Activism

Five ‘chronic life’ lessons I learned from walking 23 miles/ 37 kilometers.

/ Endo Lady UK / 5 Comments

Last weekend I walked 23 miles across London, as part of the ‘Mad Pants X London Challenge’, to raise awareness of endometriosis and funds for Endometriosis UK.

I’m happy to report that I managed to complete the walk! It took approximately 9 hours, 48,000 steps, 4 quinoa energy bars, 1 bottle of Lucozade, and a Wagamama pit stop to make it to the finish line. We (myself, and my Hertfordshire teammates Rosie and Jessica) managed to fund-raise £1515.24 for the charity (including gift aid), which was completely amazing and so much more than we were expecting. Knowing that we had so much sponsorship really helped to spur us on during some of the more difficult parts of the walk- especially during the heavy rain!

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Starting Line. Was so lucky to do this walk with such lovely people. Image credit: Endometriosis UK.

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It rained- a lot! But it didn’t dampen our spirits as much as our tutus. Image credit: Endometriosis UK

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Posing in beautiful London- almost there! Image credit: Endometriosis UK

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Finished! Total champions- bring on the wine! Image credit: EndoLadyUK.

It was a fantastic but challenging day, and I feel it was a huge achievement considering that I (and many of the other women on the walk) live with regular and/or constant pain and fatigue.  I knew it would be tough but figured it would probably pale in comparison to the physical and mental torture that endo has inflected upon myself and so many others. Upon reflection, the event has reinforced number of important lessons about living well with a chronic illness to me, which I have outlined below:

1.It’s totally OK to push yourself sometimes.
Walking 23 miles/37 kilometers in one go is pretty extreme. I knew that participating in this challenge would cause a massive fatigue flareup over the following week, and would make my pain worse than usual, but to be honest I didn’t care. While I’ve gotten really good at looking after myself and protecting my body from endo symptoms, I REALLY miss being the old adventurous and athletic me sometimes. I was ready for an adventure and to push my limits for a change, so I went for it regardless if the inevitable dire consequences. The massive sense of achievement and boost for my self esteem was totally worth a difficult week of recovery. Life is for living to the fullest after all, chronic illness or not.

2.But equally, you have to know your limits and work within them.
These days it is fatigue more than pain that is a problem for me, which clearly poses a challenge when doing a long walk. Rather than letting this *minor detail* put me off I knew that I had to work within the limits of my body rather than ignoring them by putting a number of strategies into place. These included doing lots of training walks to gradually increase my stamina, and making sure that we had no plans scheduled for the next day etc. While we all know the importance of being proactive and pacing for navigating chronic life successfully, it felt good to have such a powerful reminder of how effective such strategies can be for helping you to reach specific goals, rather than simply being something that holds you back from participating in life.

3.The support and kindness of others can lift you up to achieve great things.
The cruelty of life with chronic illness(es), especially ones like endometriosis and adenomyosis which are so variable in their pathology and symptoms, is that it can make you feel totally alone. With this walk, I was honestly surprised how much my friends, family, endo-sisters, and even strangers got behind us, because I honestly felt like most people in my life don’t understand or care what I go through on a daily basis. I was amazing the effect that people’s encouragement had on me, as I have grown used to primarily being my own cheerleader these days. It has also reminded me of the importance of getting behind my fellow endo-sisters/ spoonies in their endeavors, rather than just focusing on my own troubles. Together, we can overcome our illnesses and achieve great things.

4.It’s OK to say no.
I had wanted to do the walk for the two years prior to actually signing up, but I was much sicker then as I hadn’t had my surgery and knew I’d never have managed it. I’m certainly not suggesting that my completing the walk was a simple case of mind-over-matter, I knew I had to wait until the timing was right. When you’re chronically ill, you have to put your health first much of the time in order to survive, and I knew that could mean pulling out of the race either shortly beforehand or during the day itself. And that would have been OK. Pre-chronic life I’d never have considered quitting anything even if it meant death, but the rules have changed now. It’s totally OK to say no, our health is more important than charity, the expectations of others, and even our own pride.

