Happy 28th Birthday To Me!

birthdayI was diagnosed with MS four years ago this week.

If you’re anything like me, and each MS-diagnosed year feels like a dog year, then that makes 28 years I’ve had to get used to this.

And, whoah, do I feel every single one of those years.

Four years? Is that all?

But, as with any birthday, there is a lot to celebrate. Challenges? I’ve had a few. I’m still here. Bad times? Many, and I’m still here. Horrendous, vile, despicable times? Too many to mention but they are behind me now. This week is about having a look over how far I’ve come, not just about the hurdles I had to clamber over to get here.

The Teenager is thriving; he’s just finished his last exam, has actually hoovered his entire bedroom and emptied his bin and even decided to start cooking for us both a couple of nights a week, in preparation for university life. First up? Beans on toast. Yum. It’s the thought that counts.

Don’t tell the boss, but I love my job. The alternating work sites so I’m never bored, the camaraderie, the fresh air. I adore it. I can pick and choose my hours so medical appointments are never a problem. There’s no tutting or eye-rolling when I take a bit of time out to shake off the Uthoff’s or get to grips with foot drop.

I’ve just entered the dissertation stage of my master’s degree. It’s flown by and here I am. Completely unprepared and uncoached in academia-speak, but I will try my hardest. And when I hand over my hard-backed version to my tutor in twenty years, I will be beaming from ear to ear.

And last but not least, I have been through a major life-upheaval with my mum being ill. I found strength I never knew I had and thanks to my fabulous friends and family, I have navigated the ups and downs that a serious illness brings, only this time I am at the other side of it.

The downsides? I’m still working on my spontaneity – I can’t wait to say, ‘yeah, great, it’s 7pm, it’s a beautiful evening, of course I’ll join you’, or, ‘ok, macrame wasn’t quite what I had in mind for an exciting hobby, but, sure, I’ll give it a go.’

Or the usual gremlins – appearing drunk, tripping/falling over, wonky speech, dodgy hands, etc.

Yet for all that, I can’t quite believe how far I’ve come since the Bad Old Days of Deep Sorrow and Wailing. I think I am a kinder, more compassionate person and I appreciate every single positive thing in my life beyond measure.

MS might have laid down a challenge, but I challenged it right back.

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Spontaneous? Give Me A Couple Of Hours …

fat faceI have been out twice this year.

With my ill relative taking up most of my spare time (what little there is of it – Teenager, Masters, Cat), this is quite an achievement.

So when my friend texted last week asking me to try a new restaurant, my first thoughts were, ‘I’m shattered, I can’t, I’m not dressed, I’m tired. I’m boring.’

Cannily, he sent the text four hours before said restaurant reservation, so I had fewer excuses, apart from the fact that I had just applied a stinging face pack and had inadvertently loaded on a good few pounds since the last time I had been out for dinner, way back in 2015.

He picked me up and we set off. I checked my blotched complexion in my tiny mirror. I tugged my hem and shifted my considerable weight in the car seat.

We got there early, so went to the pub round the corner for a drink. Reader, I have never felt more conspicuous. I was twitching with MS and my walk was funny. In short, I looked a few sheets to the wind. When we sat down, I tried to look sophisticated but got wine up my nose when my elbow slipped on the shiny table as I was holding my glass.

After our drinks, we walked across to the restaurant. It was empty. The waiter flourished menus in our faces and told us he had the perfect table reserved just for us. The one in the back corner. By the kitchen and next to the toilets.

Inwardly, I collapsed. My friend took the reins and asked for a table nearer the front. Was it me? Had he taken one look at my quivering large mass and decided I was better suited at a table out of the way? My self-confidence has taken a serious knock this year, but this was surely confirmation?

I hastily ordered and popped to the loo where they had fitted a circus fun-house mirror. You know, the one where they make you look ginormous. I turned this way and that. Ah. We have a problem. Four months of comfort-eating have taken their toll and I am now a Blob.

