Christmas wrapping

Crikey, that's another Christmas wrapped up and now we're enjoying the inbetweeny bit.

Time to spend important hours with family and friends.

Time to be thankful for what I have and to stop dwelling on what I don’t.

Time for me to wish you and yours a very peaceful and healthy new year.

:: Christmas wrapping by The Waitresses

Cold hands (Warm heart)

So, let's talk snow.
There's been four days of relentless sky-swelling deluges where we live and as a result even the most unloved streets look like Christmas cards.

So white, so pretty, so perfectly pristine.

So effing, effing cold.

Good lord, I hate the cold.
And, by logical extension, the snow.

Yes, I know that makes me sound like some sort of selfish weather Grinch who isn't thinking of excited children's hopes* for fun days of gambolling in the park with sledges! And snowballs! And cheery snowmen with wonky carrot noses and scarves stolen from indulgent grandparents.

But there's a good few MS-ey reasons why I have come to hate the white stuff that spread far wider than the travel disruption, the school closure palava or our cats whining incessantly that they don't want to go outside and relieve their distended bladders and glaring at me as if the whole sorry mess is ENTIRELY MY FAULT.

And these reasons are:
* legs seize up leading to painfully slow progress
* brain seizes up leading to, er, painfully slow progress
* speech slows down leading to garbled pleas for help, immense frustration and flapping of increasingly stiff arms like some sort of deranged penguin

The reasons why the cold causes such difficulties have been outlined in this interesting and helpful article from the MS Trust.

For the moment, at least, it looks like the cold snap is here to stay. So while it is, I'm bundled up in layers, working from home (typing in fingerless gloves like some sort of modern day Bob Cratchit) trying to regulate my temperature with a constant supply of tea.

I might have a hot bath too - although as the heat triggers Uhthoff's phenomenon and quite often causes temporary loss of vision in my damaged eye, perhaps I won't.

Argh, the impossible balancing act of multiple sclerosis.

On reflection, perhaps I'll just wait it out wrapped in hay lying prone in a cardboard box like a Blue Peter tortoise.
But with rather more gin and mince pies than our scaly televisual friends may have been allowed.

:: Cold hands (Warm heart) by Brendan Benson 

*I am actually hoping those children are having a lovely time in the snow. I did brave the garden with my daughter to build a small snowman. Then had to lie down under many blankets for a couple of hours, but it was snowtally (sorry) worth it.

I'm still standing

This week's blog has been written by my brilliant daughter. 

She's nine and is the most thoughtful and caring person I know – I learn something from her every day:

When I'm at home I forget that mummy has MS, I always do baking with her and we have made some amazing cakes.

This year has been good and bad - mummy had a eye patch for the start of the year but now she is on tablets to try and stop her having relapses.

She can play with me a lot more and she doesn't get as many headaches.

We can go the park and also decorate the Christmas tree together.

Last Friday, mummy was helping set up at the Christmas fair at my school and I was at guitar, when I came out of guitar she came and gave me a hug and a kiss.

The reason why I chose this song is because I have always known mummy when she has had MS. She has had a few relapses and I have been with her.

So it means that I am still standing even though she has had relapses.
I know we will be ok even though it is sad to see her ill.

:: I'm still standing by Elton John

Tumbling down

One of the common issues with MS is dreadful balance. Another is struggling with the impact of the cold.

Totally logical then, for the woman at the centre of one of the first documented case of the disease to also be the patron saint of ice-skaters.

Bizarre, but true. Here’s the short version of the story*:

Saint Lidwina of Schiedam was born in Holland in 1380. At fifteen, in a severe winter Lidwina was skating with friends when she fell and broke a rib and was put to bed in her family home.

She never fully recovered and became progressively more disabled and ill throughout her life. It is believed that she became paralyzed with the exception of her head and left hand.

Until her death at 53, she suffered intermittent pain, weakness of the legs and vision loss - although with some apparent periods of remission. A pattern indicating symptoms typical of MS.

After her death, she was canonised with the slightly unusual double whammy of patron saint of ice skaters and the chronically ill.

I’m sure there are some important things to draw from Lidwina’s story – by all accounts she continued to live her damaged life with grace, acceptance and thoughtfulness.

I’m also pretty grateful that I don’t live in a time without MRIs, neurologists and drugs.

But mainly I’m going to be very careful when considering any ice-skating invitations.

:: Tumbling down by Midge Ure 

*Read the longer one here.

Mathematics

As previously discussed, me and maths - we're not great together.
However, the one aspect of the m-word that I do wholeheartedly admire is that of the Venn diagram.
This little logistics lovely has huge creative possibilities and it's made me smile to have a go at creating my own.
And so, with apologies to John Venn for tweaking his idea for my own purposes, here is my Venn of MS:

:: Mathematics by Cherry Ghost

Possessed

So, this is unusual.

I've had a real run of energy and optimism over the past few weeks and have been able to function reasonably well at both work and home.

It's a bit odd. I'm pretty sure it's not caffeine-fulled (although with the amount of buckets of tea I get through in a day it should be) nor is it because I've suddenly cracked the puzzle of how to get that magical, elusive, sleep that actually refreshes rather than the usual type that doesn't particularly make a difference.

I don't know the reason and I almost feel I shouldn't analyse it too much incase I spoil it.

Quite a lot of my years with MS have involved tracking and tracing and questioning and planning. Calculating the balance, looking for answers and chasing the theories.

Quite a lot of my years pre-MS involved the same, just for different reasons.
It's become second nature, I think it's just part of who I am.