5.Live life as you see fit, not as others see fit for you.
When I told most of my friends and family that I’d signed up to the walk, they almost universally thought it was a bad idea. My husband, who is forever supportive of every decision I make, was immediately dead set against it and told me outright that I was making a huge mistake, was endangering my health, and was unlikely to reach the finish line. Ouch! (Proved him very wrong though and am trying SO HARD not to rub it in his face!) I totally understood their reasoning of course- 23 miles is a long way to walk for people in good health, never mind for those who are chronically ill. I have to admit that I appreciated their concerns and shared some of their doubts about my walking abilities too. But I also knew that I know my body and abilities the best, and there was a voice inside my head telling me that I could, and would, succeed. If I’d have listened to everyone else I would have dropped out, or never signed up to begin with, and would therefore have missed out on a wonderful day and making a huge accomplishment. My point is, set your own goals for life depending on what you know your abilities to be, and don’t be swayed by people telling you that you can’t do things because you’re sick. Yeah, there are some things that are now out of your grasp, but lots of things aren’t. Now get out there and do them!

Thank you to everyone who supported us on our epic walk; through publicizing our fundraising page, sponsoring us, and in your kind works of support. I’d love to hear your thoughts about this, or if you’ve learned anything from doing extreme challenges for charity sponsorship yourself.

Love as always,
Claire
xxx

My blog is nominated for a WEGO Health activism award.

/ Endo Lady UK / Leave a comment

I’ve been nominated for a WEGO Health award, in the blogging category. This was a lovely surprise! I think it’s great that there is an effort to recognise the amazing work that bloggers do to raise awareness of the many chronic and often invisible health conditions out in the world, including endometriosis.

wego-badge

Please take a moment to check out my profile page and to ‘endorse me’ if you like my posts and the work that I do with regards to endometriosis and adenomyosis. It would mean a lot- it’s so great when endosisters can support each other in their efforts!

Thanks, and much love,
Claire
xxx

I am doing the Pink Pants X London Challenge to raise funds for Endometriosis UK.

/ Endo Lady UK / 3 Comments

Through a possibly misguided combination of enthusiasm and insanity, on the 1st October I (along with two lovely friends my my local support group) will be walking 23 miles/ 37 kilometers across London for the Pink Pants X London Challenge to raise awareness of endometriosis and some funds for Endometriosis UK.

I’m slightly worried about how epic this challenge will be. As my husband put it: ”So, thee girls with chronic fatigue are going to walk 23 miles? OK then!” But I am determined to do it, and nothing stops me when I have made up my mind about something.

Endometriosis UK are an incredible charity, and they have given so much life changing support to me and other women with the disease. Between us, without the information and support that Endometriosis UK have provided me with since my diagnosis, I am not totally sure I’d still be here today. Their work inspired me to become one of their volunteer advocates, so I can help other women facing the many challenges that this disease can bring.

Just Giving
If you like this blog or have used Endometriosis UK services yourself I’m really hoping you might be able to donate to our fundraising page, to help us to meet our target! I would really appreciate anything you might be able to spare for this great cause. You can donate if you’re outside of the UK too.

Thanks for your support! If you want to follow us on Twitter the 1st October you can do so by using the hashtag #GoTeamHerts. If any of you have tips for walking such a long distance, I would love to hear them!

Love,
Claire
xxx

I featured on ITV’s ‘This Morning’ to discuss period pain and menstrual leave.

/ Endo Lady UK / 5 Comments

I had the exciting opportunity to appear on ITV’s ‘This Morning’ program yesterday as part of a feature about period pain and menstrual leave. I will not stop until the whole world knows about my terrible uterus 🙂 If you are in the UK you can watch the clip back here.

Me at ITV
It was such a fun morning, and everyone at ITV was super welcoming which helped to settle my nerves. I had an excellent time and was really pleased to raise a little bit more awareness about menstrual problems. I know some people were disappointed that the feature wasn’t about endo and/or adeno specifically, but at least with myself as the ‘case study’ the issue was raised, it might not have been otherwise. Hopefully the feature will have been enough to raise some alarm bells for women at home who are experiencing similar symptoms with their periods but haven’t got a diagnosis. We have to celebrate the little wins as well as big ones when it comes to raising awareness.

