Army of me

Do you sometimes look back on a period of time and wonder how you had the hours in the day and the energy to get through all the things in it?

If so, you'll understand the slightly shell shocked feeling of having got to the other side.

Even more so if you have a body that insists on fighting you every step of the way.

It's been two weeks of non-stop work, requiring long hours, lengthy meetings, last-minute requests and constant demands.

And in the middle of it all, my friend's funeral. Which was a very touching event.

It has, in short, been exhausting. And one of those times my husband thinks I have an army of myself stashed away to be able to command to deal with all the tasks.

I don't. But I'm pretty sure we all wish we did on occasion - foot soldiers to pick up the slack and captains to make the decisions.

However, all the work got done (some of it in an eye patch due to insane temperatures flaring my existing eye damage) and I'm now on leave for two weeks.

Company, stand at ease.

:: Army of me by Bjork

Footnote for this week's artist - I once won a nightclub competition at university for looking like Bjork. Anyone reading who may know me in real life can judge whether that was a fair assessment, or if the dark of the club and the drunkenness of the crowd may have played into the decision. Either way, I won a pretty dreadful bottle of fizz and then spent quite a few months of being referred to as Bjork around campus. There are far worse comparisons to be had.

Sailing on the seven seas

Well, what a lovely week of weather.

Sadly, we've spent it inside working, but last night we were let loose and went out!

But not just anywhere - we went out to a FLOATING GIN PALACE!!

(Alright, our friends had hired a canal boat and were adventuring along the waterways near to where we live, but they had said booze on board, therefore the description stands.)

And it was lovely - not only to see friends in actual person - but also to be out in the glorious weather taking things very easy at a top speed of less-than-walking-pace.

And because we drove around an hour to meet them, because the weather was beautiful and because we were on the water, it felt almost like a mini holiday.

And now it's the weekend and the sun is still blazing so the paddling pool will be out.

Yes, we have bits of work to do, and yes, there's always a huge list of house jobs, but the floating gin palace vibe has set me up for the weekend and I intend to try and channel that spirit (pun intended) for the next couple of days.

:: Sailing on the seven seas by OMD

Titanium

It's Disability Pride Month this month.

I'll be honest, I wasn't aware disabled people had a month in which to be proud, and I've been one for 17 years.

Either this shows a staggering lack of awareness on my part, or a larger one in society.

I'll leave that thought hanging.

But I also discovered we disabled people have our own pride flag, and I rather like it.

It's a little bit superhero, it's a little bit 80s retro, it's very slightly Bridget Riley. And all those are good things.

The meaning behind the design, by Ann Magill, is broken down into these parts:

Black background - a colour of mourning, to represent those who have suffered from Abelist violence, also a colour of rebellion and protest.

Zigzag/lightening bolt - how disabled people must navigate barriers and the creativity in doing so.

The five colours - the variety of needs and disabilities (mental, intellectual & developmental, invisible & undiagnosed, physical and sensory.)

The parallel stripes - solidarity and difference within the disability community.

So, now I know. And I shall fly the flag (metaphorically, I suspect, not literally.)

And I shall also take a moment to recognise that we should have a month of our own. A month to recognise and celebrate what we live with - every single day.

Because disability is with us for life. And that is nothing to be ashamed of. 

The ways in which we continue to live our lives - despite the hell our bodies throw at us and the varying and vastly misunderstood restrictions we face - is absolutely something to be proud of. 

:: Titanium by David Guetta ft Sia

We are all made of stars

A good few years ago, I went to a fatigue management course for my MS.

I didn't come away with any great insights, but I did come away with a new friend.

We continued to meet up after the course ended, and shared the frustrations of MS, the ups and downs in our lives and quite a lot of tea and cake.

This week I learned that she had suddenly died. She was just 45.

While she had MS, she had also been later diagnosed with epilepsy. As if one of those things wasn't enough to cope with.

And it was a large seizure that took her. 

The only thing I can hope is that it was quick and she is now somewhere at peace. Surrounded by her family and the cats, cakes and flowers that she had loved.

:: We are all made of stars by Moby

Stay

We've just had a sunny few days in Stratford, a place we absolutely love.

