That's what we can do

I haven't mentioned my work for a little while. I think it's because I've been too taken up with my recent/lingering relapse and all its varying sensory delights.

But as I am (hopefully) coming out the other end of this one - hug has gone, sensation is almost back to what passes for normal for me, I just need my hands to start fully cooperating again - it's time for a work update.

I am currently self-employed and am working on two different projects for two different organisations. They are both very interesting.

It's not been easy carrying on working during the relapse. If I were an employee I would most likely have taken some sick leave, but I work for myself so if I don't work I don't get paid.*

Not ideal for someone with a chronic illness obviously and something I'm going to have to really consider as and when these projects come to an end.

But today I am working. I am travelling down to London for a few days for one organisation, having been at my other one on Monday. The juggling aspect of this appeals to my brain and makes me feel like I'm doing my bit to keep it active and engaged.

But the effort is taken to keep on going during this relapse has been incredible and looking back now, I'm not quite sure how I've managed it.

I think it's because I'm a) ludicrously proud, b) ridiculously stubborn and c) it's my choice - something which is really, really important when living with a disease which can strip you of them.

Work is important to me and I'm lucky that I'm currently in a position with my health where I can still choose to do it. I am aware that this may not always be the case.

I know a number of people with MS who are not currently working and who warn me that I shouldn't I tie my self-esteem up with my job.

They are absolutely right, of course and there have been times over the past few weeks where I have really struggled with what I've chosen to do.

But I've gritted my teeth and - against all reason and good sense - carried on. Because it's my choice and I'm just not ready to choose to stop quite yet.

:: That's what we can do by Deacon Blue

*I could apply for Employment Support Allowance, but the thought of the forms just makes me want to cry.

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.

.

Crash

After 13 years you'd really think I'd know better.

You'd think I'd know that if I try and do too many nice things, I will inevitably get a massive MS kick reminding me that I can't. Or at least I can't without incurring a penalty of some sort.

And so it was this weekend.

On Friday I had a girlie lunch, then after school I took my daughter swimming because that's the secret quiet time at our local pool when you get to ride the slides without a huge queue. 

This is also a top time to find a changing room per person rather than squeezing two slippy people into a chlorine infused cell and carefully co-ordinating putting pants on in a way which avoids elbows-in-face/knee-in-chin/disfiguring bra-twanging injuries.

It was great, daughter went down the big scary slide for the first time on her own AND jumped in the deep end. Very proud.

Then hubby and I went out for the evening to see our very talented musical friends do their very talented musical thing at a gig. We'd volunteered to help man the​ doors to take payment, email addresses and give out CDs.

(To be completely honest, I'd volunteered for this purely because I got to stamp peoples' hands with that exciting band name stampy thing that you get at gigs. I may have got a bit carried away with the stamper enthusiasm and imprinted the band name on one poor bloke so hard he split his pint, but never mind, because: stamper joy.)

Then on Saturday I took daughter/budding fashionista on a lengthy shopping trip which was surprisingly free of I-want-this-deeply-inappropriately-sloganed-t-shirt stress.*

Then Mother's Day (question: why the clocks going forwards and the loss of hour's sleep on this of all days?) was a very nice lunch and afternoon with mum and dad.

And the penalty for all this loveliness? The resultant crashes. By Friday night my speech had slurred and my legs had gone weak, by Saturday afternoon pain had flared up and by Sunday morning my left eye had become even more blurry than usual. Plus the boring, boring battle of exhaustion. Suffice to say work this week has been a bit of a struggle.

But this is the dilemma when you have a chronic illness – is the payback worth the pleasure?

The choice between knowing you'll feel like total crap afterwards but grabbing the opportunity to do it NOW because you may not be able to next time.

Yes, I am aware that I should be a bit sensible, measure out my spoons and just suck up the fact I'm missing out. And sometimes I do. 
But sometimes I just don't want to.

So this weekend I made my choice and I pushed my luck, so I will have to ride out the consequences. 

Because they are my friends, this is my family and she is my daughter.

And that is always worth it.

:: Crash by The Primitives 

*Although apparently not free of cringing. I was deemed embarrassing mummy when playing a lunchtime game of song title charades in a busy cafe. Jumping across a busy restaurant while trying to represent the song Leap of Faith is apparently not a cool thing for a grown woman to do. Who knew.