I’d love to know your thoughts on the feature, as well as your experiences of managing periods while working or of menstrual leave. Have you had to take time off for your periods? Do you think a menstrual leave policy would help?

Love,
Claire
xxx

I have a new endometriosis post in the International Business Times.

/ Endo Lady UK / 4 Comments

I have had a new article published in the International Business Times UK today, about why endometriosis and period pain matter. You can read it here.

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Do you feel like your period pain has held you back in life? Has it prevented you from reaching certain goals? How do you attempt to overcome this challenge? Looking forward to hearing any thoughts you have about this.

Love,
Claire
xxx

March is Endometriosis Awareness Month: This was mine in 2016.

/ Endo Lady UK / 2 Comments

endometriosis_awareness-3045

March has whizzed by and is almost over, which means that Endometriosis Awareness Month is also drawing to a close. I absolutely LOVE awareness month as I feel justified in shouting about endo even more loudly than usual (this disease needs all the shouters it can get as far as I’m concerned) and channeling my energies into positive activities rather than feeling sorry for myself. With this in mind, I thought I’d give you all the lowdown on what I’ve been up to for the last few weeks.

Worldwide Endo March
This was the second endo march I have attended in London, and I enjoyed even more than last year. There was a great turnout and people really made the effort to wear yellow and bring banners etc. We turned central London yellow and made a real impact, it was breathtaking to see- I felt quite emotional. I made a poster with a part of my own story on. It said:

I ASKED FOR HELP FOR 14 YEARS WHILE ENDOMETRIOSIS WRECKED MY BODY AND JEOPARDIZED MY FUTURE!

#TooLong     #1in10

One of the benefits of my poster was that it acted as a talking point, enabling  lots of women approach me to share their own endometriosis stories. I talked to older women who had lots of experience, women who had undergone hysterectomies, and newly diagnosed teenagers. I always love meeting other women with endo. Even though I wish that none of us were sick, it helps me feel better understood and less alone. I’m not crazy when I am with them, my ‘normal’ is reflected in theirs.

The march made me realise how far I have come on my chronic illness journey over the past year. At the 2015 event I was newly diagnosed, frightened, and ridiculously ill as I tried to sort out a referral to a specialist to have the surgery I so badly needed. This year I am 7 months post-surgery and felt much healthier, better informed, and hopeful about the future, allowing  me to focus on meeting people and raising awareness rather than stressing or seeking information from other about treatment options and experiences.

My mum and husband joined me on the day and we marched alongside endosisters from my Hertfordshire support group, which meant the world to me. My mum especially, as she is also chronically ill with rheumatoid arthritis, but she battled the punishingly long (or was that just me? My fitbit said I’d walked over 16,000 steps at the end of the day!) walk and made it to the finish line. I was so proud of her and thankful that she was there.

Martin and I

Myself and Dr Martin Hirsch. Photo credit: @martinhirsch100

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How is this possible- I’m a spoonie! I was so exhausted the next day!

I have also been collaborating as a patient representative on a research study led by Dr Martin Hirsch at Queen Mary University of London.  As we were both at the event we were able to meet up and chat in person (a nice change from emails) so that was great too and enabled much interesting endo-chatter.

To be brutally honest I was feeling a bit sad before the endo march as I had invited loads of my friends to come along to but none of them did. Some of them wanted to be there but had very valid reasons why they couldn’t be, and I guess others just didn’t want to. But that’s OK. I realise endometriosis is my battle and that most people cannot understand it unless they’ve lived it. On march day itself those negative feeling were washed away and I was so grateful for the support networks I do have.

‘Endo What?’ European premiere- London

endo what 1
I have been waiting impatiently and super excitedly for this documentary to be released for months, and jumped at the chance to get tickets for the London premiere as I live a short distance outside of the city. I had donated to their fundraising campaign via Indiegogo some time ago, so I knew that a digital download of the film would zoom into my inbox at some point. However, I felt that being able to watch it with other endo sufferers would be a vital opportunity to learn and network- both of which I think are vital for taking control of your health and managing your illness effectively. I can’t imagine opportunities like this will crop up often in planet endo, and I’m not a person who like to miss out. It was worth the MAJOR energy crash that followed the next day.