But this time, I'm trying really hard to purely accept and enjoy and appreciate.

It's honestly not easy for me, but just for the moment, I'm trying to shut my racing brain up and simply be grateful.

:: Possessed by Vegas

Yoshimi battles the pink robots

I’m beginning to feel slightly victimised by technology.

Not the usual wifi blackspots, refusal of the computer to talk to the printer when it’s sitting RIGHT THERE or the losing of my mobile in wet and unpleasant places.*

But a personal, inbox invading victimisation.
I shall expand:

Part of my job is to write content for our organisation’s website and we’re just introducing a new system to help us organise the site behind the scenes – planning the content, images, blogs, films, campaigns, social media and links.

So far, so good.

But as part of the new regime, I also get emails from the system which are meant to help and encourage the planning work.

The last three emails have had subject lines that could only have been written with the intention of filling the recipient with confidence and courage for the working day ahead.

No word of a lie they have been:

• Your brain isn’t always right
• How to manage the chaos
• Your brain is lazy

Given that my brain isn’t right, is frequently in chaos and could feasibly be viewed as lazy, I felt unfairly targeted by this unprompted electronic judgement.

However, when I actually read the things, they give some quite helpful tips about inbox management, communication and structuring the working day.

But the most interesting of their tips were those that could also be applied to a life with MS and they are:

• More rush = more fuss
• Stop saying yes
• Get out of your own head

I think the first two tips are fairly self-explanatory. I don’t always follow them, but I really should.

The third one is more complicated and despite the theme of last week’s entry, doesn’t refer to gin.

In the workplace, so the tip suggests, it’s about getting your goals out of your muddled head and down on paper so you can work towards them with some sort of clarity.

In the personal space I think it’s probably pretty much the same.

The only snag being that I find any kind of forward planning difficult with MS due to the sheer ruddy unpredictability of it.

Going away next year? Unknown. Coming out at the weekend? Unknown. Working tomorrow? Unknown. Watching the TV tonight? Unknown.

But I think the overall premise is pretty sound, so I’m going to give it a go, starting with the smaller, more immediate targets.

Goal one: find the paper. Goal two: find the pens. Goal three: remember what on earth it is that I wanted to do with all this pretty stationery. 

:: Yoshimi battles the pink robots by The flaming lips

*I’ve dropped two phones down two toilets in my time. I am a techno-idiot who doesn’t learn from her mistakes. I managed to salvage one by bunging it immediately in rice and praying to the god of communication (Hermes, not Vodaphone.)

The rice worked, but – top tip here - the helpful man in our local phone shop tells me the most effective wet phone saver is cat litter. I know, remarkable.

Gin soaked boy

Auuuuugh.

It's November. Again.

I am dealing with the deeply unpleasant but sadly inevitable turning of the calendar by referring to last year's coping-with-November-list and adding a new mechanism.

So coming in at number 11, and despite what Hogarth thinks, it's gin. Lovely gin.

:: Gin soaked boy by The Divine Comedy

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

Can't stop the feeling!

We had a lovely holiday in Pembrokeshire last week – ice-cream, sunshine, sandcastles, actual castles and defeating the most unnerving villains ever created at the Doctor Who experience.

As this was a British summer holiday, it wasn't always hot and there was rather a lot of wind, but this didn't deter my daughter and I from donning our wetsuits (useful to fool other beachgoers into thinking you're more active and capable than you actually are) and attempting to bodyboard.

I was pretty determined to try this as part of my newly found gung-ho approach to tackling fear. 

So, with a kindly donated bodyboard, we toddled off down to the sea and had a go.

Oh my word, it wasn't glamorous.

Daughter did well in the shallower waves, keeping balance and managing to stay afloat. I needed to go further out because 40-something-lying-stranded-in-the-shallow-water looks vaguely pathetic. Especially if you're wearing a people fooling wetsuit.

So out I went and onto the board I got. And the waves came. And I got pretty impressively drenched. It was bit scary, very flipping salty, but absolutely great.

Coming out of the water with my eyes closed and flailing around for a towel/tissue/husband's shirt to wipe my face, I suddenly recognised a feeling.

Not one of pride, not one of success, not even one of minor disbelief that I was on a bodyboard in a wetsuit – but an actual feeling. In my actual feet.

I haven't felt anything properly in my legs and feet since a significant relapse I had after my daughter was born almost nine years ago. All nerve pathways controlling temperature and sensation were utterly scrambled.

Nine years of not only being unable to tell if the bath water is hot or cold, but not even recognising that I'm in water. Nine years of being unable to tell if the radiators are on or off or if I'm walking on stone or carpet.

I've cut my feet on glass I didn't realise was in my shoes and unknowingly burned blisters on my legs when a hot water bottle burst in my sleep.

But this holiday, I could feel that the water was both gloriously wet and pleasantly cool. That the rock pools lying in the path of the sun were deliciously warm.

On returning home, I can tell without using my hands that my feet are cold. I know what grass feels like on my feet again, I can step on something sharp and know it hurts.

What I don't know is why I can suddenly feel again. Has it taken nine years for the damage to fade? Has it been incrementally improving without me realising? Has the Tecfidera played any part?* What on earth happened to make me feel again?

I'll ask my MS nurse when I next see her, but until then, this is one time that I am actually happy to be experiencing cold feet.

:: Can't stop the feeling! by Justin Timberlake 

*Unlikely, it's a disease modifier, not a disease mender.