Why pain free days are weird

Man trying to ride a bicycle with his head bandaged up.

If I had to estimate I’d say that I am in pain 95% of my waking hours.

Most people I know are shocked by this, but pain is my new normal. What’s unusual for me now are pain-free days. I average about four to five pain-free days a year. Not being in pain is weird. Not horrible, just weird. I’m not so much relieved about the pain being gone as worried about when it’ll come back.

It’s something I hear a lot from friends living with chronic pain, but it’s not an area of chronic pain many people talk about.

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We are not to blame for our long term illnesses

A photograph of an ancient asian scholar in the British Museum.Acceptance is an important part of living with chronic illness. Part of acceptance means realising that you have to put aside your feelings of “why me” aside so you can begin to appreciate what you still have rather than mourn what you’ve lost.

In the first few years of diagnosis (and even after then) many people will approach you upon hearing that you’re unwell with their suggestions for what might help or solve your pain or fatigue.

I still consider it the height of arrogance to approach someone who’s been unwell for years with a simple or quick fix. The reality is that no one really knows the causes of many chronic conditions, so by that logic no one can easily solve the issue without knowing what caused it in the first place. It’s well meaning but sort of implies you’re ill because you’re not doing something right — when in reality, you’re trying your best.

Your illness is more than likely something you were born with, or something that you have a genetic disposition for. You just got unlucky that it was activated at a random point in your life.

You’re not to blame for your chronic illness, and here’s why.

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Getting a diagnosis of a second long term illness

Everywhere I experience chronic pain.

Everywhere I experience chronic pain. Endometriosis in red and JHS in purple.

Earlier this month I got a letter from a rheumatologist confirming that I had Joint Hypermobility Syndrome (JHS). This is the second long term condition diagnosis that I’ve received. My first was my diagnosis for endometriosis in 2009.

It didn’t really come to a surprise for me to discover I had another long term condition, because I’d been experiencing pain that didn’t quite tally with endometriosis for quite some time (almost two years). However it was getting worse and I didn’t know how best to manage this new type of pain.

Not everyone with one long condition will go on to develop a second or third, but some of us do, and I know what you’re thinking, “I can’t manage with one long term condition, how could I manage with two?”.

It’s rather like your first diagnosis to be honest – you don’t have a lot of choice in the matter.

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Looking for help with endometriosis?

Welcome! I’m Michelle and I’ve lived and worked with endometriosis successfully for eight years, and so can you with the right help. If you’re newly diagnosed (or waiting on diagnosis) here are some good places to start:

Endometriosis is hard work, but you can claw back some quality of life with the right support. Talk to me, I’m here for you.


How to get a good nights sleep

My two cats Ada and Curie having a nice nap together.

My two cats Ada and Curie having a nice nap together.

Before I got sick I battled with insomnia for many years. It started with living with several extremely noisy housemates at uni that meant what little sleep I did get had to be managed around what quiet time they’d let me have.

Over time this led to such anxiety with getting to sleep that my mind whirred as I tried to rest, so although I’d regularly be exhausted I couldn’t get any rest at all.

I felt powerless about something that should be effortless, and when I became ill with endometriosis (and started full time work) it was one of the first things I had to sort out to get some quality of life back.

Happily I’ve lived with near perfect sleep since becoming ill, it’s one of the few areas that I don’t have much difficulty with anymore. Although much of my sleep can still be unrestful (and I have wider chronic fatigue problems).

That said, I didn’t quite appreciate how restorative my sleep was until I got a new set of neighbours that caused me several days of restless nights and I got flashbacks to a time that I’d all but forgotten about.

I know some of you must still be in the worst throws of insomnia, and I know how utterly miserable it can be so I’ll do my best to share what has helped me get over that particularly horrible hurdle.

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Some reasonable adjustments ideas for working with endometriosis

I wish I worked here.

Being able to work is a huge part of how I am able to manage living with the pain caused by endometriosis. This sounds counter intuitive, as working with a long term illness is extremely difficult, but it’s true. Working does make things easier for me in the long run.

Employment is a huge privilege that we don’t really appreciate until our ability to work comes into question. Working gives us liberty, independence and financial freedom. Now more than ever (as living with an long term illness on disability benefits is even harder in this current climate of austerity).

Most of the people I know who are ill desperately want to work or continue working. Continuing to work despite illness has helped me manage with pain, help me support myself and maintained my confidence and contact with the outside world. Illness is isolating and work helps reduce this isolation by honing your (still brilliant) mind on your job.

If you’re finding work hard with a long term illness or disability, under UK equality law you may be able to request reasonable adjustments from your employer. Laws differ from country to country but it’s mostly the case elsewhere too.

If you’re aware of this, but struggling for ideas for the sorts of things to ask your employer for, or if your employer wants to help but you’re not sure what to suggest, I’ll share some of the ideas that I have used or have helped me.

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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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Preparing for your laparoscopy checklist

This is roughly where your four incisions will be.

I know many of you found my preparing for your endometriosis laparoscopy update useful, so I thought I’d create a checklist that you can print out and take to around with you to make sure that you’ve gotten everything covered.

As I think of more things I’ll update this document so please share this page to anyone that you think may benefit from it.

You can download the checklist here.

Hope you have a happy surgery.



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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The importance of keeping a pain diary

My endometriosis pain in December 2014.

The New Year is a great time to get into the habit of keeping a pain diary.

It’s sometimes very hard to talk about pain, and people don’t always want to listen. However pain diaries are great because they make your pain very visible to people that have no idea how much pain you’re in. Since we have invisible chronic illnesses any way you can make your pain more prominent to others is a good thing.

It’s not just an box ticking exercise for your doctor. Pain diaries are a huge part of the reason I am able to manage with pain. I log the pain, and then I can relax and move on.

Plus I’m convinced the only reason I got my third laparoscopy this year because I was able to show my (year long) pain diary to my consultant. He saw how progressed and extensive my pain was and agreed to operate on me. No ifs no buts.

Pain diaries don’t take ages to put together, and once you get into the habit you’ll realise the benefits. The biggest of which is your own self compiled evidence on your pain experience that is very hard for others to deny.

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My name is Michelle and I've been living and working with endometriosis since diagnosis in 2010.

I hope to provide some hope for this illness through practical advice and discussion of this awful disease.