Again, Mr B was by my side- dedicated and lovely as he is, and we met up with a couple of friends from my support group. I enjoyed the screening immensely, and thought it was accessible and informative- it is indeed a ‘game changer’ as it bills itself. If I’d have watched it in school I might have saved myself years of pain and heartbreak- but never mind, I can’t change the past. I’ve read about endo A LOT and so feel pretty familiar with the workings of the beast, so there was nothing groundbreaking in there that I wasn’t aware of, but it was a good refresher course and great for Mr B to learn some new things too.

The panel discussion afterwards was so interesting and I wish it could have gone on for longer- but I thought it was able to explore some of the trickier claims made in the film (e.g. that ‘‘one surgery done well” should be enough to treat endometriosis) with greater nuance and depth. I’ve noticed that one thing that crops up a lot wherever I am is that people aren’t always aware about the UK specialist endometriosis centers which concerns me as they are so important for accessing appropriate treatment, especially in severe cases. In case you need it the link for the centers is here, do share it loudly and widely with your fellow endo-sisters should the opportunity arise. Being treated by specialist who actually knew a thing or two about endometriosis has really turned my life around for the better, and I’d like everybody to experience that.


Media
I noticed a call out on my Twitter news feed to speak to a women’s health journalist about living with endometriosis, so I offered to participate in the article and was invited to share my story. Every article/video/ social media post published helps to chip away at the stigma and silence surrounding endometriosis, so I was pleased to have the opportunity to use my terrible past for something so positive. On a cheeky side note, it’s great because I gave a fairly long interview and she used the bit where I was passive aggressive about my GP-haha! You can read the full article here.

Tweet

Some may say I’m addicted to Twitter. I’d say I’m just dedicated to raising awareness…

On twitter, I also hit a tweeting milestone of 2000 tweets about endometriosis. If you don’t already follow me on there, please do and come say hello! 🙂

So that was my endometriosis awareness month. It’s been pretty busy. To top it off I’ve been getting stuck into my new advocacy role for Endometriosis UK and am really enjoying its challenges and rewards. I would LOVE to hear what you have all been up to! Did you attend an endo march? Have you watched Endo What? yet? Have you been shouting from the rooftops or turning your social media yellow? Whatever you’ve been doing please keep up the good work!

Love,
Claire
xx

I’m now a volunteer advocate!

/ Endo Lady UK / 3 Comments

Exciting news update- I’m now trained as a volunteer advocate for Endometriosis UK! 🙂 This means that I will be helping women with endometriosis in England to address some of the difficulties they are experiencing as a consequence of living with the disease. Advocacy support could relate to anything from accessing healthcare services and employment disputes to exploring coping mechanisms for the development of better mental health. You can find out more about the Endometriosis UK Advocacy Support here.

helping world

I’m feeling really grateful for this opportunity, and will give as much as I can to the role to help women with endometriosis lead as pain free and fulfilling lives as possible. We all know that having endometriosis  (or any chronic illness for that matter) can be so soul-destroying and isolating at times, and can impact on every aspect of life. From reading this blog you may know that my own story with endometriosis has deeply affected my mental health, working life, body image, and friendships- and I know that my story is probably your story too.

Me six months post surgery: Feeling good and ready to kick endo-butt!

Six months post surgery: Feeling good and ready to kick endo-butt!

Now I am feeling much better physically post-surgery (I haven’t take a single pain killer in 5 months- I used to take 8 a day for 4 years!), I felt it was time to step up my fight against this disease with some positive action. Mighty Endo-Lady lives on! I’m a big fan of charity volunteering anyway and also currently volunteer for Age UK as a befriender. I know how much I could have benefited from an advocacy service in the past, and hope the women who are lucky enough to use it find it informative and useful.

I’m always keen to hear about your experiences of programs and projects in your own communities which work to support women with endometriosis- either as a service user or volunteer. If we keep working toegther we can make a difference to people’s lives and create greater awareness of this awful condition.

