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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Do you consider yourself disabled?

This was a question I was asked on a web form recently.

It was a required field, and the only answers were “yes” or “no” so I couldn’t skip it. It brought up a wider question in my mind about how I and others percieve my illness and if I or other people would class it as a disability.

It’s such a massive grey area. Perhaps that’s why it’s continually left for us to personally decide rather than a blanket decision being given in endometriosis’ case.

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Guilt is an understandable side effect of chronic illness

I have no issue with telling you that even now there isn’t a week that goes by where I don’t experience some sort of guilt because of living with endometriosis.

It’s a silent side effect of living with a chronic illness. Being poorly all the time makes you dwell and worry about things in a way that someone else wouldn’t. This is because feelings like guilt do their best to isolate you further and further until you feel like you can’t cope. 

It’s really hard to master those feelings, but I wanted to talk about the most common forms of guilt I experience, and how I do my best to let those feelings pass. 

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I’m not “better” I’m simply managing better

I’ve had a recent spell of good health in the past few weeks. I’ve attributed it to being able to cycle into work so I have a regular, gentle amount of exercise each day.

As superb as that is, all that’s meant is that my pain has been partially replaced with unending fatigue, which I am working hard to manage and balance out.

However there’s no escaping that my recent success has led to some around me wondering and even declaring that I must be feeling better, or even that my chronic illness is cured.

Wouldn’t that be nice? Truthfully though managing a chronic illness is a lot of a hard work and so is keeping your symptoms at bay so you can enjoy a little pain-free time once in a while.

It’s really hard to explain to others that any respite from my pain or fatigue is usually temporary. If I’m making my hard work to manage my illness look easy that’s not happening because that I am better, but because I am managing it better.

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10 things I learnt about my chronic illness from volunteer work

As well as working full-time with endometriosis, somehow I find the energy and time to volunteer some of my time each week to a local community housing project. I’d be lying if I said the last year and a half I’ve spent doing this hasn’t been extremely difficult for me, but I’ve also met some amazing people and hopefully improved my local area in the process.

Working for free does require some different skills to my day job though – namely trying to persuade people to volunteer their time and keep them motivated and engaged while staying passionate about the work myself.

As it’s time I’ve given up out of my precious well time, volunteer work has only reminded me of some really important things about my illness and I thought I’d share them with you.

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Keeping your independence when you have endometriosis

Thanks for the suggestion Claire! You can ask me to write about a blog post for you too! :)

Independence means different things to different people. Before I got ill I thought independence was the freedom to do anything I wanted, an endless horizon of possibilities just waiting for me to find them.

I’ve had to re-adjust what independence means since my endometriosis diagnosis, this appraisal of what independence hasn’t changed so much as my expectations are now a little more grounded. Growing up we’re told we can do anything that we put our minds to if we worked hard enough. Now with endometriosis it feels like some days are a fight to get back to that inspiring feeling of my life feeling like it’s truly mine.

I don’t feel like this anymore because I’ve realised over time that the best way to become the master of your own destiny again does mean asking for help from others, so you can save your energy for the things you really want to do.

Because chronic illnesses like endometriosis does mean giving a little of your independence away – but always to the right people.

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People treat you differently when you’re ill

When you become ill with a chronic illness like endometriosis, no one mentions how people will perceive you differently.

Many people don’t mean to of course, but to some people you’ll always be that person who is always poorly rather than just you.

It’s one of the hardest ideas to grapple with many years into illness. The concept that you want to be treated normally, but have different needs to other people and occasionally need some support from others, and that means telling people that you need help.

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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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So how do we keep going?

I wrote in my last update about how important it is for others to keep asking questions about our chronic illness, to give us the opportunity to share the details and difficulties of our illness.

Well today I want to talk to you about the most frequent question I get asked when someone realises I am chronically ill.

How do you cope?

That’s easy I say, I don’t have a lot of choice in the matter.

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Instead of silence, ask someone with a chronic illness lots of questions

If I decide to share the details of my chronic illness with someone, the worst thing that someone else can do is respond with silence.

Many of us weigh up the decision to keep quiet about how hard each day can be – but it tires us – it weighs us down slowly, and the knowledge that this illness will never leave you bores into your mind.

So keeping silent when you ask someone how they are and they take the decision to answer – that denies the person who is unwell from sharing further information with you. It makes them feel guilty for trying to lighten their load.

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Endohope

My name is Michelle and I've been living and working with endometriosis for five years. I hope to provide some hope for this illness through practical advice and discussion of this awful disease.

Twitter

  • Well done! We've almost made it to the bank holiday weekend and a lovely long break :) My plans: move as little as possible. 20 hours ago
  • He's definitely the unsung hero of bit.ly/QtozlS :) 1 day ago
  • Want to thank my partner @Fattony12000 for his ongoing help. He pulls me through my worst moments every single day and never complains :) 1 day ago
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