Chronic Illness and Work – a few notes

Today I am paying a price.  It’s not too big a price, I am lucky. It’s pennies, not pounds.  Still it is a price none the less and the bank account is a little smaller than it was before.  Today, if I am lucky, I will find ways to replenish stocks, to balance the books again so that tomorrow I am ready to go back out there.  But there are no guarantees.Заборыvisualcage

For three years now I have lived with chronic illness.  I don’t like to admit this actually, it’s like Voldemort, don’t want to name the bastard.  In fact my Dr once made me cry when he told me off for my persistent denial at having a long term condition.  I didn’t….don’t…want to give in.

But life is not a battle and the truth is I do have a long term condition.  And I am learning everyday how to manage it better.  But there are no absolutes, no definite answers, nothing is black and white or certain. And this causes confusion.  For me, yes, because I don’t know what I can get away with before I trigger a flair up, but also for others.

How is it I can manage to do some things and not others.  Why on this day can you do x, y and z but today you can’t even manage a, b and c?  People don’t understand or assume you are lazy or lying or both.

And the answer?   I don’t know.

Seriously.  I just don’t know.  My body is a mystery to me these days.  It’s not reliable.  It tricks me, lies to me, lets me down.  But it’s mine, so I have to work with what I have to the best of my ability. What this means, most of the time, is learning the art of pushing through.

When is it safe to push?  When is it not?

Truth be told I HATE having to push through.  It scares me.  What if I push too hard and I end up really floored.  What if I can’t get up? What if I am so ill I can’t cope?  If you’ve been there once then the fear of going back never really leaves you.

Towards the end of my time as a teacher the hardest part was having to push through.  Push through pain, nausea, bone tiredness.  Teaching is not the sort of job where you can have a quiet day if you feel a bit off, there’s no hiding by the photocopier available, no work from home option.  Each time that bell rings a class is going to file its way in and if I was in pain then it was just awful.  Nothing to be done but try and push, always wondering will this be the day when it goes too far and my body breaks.  But there were worse things than that. There still are.

It’s the silence. It’s not being able to tell anyone because no one wants to hear that you are not well AGAIN.  Who cares.  And because people don’t believe you.  And back then I didn’t really have much in the way of proof.  Of course now I have a big black and white report from a specialist but it doesn’t change much, people don’t care, they still don’t believe you.  And why should they, it doesn’t make much sense.

If last week you managed to do all that then why today can’t you do anything?  If you can run a youth theatre rehearsal all day then why can’t you just get a job? If you can manage to go to France and do a week of physical theatre work then why are having to go to bed this afternoon?

It doesn’t add up.

But here’s the truth.  It doesn’t add up for me either.  I don’t bloody know.  I wish I did.  God I miss my old life, knowing my body would always work, not having to deal with constant pain, being able to do things that I loved to do, not having to chose between two options because you know you can only physically manage one of them.

But here are some ways that it might make more sense.

Firstly – I do pay a price. Most times.  Yesterday, yes, I rehearsed all day.  By mid afternoon I was in pain.  That night I was useless. Today, I am treading as carefully as I can.

I can handle teaching my youth theatre on a Monday night only if I clear my Tuesday.  So I can go to bed if needed, and it is often needed.

In France, yes it was six hours a day of movement based work.  But I had full autonomy over that movement.  I could work gently if I needed to, I didn’t need to push hard. Secondly I had no other responsibilities. So no cooking, cleaning, childcare.  I worked, I rested. That was it.  And I also had two days where I did struggle, I was sore.  I just had to work with it best that I could in that moment because the work was beautiful and I loved it.  That always helps.

I am in bed by nine most nights and I sleep until seven.  I do all I can to keep my diet plain and simple so my nervous system doesn’t kick off.  I can’t run anymore even though I loved it.  No gym either.  They just set me off.  So it’s yoga or nothing and yoga has been a bit of a life saver truth be told. I love moving and I hate not being able to do as much as I would like.

I know people wonder often why I don’t just go and teach again.  I just don’t believe I would survive it, physically, emotionally or spiritually.  I might be wrong. Never say never and the parts of the job I loved I miss but right now no, I think it might break me and I am already a bit to broken for that.  I don’t think I would mend a second time.

At the same time there is a sense of lostness that goes with not really having a job.  Yes I deal with all the childcare and yes I run the youth theatre but I am not employed and sometimes that feels a bit rubbish. Like I am a bit rubbish because no one is paying me to do things. I don’t much like it.  But I am lucky, lucky that on most days I can minimise my moments of having to push through pain, I can take breaks when I need to, I can monitor my pain levels and adjust accordingly.

I will say this before I go.  If you haven’t had to deal with chronic illness then you don’t know.  It sounds obvious but really, you don’t.  You might think you do.  You might think you’d just get on with it that you would be different somehow, that you would push through not matter what. I can tell you now you would not or if you did you would not do it for long and still be on your feet.  Our health is a precious,  fragile thing and once it is broken you don’t get to play hard anymore.  Not because we are lazy, not because we don’t want to but because we want to keep ourselves in the game the best we can.

I am playing the game the best I can. It will not always be enough.  And I am sorry for that.  But I am painting my pictures with the colours I have left, I will make them as bright as I possibly can.

2 thoughts on “Chronic Illness and Work – a few notes

  1. I’m constantly amazed by how much you manage to do with your health being the way it is – and I mean that in a ‘go you!’ way not a ‘well if you can manage THAT much then obviously you’re faking it’ way. I don’t have a chronic health condition so can’t really understand (as you say) but my husband has CFS so I understand, to a certain extent, some of the difficulties of living with a chronic condition. He has to be careful that he doesn’t do too much – where others can push through it he can’t, or rather he can but it would have consequences that are not worth it (mostly). And I know there are doubters out there who just don’t get it at all. Honestly I think you’re inspirational. To do so much, be so creative and so giving. What you do has massive value regardless of whether you’re ’employed’. Keep on truckin’ xxx

    1. Thank you Maddy, that’s kind. I can only imagine that living with someone with a chronic condition has it’s own set of challenges and yes, totally hear you on it not being worth pushing. It’s one of the reasons I quit alcohol, it made me so, so unwell for days, even just a few sips. Really not worth it!

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