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

The metre

Social media is increasingly becoming a brown and sticky Marmite-esque topic – love all the benefits or hate all the downsides.

For positive campaigning, bringing people together, offering support and providing information it's really great.

For negative comparisons, lack of human contact, time wasting or (not that I want to reference this man) FAKE NEWS it's very worrying.

And sometimes, in life's crappier moments, it can just be a really useful thing.

Recently I was contacted by a friend via the social media megatruck that is Facebook.

Although we've only met in person a few (mainly drunken) times, I've admired this person from an electronic distance for quite a while as judging by their posts it's clear they are great. From their chosen shares and interests, I thought we may also have a fair bit in common.

Unfortunately, more in common than I had imagined, as last week I had a message out of the blue saying they'd just received an MS diagnosis.

I am saddened every time I hear of someone receiving their non-negotiable entry into this club, but this one really touched me.

After a couple of messages we arranged to speak on the phone – and we talked for quite some while.

And apart from being right about thinking they are great, what struck me most was hearing my own voice from 13 years ago coming down the line – the shock, the fear, the questions and the floundering in a vast universe of unknowns.

Thirteen years ago my diagnosis was broken to me by a gp who really didn't have a clue about MS. My friend was given the news at the foot of a hospital bed infront of two medical students.

Otherwise, for both of us, that was pretty much it. As with too many others MSers I've met, we're told we have an incurable and progressive disease and then we're left to get on with it.

Yes, I have had good experiences with nurses and neurologists over the past 13 years, but my general feeling with this (as I suspect with many other chronic conditions) is that it's actually outside the medical community that we do most of our learning - whether that's through online forums or in-person support groups.

It's the network of new friends that we've unexpectedly made, it's the bonding discussions of shared experiences, it's the personal questions that we can ask them without fear or embarrassment. 

It's the grace under pressure, the dark frontline humour and the genuine understanding that help get you through.

Building this MS world of connections and friendship – be it through social media or in person – is like creating an intricate shimmering filigree which can surround and support you.

And when you do find yourself in the non-Marmite brown and sticky stuff, this delicate web can spin itself into a pretty strong safety net.

:: The Metre by Powderfinger 

Army

I hit thirteen years with MS yesterday.

I know, exciting times.

So in honour of this inauspicious occasion (although an occasion nowhere near as inauspicious as the one happening across The Pond today) I have compiled a little list of things I’ve learned.

1. Eye patches are cool: well, they’re not are they, let’s face it. But they might end up being one of the aids (temporary or otherwise) that will make your life that bit easier. Same goes for all those other medical appliances that I try not to look at in the catalogues, but that one day, when I’ve dealt with my pride, might help me.

2. Advice is helpful, but it really is okay to trust your instincts: By all means seek advice, seek it from medical professionals, fellow MSers, online forum boards, friends and family. But you don’t have to agree with it. If something doesn’t feel right to you, or for where you are at that moment in time, listen to yourself.

3. Humour is a remarkably effective lifejacket: This is so, so important. It’s not that you have to embark on a stand-up tour as soon as you are diagnosed or turn every crappy incident into a gag-filled after-dinner anecdote, but do try and retain your ability to laugh. Multiple sclerosis takes enough off you, don’t let it take this precious weapon.

4. A bit of hope is stronger than a lot of fear: I’ve written quite a lot about hope in this blog and where I stand with it. I maintain that it’s helpful and I’m trying to keep it central as I continue with the Tecfidera.

5. I owe a massive debt of gratitude to my family and friends: obvious, but incredibly, incredibly important. I didn’t know, 13 years ago, quite what the hospital admission was going to mean. I didn’t know it was going to shape my working life, my family plans or continually force subtle shifts in my perspective and personality. But I do know that without my family, my friends, my husband and my daughter I would not have got this far. Thank you all for the phone calls, the desire to understand, the surprise presents in the post, the meals cooked and delivered without me having to ask, the childcare and the pep talks. Thank you for the night-time hugs, the daytime support, the rides to hospital, the cups of tea, the steadying arms, the physio teamwork, the care, the concern and the laughter.

This post is dedicated, with love, to everyone in my army.

:: Army by Ellie Goulding