Category Archives: Blogging

Jun 01 2016
80 Comments
Blogging

MS Is Truly, Horribly Awful. And Then Some.

disgraceIt must be that time of year, but the trolls are back out.

The usual complaints – I make light of MS, I haven’t suffered enough to understand, I am a disgrace. And so on.

So rather than replying to each individual email, here goes:

How dare I complain about MS when I am taking a Master’s degree? – If only you knew how much of a challenge this is. I have no career left; that’s in tatters. My inner compromise was to take on a job to pay the bills but which left me with a void once I got home. So I decided to try my hand at writing. It’s not going terribly well. A victory for the haters?

How lucky am I to have had Alemtuzumab treatment, so how come I complain about MS?  – Yes, I am hugely fortunate and there is not a day that goes by that I don’t think about this. And you know what hurts? I took this treatment first and foremost to be there for my son – as a single, divorced parent with 99.9% of responsibility for my son’s upbringing, I had to be there for him. My dad died of his MS symptoms when he was 35. I don’t really remember him. And every single day, I am grateful that my son will never face that.

I haven’t suffered enough to understand MS – there’s a reason I don’t blog from my sofa, when I can’t get up and my son cries. If that’s not suffering, I don’t know what is. And haven’t I ‘suffered’ enough, growing up without my dad?

I make light of MS – yes, I do. Sometimes. Read more of my blog – it varies, depending upon what is happening in my life. Some blogs are heartfelt, some are light-hearted. That’s real life, in all it’s glory.

I am a disgrace to MS – I might be, it’s a personal decision how you read my blog. If you want to see how a very normal, boring, fat(ish) woman responds to a huge change in life, read on. A disgrace? If disgrace means campaigning, then yes I do. If disgrace means being a boring fat(ish) woman with MS who just so happens to blog about it, then yes, count me in. MS is not my entire life, it is part of it.

I’m not disabled, so what do I know? – so I only walk with a stick when times are rough? I only fall down the stairs now and again? Or trip over and bang my head once or twice a month? Oh, ok.

I don’t know what I’m talking about – Yes, I do. I know way more than you when it comes to my own MS. MS is unique to every person. So why is mine less valid than yours?

If my detractors would like me to suffer more, be in more pain, have more injuries and give up work, then yes, I am an absolute disgrace to MS.

But, if there is something wrong with that last sentence, then I am, in my own little way, coping with MS.

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Apr 29 2016
8 Comments
Blogging

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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Apr 18 2016
5 Comments
Blogging

Fumble? Nimble!

NimbleYou know me, since MS, my hands just don’t do what they should.

I drop stuff. I fumble with packaging. I even need a pair of scissors to open a packet of Wispa Bites.

So when a very nice man called Simon sent me a Nimble in the post, along with a bag of sweets, I was more than a little curious.

The enclosed leaflet promised that the Nimble would let me say goodbye to wrap rage, thanks to it’s clever ultra-hard zirconia ceramic blade. Excellent. I gave it a whirl.

Well. I’m impressed. I’ve never blogged about products before, but this is the exception. I love the back story even more – Simon came up with the idea for Nimble when he entered a design competition run by Bath University, choosing to tackle the problem people like me have with opening packaging, especially in the kitchen.

I tried it on that packaging you get round batteries, thick cardboard envelopes and the horrible shrink-wrapped plastic on The Teenager’s 7-pack of sweetcorn tins. It was a relief not to stab myself with the scissors I normally use. It worked, even though the blade is tiny.

Most importantly, it passed The Teenager’s ‘cool test’. He came home from school one day and found me using it on a multipack of Diet Coke:

‘Wha’sat on your finger?’

‘Ah. This is The Nimble’ – behold.’

(effortless swipe, cans released)

‘Mint. Give us a shot.’

He then proceeded to slice through pretty much everything to hand – my shopping list written on the back of a Special-K box, a sachet of cat food and the cover of a cookery book (thanks for that).

Anyway, don’t take just take our word for it, if you want to try it for yourself, here’s the link to the online store.

Happy Nimbling!

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Apr 08 2016
14 Comments
Blogging

Flat In Flats?

flatAs regular readers will know, I’ve been nominated for an MS Society Award for my blog.

I’m over the moon and chuffed beyond belief, as is The Teenager, who will be my plus-one.

The dress code is ‘smart’.

Hmm. I feel ‘smart’ if my knitted hat for work has been washed the day before (it gets chilly stumbling around building sites, checking on concrete foundations).

A night out in smart clothes involves jeans, boots and a top. A coffee with friends involves jeans, boots and a top. You could say it’s a kind of tragic demi-student uniform.

