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

Wrapped up in books

Yes! Friday off!

Spending it with endless pots of tea and piles of comforting books, dressed in a deeply appropriate t-shirt.

Oh, the absolute joy.

 

:: Wrapped up in books by Belle and Sebastian

I know him so well

It's been MS Awareness week in the UK, so time to share again my own hugely sophisticated diagram of how it affects me.

I haven't had time to update it, but if I had, would be including a permanent MS hug and a reduced ability to walk.

Sigh.

Also, despite this week's song choice, I don't see my MS as a 'him' - or indeed a 'her.'

Just as some sort of malevolent creature hell bent on wreaking as much havoc as possible.

And, unfortunately, I do know it so well.

:: I know him so well by Elaine Paige and Barbara Dickson

Smokers outside the hospital doors

It's been an eventful couple of weeks.

My reaction to the vaccine continued, until last Thursday I was advised by my GP to go to A&E.

Turns out my symptoms (persistent headache, weakness, off-balance, nausea) were close enough to the warning signs of a rare blood clot that they didn't want to take any chances.

So, with sandwiches, water and mask dutifully packed, I was dropped at the doors.

Eight hours and a series of quite wonderful doctors and nurses later, I was discharged.

Bloods had been taken, cannula inserted (and removed) and CT had been done. Everything looked fine.

I'd been given the double check of a scan as although my bloods looked ok, the other symptoms gave the doctor pause for thought.

In the end, as the CT was clear, it was put down to MS symptoms.

I had to let everyone know my medical history and this was greeted with varying responses by medical staff - nonchalance, sympathy, interest and the obligatory 'you look well.' 

Which was actually unexpected on this occasion, considering I was being wheeled to a CT scanner with a rapidly bruising cannula insertion in my hand at the time.

When all was done and dusted, I made my way to the entrance, waiting for my lift home.

Once there, peering out the window at those souls brave/desperate enough to go out in the chilly evening air for a cigarette, I was joined (at the required social distance) by an older chap.

A few pleasantries exchanged as we waited for our respective lifts before he asked me if I was likely to need to come back.

This, in turn, led onto a health history exchange, and the discovery that he appeared to know a surprising amount of people with MS.

Some were doing 'very well', some were 'struggling' and one was 'dead within three years.'

I'm pretty hardened to this stuff now, but good lord, why would you share this example with someone? 

Do people not notice, not associate, not care?

Or do they just start down one road, realise with horror what they're about to say, but be utterly unable to stop their mouths forming the words?

I don't know. Maybe I should have asked him. But it's a bit awkward isn't it?

Moments later his lift turned up and off he went.

Leaving me slightly nonplussed but reflecting that if you're going to be casually reminded of your mortality, is there anywhere more appropriate than at the doors of a hospital?

:: Smokers outside the hospital doors by Editors

Coming around again

Had the Covid jab.

Felt mildly hungover for a day, tired the next then BAM!! full-on side effects which felt suspiciously like a relapse for five full days.

If there's anything people with MS don't need, it's a reminder of just how shit a relapse feels when they are simply taking something that is meant to be helping.

Crushing fatigue, completely off-balance, pain flare. And bloody MS hug which has never really buggered off, but came back with avengence.

I was forced to give in and take time off work.

Reported my reaction to my MS team. They'd had similar feedback from a few patients. Others had been fine - would be fascinated to see if there are any patterns to this.

But in the meantime, it was back to the well-practised relapse protocol of bed, limited movement and Radio 4 Extra to see me through the days.

Obviously not looking forward to my second jab, but, equally obviously, will be having it.

At least I had my two fuzzy nursemaids watching over me.

Coming around again by Carly Simon