How to manage having too much to do (with chronic pain)

The differences between chronic and acute illness

On any given day I always have too much to do. There are more things to accomplish than I have hours of the day.

This was a problem for me before I got sick, but well people aren’t always forgiving about illness, but doubly so when they want work from you or expect you to meet certain commitments. People get stressed themselves and their expectations and demands grow. Basically people forget you’re ill and expect you to do as much as everyone else.

Being busy with a chronic illness is a nightmare. You have half (or less than) the energy of other people. You’re in pain all the time and you have to manage everything that life requires.

There’s no perfect solution to being busy and stressed, but the being busy while ill part? I might be able to help a little.

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If we’re not happy, we have to change things

Meeting Ed Miliband

As some of you may know I met Ed Miliband last week. He came into my workplace (which was entirely unexpected) and I got the opportunity to ask him some questions about what the Labour party’s plans were for people with chronic illnesses.

He seems like a nice man, and he was engaging and polite, but the opportunity to talk to one of the UK’s top politicians got me thinking more broadly. I started to dwell on the individual responsbility that each of us have to encourage those in power to help us.

I’ve personally lost count of the number of people who want their healthcare increased, or want some improvement in how they see their GP or specialist, want shorter waiting times, or more regular support for their illness but also want someone else to sort this out for them.

I’ve talked in the past about how the main way I’ve managed my pain using self care and pain management, well I think we should use the same principles to change how we want our illnesses to be managed and perceived by wider society.

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How to learn a new language while you have a long term illness

I am now several several years into living with long term illness. I’ve come to accept it’s presence in my life, but this has come at the cost of losing a little bit of my independence and freedom. I tried not to be afraid of the pain, but it’s clear that it has affected my ability to live as normal a life as I once did.

My pain started to manifest itself in different ways, I grew more tired, and less able to concentrate and retain things in my short term memory.

As a result I became less sure of my ability to learn new things, I didn’t think I could do something new and complex, because the pain would get in the way, and tiredness would make it hard to focus, and how could I fit it around illness and inactivity and an already busy life.

An then I thought are those actually obstacles for my learning, or am I actually coming up with excuses for why I don’t get on with it? Haven’t I always had excuses for not trying something new? Was illness just a bigger, newer excuse?

So I started reading about learning Japanese, and before I knew it was I was starting to read and write Japanese, I surpassed my own expectations, because instead of wondering why I couldn’t do something, I looked harder at what I could still do.

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How knitting helps me with my chronic pain and fatigue

Around the time I started cycling to help my endometriosis. I realised that in order for cycling to work I also needed a low energy activity to use for the days or moments where I couldn’t cycle, something to balance out the immense amount of energy I used in my first few months of cycling.

Something that would help me stay awake, but also keep pain away and fight off my disabling tiredness in the evenings.

So now I am a keen knitter. Knitting is perfect to help you manage with chronic pain and fatigue, and here’s why.

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Cycling with endometriosis – yes you can get on your bike with chronic pain

This is my bike (battery not pictured). It's a Kalkhoff Agattu C8 Impulse.

This is my bike (battery not pictured). It’s a Kalkhoff Agattu C8 Impulse.

When I’ve spent the last five years of my life explaining that I am in daily pain, I can tell people are thinking:

If your pain is so bad how come you can manage to cycle every day?

The answer doesn’t seem obvious at first, but after my first year of cycling now I can confirm that for me getting on the bike every day keeps my pain at a manageable level and has made my body stronger and more able to cope when the pain is at its worst.

It’s hard to imagine how that might be the case when you’re still in the worst throws of endometriosis pain, but I want to do my best to explain why cycling might be a manageable activity for some of us with endometriosis, and how it can be successfully accomplished despite pain and chronic fatigue. Crucially cycling has helped my mobility, fitness and independence massively alongside improving my sense of wellbeing.

I want to talk to those of you today who think an activity like cycling is impossible, too hard, too painful. The exact thoughts I had not one year ago, and why that might not be the case for every single one of you. If at the end of it it still seems too hard – that’s fine – but put this away for one day when that might not still be the case.

Lots of people say they’re willing to do anything to rid themselves of pain. So what I’m about to explain works for me. Ultimately though only you and your doctor know what treatments are best for you.

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How I learnt to stop worrying and relearnt to cycle

It's really important to be able to comfortably touch the ground on your bike.

There’s a brief moment in time, not long after you’re diagnosed with a chronic illness that you think your life is over.

All you had to judge your worth and your success in life was your experiences and goals so far, and the idea that you’re now flawed or broken somehow is just heartbreaking.

That’s not at all true of course and the first and hardest lesson in chronic illness is acceptance of your illness – the idea that it’s here to stay and no matter how hard this idea is to live with, you have to keep going with this new handicap.

Today I want to tell you the story of how I’ve successfully figured out the new limits of of my body, by taking up an old passion: cycling.

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