Tag Archives: Lemtrada

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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Perception Is Everything …

wombleHaving worked the entire bank holiday weekend, I’m shattered and filled to the brim with bricks/wood/steel beam measurements.

Not the best position with an MS-brain like mine.

During this relapse, The Boss has been picking me up and dropping me off for work as my legs go a bit wonky and my head is somewhere in the clouds.

Lovely. Not only do I save petrol, I also cleverly factor in Gumtree pick-ups, such as yesterday;

‘Um. Boss. Y’know years ago we did that job in that street opposite that car place?’

‘Oh, yeah? That was ages ago?’

‘Yeah, should we drive past? See if they did that thing we mentioned?’

He finally twigs. I come clean.

‘S’was on Gumtree. Same road. Free plant pots. Silly not to really?’

And so it was, I picked up loads of free plant pots  on my way home yesterday. Excellent. I had used my powers of innate perception.

I hate my routine at the moment – work, home, work, home. With a relapse, there’s no space left for anything remotely meaningful.

Except random free offers of plant pots. I spent a happy half hour scooping earth I’d bought two years ago into a free pot. There was a worm in every handful. But I was kind of happy.

Perception. I could look at it one way:

Tragic divorced single parent with an incurable neurological illness, nudging late early 40’s.

Or:

Exuberant, vibrant, independent 43 year old parent of an awesome Teenager, with an abundance of spirit … and MS’.

I mean me; I’m talking about the same person.

And that’s why I’m trying to re-frame my life – if I see myself one way, people react. The other way, people react. So, maybe I should shove all my sad-person preconceptions to one side and big myself up for once;

‘Fat MS womble, taking on the world?’

I’m embracing the F-Word at long last – Campath-Induced Grave’s Disease be damned …

p.s. this post derives from a random conversation with The Boss about the remote possibility of me venturing in to the dating world again …

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Slapped Around The Face With A Prawn Sandwich …

prawnI saw my wonderful MS nurse today.

We discussed my relapse (which started 18th February – I write everything down; dodgy MS memory). It’s still rumbling along and the symptoms include but are not limited to:

  • Out-of-proportion MS fatigue
  • Walking round in circles
  • Falling over
  • Numbness, tingling, massive increase in nerve pain
  • Problems with hands
  • Problems with walking
  • Slurred speech

And so on. It was incredibly therapeutic to go through them all, linking the dots, feeling that what I’m in the middle of experiencing is … normal.

If I was asked to describe how this particular relapse feels, I would say it feels exactly like being slapped around the face with a prawn sandwich. Repeatedly. You kind of know what to expect at first, and if it was a posh sandwich, the bread would be firm and the little embedded seeds would annoy you. Then the spinach leaves would fall out and finally the spiny bits of the prawns would really annoy you.

It’s a subtle build up. Before you know it, you’re deep into a relapse.

I was asked how I felt, emotionally.

‘Trapped. Isolated’.

My home is my absolute focal point right now and I spend an inordinate amount of time making it look nice. I’ve constructed an Easter tree from abandoned branches, picked up leaves from my back garden (sitting on the ground, gathering them in a pile and shuffling to the next circle) and ordered everything I need online, from food to new underwear for The Teenager.

I go to work, come home, recover, sleep, go to work, come home, recover, sleep.

It’s incredibly boring. To liven things up, I Plasti-Kote’d a plant pot with black spray and spent a good few hours arranging my Sharpies in it. I have counted how many loo rolls we have left and divided it by The Teenager. I changed the bath mat. It’s that exciting.

My MS nurse asked why I hadn’t come in to the clinic at the start of the relapse and I proudly told her I was now an experienced person with MS and sort of knew what to expect. I didn’t fancy the all-night-party element of steroids and felt I could Go It Alone.

I was wrong. I should have called. The sheer relief to talk to someone who knows. I feel significantly less alone this evening and that means the world to me. It won’t change the barrage of symptoms but I know that somewhere I am cared for.

During the worst of the relapse, The Boss hooked me up to his Netflix account and I can confirm I have now seen every single episode of each of the four series of ‘Orange Is The New Black’. That’s 52 hours of telly.

I’m being sent for another MRI (yay, claustrophobia here we come), and we’ll take it from there.

To be frank, I’m a tad concerned …

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How Not To Convalesce

illnessTime off to recover after Campath is a tricky thing.

Viewed in a certain light, it’s an excellent chance to slow down, take stock and make the most of the enforced sofa-rest, cushioned by a pile of books, a stash of chocolate and box sets.

In normal life however, without my very own Mr Darcy, the washing piles up, The Teenager has started his A Levels, the cat insists on bringing home an endless parade of headless mice and Ocado have emailed, imploring me to book my Christmas Delivery Slot, NOW.

In between bouts of complete and utter exhaustion, I’m battling to keep the show on the road. Plus I’m trying to think laterally and use the time off not only to rest but also to get ahead, i.e. work my way through the entire University reading list for next term.

I had all the books delivered, settled down, unwrapped a bar of Green & Black’s and prepared to be inspired and transported to wondrous new worlds.

Bad idea. I checked the syllabus. I checked the books. I emailed the tutor. ‘New and Experimental Writing’. Let’s just say, I have no idea what Gertrude Stein was taking when she wrote ‘Blood on the Dining-Room Floor’.

However, I ploughed through, ticked her off my list and moved on to the next one. Excellent. Somehow, I have moved into a Poorly Routine. I get up early when I have most energy, do something outside the house, get back by lunch then snooze through the entire afternoon. Then, I wake up, cook dinner, snuggle under my blanket again and wait for bedtime. It’s been working. For a while.

Two days ago, same routine. I got up early. Then fell on the floor.

Oh. Painful doesn’t begin to describe it. I was in agony. I could barely walk and somehow made it downstairs through a combination of swearing, clinging on to the handrail and thumping. By some bizarre coincidence, I had booked in to see the chiropractor, more for The Teenager than for me (scrums, head-locks, dodgy balls).

Long story short, my psoas muscle is in spasm. The pain goes through my pelvis and groin and out through my lower back. Walking is excruciating. According to the chiropractor, it’s all due to my sudden inactivity. Lol.

When I told my MS nurse I planned to return to work ten days after Campath, she laughed, then said, ‘no you’re not’. Ok then. Quick call to The Boss to explain the situation. His reply? ‘Didn’t notice you were off, Half-Shift. Or should that be Sick-Note?’

Charming.

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