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

Mr E's beautiful blues

A friend of mine has recently had to make a difficult decision.

We seem to be at the age now where our lives are full of them. Or maybe our lives have always been full of them – after all, who’s to say that the choice between the swings or the slide wasn’t just as difficult as the choice between renting or buying, children or career, staying or going – it’s just different frames of reference.

But during their decision-making process I received a text saying they’d felt resigned to the situation they had chosen - and it made me wonder (over-think) about the word they’d used.

People quite often say they’re resigned to something – fate, situations, having to take part in an office away day - I’m pretty sure I’ve said it myself. But exactly how resigned am I to having MS? And if I’m not resigned, what else might I be?

Resignation, based on my very limited pop-psychology reading, implies giving up because you've decided that there is nothing you can do about your situation.

It’s seen as a passive state of being with underlying sadness, disappointment and fear of the future.

A horrible way to feel. But not wholly unfamiliar.

Further reading tells me that the flipside of resignation is acceptance – not that you’re happy with what’s happened, not that you wanted it to happen, not that you don’t wish it hadn’t happened, but simply that you're able to acknowledge that it has happened. It is what it is.

Acceptance isn't easy. It asks you to let go of how you think things should be or how you wish they were, and to work wisely and effectively with your reality, especially when you don't like it.

The suggestion being that once you give up the resistance and denial, you can take the energy you were spending on struggling and use it to decide how to respond or what to do next. In other words, acceptance opens up choice.

Now I didn’t have a choice in developing MS, it careered rudely into my life and there was nothing I could do about it.

The only choice I had – and it’s turned out to be a huge one – was the way in which I chose and keep choosing to deal with it within the realistic parameters of what this disease does to you.

So I chose to tell people – my friends, my work, random strangers, I chose to have a child knowing it wouldn’t be easy, I chose not to - and then to - take medication, I chose to laugh at myself, be honest, write this blog and I constantly choose to push my luck.

But despite consciously making these choices, I’m still not sure how much of my MS I am resigned to and how much of it I accept.

I’m not even sure if I’m accepting of my resignation to it, or if I’m resigned to my acceptance of it.

Or, on the evidence of that last sentence, if I’ve suddenly turned into Tweedledum and Tweedledee.

I'm not sure I know what I think. Perhaps it’s time for a bit of honest reflection in the looking glass.

:: Mr E’s beautiful blues by Eels

*For what it’s worth, I think my friend has made the right decision and I really hope they find acceptance. They deserve it.

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The boxer

I’m celebrating Valentine's Day with a faintly embarrassing outpouring of affection, and here it is: I love my body.

There, I’ve said it. I do.

Don’t misunderstand me: I don’t stand in front of the mirror every morning and evening talking outloud to it and affirming its loveliness, I am British for goodness sake.

I’m also not saying it’s picture perfect even in the kindest of subdued lighting. But on the whole, I think it’s great.

And the reason I think it’s great, the reason I don’t hate it despite all the limitations it has or has the potential to have, is this: my body is not letting me down. A disease is letting me down.

In my mind, they are two very, very different things.

I see my body as an increasingly knackered team member that is still managing to turn out for my side.

In the words of those irritating Prescott botherers Chumbawumba, it’s got knocked down, but it gets up again.

Because even if, as the widely held theory suggests, MS is an auto-immune disease and my body is attacking itself, then I still prefer to think it’s simply a bit bewildered rather than just plain mean.

It can’t help the random spasms, it can’t help the skewed temperature sensations, it can’t help the stabbing face pain and it can’t help the thoughts-in-a-spin-cycle.

It is not my body’s fault.

And while it fails and falters, it also tries its very, very hardest to help.

So far, it’s managed to heal claw its way back from a number of pretty hefty relapses. Alright, it may never have been a 100 per cent recovery and alright, it might hold part of the damage back and unleash it again when I’m too tired/too cold/have a virus/sat in a hot bath for too long.

But generally, it’s on my side and it’s fighting very hard to stay there.

However, I am fully aware that this state of affairs is subject to change and at some point, my body is likely to stop healing quite as well as it has done to date.

There’s only a certain amount of times myelin can repair to an acceptable level before the damage really starts to hit and more significant and permanent disability develops. 

So far I have been lucky, I have repaired to a reasonable degree. Even if each relapse has left a lingering mucky footprint on my balance, pain, sensation, cognition or vision.

I don't know how much longer this ability to mostly repair will last. And honestly, it's best not to dwell.

