Tag Archives: MS

Out Of Date(s)?

cheeseI discovered an old block of Parmesan in my fridge the other day.

It was well past it’s sell-by date and had been sadly neglected and forgotten about, but I sliced the edges off, grated it and it was just fine. Perfect.

As I was sprinkling it over my pasta, I realised, I am this Parmesan.

Before you think I truly am suffering from an extreme case of Empty Nest Syndrome now The Teenager is at University and my only companion at home is my cat (and my plants), bear with …

Back in 2012, soon after my diagnosis of MS, I lost:

  • My partner (he scarpered, sharpish)
  • My job (bullied, then forced out)
  • My health (left the building)
  • My envisaged future (dashed)
  • Hope (lol)

Now in 2017, I have:

  • A brilliant job
  • Despite MS, decent health and access to treatment
  • A brighter future (I think)
  • A whole lot of hope

Excellent. But this is where the Parmesan comes in. I am still partner-less; I am that forgotten-about block of cheese in the back of the fridge. Whilst the milk and sweet chilli sauce may have regular outings, I never go anywhere.

And, sticking with my very dodgy analogy, with a bit of sprucing up, maybe I should rediscover myself and find the True Me lurking just beneath the surface. Sure, I may be a bit battered and bruised from experiences over the last five years, but with a bit of help, who knows?

Part of me hasn’t looked for a partner, focusing instead on the more pressing matters of giving The Teenager as normal a life as possible, winning a workplace discrimination case and sorting out MS treatment. It didn’t leave much room for anyone else. Plus, I was in the middle of an MS Pity-Party For One, which wasn’t pretty.

Well, now The Teenager is having a ball at Uni (latest text, ‘Being an adult is weird, but am getting used to it‘), my job is sorted and I’m facing the future filled with hope, a teeny-tiny bit of space is being carved out.

Then the Fear Factor kicks in. I simply can’t date because:

  • The cat wouldn’t like it
  • I don’t own any ‘dating clothes’ and I can’t wear heels
  • Ditto dresses. Outside of my job (building-site clothes), I wear jeans
  • When do you bring up MS?
  • The last time I dated, the iPod hadn’t been invented
  • I could suddenly get foot-drop and splatter myself across the floor

So you can see the dilemma I’m in. It would be kind of nice to have a partner-in-crime; someone who didn’t mind the jeans, the cat … the MS. Then again, it would be nice to wear heels again, but that isn’t going to happen any time soon.

I often wonder if I am subconsciously preparing myself for eternal singledom. I cut out holiday adverts from companies with names like, ‘Only The One’ and ‘Just You’ (no single supplement, no pressure). I am taking an unhealthy interest in talking to my plants. I automatically divide recipe ingredients by four.

As we approach the season of unbridled smugness, i.e. Christmas With a Loved One, spare a thought for little old me, pruning my Poinsettia and signing Christmas cards from me and – you guessed it – the cat.

Sad, much?

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We Are Five

candlesMy little blog turned five last month.

Five years old!

The Teenager had just celebrated his 13th birthday, I was a lot skinnier and life was pretty horrendous.

Full of frustration and anger at the constant bullying I was experiencing in work since my MS diagnosis a couple of months earlier, I needed an outlet.

I had been chatting through email with a wonderful author, M. J. Hyland (her books are brilliant – I totally recommend ‘How The Light Gets In‘), who herself has MS, and she encouraged me to start a blog. And so, I did.

Five years later, The Teenager is throwing himself into University life, I am mourning a wardrobe full of clothes I don’t fit (thanks to Grave’s disease) and life is pretty wonderful.

Looking back over the last five years, it’s been a twisty-turny path. For at least two years, I was in a dark place; coming to terms with such a diagnosis was complicated enough, but coping with vicious bullying in work and an extreme course of MS treatment at the same time almost pushed me over the edge.

And then I was sacked from my job for ‘being a liability’ due to MS and with the ensuing legal battle  life wasn’t fun for me, or, more importantly, for The Teenager. Something had to change, and luckily it did: this blog.

It’s no exaggeration to say that it pulled me out through the murky swamp I had found myself in. After a shaky, tentative start, I began to receive comments on my posts. There were other people out there, just like me! You guys. I talked about everything. And you sent me your own experiences and your wisdom. We mulled over problems, worked things out and I had the benefit of many different viewpoints, not just my own.

