Monthly Archives: September 2013

Sep 19 2013
30 Comments
Daily Life

Wardrobe Malfunction

Bella EmbergSo the great news is I’ve been shortlisted for an MS Society Award and the ceremony will be held at The Dorchester in October.

The bad news is the ceremony will be held at The Dorchester in October. October! Four weeks today to be precise.

I have been googling ‘Drop A Tonne of Weight in 28 Days’, but short of swallowing a tapeworm, I’ve resigned myself to looking more like Bella Emberg from the Roly Polys (see left) than Cara Delevingne’s frumpy cousin.

Steroids, fatigue and a complete sense of inertia have conspired to pack on the weight over the last two years. I hold my hands up (hang on, let me just put my Cheezy Puffs down), it’s my fault too. When your whole world is falling apart, what’s a box or two of Maltesers going to add to it? And that lovely creamy Greek yoghurt with added honey just sweetens the bitter pill.

The phrase ‘I have nothing to wear’ has never been more apt. Problem number one – flat shoes – how to look suitably glamorous in them? Even if I could squeeze myself into a beguiling little cocktail number, surely the effect would be ruined without even a tiny heel?

A friend helpfully suggested I should forget all about wearing a dress and choose a smart trouser suit instead. And invest in a head-to-toe Spanx bodysuit. And have one of those miracle weight-loss treatments three hours before, where you get wrapped up in clingfilm and covered in towels. Hmm. I would quite possibly faint from MS heat intolerance and spend the ceremony lying comatose across three chairs in the nearest A&E.

Problem number two – how to look glam in a trouser suit without looking like I’m going to a job interview? Problem number three – how to not stumble/drop food down myself/smash a glass during the event. Do you think they’d mind if I took one of my plastic wine glasses along? And a bib?

You can see why I’m a bit worried. And not only that, when I asked The Teenager what he’d be wearing, he mumbled, ‘hoodie, innit, but don’t stress, I’ll wear my smart trainers’. Ye gods.

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Sep 15 2013
28 Comments
Symptoms and Treatment

What Are The Chances?

scratchcardIt’s never going to be good news when your MS nurse phones up out of the blue and says, ‘can you talk?’

To cut a long, uncertain story short, it seems I may, just may, have developed thyroid problems since taking Campath.

It’s treatable, I’m not too worried and as always, the MS nurse was calm and reassuring. I took the risk, I knew the chances – a 10-30% possibility with Campath, and I have no regrets having had the opportunity to take it. It has given me my life back.

What’s frustrating is that I was pretty much signed off by my neurologist until next February and was finally beginning to put the uncertainty of living with MS behind me. Now there’s another round of blood tests on top of the monthly Campath one and I’ll have an appointment with yet another consultant, an endocrinologist this time. And what’s really, really annoying, is that I seem to have come up with the dodgy odds again.

Apparently there’s a 1 in 750 chance of developing MS in the first place. Not too bad. If you have a parent with MS as I did, there’s around a 1 in 100 chance. That’ll be me then. And now with the thyroid odds, I’m beginning to wonder if I’m ever so slightly jinxed.

On the flip side, I’m grateful a potential problem has been picked up so early, and at least I’m already learning to live with some of the symptoms as they’re remarkably similar to MS – fatigue, hand tremors, heat intolerance. I’m wondering though, if you have both MS and thyroid problems, does that mean you get twice the amount of fatigue? And hand tremors? I’m only asking as I’m beyond shattered right now and I broke my second-last glass a couple of days ago. I have now reluctantly invested in plastic ones. Still drop the blasted things though, but at least they bounce.

Anyway, with the odds stacked in my favour, I’m toying with the idea of taking up scratch cards as a hobby. Or bingo?

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Sep 13 2013
24 Comments
Daily Life

Things Ain’t What They Used To Be….

if you can't stand the heatFor the last two years I seem to have been lying low, coping with everything MS had to throw at me.

I didn’t realise just how much the parameters of my life had altered until I went to London on Monday.

I wasn’t particularly worried beforehand – I’d lived and studied there for a couple of years, I loved the buzz, the people, the sheer energy the city pulsed with. So I trotted off, took my seat on the train and prepared to reignite my passion for the city.

