS or their child, or their partner or their family member. In amongst the joy of new treatments, we have to reach out and gather everyone who lives with or is affected by MS with us.

My dad was apparently a bit of a cheeky monkey (so that’s where I get it from). Once a keen mountaineer, an industrial chemist, a father of four and a husband, I hope he has left behind a legacy that I can do a little bit to move forward.

As I said in my tweet, I miss him more as each year passes. I will never be able to talk with him, the one person who would understand what MS has brought into my life. He remains ‘back then’.

But I’d like to think he would want to look forward, to a future where no one is left behind with MS.

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