I quickly ran through some positive thinking mantras – ‘you are a worthy peep, you may be fat but you have a nice lovely personality, get back down there and enjoy yourself, life is short’, etc, etc.

I took a deep breath. Here goes. Well, I sailed back to the table with only one tiny foot-drop trip, sat down with a triumphant thud and had a wonderful dinner with my friend. The best this year, lol.

The diet starts tomorrow.

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Can You Afford To Have MS?

moneyIn the news today, Macmillan Cancer Support reports that most people cannot financially afford to have cancer.

They estimate that the illness costs around £760 per month, leaving the average family with a shortfall of £270 per month, due to increased living costs, such as extra travel, support and loss of earnings.

I could be wrong, but I think this pretty much applies to MS too – definitely so in my case.

Even before diagnosis, I had to drastically cut my working hours and now, although my health has stabilised somewhat, MS still throws plenty of curveballs my way, so much so that I cannot ever see a time I will be working 35 hours a week.

When I was really ill, I relied heavily on expensive ready-meals and takeaways instead of my usual prepared-from-scratch meals. I also took a lot of taxis to hospital and back, unable to cope with the stress of driving, parking, fighting with the ticket machine (the one at my hospital is sadistic) and stumbling to my appointments. I would feel tremendously guilty at not being able to do much with The Teenager so I would entice him with an extra tenner here and there to enjoy himself with his friends. It all added up.

So not only do we have to cope with the devastating emotional loss and bereavement any illness brings, we also face the very real fear of losing our homes, our livelihoods and the ability to look after our children in the way we would wish.

As a single, divorced parent (small violin please), I have no partner to fall back on. I have to earn a wage. That responsibility is frightening and keeps me up at night. I joke that most of my furniture is from Gumtree, but I’m not far wrong. I rummage through charity shop racks, putting aside the money I save so that The Teenager can have a few nice brand-new t-shirts. The cat went on strike when I swapped her food to supermarket own-brand but she learned to love the cheap biscuits, although she brings home more decapitated mice nowadays.

What is the solution? Is there one? If we give up work, we’re scroungers. If we stay in work, many of us are made to feel unwelcome and a ‘burden’, needing too many adjustments.

One thing I must mention though, is that the National Health Service remains free in the UK. I can’t imagine how much I have cost the NHS over the last four years. How would I have afforded the cutting-edge disease modifying drug I had access to, if I was living elsewhere?

But what does the future hold? Will we still have an NHS? What will happen when I’m too old to work but too young to retire? One thing is clear, illness is expensive. Can you afford it?

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Stumbling On A Film Set …

SpoonFedI had an email a couple of weeks ago – would I be interested in speaking to the actors of a new film about MS? The producer was eager to portray an accurate and honest account of the realities of life with MS.

I read further – the actors were Lesley Sharp (from Scott & Bailey, my favourite) and Joseph Mawle who had been in Game of Thrones.

Erm, yes please?

So last Tuesday I found myself in a rehearsal room in London, chatting away to them and the script writer. They asked me an incredible array of insightful questions and I think I did my best to describe life as a person with MS.

On Friday, I was invited back to watch the first day of filming. My book was to be one of the props, so I gave them a copy, where it was placed in a prominent position. My book on film – fame at last! The scene I was to watch was taking place in a support group, with a circle of chairs, Joseph already sitting down and being joined by the therapist, a lovely actor called Jonathan Nyati ( to whom I gave some handy DIY advice).

I had lunch with Joseph in a beautiful sunlit garden (OK, so there were several other people around the bench) and then it was back to work. I wandered around, fascinated to watch Lesley Sharp re-do a scene over and over, where she walked through a door and along a corridor with an unmistakable MS walk. My eyes brimmed with tears; she had nailed it.

The sheer volume of people involved in filming was eye-opening – I counted at least twenty. During takes we had to be completely silent, so of course I dropped my bag with a huge thud by accident. Not my finest moment.