But, I tried. I thought, ‘ok, this is my opportunity to show I can wear a dress’. I gave it a go. I stood in endless shop dressing rooms, tugging at hems, checking my reflection from twenty-seven different angles. I ordered three different sizes of the same dress off the internet, then sent them all back the next day.

I’ve had to admit, I’m just not one of those amazing women who suits a dress. Apart from the fact that most dresses look lousy with flat shoes, I’m just not … me. No amount of Spanx will convince me otherwise; I look like a sack of turnips.

However, when I slip on my lovely black trousers and black shoes, I feel transformed. Teamed with a beautiful top I bought for my visit to Downing Street (get me), I feel good. Normal, but much better. Confident.

I was discussing this problem with The Teenager yesterday. We went out for lunch, as a well-earned break from his studies. He asked me when I had last worn a dress. ‘Um, my wedding day?’ I replied.

‘Ah’, he said. ‘That was, like, back in the 90’s. Everyone wore dresses, probably, and blokes didn’t have man-buns.’ Impressive reasoning, I thought.

He patted my hand and said, ‘they’re not there to see what you’re wearing, they’re there to see your sad face when you don’t win. So make sure you’ve fixed your lippy.’ He sat back, impressed with his sage advice.

He’s got a point. ‘Comfy’ is creeping in to my lexicon. There’s other ways to push my boundaries and I don’t think dresses are one of them. So I will be monochrome on the day and will check that my lippy is present and correct.

My phone pinged. ‘Um, why are you texting me?’ I asked The Teenager. ‘You’re sitting right across the table?’ ‘Like, d’uh, I know, just wanted to tell you, no matter what happens, you’ll be fine. You’ve got me with you. And can I have your bread?’

The text read, ‘Love you. All good.’

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Sep 09 2015
10 Comments
Blogging

From Platform 12 To Number 10

Number10Well. Blimey.

What an incredible day I had yesterday.

I’d been invited to mingle with the MS Society’s most influential people and the Prime Minister’s wife at No. 10 Downing Street.

Me.

One personal shopper at John Lewis (‘ah, yes, I can see the problem … clearly‘) and a quick visit to the hairdresser (‘hmm, I’ll see what I can do’), and I was on my way to London.

My outfit was in a suit bag, my book-club book dutifully backed – I’m on page 789 out of 1500 and the meeting is looming – and I was as ready as I’d ever be.

I had the fortune to travel with the Chair of the Welsh MS Society Council and she calmed my nerves. We chatted all the way to London and before I knew it, it was time to change into my Outfit. Hair intact (all that hairspray meant it was pretty much bullet-proof), we ended up in the loos at the Paddington Hilton.

I locked myself into tiny cubicle and changed, a supreme feat of MS endurance. Limbs were flailing, balance was pretty dodgy. I emerged 15 minutes later, slipping on my extremely flat shoes and stuffing my jeans and boots into the rucksack I’d borrowed from The Teenager.

Quick make-up touch-up in the dimmed lights (so heaven knows what I looked like in real life), jewellery on, outfit smoothed down and I was ready to go. And what better way to start the evening with a glass of Prosecco. So we did.

Anyway, we checked in my student rucksack at the Left Luggage and hailed a taxi to 10 Downing Street, passing Buckingham Palace (Queen was away on holiday). And then we were there.

We waited in the pen they have outside Downing Street and I made friends with one of the six policemen with machine guns. He was absolutely gorgeous and I regret not leaving my mobile number, but anyway, we made our way through security (me with a sad backward glance at Handsome Machine Gun Man), x-rays and the like and found ourselves standing outside the iconic building.

We handed our mobiles in at the entrance and then, joy of joys, we ascended the staircase featured in ‘Love Actually’. I was in heaven. We made our way to the reception, to be greeted with trays and trays of drinks and canapes. I studiously avoided the canapes – cream top, I knew what would happen – I’d bite into a Hoisin Duck mini-wrap and squirt sauce all over myself and my companions.

I mingled, I squealed with sheer excitement and mingled some more.

I was told that Samantha Cameron had arranged to meet certain people before her speech, so when she entered, there was an itinerary. But somehow, and I’m not sure quite how (honestly), I found myself next to a famous pop singer whose mother has MS, so I shook hands with the Prime Minister’s wife and had a quick chat.

At the end of the meeting, there were wonderful speeches and we truly are in safe hands, all of us with MS. The message is getting out there – MS is being kept in the public eye.

On the way home (Queenie still not in residence), we reflected on our evening. Then we got to Paddington and I reclaimed my baggage, reverted once more into student clothes, bought a huge burrito and caught the train back to Wales.

A wonderful experience. And my hair is still stiff from all that back-combing.

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