Thursday, 17 May 2018

haunted foot

This week I had an appointment for FES (Functional Electrical Stimulation) at the local Gait and Movement Laboratory. It was the STRANGEST thing!

When I recently saw my MS nurse (in order to write a piece of evidence for my PIP tribunal), she carried out a few strength and mobility tests. On that basis, she felt that FES might be worth checking out to sort out my foot drop:

Functional electrical stimulation (FES) is a treatment that applies small electrical charges to a muscle that has become paralysed or weakened, due to damage in your brain or spinal cord. The electrical charge stimulates the muscle to make its usual movement. In MS it is mostly used as a treatment for foot drop, where disruptions in the nerve pathways between the legs and brain mean the front of your foot cannot be lifted to the correct angle when walking.
From the MS Trust website

So earlier this week I went along to my appointment. And it was completely bizarre.

After they'd watched me walk for a bit (AN ASIDE: why are these types of clinic so bloody far away from the car parks??), they attached two electrodes to my left leg (long time visitors will know that my left leg has traditionally been the main cause of my walking problems).

The electrodes are attached just below the knee where they can stimulate the nerve which goes to the muscle responsible for lifting the front of the foot. The electrodes are controlled by a switch which goes in your shoe - when your foot is lifted a charge is sent to the muscle which then lifts your foot, therefore preventing foot drop!

We had to spend a little time fine-tuning the charge and the position of the electrodes. When it was on my bone and directly on the nerve it was so intense and dramatic I was worried my foot might snap off! And it was undeniably weird to see my foot wildly lurching back and to the left of its own accord.

But eventually we seemed to hit the sweet spot - although I was a little disappointed that the nurse didn't get the reference when my foot had a particularly violent twitch and I asked if she'd turned it up to eleven.

I did a little more walking and the two people assessing me could see that it was helping - at first they'd thought I might need to have a set of electrodes on each leg. But almost immediately both legs were working better (although the muscles in my left leg were knackered - I don't think they've worked properly for years!).

We all agreed that it looked pretty positive for an initial test. So now I wait for them to get me back in for more tests, more fine-tuning and a fitting.

Monday, 14 May 2018

in between days

Tysabri infusions need to be administered four weeks (or more) apart. I've mentioned before that in the run up to my infusions I can start to feel a little bit wobblier. And this has been backed up by conversations I've had with MS nurses and other patients (mostly online).

Earlier this year we booked a much needed summer holiday. Because I'm that sort of loser (or just one who is organised), I realised that I would be due to have an infusion the day before our flight back.

As we'd booked so far in advance (a rarity for us), I spent a sleepless night in bed working out that if I had my infusions a day earlier each month I would be able to bring my dose forward a whole week by the time our holiday came round. Obviously I did not take the following facts into account:
  • The Tysabri clinics are only on Wednesday, Thursday and Friday
  • You must leave at least four weeks between infusions - you can't bring them any earlier
After letting me explain my drawn-out but impossible plan, the nurse explained that my only option was to add an extra week somewhere along the line.

I've been waiting for a month which offers the least disruption possible - avoiding the birthdays of both Mrs D and Little Ms D, in particular.

So the long-awaited month is now upon us!

I should have had my infusion last week. And now I’m trying not to chew my fingers off while I wait for my slot to come up in a bizarre, drug-free limbo.

I'm well aware that this has the potential (if you're an over-thinker - hi there!) to become a self-fulfilling prophecy of bad-vibes and relapsey symptoms.

But truth be told I'm feeling ok. I'm still swimming when I can and have started to use the Wii Fit again for the first time in ages. The balance games are particularly good and because I'm that kind of competitive wanker I was really pleased to achieve a new high score.

Oh yes, I'm all about Gamification - see also my unbroken 590 day run on the Calm meditation app.

But I am trying to take things a bit easier (and pushing myself a little less) in the run up to the infusion this week.

Plug me in, please!

the author awaiting his next infusion - honestly, he feels FINE...

Friday, 4 May 2018

life in the city can be so hard

Aside from griping about PIP (still waiting for my tribunal date), banging on about Philadelphia and HUconnexion18, I've recently been doing some really exciting work with an old friend.

He's a member of the Department of Social Services at Loughborough University and he got in touch to see if I would like to co-author an academic paper for an upcoming conference.

But wait a minute Steve, I hear you cry. What kind of Academic qualifications do you have, aside from an unwavering belief in the rightness of your opinions on music?


The conference is on DISCO and he wanted me to analyse some musical extracts as part of the paper. We've met up a few times to discuss our approach and he sent me some music.

does "independent scholar" just mean "opinionated git"?
And parts of my brain which have been dormant since I graduated with a borderline-useless degree in English and Music have woken up!

I've been analysing melodies and orchestration and putting forward my opinions about what they actually mean in conjunction with the lyrics.

It has been so cool to be working on this so I'm eternally grateful to John for getting in touch with me.

Even better, our paper has been accepted for the conference at the University of Sussex next month.

Sadly I won't be attending (these things are EXPENSIVE) but I think John will be much better at presenting our paper. I have been known to waffle, especially when nervous.

I'm hoping this will open an entirely new career for me - ideally involving lounging around and pontificating about music.

Maybe I'll eventually appear as a panel member on Front Row. Or (LIFE GOALS) as a talking head on a BBC Four music documentary!

We can but dream.

Friday, 20 April 2018

temporary skin art

I decided to treat myself to a bit of skin art for the summer months.

I've always known that I'm too indecisive to ever settle on a permanent design for a tattoo. So this kind of MS-specific temporary skin art is perfect for me. If I change my mind I know it'll be gone soon enough!