Love,
Claire
xx

Endometriosis Awareness Roundup 2015

/ Endo Lady UK / 2 Comments

It’s been a FANTASTIC year for endometriosis awareness! A huge number of features, articles, and events were out in the public domain for all to see in 2015, which has helped to create some needed buzz around this terrible condition.

Credit: Endometriosis UK

More people know this than they did a year ago! Credit: Endometriosis UK

I have outlined just some of the awareness items below to record and recognise the great work that has been going on this year (if I have missed anything off that you feel deserves a mention please do let me know in the comments section below).  I hope we can all feel encouraged that things are starting moving in the right direction in terms of awareness and like our struggles are a little better understood.  I truly believe that every little bit of extra awareness out there will help to contribute to a brighter future for all of us.

Happy reading and reminiscing…

-Thousands of people  around the globe (from countries including Australia, Africa and the UK) participated in the Worldwide Endo March, as part of Endometriosis Awareness Week. I marched in London with some of the endosisters from my local support group.

-The Guardian newspaper published a number of powerful articles about endo over the course of a week in October, some of which made the front page! Highlights included wonderful pieces by Hilary Mantel and Oona King about their own struggles with endometriosis, and an editorial highlighting the stigma and limited access to healthcare experienced by women with the disease across the world.

-Endometriosis UK launched their #TooLong fundraising and awareness campaign.

-The Endometriosis Foundation of America hosted the Blossom Ball in New York City, which was attended by a number of high profile celebrity guests including Susan Sarandon and Christian Slater.

-Meanwhile, the Primrose Ball took place in Leeds, England, which successfully raised £2,810 for Endometriosis UK and generated publicity for endo locally. Alice Smith was just one of the guests speakers, addressed the attendees about her excellent work as a Young Ambassador for Endometriosis UK.

-Robyn Atcheson highlighted the inequalities in access to healthcare experienced by women with endometriosis living in Northern Ireland on BBC Radio Ulster. Go Robyn!

-Filming commenced for a new documentary called ‘Endo What?’. Through kick-starter the documentary team reached their funding raising target of $50, 000 that they need to complete the film and begin it’s distribution. You can check out the trailer here, it’s really exciting!

-Lena Dunham’s ‘Lenny Letters’ had an endometriosis edition. In her letter ‘The Sickest Girl’ Leena shared her own struggle with the disease in a way which was extremely powerful and brave.  Other contributors included the wonderful and tireless Padma Laksmi and specialist Dr Tamer Seckin.

-Jeremy Vine and Dr Sarah Jarvis discussed endometriosis on BBC Radio Two. If you are in the UK you can listen back here.

-The pioneering work of Sylvia and Leslie to bring Visanne to Australia was celebrated by The Guardian in this video.

-Carol Pearson told the Huffington Post that ‘We should be talking about endometriosis- Period’.

-Kate Young told The Conversation that ‘Women with endometriosis need support, not judgement’.

Is all of this great or what?! And it  doesn’t even factor in some of the research that has taken place into the disorder over the past twelve month, such as the study highlighting that women with endometriosis may require psychological support following their diagnosis, or another which established that women with the condition face a heightened risk of complications during pregnancy. The important work that the endometriosis charities have undertaken in the past year also deserves praise here, such as Endometriosis UK’s successful launch of an advocacy service and the establishment of the EnPOWR Project by EndoFound! Keep up the good work guys- and thank you for working so tirelessly to promote our cause!

I hope that we can all keep up this excellent momentum this coming year, and keep on breaking down the stigma and silence that has surrounded endometriosis for far too long.

As 2015 draws to a close I would like to thank you all for reading this blog and commenting on this blog and my Twitter, as well as sharing your stories with me. It has also been a real pleasure to see so many new endo bloggers emerge onto the scene and to read your work. I look forward to keeping in touch with you all next year, and hope that we all able to take a positive step forward in 2016 on our journey to live well despite chronic illness.

Love as always, and a very Happy New Year!

Claire

xx

My day awareness raising with GPs in training.

