A mixtape for multiple sclerosis

A mixtape for multiple sclerosis

Wednesday 25 October 2017

True colours

It’s October half-term so that can only mean one thing – it’s our annual return to Butlin’s, hurrah.

Another chance to meet and greet with Billy Bear, another chance to eat massive breakfasts (Tec actually medically demands the fat content of a full English everyday*) and another chance to brave the Space Bowl.


I’m aiming to embrace the insane whirling dervish of water with fresh confidence this year, emboldened by the following key facts:


a) I can feel the water again which is surely a help and
b) I shall be wearing a spectacular vintage style swimsuit – all 50s glamour and bright red cherries


It’s a rather lovely item of clothing, first debuted at our daughter’s birthday swimming party last month where hubby and I both got in the water to oversee 20 over-excited eight and nine-year-olds.

When I mentioned to other mums that I’d be going in, the main reaction was “oooh, that’s brave.” Not, interestingly, for the fact I was leaping into what was effectively chlorinated kid soup, but for the fact I was wearing a swimsuit in front of other school parents.

This aspect of the party honestly hadn’t occurred to me. Possibly because I was mainly worried about my daughter’s friends drowning/ injuring themselves or each other/vomiting in the pool.

But it made me think.

As previously noted I do not have the magazine idea of a perfect body. But more than that, thanks to MS, the idea of a genuinely perfect body – that is one that is perfect in health not looks - is a totally impossible dream.

I can diet it, I can pamper it and I can push it – but I cannot make it do what I want it to. I cannot repair it and I cannot make it better.

I certainly have sympathy with friends who are unhappy with their bodies, who want to lose weight or tone their thighs or increase or decrease their busts – but I’m also sad for them.

I’m sad that their insecurities are stopping them appreciating what a disease-free body is, what it means to be able to enjoy their health.

We are living in an age of insane scrutiny of woman’s bodies, of judgement and shame, of doubt and stigma, where the style has become worth more, much more, than the substance.

I really don’t want my daughter being exposed to this culture. I really don’t want my friends to feel belittled by it. I really don’t want a world where ‘brave’ means putting on a functional item of clothing.

As someone whose body is never, ever going to be perfect, I want my friends to feel proud of the beauty, strength and health they do have and not dwell on the perceived flaws that they don’t.

I want them to wear a bikini, a swimsuit, a tankini, a wetsuit and dive straight in.

And for those of us who, for whatever reason, are not blessed with a healthy body, well I like to reflect on this:




*This is not actually medically true. But for the purposes of Butlin’s enjoyment it is.

Wednesday 18 October 2017

Love cats


The cats!

The cats are back!

And, more importantly, the cats are smiling.

The reason why the cats are smiling is blood related.

Admittedly slightly unpleasant on the surface as an explanation, but it’s actually all good. Or at least, it’s good as regards overcoming this particular hemoglobin hurdle.

In July I wrote about the maths of MS and more specifically the maths of Tecfidera.

The delicate balance of lowering lymphocytes to reduce the unwanted autoimmune system response tempered against a weakened immune system with its potential for unpleasant and opportunistic infections.

Back then, after six months of Tec, my lymphocyte levels stood at 0.74, having dropped through 0.77 at three months from a 1.2 starter reading.

My latest results show them back at 0.91 – a massive relief that they are picking up and hopefully heading away from the infection danger zone and Tec-stopping level of 0.5.

Of course there will be more three-monthly blood letting hurdles to go where the readings may have changed.

And even then, assuming those results are okay, there’s still the big leap of the MRI which will indicate whether all this maths, hair loss and cat-related internet searching is working for me.

Like the whole of MS, it’s an unknown.

As a disease modifier, Tecfidera’s efficacy is currently rated as good – with relapses dropping by an average of 53% and disability progression slowed down by 38% But note the ‘on average’ – my experience on Tec could be far better, or far worse, then these numbers.

Until the MRI, until the next relapse, I just won’t know. But just for the moment I’m feeling quite relieved and ready for:



Wednesday 11 October 2017

Yes

It’s been almost 12 months since I stopped Avonex and I’ve noticed something missing.

Not the handful of painkillers that I was taking to help with the shots, not the reliable day-after headache, not the increased dizziness - nothing physical.

It was that feeling of being just a bit, well, down.

Admittedly, I will whine where necessary - but it wasn’t that sort of a feeling, it wasn’t a whine with a reason, it was a slow moving insidious creep of a downer.

To begin with, a few weeks off Avonex, I wasn’t sure if I was imagining it. Had I’d simply had a pleasant few days and was just generally feeling brighter, or was something more meds-based happening?

Being brought up on Adrian Mole, I do still keep a bit of a diary and I trawled through it last night to look for evidence.

And yes, there they are, a number of references to feeling down or a bit depressed, and they are mentioned with increasing regularity during the time I was injecting.
But now? A year off the Avonex? Not so much.

I asked my MS nurse about it and she confirmed that despite initial patient trials not flagging any issues, in ‘real life’ use the beta interferons can be a cause of low mood, with Avonex being a particular offender.

People close to me have experienced depression and anxiety and we have spoken about it quite extensively, so why, even though I’d recognised it in my diary, did I not pay enough attention to my consistently low mood?

It also wasn’t a topic that came up in any of my health reviews – but I wonder if it had, would I have just dismissed it as a bad week or would I have made the connection and mentioned it?

I’d been on Avonex for 18 months and it’s only now I’m not that I notice the difference – I’m not so tired, I’m more engaged, I’m not so, well, down.

Obviously the interferons work well for a lot of people and I’m certainly not advocating anyone coming off them, but it is worth being aware of how you feel and noticing any changes. 

And it's not just the drugs - MS can impact our minds just as much as our bodies. We need to listen to ourselves and talk about our difficulties.

For everyone, mental health is just as important as the physical sort.

It was World Mental Health Day yesterday and the following links may be helpful:




Wednesday 4 October 2017

Fall in love with me

It’s our tenth wedding anniversary this week.

I know, I know, we don’t look old enough.

But yes, ten years.

A quick google tells me that the traditional gift for ten years is tin. Not the most glamorous of anniversary offerings, but there we are.

Although if I think about properly, tin actually resonates rather well with my hubby. (Bear with me on this one...)

When we first got together we had been great friends for five years. But we’d dated for just six months when I was hit with my first relapse.

Hospitalised, newly diagnosed, over-thinking, I was worried about my future and about that of my then boyfriend.

How could I expect him to take on someone who, for all we knew, could become very ill very quickly? How could I ask him to take a chance on a future with someone whose present had suddenly been thrown into such turmoil?

As friends we were rock solid, but as partners we were only just starting.

I remember saying he could leave, that he didn’t have to stay and deal with an uncertain future.

But anyone who knows my husband knows that leaving would never be an option. That staying and facing it as a team would be the only road he would choose.

I hope he knows quite how much that early decision means to me.

That his love, support, trust and belief have been central to the way I am able to cope.That his decision has got me through the last 10 years and will lead us into the next.

Which brings me very neatly to the answer of why tin resonates so well.

In the film adaptation of L Frank Baum’s The Wonderful Wizard of Oz, the tin man searches for a heart, only to realise he’d actually had one all along.

After all, as the great and powerful Oz puts it: “A heart is not judged by how much you love, but by how much you are loved by others.”

And he is loved. Very much.