People ask if it's painful but the lucky thing about this kind of application is that you don't even know it's happening until it's done. So no need to worry about the discomfort in advance!

Rather than get it done at home I went to a new place for this one - I simply lost my footing and fell onto my Mother-in-law's kitchen cupboard.

The whole design is just over 3 inches wide. It's pretty abstract and the colour's already started to fade but I'm still really happy with it.

What d'you think?

Monday, 9 April 2018

from our own correspondent

Nearly two weeks since the end of HUConnexion18 - it all seems like a strange and beautiful dream now, that we did THAT and met so many awesome people.

There were some great moments and I really want to get these down and out of my head before too much time has passed.

God forbid that it could feel like I'm banging on about it even more than I am!

The first time I went to New York I was worried that the incessant "Have a nice day"s would be too much for my hard-won British cynicism to take. It turned out, I loved it - it seems fake in this country but to my surprise people genuinely seemed interested in other people's experiences and stories.

I've been writing for Health Union / for around five years now and it was great to finally meet people who I'd only communicated with by email (who were so amazingly welcoming and grateful that we'd made the journey). Similarly, the other contributors - just fantastically positive and proactive, regardless of how far down the road of their health "journey" they might have travelled.

There was one session which was all about the different communication needs of health communities. The bit that stood out for me (as the writer of a sporadically-popular blog that gets a tiny number of comments*) was that the people who visit a site and don't leave a comment actually read posts and can get the most benefit from them.

* because obviously, everything's ultimately all about me, right? Yeesh, what a loser...

This reminded me that community is what happens when you talk to someone (face-to-face, online, whatever) and the other person JUST GETS IT. And this also reminded me about how important that feeling was when I was first diagnosed. 

On the day we came home there was an AMAZING session led by Laura Hope-Gill, whose own late-onset deafness prompted her to focus on the healing power of what she calls Creative Nonfiction.

Her talk was about the fact that we all carry these stories with us, about our own tragedies and the trauma of our diagnosis. And these are important to us and the way we deal with the situation.

BUT we have the power to decide what form our story takes - it's not the only story we have to tell, so we shouldn't get stuck in a loop, endlessly writing and rewriting our trauma. I made a note of this quote from Laura's talk but not its author:
The bad news is you’re falling. The good news is, there is no bottom.
I LOVE that!

Laura also talked about the importance of listening properly to others' stories - the way she talked about it, when someone tells you their story it's really a privilege.

I know I'm guilty of responding immediately with a quick-fire, "Oh, I know, that's happened to me...", because I like to think it makes the speaker feel less alone. Key takeaway quote:
Self-disclosure, sometimes mistaken for mirroring, is not listening. It is a substitution of one's own for the other's experience.
All it does is shift the focus back onto you - it is not helpful.

One more quote from Laura's session:
The world will come to an end. But love and beauty will remain.
Heavy. But overwhelmingly positive.

Much like HUConnexions18 itself. And I've not even covered all of the sessions that well-and-truly squeegeed my third eye. I've already started planting seeds to ensure we get an invite to the next event in 2019.

And anyway, we also managed to do a bit of sight-seeing, as proved by this picture of me hanging out with Benjamin Franklin.

(Although I should've tucked my shirt in...)

Saturday, 31 March 2018

a lovely time was had by all

We left Philadelphia and HUconnexion18 on Tuesday afternoon, landed in the UK on Wednesday morning and I've been trying to make sense of my notes ever since.

Despite an almost hallucinatory level of exhaustion and displacement, we had a fantastic time. We met some amazing and inspiring people and made a number of new friends along the way, both Health Union staff and fellow patient advocate contributors.

I'm still trying to unpack all my thoughts and the lessons we learned. There will likely be a number of disparate blogposts about our three nights in Philadelphia - about the logistics of travelling with a wheelchair, about owning our own stories of chronic illness as opposed to being doomed to endlessly repeat the story of our diagnosis, and about the value of community and the validation that comes the first time somebody just gets it.

On an entirely personal level, the fact that we were able to travel so far on our own is a massively big deal.

If you had told us last summer, when I was up to my ears in relapse, that 9-10 months later we would be travelling over 3,000 miles to attend a conference, we would've laughed in your face. But now we know we can do anything we set our minds to.
my new besties - spot the British teeth!


Monday, 5 March 2018

how do you think it feels

This morning I got a bumper fun pack from my friends at the DWP. This contained:
  • Copies of both of my PIP applications
  • Notes from both of my assessments
  • The DWP's notes on the applications, including the rationale for turning me down in each instance
  • Their responses to both of my requests for a Mandatory Reconsideration
All topped off with the following charmingly abrupt statement:
I've considered all the available evidence and considered which descriptors apply for each activity... I agree with all the descriptors selected.

I oppose the appeal and ask the Tribunal to dismiss the appeal and confirm the Secretary of State's decision.
It was not a great start to the day.

Every time I get one of these - and since January 2017 there have been a few - I immediately go into a mood of equal parts rage and despair.
"I don’t know if I can keep doing this any longer"
I can't help thinking that this is exactly the response they're counting on.

I end up ranting to whoever is closest to hand (apologies to the divine Mrs D), then firing off messages to my Dad or on Twitter [FULL DISCLOSURE: it's usually always both].

Then I take a deep breath, look through it all again, listen to the thoughts of the people around me, and think:
"There's no f**king way I'm giving up on this now"
I wish they'd let me stop! I'm not trying to bilk the system and I can think of a million things that I'd much rather be doing.

But if that's the way it has to be...