Almost ten years after the onset of my first chronic pain condition, I finally got invited to a local NHS run pain management course. I’ve previously attended the Expert Patient Programme which was also extremely good, however it was not pain/condition specific. I began to feel like I wasn’t given the opportunity to properly assess how well I was managing my pain without a pain management referral. Other people experiences will vary, but my pain management course was an eight week training session on how to live with pain. It helps you manage flareups, start paced exercise, and help with load ..read more

To honour the end of endometriosis awareness week I got thinking about how and when endometriosis came into my life and how I managed with terrible periods for over a decade. I remember one occasion many, many years ago when I had to leave work, and my (female) boss looked at me accusingly and said “You’re not going home because of your period are you?”. Her tone said to me that she found that idea pathetic. I lied and said I had a tummy bug so I could get home without stress. I was young, and tired and not in the mood to start the debate about periods as I would now. But that question s ..read more

For the last four years I have lived with a third, undiagnosed long term illness. I have been getting sicker, and this had posed a new set of challenges and complications which could have possibly been triggered by treatment of my first chronic condition. Living with endometriosis is one thing, but living with an unknown condition is equal parts terrifying, upsetting, frustrating and lonely. You can’t read up on condition websites, you can’t join support groups and there’s no treatment options until you have a name. I want to raise awareness of the long-term limbo of being undiagnosed, a ..read more

I have a difficult relationship with sleep, not because I’m not getting enough, but because I enjoy it too much. It is by far the thing I look forward to most each day. I don’t enjoy being unconscious per se, but I do enjoy having a period of time where I drop the pretence of ignoring pain, and can just relax, and embrace rest. This post may seem a little defeatist than I intended. I just wanted to deconstruct the weird myriad of issues that sleep poses. I want to talk about why leaving that state is the hardest thing I have to do each day and why it’s different and more complicated than just ..read more

I feel like I am in a grey area when it comes to my health, don’t you? In the UK I hear lots of rhetoric in politics about how mental health needs to be a priority and disabled people with profound disabilities should already protected (are they?). I can’t help but feel that invisible chronic pain in anyone below 60 is still an elephant in the room that few in politics, media or health seems to be talking about or addressing. How much regular help do you get with a chronic illness? Very little I had certain expectations about how the the healthcare community would care for me when I was diagn ..read more

This is a lesson I learnt very early on in my endometriosis diagnosis. It started when the pain started, I knew something was wrong, but people started to try and explain the pain away. I’m reminded of it again with the diagnosis of my second condition. Living with people who are not unwell can be exhausting, as exhausting as the pain sometimes. I explain what living with chronic illness is like when it’s worth it, but on the whole living with illness means picking your fights with people carefully and largely muddling on through everyone else’s healthy status quo. Here are what I think are t ..read more

I’d been anticipating the arrival of Endo what for many months. Back when I donated to it on Indiegogo I hoped it would go some small way to explain the difficulty of living with endometriosis. I couldn’t have imagined that it would hit each of the notes and nuances of endometriosis so perfectly. What endo what does well It does a great job of packing in a great deal of really helpful and clear information about endometriosis in a short amount of time (54 minutes). Part of the reason I’m so pleased with what the films creators have done is the films tone. It mixes patient stories, with s ..read more

I’ve seen a lot of in the press and on social media in the last few years about how people shouldn’t turn up at Accident and Emergency (A&E) for illnesses that are not emergencies. However I think people in chronic pain or with long term illnesses have been all but forgotten in this rhetoric. I’ve never gone to A&E myself, but I know many people in pain that have, and their stories all share one thing in common – they went there out of total and utter desperation, and I am utterly sick of them being demonised for doing so. People often have no choice Firstly, of course there’s a ..read more

One of my readers asked if I’d like to share her story as part of endometriosis awareness month. She shares a powerful story about working with endometriosis that we can all relate to. Thank you for sharing your experience Grace.   Grace’s story My period started yesterday. No big deal you might think, it happens to every woman, every month, for about 35 years. Unfortunately for me, this is a big problem. This warns me that I’m about to experience around 24 hours of agonising pain, followed by several more of aching and exhaustion. You have to understand my normal to understand why my pe ..read more

This is a phrase I hear all the time – from me and the many women I talk to with endometriosis. It’s the phrase I’m crying out in my head when I say something I don’t mean to. It sums up my frustration really. As we all grapple with the conundrum of what bits of our personality are ourselves and remain ourselves, and what’s caused purely by pain. Pain is usually all I can think about now. I spend most of my time distracting myself from it and as such it feels like the pain is sometimes in control of how I say things. Thoughts often leap out of my mouth before I can filter it. Is this really m ..read more