Tag Archives: Alemtuzumab

It Takes A Village …

MS is hard enough on your own body and soul, but witnessing your child coming to terms with it in a parent is heart-wrenching.

Up until he entered High School, me and The Teenager did a whole lot of things together; I was forever picking up leaflets, magazines, nabbing numbers and ideas from flyers.

We fought dinosaurs, made shields in a castle and painted pottery.

I sewed badges on swim bags, then faithfully unpicked and re-sewed them on to new bags. I bought uniforms, day trips and packed the lunches.

I stood at the rugby sidelines weekend after weekend, freezing cold, following him to tournaments miles away, in the rain, without ever mastering the rules of the game. I picked him up after injuries and faced the long journey home, but with a medal or mini-cup clasped in his hands as he fell asleep in the back seat.

I’m so glad I had that time as everything was set to change.

Just as he put on his brand-new High School uniform, MS hit. His once-active parent was more often than not going through relapse after relapse.

We factored in three Alemtuzumab treatments to coincide with his summer holidays – after coming home with no immune system, I had less than two days each time to be back to ‘normal’ after he spent time with his father.

It takes at least a month to recover an immune system.

The Teenager saw a lot and he didn’t like it – the enforced sleep, the early bedtimes of his main parent, when I should have been the one getting him to sleep.

The utter fatigue and lack of immune system floored me. Luckily, kind parents filled in a lot of gaps, taking him to rugby, standing in on Parent’s Evening, inviting him along to sun-drenched trips to the beach.

But I cried; it should have been me. Yet I was so tired, I couldn’t get my head around it. Instead, I tried to ‘stay present’. If I could not move from the sofa, I would at least try to remember everything that was going on.

And now we have The Teenager at University, having the absolute time of his life.

It’s not just thanks to me, it’s thanks to friends and family, everyone who has ever followed him on my blog, or who has met him in real life and chatted with him like old friends, and to everyone who has ever made him feel that he is not alone.

Significant people may be absent from his life, but he knows that he has a whole support network to call upon.

Watching him at an MS filming session last weekend, I was stunned to hear him speak so coherently and poignantly about his experiences and as soon as I can, I will share it with you.

In 2012, all I asked for was to be well enough to see my son off to University. I firmly believe that thanks to everyone here, he made it.

I certainly didn’t do it on my own.

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The Best Worst Day of My Life

Six years ago on Friday 25th May, it’ll be my six year MS-versary.

Six!

It feels like yesterday. I vividly remember parking up a whole hour early, my car facing the huge hospital before me.

For some bizarre reason, I tried out a new lip-gloss as I waited, a freebie from a magazine I was probably too old for, my nerves shredded.

After an hour, I locked the car and made my way to the clinic where I flicked through a battered Argos catalogue. I was called through and in less than ten minutes I was diagnosed with a highly-active form of MS and offered two different treatments.

I left, dazed, spaced-out, stumbling, a sign of things to come. I stuffed the leaflets into my bag, sat in the car and exhaled, catching sight of that awful lip-gloss in the mirror. It truly was dreadful,  but at that point, I could’ve painted a clown face on and not worried about it.

No one wants to be diagnosed with MS, but after 10 months of endless relapses, I just needed an answer, and with that, access to vital treatment. In the interim, I was spinning around in a frightening world of anxiety and fear. My health was declining rapidly, I was confused and I was losing control of my life; partner left, sacked from work. Cat stuck by me.

In the car, I smiled. I would be treated. The medicine, no matter how brutal (and it was pretty harsh), would slow this all down. Give me some breathing space, allow me the energy to get The Teenager through High School, that he’d just started. The timing wasn’t great.

Six years on and three courses of Alemtuzumab treatment later – one more course than the usual two, thanks to a particularly active bunch of lesions – we’re still here and still doing well (or ‘calm‘, as The Teenager would say).

He’s wrapping up his first year at University and I’m doing … ok. Ish. It’s been an unimaginably steep learning curve, adapting to a life I’d imagined would be a couple of decades in the future. Slowing down, readjusting.

I sleep a lot and have the whole routine down to a tee – blanket, earplugs, zonk. I’m gone. I can quite literally say, I could sleep anywhere, anytime. And that’s before 8 hours at night.

I trip a lot. I fall over a lot. My hands are wonky and my feet don’t listen to me. And as for the nerve pain; that’s a whole different matter.

Six years on, I’m in a perpetual cycle of adapting, albeit on a downward path. Yet the more I go downwards, the more my mind struggles to stay afloat.

I push myself, then have a little nap.

I could count out my post-MS life in naps. But I would far rather count it out in successes. We’re still here, and we’re here for the long-term.

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Thanks For The Reminder, DWP

reminderI saw my lovely neurologist last Friday for my yearly review and to check how I was after my last Alemtuzumab treatment.

I was feeling fairly well that day, having taken the previous day off work as I had an early appointment. Just as you do, when you have MS? We learn to build in ways to … manage.

So, we chatted about the appalling time I had had from February until May, and the still-lingering symptoms. We discussed my fatigue, and sadly, the medicine that could have helped enormously has been taken off the market; so I’ll have to keep on dealing with that as best I can.

I got home (in a taxi as I can’t cope with the stress of parking at the hospital), and went back to bed. At 10am. It’s what we do? I cope best by being prepared, factoring in sleep time, down time, can’t do anything time. It feels so normal now, I hardly give it a second thought.

The next day, the DWP letter  ‘inviting’ me to apply for PIP arrived on my doorstep, and everything changed.

When you know you will have to go into excruciating – and at times highly intimate – detail about every single aspect of your illness (and your life), reality smacks you right in the face.

