Monthly Archives: June 2013

Jun 10 2013
29 Comments
Symptoms and Treatment

The Venerable Order of the Uhthoff Vampires

vampire teethUhthoff’s Phenomenon (try saying that without sounding like a muppet singing ‘Mahna Mahna’) is a serious problem for lots of us with MS, where heat can worsen our neurological symptoms.

I am therefore establishing ‘The Venerable Order of the Uhthoff Vampires’ and anyone who’s familiar with the following scenarios is cordially invited to claim free membership:

  • When that big shiny yellow thing in the sky appears, you shake a fist at it before slinking back into the shadows.
  • You have bought (and discarded) numerous hand-held fans but feel a bit daft using one in public.
  • When a friend suggests a bit of sun-bathing at the beach, you’re sorely tempted to whack them over the head with their flip-flops.
  • The very thought of having a sauna is torture and you’d rather pull out your eyelashes one by one.
  • You quite fancy a nice holiday in Iceland or the Antarctic.
  • You’re idea of bliss is to open your freezer and stick your head inside.

For the uninitiated, heat intolerance is like pouring hot oil over already-damaged brain circuits. MS means your nerves don’t fire messages properly, but with a bit of luck, they’ll eventually get through. Add a dose of heat on top of this and you get serious meltdown. My body collapses in on itself, my struggling brain shuts up shop and I go a peculiar shade of pillar-box red.

In the summer, my days are topsy-turvey. I get up around 5 am and stumble around doing as much as possible before the dreaded sun starts shining. Then I lurk at home, fan at full blast until early evening when I suddenly come alive again. Or not, if MS fatigue decides to join forces with Evil Uhthoff and create a lethal combination.

I spend hours peering through my windows watching carefree sun-worshippers stroll past, taunting me with their tans, their bright summer clothes and languid chatter. When people visit my tiny haven of a backyard, they admire the plants and hand-made pottery toadstools then remark, ‘shame you don’t get much sunlight here though.’ Um, exactly?’

So join me in the shadows. Don’t lurk alone. Vampires are bang on-trend. Just look at Edward Cullen and his Twilight buddies (I do, a lot, much to The Teenager’s eternal embarrassment).

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Jun 09 2013
15 Comments
Symptoms and Treatment

And Now For The Science Bit….

katie-brindamourKatie Brind’Amour (left), my expert guest blogger, fills in the gaps in my knowledge about Interferon. She’s a Certified Health Education Specialist and freelance health and wellness writer based in America who writes for Healthline.com and WomensHealthcareTopics.com:

Here’s to a Long, Healthy Life

MS is no longer the threat to life expectancy as it once was. Why? Meds and research. Yay!

One of these meds, often used in treating relapsing-remitting MS, is known as interferon beta-1b. Introduced over 20 years ago, it may just be one of the most important MS drugs on the market and is typically used to reduce the number of MS flare-ups experienced by individuals with relapsing-remitting MS.

Interferon beta-1b is an injected drug taken every other day. It is a man-made drug that serves the function of a naturally occurring protein in the body. The medication is not necessarily used permanently and may be regularly adjusted in dosage based on side effects, effectiveness, and changing patient needs.

A Look at Interferon Beta-1B

Since the landmark interferon beta-1b trial at the University of California, the news regarding interferon beta-1b seems to have gotten even better. When the drug was first being tested, MS patients were split into groups—two of which received different dosages of the interferon beta-1b injections and one of which received a placebo. After the trial ended and successfully demonstrated the potential of interferon beta-1b to reduce the number of MS attacks, participants were followed for over two decades. They were allowed to take any and all medications that they and their doctors saw fit after the trial ended.

In a recent follow-up study, the researchers checked back in with participants to find out if interferon beta-1b had any longer-term impact on MS. Patients who had received interferon beta-1b were, in fact, significantly less likely to have died of MS-related problems. Although the cohort is still rather young on average, most people in the interferon beta-1b groups that died fell prey to what kills the rest of the world—cancer, heart attacks, strokes, and accidents. People who hadn’t been in the initial interferon beta-1b group were more likely to have died by the follow-up period, but virtually all of the “excess deaths” in that group were attributable to MS-related problems.

It is important to note that the follow-up study can’t tell whether the ability of interferon beta-1b to reduce MS-related death is due to early exposure or simply a longer lifetime exposure level to the drug. Either way, however, it shows that interferon beta-1b seems to have dramatically narrowed the life expectancy gap for MS patients with relapse-remitting MS. And that’s a darn good thing.

Good News for MS Patients

Treatments and novel therapies are targeting every stage of MS to help make life better for individuals with the diagnosis. Since MS can feel like a chronic downer as much as a chronic illness, it’s good to keep these positive developments in mind.

Slowly but surely, we’re getting better at preventing MS progression and delaying MS-related disabilities. MS specialists are learning how to identify symptoms earlier, select the best treatments quicker, address complications more appropriately, and give patients the tools they need to feel confident and capable in their battle against MS.

And this is all surely good news. I’ll drink to that!

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Jun 07 2013
12 Comments
Daily Life

Party Pooper

you are invitedI have two family gatherings in the next couple of days. I love my family to pieces and adore spending time with them. That’s not the problem. It’s the uninvited guest who always tags along with me that’s giving me palpitations.

MS hisses in my ear, ‘you can’t go, you’ll be too tired, too hot, too tingly, too boring – why don’t you just go back to your sofa, have a nice lie down.’