Usually it's just hubby and me making a day trip of it. Occasionally we'll manage an overnighter with theatre thrown in.

But this time it was a couple of nights with our daughter too, so slightly fewer tea shops and slightly more buying of near-teenage must haves.

It was a lovely chance to spend some time together that wasn't disturbed by work worry or house faff or general tedious admin. There was a lot of laughing.

The last time we went was just before the pandemic really took hold and the first lockdown came into force.

Back then I was reflecting on how my MS had moved on and, among the laughter and activity, this trip brought similar comparisons.

I know I'm progressing. I can tell by the amount of streets I can manage without a break, by the number of Tudor museum steps I can climb easily and by the help I now need to mount the huge Ferris wheel which offers spectacular views of Stratford.

What I don't want though, is for one of my favourite places to become the yardstick by which I track my deterioration.

However, rather than avoid it, we will continue going to Stratford, continue drinking ludicrous amounts of tea in its many cafes and continue making my way through its familiar streets.

MS won't stop, I know this. But if I can help Stratford stay as one of my happy places, then I will concentrate my limited energy on doing that.

:: Stay by Shakespeare's Sister

My silver lining

I'm having one of those horrible periods of worrying about a work thing.

Made somehow worse because I'm actually on leave this week and I'd really been looking forward to the break after being unwell with UTI-Covid-jab-reaction-shingles triple whammy.

But instead, I'm worrying.

I can quite easily get suckered down a wormhole of worry when it comes to work, despite my husband patiently talking me through why I perhaps don't need to.

But worry I do. I always have.

And I worry about work in a way that I don't when it comes to MS.

I will obsess about work - should I have done this, should I not have done that. What impact will my decisions have, what reaction will it cause. What if, what if, what if.

I obsess much less about MS.

I have often pondered about this difference - after all, of the two, it's MS that's with me longer and will hit me harder.

Perhaps that's the crux of it, perhaps it's almost too big to deal with and so out of my control, that worrying seems almost pointless.

I don't know. Perhaps the worrying about work is actually a really helpful distraction from the worrying about a cruel and relentless disease from which there is currently no escape.

Ugh.

So when put like that, perhaps I should view this current work worry as actually a (still quite rubbish) type of shiny silver lining, deflecting my attention from what is actually the much bigger issue.

:: My silver lining by First Aid Kit

Linger

In between last entry and this, I have managed to develop a UTI, swiftly followed by flipping shingles.

This is not my happy place.

The UTI was (hopefully) dealt with by antibiotics because, as anyone with MS knows, the two really do not mix.

The shingles though? GAH.

I knew that starting Cladribine meant they were likely to be a risk. And, when finishing work on Monday and getting ready for bed, I found a suspicious-looking rash across my stomach, this was my first thought.

So, next morning photos emailed to GP and neurologist have resulted in a diagnosis and antivirals.

Due to MS plus Cladribine, my neurologist has recommended a double course of antivirals so I'm currently swallowing what appear to be horse pills five times a day for fourteen days.

Feeling generally rubbish, as might be expected, as well as in a fair bit of pain. Although, weirdly, quite familiar pain as it's all the burney-stingy-sitting-on-nerves pain that MS has prepared me for so well. And so bloody thoroughly.

My main concern during this has been work and letting people down.

While what should be my main concern during this (as work has pointed out) is my health.

But it is so very, very hard to deal with this because every bit of time off work (and I had a few days recently when reacting to the Covid jab) means increased fear of being viewed as a burden, or not worthy of employing - which I already worry about as a disabled worker.

Added to which, I am currently a contractor, so don't have the security of other employees.

But panicking about all the above is not, the rational part of me knows, the best way to help myself feel better.

So for now it's a case of chugging down the (massive) tablets and hoping that neither the guilt, nor the nerve pain, lingers longer than I can face.

Pictured are the far more pleasant memorial shingles on Dobby's beach in Freshwater East. Fans of Harry Potter will know this is where the loyal elf took his final breath. We visited last summer - strangely emotional for a fictional character.

:: Linger by The Cranberries