I gloss over many of my symptoms, maybe laugh them off. They’re part of me now and I cope as best I can, and a lot of the time not very well. But I’m still here. Writing everything down is a depressing exercise in negative thinking and now I can’t help but play a running commentary in my mind.

Take yesterday: I called in sick to work. I simply could not cope with the stress of these forms. I was in a pretty bad way and shut out all contact bar this blog (and of course The Teenager, natch). I shut down and shuffled from my bed to the sofa and back again.

This morning, the commentary kicked in as soon as I woke up. Balance, dodgy hands, balance again, dropped stuff. Tripped over the cat, the rug. Attempted and abandoned a shopping list. This is my life now. But to have to catalogue and write down every single thing is horrendous. It’s now glaringly obvious to me just how much life has changed in the last six years.

My life is very, very small now. As a former proud globetrotter, for my horizons to have shrunk to my house and the passenger seat in the Boss’s van is depressing at the best of times. My life is extremely limited but I try to appreciate the beauty in simple things.

Not now. My living room window, through which I view life going on outside of my own experiences is now a window in a jail cell. My house, my safe haven, is now unsafe and at risk.

I thought I was doing the right thing, maintaining a positive attitude after two years of deep depression, still working (albeit with someone who accepts it’s completely normal for me to nod off mid-conversation). This all feels blown to pieces. Do they want me to give up? Call in Social Services? Admit I can’t cope?

Because, it’s beginning to look a lot like that.

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Expert By Experience

speechI’m ever so slightly nervous.

I’ve been invited to speak at a neurological conference, about my experience of MS treatment: in my case, Lemtrada.

I’m nervous on two counts:

  • I’m not a hugely experienced public speaker
  • It’s taking place just outside Budapest, Hungary (and I’m going in two days, eeeek).

However, I am going and I will do my absolute best – it’s a topic I’m passionate about and if that means conquering my MS-travel-related-anxieties, then so be it.

I’ve written (and re-drafted) my speech and I think it comes from the heart. In it, I discuss my decision-making process in choosing the treatment I had and the benefits of it. And also the downsides.

It it empowering to have a voice and to discuss in public the importance of choice. Reflecting back over the last couple of decades of my life, my voice was somewhat quashed; whether through experiences or through people I allowed into my life, with all their notions about how I should act, what I couldn’t say. It’s kind of poetic irony that my first relapse affected my speech.

So MS may have taken away my speech with one hand but it gave me back an attitude – a desire to create change – with the other. Blogging has been a huge part of this – from meek beginnings, where I hid my identity for fear of ridicule or prejudicing the legal case against employers who sacked me for having MS, to my more strident posts, yet always trying to demonstrate a balance of how life actually is for a small family coping with MS.

However, finding a voice is also about listening to other voices, and the thousands of comments on my posts I’ve received over the years have proved that, over and over again. You guys have sanded off my sharp edges, picked me up when I’ve been down and virtually held my hand through Teenager crises.

And that’s why a large part of my speech is devoted to you, and the power of support. When I took The Teenager to Uni almost two weeks ago, I didn’t feel alone, even as a single parent. I really felt that you guys were there with me, every step of the way.

And it’s also why we are all ‘experts by experience’ – a phrase mentioned to me by a fellow blogger, Patrick. We both agree that the usual, ‘expert patient’ can still make us appear as passive recipients of care, whereas ‘experts by experience’ emboldens us, allowing us to stand up and say, ‘yes, amongst everyone here, the neurologists, the physiotherapists, the researchers, I’ve had the treatment and I am the expert too.’

So, listen to me?

It’s me who went through the lumbar puncture, the MRI’s, the blood tests, the initial steroids to ward off relapses, the actual treatment, administered in a drip. I’ve been completely floored and got back up again. The different tablets for weeks afterwards to ward off infection. The fatigue, the weakness, the all-too-quick-recovery back into work before time.

We’re symbiotic – the health care professionals and us, the patients.

We work together?

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All Clear On The Campath Front

all clearIf you’ve had a relapse, such as my epic one earlier this year, you almost want it to prove itself.

Mind you, that proof would take the form of lesions on the brain, which is definitely not a good thing.

So I was torn when I had my last MRI. Having just re-entered the real world after being locked in an abysmal cycle of worsening symptoms for over five months, I was enjoying my freedom.

The thought of having to factor in another course of Campath in amongst getting The Teenager University-ready was something my brain just couldn’t compute.

On the other hand, if the scan showed up nothing, what on earth was going on? Is this it? Can I expect more of these epic MS smacks-around-the-face? Would this be my life from now on?

Anyway, the excellent news is, my scan is clear, and that is all that matters. No disease progression. No need for further treatment at this stage. My brain is just fine.

After saying, ‘thank you, thank you, OMG, thank you’ over and over again to my MS nurse who imparted this wondrous news, I then asked, ‘erm, so what do I do now?’

Well, nothing. It’s a kind of waiting game. The relapses I’m experiencing are normal for my type of MS. And there you have it, MS in a nutshell. You just don’t know. You’ll never know, from one day to the next, how it’s going to hit you. Every day is a lucky-dip.

Take this week. On Monday, I was awake. Fully awake. No yawns, not much pain, minimal brain fog. Apart from the usual twinges and walking in to walls, I was fine. On Tuesday, the nerves in my legs were on fire. I fell asleep after work and my hands went numb with alarming frequency. I tripped over in the kitchen, scattering chopped rosemary all over the floor (can’t blame the cat this time).

I’m beyond relieved I don’t need treatment this year; every day I wake up and it’s like remembering the glorious news all over again. The absolute relief is immense. Yet the fear hasn’t receded.

But hey, this is life. As The Teenager quoted to me earlier from John Lennon, as we were waiting for him to have his meningitis jab, ‘Everything will be okay in the end. If it’s not okay, it’s not the end’.

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