I am an awkward guest now, like the Mad Aunt everyone knows they have to invite but aren’t quite sure what to do with. Chairs and parasols are rearranged in the garden thanks to heat intolerance, guests look away politely as I spill my drink thanks to dodgy hands and my jokes fall flat as I suddenly can’t remember all-important punchlines thanks to cog fog.

Don’t get me wrong, my family are wonderful, it’s just that MS has driven an invisible wedge between us. Sitting in a dark, shady corner watching everyone else bask in the sun is a metaphor for life with MS.

So, I have some pre-prepared answers ready to lessen the awkwardness and make me appear slightly less tragic:

‘You keep yawning, are we keeping you up?’

– ‘Hell no, was out last night dancing on the tables, fabulous time, wasn’t back til 2 am’

‘Hey, come out into the sun!!’

– ‘S’ok, Vogue said pale is the new tan’

‘Whoops, careful’

– ‘No worries, it takes skill you know, to trip over a flat surface and I’m the champion’

Good plan, no? My family all know I have MS but I don’t really want to belabour the point, and as most of us with MS know, trying to describe the symptoms is not for party-talk, it’s a full-blown maudlin evening over wine, Pringles, low-burning candles and Edith Piaf in the background. And anyway, I feel awkward enough without wanting everyone else to feel the same way too.

So I will try my hardest. I will take part in pass-the-new-baby-around, but perhaps pass him on a little quicker than the others. I will grip my wine glass with two hands, as if I am drinking from a chalice. I will pinch some ice cubes and surreptitiously pop them down my top. Above all, I will attempt to leave my uninvited guest at the door, just for a while….

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Jun 05 2013
32 Comments
Blogging

I Think, Therefore I Blog

why blogI had an interesting comment on my ‘Pause. Press Play’ blog post the other day:

‘Some of your blogs raise comments and some don’t. Do you know in advance what do and what don’t. One cannot be creative all the time. Do you find you write things because of the commitment or deadline?’

I went away and thought about this and worried that people who read my blog think I just bash out any old post to fill space. I guess it’s a fair point, but believe me, every post is carefully considered. Some posts will appeal or strike a chord with people, some won’t as they’re more directly concerned with my own life, rather than the wider ‘living with MS’ picture.

The ‘Pause. Press Play’ post was an update – I had been off work for three weeks with a haematoma. It also focuses on the wider issue of my current employment. Due to a series of misfortunes, i.e. being stripped of my duties in my previous job and ultimately sacked for having MS, I am between jobs and it’s only thanks to a good friend that I am employed, albeit in an unsuitable job. Rather than be signed off sick, I will fight tooth and nail to stay in employment.

I was highlighting that despite the dire situation, I have brilliant friends and I can still find the humorous side. You have to if you want to live any sort of life with this blasted disease.

I started this blog as a platform for discussion and all comments are welcome – I’ve had my fair share of negative ones and that’s instructive too. Blogging should be two-way process, otherwise, why blog? If you invite comment, you should be prepared to respond to it, hence this post.

In answer to the question, no, I don’t always know which posts will bring the most comments, and I’m often surprised at which ones seem to hit a nerve and are commented on, re-posted on Facebook and re-tweeted. I love the often lively discussion that follow some of my posts and I learn a huge amount from the different viewpoints that come through.

I am grateful for the comment as it allows me to raise some points but as I wrote back, the day I stop having anything to say is the day I stop blogging.

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Jun 04 2013
8 Comments
Daily Life

Driving Miss Crazy

Cardiff-20130603-00198The day I was diagnosed with MS I was instructed to inform the Driver and Vehicle Licensing Agency (DVLA) toot suite, on pain of flogging or death. Well, no, not really, but it was a pretty stern diktat.

I duly found my way through their labyrinth website, downloaded the forms and sent them off. A year passed and I was confident they had forgotten all about me and had guessed I was still a safe driver. I had even taken an ice and snow driving course when I lived in Norway, a terrifying day where I drove down a vertical hill covered in oil to simulate the experience.

The other week though I received a letter with the words, ‘the Medical Advisor has recommended that your current licence is withdrawn…and a new licence will be issued to you, which will be only be valid for 3 years.’ Bearing in mind my previous licence was valid until well into the 2040’s, I was a bit upset.

For unscientific research purposes, I asked the Twittersphere if this was a standard procedure. Apparently it is. Which strikes me as rather odd and arbitrary. If only the powers that be who will be overseeing the change from Disability Living Allowance (DLA) to the Personal Independence Payment (PIP) could also accept that MS is a degenerative, progressive illness with no cure. Why make us re-prove that we have MS and it doesn’t get better? I doubt that anyone with MS who has a 3 year license will suddenly be deemed ‘cured’ and re-issued with a longer licence.

To rub salt into the wound, I am also now banned from driving 3.5 – 7.5 tonne vehicles and minibuses (not for hire or reward), for medical reasons. Not that I have any intention of doing so, but it would have been nice to have had the choice, just in case I wake  up one day and think, ‘do you know what, I really feel like bombing down the motorway in a big truck today.’ As you do.

So now my licence lasts until 2016 at which point they will review my case. I’m off out now for a little tootle in the car. The Thermos is ready, the tartan blanket  is packed and I have a tin of pear drops in the glove compartment. Just to be on the safe side.

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