So while it’s sometimes been on the losing side in the skirmishes, while it can’t always make me completely better, I would officially like to thank my body for repeatedly lacing up its gloves and stepping into the ring.

:: The boxer by Simon and Garfunkel

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 

Suspicious minds

We had an away day at work recently.

Sigh.

The very phrase strikes fear. No matter where I've worked, they are the kind of thing that I look forward to with rather less enthusiasm than I reserve for my smear test.

It’s the ‘fun’ activities, the sneaky feeling that everyone else in the room knows a lot more than I do about their jobs, and the having to make slightly awkward small talk with scary-big-boss while simultaneously trying to work out how the flipping hot water dispenser works.

(As an aside, I’m still convinced this ability to get the hot water from the kettle type thing with its inexplicably complicated push button type opening is some sort of ongoing test within our working lives which will one day separate the truly capable from the utterly, utterly hopeless and we will be pay graded on our hot water prowess. Or lack thereof.)

And, with the addition of MS, there is the constant extra struggle to concentrate and contribute without slurring, stumbling or giving the vacant thousand yard stare. Always a good one to bring out at 3pm when scary-big-boss asks you a fundamental question which could determine your entire working future at this organisation.

Anyway, as it happened, it wasn’t bad at all. The fun activities were actually fun and we had the benefit of a truly inspirational speaker, Dave Heeley – or Blind Dave as he is known. Find out about his incredible achievements.

I also had the extra surprise of being given an award for my work. I’ll quickly add that this is not a post to brag. This is a post examining my unexpected reaction to this very pleasant surprise.

This is to wonder why my immediate thought was: “They’ve only given it me because I’m disabled and they feel sorry for me.”

And it’s not just the award. In self-doubting moments, I also wonder if I only got my job because I was helping up some kind of inclusion representation on their employee database.

When did I start becoming so suspicious? Or self-doubting? Is this what 12+ years of MS has done? How much disability prejudice have I internalised without being aware of it?

It’s a dangerous route to go down because it means that I’m not separating the ME from the MS. And yes, I’m aware that – for larger or smaller, depending on the day – MS and I do have some kind of parasitic symbiotic relationship, but I don’t want it to become the relationship that completely defines me.

So I’m trying my best to kick down the nagging voice of doubt and instead accept the recognition on face value. Perhaps it’s not pity, perhaps it’s actually that I’m not really terrible at my job.

Even though I will never work out the secret hot water pay and grading challenge.

:: Suspicious minds by Elvis Presley

Jump

I’ve been off the Avonex for two weeks now in preparation for my shiny/scary new tablets.

I’ve never really minded the needles or the injecting. I didn’t have too many side effects bar an occasional headache and a few more balance issues than usual the day after.

As a medication, I was okay with it.

Unfortunately however, it was not okay with me and didn’t do the job I needed it to. So it’s farewell to the needle and hello to the tablets.

I had it all planned out nicely, I’d start Tecfidera the week before Christmas on the lower dose then up it the week after the big day festivities.

Yes, I realise that new meds over the most wonderful the of the year is possibly not the best present I could give myself when you factor in the potential side effects and lack of medical availability.

But the cunning thinking in this plan was that I have two weeks off work and would rather suss out the side effects at home than in the office.

So all was well. That is until I called my MS nurse today to check on tablet delivery – and found she’s been off sick for two weeks, will be for the foreseeable and therefore can’t sign my prescription. 

Now obviously, she is allowed to be ill, but argh, so much for best laid plans.

However, there is absolutely nothing I can do about it, so there is no point in getting (as my mother would say) het up about it.

This is a relatively new experience for me, this roll with the punches outlook.

Left to my own devices, I am a planner and worrier. I have plans and back-up plans and just-in-case plans. And a plan B for all of those plans.

But I’ve noticed that increasingly over time I have started to let those tightly gripped reigns go a bit – I don’t know if it’s age or parenting (where very few things go to plan unless you sign up to the Gina Ford school of thinking) or laziness or MS.

I’m very aware that stressing myself out over things I have little control over is neither helpful or productive.

So when it comes to the drugs, I’m just going to have to accept and move on – while enjoying a few more festive tipples than I’d though I might. Always a silver lining.

:: Jump by Van Halen

Footnote: we have one part time MS nurse and one neurologist in the densely populated area in which I live. They are trying to care for thousands of people and it explains why the wait for my annual neurologist’s appointment has now increased to 18months. I’m also aware that I’m lucky to have this level of access and treatment options. However, it is still not enough - but that is a longer post for another time. 

