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

Emotion

In a desperate attempt to a) do some exercise and b) stop fretting, I asked for a yoga DVD* for Christmas.

Santa duly responded and I now have 90 minutes of beginners workouts which promise a healthier body and mind.

I have done them a couple of times so far and firstly, good lord I'm weedy if these are for beginners and secondly, I've realised what a gigantic bundle of stress and worry I really am.

To be fair, I think I was aware of both of these things, but I was astonished how it took just five minutes of a nice lady in lycra telling me it was okay if I couldn't do it all and it was okay to congratulate myself on what I could manage before it hit me.

I was even more astonished to find I shed a few tears.

Now, I am the first to admit that I am hugely emotional and apt to weep at anything even vaguely approaching sadness/joy/achievement/bravery/sacrifice/betrayal. Or, in fact, particularly touching adverts.

Set any of these to a soundtrack of stirring music and there's no hope.

But generally the waterworks are on someone else's behalf.

However, a few words from someone telling me that actually it's okay to just be gentle with myself was all it took for a few tears.

Not loads, not enough to drench the towel masquerading as a yoga mat, not enough to drip on the cat unhelpfully trying to get in the way of the downward dog.

But enough to make me realise I really need to look after myself. And that maybe I am worth a few minutes of kindness. 

But most importantly that kindness has to come from me. With or without lycra.

:: Emotion by Helen Reddy

* Yes, we still have a DVD player. We still have some cassette tapes too. Although admittedly nothing to play them on. A sentimental case full of them is in the loft.