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:

:: True colours by Cyndi Lauper

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

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:

 :: Love cats by The Cure

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:

• The MS Society has a really useful booklet about mood, depression and emotions as well as online information about MS and mental health.
• The MS Trust has some practical steps to help manage emotional wellbeing.
• Support is also available at Mind.

:: Yes by McAlmont and Butler 

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.

::Fall in love with me by Booth and the Bad Angel

North country boy

We’re having our kitchen ripped out and refitted at the moment.

It is long overdue and both exciting and somewhat testing.

We’re trying our very hardest not to live on takeaways and are spending quite a lot of evenings trying to reassure our two cats that the bangy, smashy men won’t be here forever.

Their furry brains are refusing to accept this and every day starts with them bolting through the cat flap at speeds I never thought cats could hit (particularly the larger one whose main activity is to eat until his cheeks resemble spacehoppers and then sleep it off until the next meal.)

But it’s getting done and, thanks to our kitchen fitting duo, getting done with a combination of amusement and 90s indie.

As evidenced the other day when I wandered past the gaping hole that is currently our kitchen to find one balancing precariously up a ladder and the other with his head in a cupboard both singing along loudly and happily to the radio.

Brilliant.

:: North Country Boy by The Charlatans

Don't you worry 'bout a thing

My daughter said a lovely thing the other day.

Not a grand proclamation of love, not a universal message of kindness and friendship and not even an announcement that she was doing her homework unprompted. (Although to be fair to her, she does do two thirds of these things; we’re working on the homework.)

No, it was: “Mummy, sometimes I forget you have MS.”

It was such a simple sentence, but such a great thing to hear.

Not because I want her to live in denial, not because she thinks I’ve got better, not because I hide it from her, but because I want her to be able to forget. If not all of the time, then certainly sometimes.

I want her to know that although MS is there, it won’t take her over. That my illness has never been her world, her responsibility or her fault.

It’s not easy. She’s a thoughtful and sensitive child who is very conscious of other peoples’ emotions. Who knows if she always would have been this way or if growing up with MS has made her more empathetic.

It is incredibly difficult for a child to grow up with a parent affected by any sort of ill health. A parent who cannot always be consistent, a parent whose future is uncertain, a parent who might appear to be leaving you bit by bit, day by day.

That’s a pretty hard mix to get to grips with as an adult – almost impossible to imagine how it must be for a child.

What we’ve found helps as a family are these simple things:

* honesty – our daughter knows that mummy’s body doesn’t always work properly, that she might need to take sudden rests, that she takes medicine, that sometimes she has to miss things. Age-appropriate honesty and open conversations can help stop or lessen some of the imaginary fears.

* attitude – having limits is nothing to be ashamed of, we all have them in varying ways. But recognising and readjusting your limits then carrying on with pride and confidence is a really good message.

* planning – children need to feel there is always someone there for them. If I can’t do a school pick up or party drop-off then we ensure a family member or friend can. It may not stop the worry that I’m not able to do it, but it eases the uncertainty a bit.

* appreciation – being able to live in the moment is something kids can do really well. I’ve learned a lot from her on this and we often talk about all the things we are grateful for. A friend has a daily positives blog which does this fantastically well and it really makes a difference to your mindset.

* love – she will never be short on this.

I know my daughter worries about me, I know she probably always will. But just for the moment, I’m glad she’s able to forget.

:: Don’t you worry ’bout a thing by Stevie Wonder

Vanity kills

Right.

That's it.

I'm having a hair cut.

My crowning glory - which has absolutely never been glorious - has been reducing in volume for the last few months and although we have had some stresses, I think there may be another culprit...

The official side effects of Tecfidera don't list hair loss, but there's far too many anecdotes on Tec forums of hair breaking, thinning and full-on shedding for me to not believe there is a link.

So Friday will be haircut day and I fear with the amount lost, I'm going to have to go short.

The last time I had a crop I was a sensitive teenager at secondary school and was emotionally scarred by a dinnerlady who, on seeing me line up with my friends, asked "Oh, are you sitting with the girls as well?"

Not a great confidence boost to a 13-year-old with spots, a sizeable nose and now, apparently, a masculine aura.

But there's no getting round it, my hair is falling out so the scissors are going to have to get a workout.

And I shall be wearing everything feminine I can lay my hands on for the foreseeable future.

:: Vanity kills by Codeine Velvet Club