Girl on fire

So I ended my last post with hope and it reminded me of a book I’ve just read.

(Note – I realise I am a 40-year-old woman responsible for a child and not an angst-ridden teenager, but I’m don’t care what you think right, I’m a bit of a fan of young adult fiction. And I’m going to slam the door and stomp off to my bedroom to read it. I didn’t ask to be born.)

In the publishing sensation that is The Hunger Games trilogy, young heroine Katniss lives in a dystopian future and enters an unthinkable fight-to-the-death live action programme framed as light entertainment.

Without giving too much away, she turns out to be quite a symbol of hope for the persecuted masses who start to see her as the figurehead for a long overdue rebellion.

But behind the scenes, the film adaptation shows the head gamesmaker and top politician, the twisted minds running The Hunger Games, having the following telling exchange:

Seneca Crane: “Hope?”

President Snow: “Hope. It is the only thing stronger than fear. A little hope is effective. A lot of hope is dangerous.”

And this, I think, is at the heart of my own fight for balance. Not the physical MS balance, that’s a bit of a losing battle, but the emotional MS balance.

Throughout this whole MS journey* I have always strived to keep hold of hope.

I think this is a positive thing and it has often served as a good pep talk for my ailing body: remember, there’s always hope, remember, there’s always hope.

But I’m also conscious that eventually – in each relapse – there will come a point when there is no room left for hope.

Relapses are a perfect example of how a little hope is effective; keeps me positive, keeps me believing, keeps me going - and a lot of hope is dangerous; what happens when reality bites and I need to face the fact I’ve lost that bit of me for good?

Good question, back to The Hunger Games.

The final sentence of that conversation is: “A spark is fine, as long as it's contained.”

Perhaps that’s an example too – keep a spark of hope, but contain it within realistic boundaries. Keep hoping until you have to stop. And then start hoping you will gain acceptance.

There’s quite a lot to read into these kids’ stories you know.

Out of interest, the tagline of The Hunger Games is: “May the odds be ever in your favour.” Let’s have a little hope that’s the case.

:: Girl on fire by Alicia Keys

*Yack, by the way, to the word journey. I can no longer say it without believing I’m on a celebrity reality show.

Ac-cent-tchu-ate the positive

I had an interesting chat with my MS nurse earlier this year.

I’ve had a few of these, but in this particular one we were discussing upgrading my medication.

Background: It took me 10 years to agree to drugs (although when I was first diagnosed, we were still in the watch-and-wait era) but I finally had such a doozie of a motor relapse just after I started my new job that I agreed to Avonex. Twenty months later and another relapse shows Avonex is not working, so it’s onto either Gilenya or Tecfidera. I have yet to decide which side effects I fancy.

This latest relapse took the bulk of my colour and normal vision in my left eye and, because it’s my eyes, remains my scariest relapse yet. I initially panicked then cried a bit and then bought an eyepatch, carried on working and braced myself to wait and hope for recovery – if ultimately only partial.

I thought I’d done quite well with accepting my situation, until my nurse suggested to me that I might be in denial.

Oh.

Initially I agreed – she’s the expert and would know better than me.

But then I did a bit of proper thinking about that particular relapse, and to be honest, a bit more about MS in general than I usually do. And these are my thoughts – bit jumbled but let’s try:

It’s possible there are bits of me that might still be in denial, even after all this time, but I’m not sure that’s the full picture.

Some of my response is simply wanting to appreciate the moments when I’m ‘well’ - or at least the well I’m at now rather than the well I was pre-MS almost 13 years ago.

Some of it is that I’ve just considered myself to be quite lucky with my relapses and recoveries – recovery has never been 100 per cent, but it’s been enough - so I just try my very best to remain as optimistic as possible while also being very mindful to not take those recoveries for granted.

I think when there has been the degree of recovery I’ve experienced – or maybe it would be better described as the ‘degree of recovery that I am very grateful for’ (perhaps not the same thing as an impressive medical recovery) then I don’t like to dwell too much on what might or might not happen.

And I know that bits of me will never recover but I’ve just got so used to the parts that don’t work that I’m mainly just happy with those that do.

So if this is denial, then I guess I’ll take it.

If it’s acceptance, I’ll take it.

If it’s the power of positive thinking, I’ll take it.

Although that very phrase makes my entire body want to cringe.

:: Ac-cent-tchu-ate the positive by Bing Crosby