Hit me with your best shot

It's been a manic fortnight - work has been 8-7, five-days a week. I've been called for jury service, I've done a randomised Covid test and I've got a vaccine slot booked.

Plus admin appears to be coming out of our ears for daughter's school needs and extra-curricular planning.

I've not worked at this intensity for quite some time and I am absolutely feeling the effects.

It's a straight-up fight between being so exhausted I want to weep and being proud of the fact I've got through things.

Not necessarily a healthy balance.

I've pulled on almost every reserve of energy I have during the week and then had to dredge further at the weekend for all the other stuff.

At the minute I'm keeping fingers crossed that my request to defer jury service is upheld. Just don't fancy risking my ropey health in a pandemic courtroom, much as I would like to fulfill my 12 Angry Men duty.

Other things taking my energy are the carrying out of a randomised Covid test, sent through the post and couriered back. Not a massive deal really, just yet more organisation. 

And then there's the good news of a jab - but not without the inevitable MS admin of double checking with nurse (off sick) and having to therefore relay questions to busy neurologist.

Checking views on how useful it may or may not be with depleted lymphocyte levels and then weighing that up against risk of not having the jab - on both personal protection and general vaccine supply levels.

In the end, I've decided to have it at this juncture, even if my lymphocytes may not be in tip top condition. And, all being well, it will happen next week.

Hoping for a (relatively) effective outcome of the best shot we have to get our lives back to some kind of normal.

:: Hit me with your best shot by ADONA (I know Pat Benatar's is the original, but I really like this version.)

Distant sun

Oh thank goodness. A bit of warmth and sun.

And with it a bit of hope that the Covid tide might be turning.

Awaiting news on my jab - want it, but Cladribine impact means I may need to hang on until my immune system has reconstituted to a useful level.

In the meantime I shall get myself into the sunlight that this weekend is promising and drink in the Vitamin D.

:: Distant sun by Crowded House

(Song for my) sugar spun sister

Yummy, it's Pancake Day.

Or, as I like to think of it, Edible MRI Day.

:: (Song for my) sugar spun sister by The Stone Roses

Sandstorm

Since Christmas it feels like my husband and I have been living under a suffocating volume of work.

Not able to see a clear way ahead because there's just too much on top of us.

While I'm obviously grateful to be in work, the current situation, combined with the awfulness of the past 12 months, is really starting to take its toll.

I'm in quite a lot of daily pain and on occasion struggle to think and/or talk.

My husband who is usually an astonishingly calm and patient man is starting to fray at the edges.

I'm not sure how much longer we can keep this up and I have no doubt we are not alone.

We're neither of us frontline staff, so heaven knows how they are coping, but we're just about getting to the end of our joint tethers.

Unsure what the answer is really.

Although it's possibly in one of the online well-being workshops our employees are running. That we haven't got time to attend.

Sigh. 

Thanks for that little vent. Better out than in.

:: Sandstorm by Cast

Everybody hurts

Received my shielding letter last week.

It's the first one I've had, as during Lockdown 1.0 neither the severity of my MS nor my Tecfidera taking saw me classed in the clinically extremely vulnerable category.

This time round, Cladribine plus very low lymphocyte levels, have put me there.

It's a not altogether pleasant experience to be classed as officially extremely vulnerable.

But then I think the pandemic has put us all at risk to one degree or another.

Certainly within my friendship group we have seen job losses, deteriorating mental and physical health, relationship breakdowns and high levels of guilt and stress.

And I'm sure it's a story repeated everywhere.

There is no easy answer and there is going to be no quick fix. The repercussions of the past year (and the months to come) are going to be with us for a long time.

There are glimmers of hope - the vaccine roll-out is underway and we're heading towards the spring, a change of season which is always welcome.

But in the meantime there's nothing we can do apart from be a voice on the end of a phone line, a sender of letters, emails texts and the sharer of stupid GIFs.

We're all going through something unprecedented and actually, we're all extremely vulnerable.

Support is available at Mind and via the MS Society's wellbeing hub.

:: Everybody hurts by REM

Opus 17 (Don't you worry 'bout me)

Seventeen years with MS this week, seven things I've learned:

* persevere

* but know when to rest

* swearing is good

* but laughter is better

* be realistic

* but never lose hope

* high heels are safest when seated

:: Opus 17 (Don't you worry 'bout me) by Frankie Valli and the Four Seasons

Don't let me be misunderstood

Well this is an odd one.

I received a message the other morning from the mum of one of my daughter's old school friends.

No hello, no how are things, no context whatsoever, just a link to this article.

It's a first-person piece about a woman with MS worrying that her partner will end up being her carer.

That he won't see her in the same way and may feel stuck in the relationship. He reassures her on this of course.

It's a good article, very readable.

But bearing in mind that although this mum knows I have MS, I have never discussed it in-depth with her and certainly not this aspect of it.

I was honestly so taken aback at the fact that she would have seen it and just pinged it on with no kind of explanatory message, that I just laughed.

And then showed my husband who pulled one of those emoji-esque quizzical faces.

But really, what was she thinking?

Maybe she thought it would reassure me in case I was worrying about this? However, given the fact we've never discussed it, for all she knows, what this article sharing might have done is actually now put the thought in my head.

Did she think it was showing understanding of my MS and she was letting me know she was thinking of me? In which case, chocolates not random links, surely.

Did she mean to write some kind of contextualising message that would explain this random sharing? But like everyone, stuff got in the way and she never got round to it?

Or is this how she sees poor little me and my trapped husband? 

I can only presume she thought it would be useful, but without any explanation I have decided to file it under the long list of unsolicited 'help and advice' I have received from people over the years.

I didn't message back because just a ?? didn't seem to quite cover all my thoughts.

Maybe I'll just send her a link to this instead.

:: Don't let me be misunderstood by Nina Simone