A mixtape for multiple sclerosis

A mixtape for multiple sclerosis

Friday, 10 July 2020

A forest

It has to be said that I am - without doubt - one for getting bogged down in the detail.

Bit shaky on the bigger picture.  Not great at seeing the wood for the trees.

At the minute, I have a pretty big wood that I can't see in the form of making a decision about my next MS meds.

I know I need to start some new ones. Tecfidera is sadly not working - as evidenced by relapses, scans and depressing conversations with my neurologist.

I'm JC positive so that limits my options and after reading and comparing what was left I had, in February (pre-Covid hitting the UK) decided on Cladribine.

However, thanks to the virus, the chances of a hefty immune-suppressant being prescribed any time soon are pretty slim.

If I did want to pursue it (which my neurologist isn't recommending) I'd need to wait a few months - and then be at risk of shielding if we get a second Covid spike.

Humph.

So my current option is Gilenya and I have a few reservations about it - which are rapidly growing to tree-size concerns.

The problem is that I am reading as much as I can find, looking at every little potential problem and what-if. Rather than focusing on the bigger point, which is surely: that Tecfidera isn't working and here's something that might.

I don't know, maybe I should just stop reading stuff and say okay. A friend of mine with MS has done this and just accepted the meds suggested without reading the fine print.

I think that's quite brave and I almost wish I was that kind of a person. But I'm not, I surround myself with trees.

On that subject - and at least this is one set of foliage I can do something about - our back garden is just beyond overgrown.

So we're having gardeners in next week (hopefully, be kind weather) who offer one of their services as as "jungles cleared."

If only there were people I could call in to sort out my MS wood.




:: A forest by The Cure





Wednesday, 1 July 2020

Don't speak

Unexpectedly, I have picked up some new work while in lockdown.

This is great, obviously, but also quite scary. I'm trying to pick up new stuff via technology I've not used before with people I can't meet.

It means all those new-work questions that you can usually grab someone and ask in the kitchen, now have to be via email/Teams calls or chats.

And it's a VERY busy team so I have no way of knowing when I'm interrupting people as there are no in-person clues.

It's work similar to that I've done before, but not for a very long time and I'm both out of practice and out of confidence. Plus my memory is not what it once was.

As such, I have found myself getting quite stressed out (never a good plan for MS) and very tired.

Both of these states of affairs combined last week into a Teams meeting in which I had spectacular MS word vomit.

Words were there - but not necessarily in the right order.
Meanings were clear in my head - just not necessarily once they left my mouth.
Hands were flapping - trying desperately to form representations of what I was trying to articulate.

It wasn't a good impression. And there was absolutely no chance of styling it out in a Virginia Woolf-esque stream of consciousness.

Oh no.

Trying to take a breath and ask myself some key questions:

Could it be going worse? Well, yes.
Could it be going better? Unquestionably.
Could I do it via mime? Tempting.


:: Don't speak by No Doubt



Thursday, 18 June 2020

Hanging on the telephone

Due to the ongoing gah of the coronavirus, many people have had their usual medical appointments cancelled, postponed or otherwise disrupted.

I'm no exception, which although not disastrous compared to some peoples' experiences, is a bit of a pain.

This is because:
a) my current drugs are not working and I need referring for others
and
b) my neurologist hasn't seen and assessed me for 18 months.

However, I have heard that my July appointment is (touch wood) happening and is likely to be over the phone.

This does mean that while I will be able to talk to my neurologist, it's not the same as having a physical examination - which is surely more helpful to everyone.

However, it can't be helped and it does mean I will avoid these jolly little tests:



:: Hanging on the telephone by Blondie


Thursday, 11 June 2020

The times they are a changin'

One of the many, many things Coronavirus has wrought upon us is a soundbitey phrase which is being repeated ad infinitum by politicians, the press and, increasingly, the public.

The "new normal" is now being bandied around like some sort of breakthrough wisdom, spoken with a near reverence for the way we're all going to have to radically adjust and adapt.

And yes, we will, there is no doubt. But for members of the chronically ill community, the concept of new normals is anything but new. We experience them with unwelcome regularity.

If I may take my own 16 years as an example:

• new normal: loss of confidence. Struggling with cognitive function, logical thinking and the easy retrieval of names, places, words, connections and directions is horribly familiar to people with MS - as is the subsequent questioning of your own capabilities. 

 new normal: loss of opportunity. I still work, but it’s not at a high level. It's hard to see how working part-time between relapses and increasing disability will lead to any huge career responsibility. Bye-bye security, bye-bye potential, hello enforced working life rethink.


 new normal: loss of choice. Ok, to be fair, it's not completely lost, but it is constrained. And it relates to the smaller things like a trip out (what's the accessibility like, where are the toilets, the resting places, how are the queues, what's the noise level like, how about the lighting) to much larger life decisions.

 new normal: loss of vision. Three bouts of optic neuritis have left me with damaged sight. There are many, many frightening impacts of MS, for me vision issues are very near the top.

 new normal: loss of control. MS hands make for poor tools. Fortunately for my communication needs, there is voice activated text. But, as I discovered during one memorably sweary exchange, my phone asterisks out the naughty words.

My personal tally of new normals have gradually increased over the years as my MS has progressed. And with each there has to be a grieving process to allow us to adapt and survive change. 


Our society's new normals will require the same process - for some it will be manageable, for others it will be very, very tough. 

But if those of us who are chronically ill have anything to share, it is knowledge, advice and experience. Because we have become the reluctant experts in this sort of normality and for us, it's just not new.



:: The times they are a changin' by Bob Dylan

Friday, 29 May 2020

The way it is

We were meant to be in Menorca this week.

It was going to be the first time we'd taken our daughter abroad; but thanks to Covid-19, we are here and not there.

So, what to do?

a) be grateful we're well
b) accept the circumstances
c) check the weather...
d) ...and confirm the temperature here is EXACTLY THE SAME AS IT IS THERE
e) blow up the paddling pool
f) pull on the swimsuits
g) use our imaginations because
h) is for holiday



:: The way it is by Bruce Hornsby and The Range

Friday, 22 May 2020

Fall at your feet

It's all got a bit much this week and I'm therefore struggling with knock-on symptoms.
The only way to deal is with a bath, a cuppa and some lovely music.
Enjoy this week's tune from some superb songwriters.



:: Fall at your feet by Crowded House


Friday, 15 May 2020

Lazy

I am in the lucky position (especially at the moment) of being able to work from home.

I work in communications and a lot of it is as you'd expect - sitting at a keyboard typing, hunched at a makeshift desk planning or Skyping into meetings and trying to say something useful.

At the moment I'm in the middle of writing and uploading some online training for a national children's charity. I've been learning some new digital stuff from a very helpful chap at a company in Serbia.

So the work calls have been a little different - usual chit chat about work, bit of weather comparison and then a resume of whatever new Covid-19 announcements have been made in our relevant countries.

Fascinating to see how different places are dealing.

So it's all very positive and very busy - but good heavens I am exhausted. And doesn't my MS know it

Numb hands, permanent hug, terrible balance - they're not new symptoms, they're all very, very familiar. And I know they're rearing their heads to unpleasant levels simply because I'm so shattered.

Really, what I want to be doing now is just being hugely lazy for, ooooh, about a week. Yes, just a week to be utterly and completely and unashamedly slothful.

And then I'll be able to get back into it.  Promise.


:: Lazy by Suede