Halfway through the day, I heard my name being called from the other room. The producer was asking me if I wanted to be in the film. Huh? I walked in a daze towards her and she told me I was to be an extra (Woman in the Support Group), entering the room shortly after Jonathan, where Joseph was already sitting. I would then greet them both and take a seat.

Reader. I frantically worked it out. If I said no, I would regret it for ever. If I said yes, I would regret it for a short while. I said yes. I was given a cue, sent out the room and had to count two seconds before turning the door handle and walking in. Well, I did it. About six times (I think they were desperately trying to find my best angle). Where was Spanx when I needed it?

When I had finished, and stopped trembling, I felt brilliant. I had done it. And not only that, I was part of a project which will hopefully increase awareness of MS and the effects it can have. Before we left, I had a great chat with Lesley and Joseph, both of them impressing upon me just how important they thought this project was.

I floated back to Paddington, wondering if I had made the whole thing up. I’ll even have two credits on the film – script advisor and (fat) Woman in the Support Group, aka, Stumbling In Flats playing herself. Do you think I can apply for an Equity card?

p.s. I must point out, the camera puts on three stone …

p.p.s. I must lose said three stone before the premiere …

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A Celebration of Inspiration

AwardsWell. What a busy few days.

As regular readers will know, I had been nominated for an MS Society Award for Digital Media.

We were invited to a glittering ceremony in London; The Teenager was bouncing off the walls with excitement and I was tugging at my hem and trying to suck my stomach, cheeks and thighs in with limited success, having packed on the pounds in the last few months, and probably looked more like a confused goldfish than a suave and sophisticated woman.

We arrived the night before, The Teenager delighted with our hotel room (oooh, there’s a kettle!), although he lost the Bed Battle: we shared a twin room and I bagsied the double bed and he got the single. He got his own back though, as he had packed his Playstation 2 (he’s totes retro) and hooked it up to the TV, shooting people left, right and centre. He explained it was for his ‘down time’ as he had also brought his study books.

We spent a wonderful evening with Janis Winehouse and her lovely husband, Richard, meeting at their house where The Teenager posed with one of Amy’s Grammy Awards before going for dinner at a local Greek restaurant.

The next day, we arrived at the venue and were soon in a whirl of catching up, meeting new people and being whisked away for photographs. Me and The Teenager had to sit on chairs next to each other, looking natural. Lol. After the ceremony, we did the same thing, although outside, right on Liverpool Street and without the chairs. Bemused commuters slowed down as they passed us posing by some balustrades. Were we famous? Er, no.

The Teenager was hyperventilating when he saw the lunch seating plan and danced around me as I tried to hold a serious conversation with people during the pre-ceremony drinks – ‘Mum, mum, mum, mum, remember Doctor Who? Billie Piper? Rose? Her mum? Well. Her mum in Doctor Who is sitting next to me. Honest.’ Yup, the amazing actress Camille Coduri was placed next to him and he was mesmerised as she chatted to him about his studies and how it was to work next to David Tennant.

He nearly fainted when he saw The Vaccines sitting at the table next to us and plucked up the courage to chat to them and get a few photos – he’s going to see them at the Reading Festival in the summer. His joy was complete.

I didn’t win the award, the honour going instead to Stuart Rose, a phenomenal fundraiser for the MS Society who is passionate about raising awareness about MS. Luckily there were no cameras trained on my face as, at the same time the award was announced, I had a text about my mum and burst in to tears.

Not the best timing, but I took myself off and sat quietly in the reception area and fixed my mascara (it really, really isn’t waterproof – they lied). I slid back to my seat, just in time to well up yet again when the Young Carer Award was announced. It was a truly incredible ceremony.

The next day, I woke up with a horrible cold and sniffled my way through an MS Council meeting at the head office of the MS Society before heading back to Paddington and back to real life.

I may not have won for my writing but it’s not the winning, it’s the taking part that counts, and everything me and The Teenager experienced was beyond amazing.

I have just heard that a little short story of mine has been accepted for publication – the second anthology I’ve been included in. I’m starting to think that although I didn’t win for my blog and book, I’m still doing ok.

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