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