The first inkling things weren’t quite the same as before happened seconds after disembarking at Paddington. Where had all these people come from? Oi, why did you just barge in to me? Where did I put my ticket? Help.

I was swept along by an unforgiving tide of people to the tube station, buffeted from all sides, whimpering, with panic levels going through the roof. What was wrong with me? I used to do the exact same journey with a howling baby, pram and suitcase in tow.

My legs had turned to jelly, my face was bright red with stress and heat as I tried to quell the rising anxiety. I collapsed on to a seat in the tube train, a chattering bunch of Italians clutching maps and water bottles swaying into me every couple of seconds.

After my meeting (which was brilliant), I did the reverse journey in the same disheveled state. I needed to get home. By teleportation if possible. Or helicopter. Over lunch before getting back on the Cardiff train, I discussed this with my friend. ‘I don’t understand!’ I wailed, picking at my fish and chips in a ye olde English pub. Had I really changed that much? Out of my five-mile radius comfort zone, it appeared I had. Gone was my fearlessness and energy. I knew my energy levels weren’t the same as before, but had they really plummeted so low?

Finally, I made it home. I was a mess. Every nerve was trembling, I was exhausted and mentally shattered. It took me a whole day off work to recover, where I hid at home, coming to terms with what had happened. Reality smacking me right in the face.

I’m shocked. I knew things were bad, just not that bad.

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Sep 11 2013
18 Comments
Symptoms and Treatment

Einstein’s Theory Of Insanity

Lord SaatchiEinstein’s theory of insanity is doing the same thing over and over and expecting different results.

This is where the Medical Innovation Bill steps forward, a Bill Lord Saatchi wants to introduce to help doctors innovate, to advance medical science and find new and better treatments for cancer, MS and other illnesses.

I attended a meeting at the Houses of Parliament on Monday where Lord Saatchi explained that medical innovation requires deviation from standard medical procedures. Presently, defensive medicine is practised through fear of litigation – payouts from the NHS have doubled in the past four years alone, reaching £1.2 billion in the last financial year.

What this Bill proposes is much greater clarity as to what is negligent and dangerous practice by clinicians and what is careful and sensitive innovation. Take for example the doctor at Barts, who refused to do what surgeons across the UK and US were doing with breast cancer – the Halsted method – whereby women with breast cancer faced a double mastectomy, and the removal of all tissue from the shoulder, to the chest walls, to the ribs – anything and everything that could be removed without killing the women.

Geoffrey Keynes, alone, removed only the tumour and undertook radiotherapy in combination. He was ridiculed and humiliated on a world stage. Halsted followers called it a ‘lumpectomy’ as a term of derision. Now, it is standard procedure. This was innovation. If Keynes did this today, and a patient died, he would probably face being sued.

So what does this mean for MS? I spoke to the MS Society regarding innovation and treatment. They are calling for two comprehensive reviews each year for everyone with MS, led by an MS specialist who can ensure that we have access to the most innovative treatments via well informed policy decisions.

Furthermore, Lord Saatchi points out that any decisions, whether standard procedure or innovation, should be made within a multi-disciplinary team. Yet we know that certain roles within these teams, such as MS nurses, have been under pressure due to recent financial constraints within the health service. How can we ensure that every patient has full access to a multi-disciplinary team?

Today, the Bill is being introduced into the Houses of Commons by Michael Ellis MP in the form of a Ten Minute Rule Bill, the first step in gathering Parliamentary support for the Bill. All of us living with a devastating illness should keep a keen eye on developments. Please ask your MP if they will support the Bill – www.writetothem.com

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Sep 10 2013
18 Comments
Symptoms and Treatment

Can Anyone Help?

travelscootI’ve been contacted by Sally who is wondering if you guys can help?

Sally is still fully mobile and able to walk much further than the level for a blue badge, but still struggles walking any great distance and has had to give up the love of her life – long shopping sprees. Driving’s not always ideal as she still  has to walk from where she parked.

She is looking into buying a light, compact scooter. She’s found the Travelscoot, but can’t seem to find any reviews about it and as it’s expensive, she’d like to hear from anyone who has one?

It’s really light, folds down small and can be chucked in the boot of a car without any adaptations.

Can anyone throw some light on this? All comments, good or bad, would be gratefully received!

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