Life now is a world away from five years ago. The Teenager is a happy, confidant, go-getting young man and I could not be prouder of him. He tackled all the challenges he faced head on. I’ve completed a Master’s and gained a Distinction. I enjoy my new job and it’s flexible, working around the MS quirks.

I often wonder where I would be today, had I not had this diagnosis. Quite possibly, unfulfilled, still dreaming about writing, still wondering when my real life would start.

Now I know there will be no knight in shining armour, I have gained an inner strength. Now I know that life can be utterly random, I go with the flow.

But above all, now I know there are people like you out there who take the time to send comments, opening my eyes and expanding my vision of the world, I know me and The Teenager will be ok.

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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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Don’t Believe The Hype

lifeI was wandering around the supermarket yesterday and accidentally went down the Baby aisle.

With the last 18 years of bringing up The Teenager fresh in my mind since taking him to Uni, I felt a bit of a pang.

I gazed upon the rows of feeding cups, teeny tiny outfits, creams, ointments and the inevitable ‘How-To’ books.

Someone once said to me, when I was heavily pregnant and reaching for my second ice cream sundae, that babies don’t come with an instruction manual; probably the best piece of advice I’ve ever had.

In a way, having a child and being diagnosed with MS are weirdly similar, and having been through both (and survived to tell the tale), I can quite confidently say, ‘MS does not come with an instruction manual.’

In the beginning, I thought it did. Similar to being pregnant, when I was diagnosed, I was bombarded with stories (both good and bad), told to do this, told to do that, take this supplement, eat this raw bark by the light of a full moon. I read endless articles online, mostly grim, and I envisaged a similar future. The few positive stories involved wildly expensive treatment and/or jumping out of a plane for charity.

When I had The Teenager, I constantly referenced books, other people, forums, random strangers – ‘why won’t my baby stop crying?’ Whilst the deluge of advice was welcomed, it wasn’t helpful. Just like MS, every baby is unique. What worked for me (draping my baby over my arm and rocking him in tune to The Verve, a completely accidental occurrence), didn’t work for others. We found our own groove through trial and error.

MS has a virtual cornucopia of symptoms and none of us are the same, just like those tiny week-old humans. You can read as much advice as you can, you can pin your hopes on a miracle cure, just like I did to cure The Teenager’s colic. Nothing worked until I found my own solution to our own unique problem.

Being diagnosed is about finding out what works for you. Your symptoms will nudge your life in different ways, to cope with various symptoms, be it fatigue, cog fog, mobility and all the rest. When you seek advice, take what you need from it and discard the rest. It’s your life and your life with MS is not the same as anyone else’s.

I’ve found my MS groove, just as I found my Baby groove. I don’t drape myself over anyone’s arm, but I’ve re-calibrated certain aspects of my life which work for me, but which I would never foist upon anyone else.

I know when to sleep, when to do paperwork, when to shop, when to go to work. I know when to be extra careful going up or down stairs and I now know how to cope with dark days. All this works for me, but probably won’t for you.

Examine your MS and find out how to play it. It’ll take time, trial and error and blind alleys.

But you will find it.

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Join The #KickMS Movement!

AliceCan Do Multiple Sclerosis, a non-profit that provides health education programs for families with MS, launched their annual, online campaign that encourages people with MS, as well as their friends and supporters, to share how they #KickMS during September’s Can Do Month celebration.

The Can Do Month campaign honors and remembers the legacy of Can Do MS founder and Olympic ski medalist, Jimmie Heuga, on his birthday, September 22.

Jimmie pioneered the philosophy of health through exercise and nutrition, enabling those with MS to lead healthier lives.

“My father kicked MS by focusing on what he could do rather than what he could not,” says Blaze Heuga, Jimmie’s son. “Because of this, he was able to go beyond perceived limitations to live his best life with MS and empower thousands of others to do the same.”

The community can celebrate Jimmie’s can do spirit and inspire others by sharing how they live passionately through a photo, video, or mantra. #KickMS by running, painting, camping, laughing, cooking, travelling, loving, or anything you can do!

There are three easy ways to share how you #KickMS:

  • Submit your photo or video online at mscando.org/candomonth
  • Share your photo or video on the Can Do MS Facebook page using the hashtag #KickMS
  • Share your photo or video on your personal Instagram or Twitter account using the hashtag #KickMS (post must be set to public)
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