Toxic

Covid finally caught up with the Scrambled household recently.

While we've avoided it for almost two years, it has been seeming inevitable for a while - daughter's class has been affected by Delta (pre-Christmas) and Omicron (post) so the chances of avoiding it have been slim to non-existant.

And when the double line showed up on her test a couple of Sundays ago, it was only a matter of time before we all had matching LFTs.

And so it was. Fortunately, it was mild. Daughter bounced back within a couple of days. Husband and I had what felt like an extremely heavy cold.

My taste and smell went, but seems to be heading back, but my word the tiredness. So a few days off work then a week of dragging myself back through it and here we are.

Being CEV (blimey, the new language we have) I was able to access an infusion of the new antivirals. So into hospital it was for a couple of hours to receive them.

But not before frantic calls to my MS team to check I could actually have them - because, almost unbelievably, I'm in the middle of Cladribine treatment.

Yes - after waiting 16 months for my lymphocytes to struggle back to clearance level and finally getting the drugs - I was taking my last tablet of week one on the day Covid was confirmed in the house.

The timing is soap opera-worthy. As is the fact I took day one of the course EXACTLY 18 years to the day that I was taken into hospital for my first relapse.

But my MS nurse cleared things (in, I have to say, the quickest ever call back I've had) it so onto the infusion I went. Hard to know if it helped, but better to have than not.

So now it's just a case of making sure LFTs remain negative before I start my second week of the drugs that come with cheerfully yellow warning stickers.

Will they work? 

Unknown, but hoping.

:: Toxic by Britney Spears

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

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

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

Going underground

Coronavirus, obviously.

It's bewildering and frightening and almost unbelievable all at the same time.

We're at the very start of isolation measures and people who have never had to do this for extended periods of time are now going to have a very small insight into our lives, particularly our lives during a relapse.

So to reflect this - and to keep a bit of sanity - here's a piechart of things that may help during this time.

:: Going underground by The Jam