/ Endo Lady UK / 2 Comments

My GP phoned me unexpectedly last week, messing with the shredded nerves of my inner hypochondriac considerably in the process- ”That’s it I’m dying aren’t I? I knew it! Just tell me quickly to get it over with! Oh. My. God!”

It turns out her news was actually rather positive, so I thought it might be uplifting to tell you guys about it here, rather than moaning about stuff. We have to share the winning moments when we have a disease that makes them all too infrequent right? Our conversation went something like this:

GP: You know we are a training practice?

Me: Yeeeeees…

GP: Well we are doing some gynecology work with our trainee GPs at the moment, and so I was wondering if you would like to come in and talk to them a bit about endometriosis and your experiences of symptoms and treatments?

Me: Hell yes I’d like to. I can’t think of anything I’d like to do more in the entire world now I think of it.

That day was today, and it was totally awesome! I had time to describe my history and the treatments I have experienced in detail (you can read about my journey with endometriosis here and here if interested). The trainees expressed more than a little surprise/ horror at my story and how long it took me to obtain answers when living with such pain and exhaustion. It almost felt weird to be sat in front of doctors describing all the symptoms I’ve had and being believed after so many years of having the complete opposite experience!

I was also able to cover the main points that I was hoping to get across, that:

  • It takes 7 years on average to be diagnosed with endometriosis- which is clearly far too long, exacerbating problems for both patients and doctors in the long-term.
  • Women with endometriosis should be afforded the opportunity to be referred to a BSGE endometriosis center, and have access to excision surgery if necessary.
  • Endometriosis is a full body disease which has been documented in every organ expect the spleen. It can cause symptoms from diarrhea and bladder to fatigue headaches, and not just a disorder of painful periods.
  • Being diagnosed with endometriosis can be tough psychologically as well as physically, so it can be helpful when doctors are mindful of this and inform patients of services which may be useful (e.g. IAPT, Endometriosis UK, pain management clinics, the Pain Toolkit etc).

your story

The four trainees seemed to be really interested and asked lots of questions. Fifteen years of chronic illness and multiple doctors appointments have defiantly made me less shy about my body I noticed, as I sat there comfortably describing my sex life, periods, and bowel movements without wincing at all. It was also really cathartic and positive for me to be talking about my illness in a way which is positive and can make an impact on the healthcare that other women and girls may receive.

Training new doctors to have a competent awareness of endometriosis is clearly crucial for breaking the cycle of misery and failure surrounding this illness, and for helping women to access timely and appropriate care.  I’m thrilled my GP surgery are being proactive in this regard and that I was invited to help.

The world has a teensy bit more endometriosis awareness in it now, and that can only be a good thing for all of us! 🙂

My GP and I discussed keeping up these sessions with new trainees, and she agreed to let me place posters for Endometriosis UK in the patient waiting area. Let me know if you’ve been up to any cool awareness raising activities in your own communities and/or online. Always looking to be encouraged and inspired by all you strong endo warriors and spoonies out there!

Love as always,

Claire

30 things about my invisible illness(es): Endometriosis and Adenomyosis.

/ Endo Lady UK / 17 Comments

Today marks the beginning of Invisible Illness Week. To help raise awareness of this excellent cause I have completed their #30things meme with reference to my endometriosis and adenomyosis.

Endo 1 in 10

Image credit: Monash University

1. The illnesses I live with are… endometriosis and adenomyosis. These illnesses can cause chronic pain and fatigue, as well as a wide range of other nasty symptoms such as gastrointestinal upsets, painful urination, headaches, and infertility. You can read more about my chronic illness journey on the Endometriosis UK website here.

2. I was diagnosed with these in… August 2014.

3.  But I had symptoms since… I started my periods in 1998. That’s 14 years seeking a diagnosis. It was really difficult to cope, particularly in the five years leading up to my diagnosis as I started to feel ill on a daily basis.

4. The biggest adjustment I’ve had to make is… planning, planning and more planning before I do any social or work activity. I used to be able to ‘live in the moment’. Now each event or goal must be planned and executed with military precision to ensure that pain and fatigue don’t get in the way.

5. Most people assume… I’m in pain all the time. In reality, while pain is a big and unwelcome part of my life I find that my chronic fatigue, stomach upsets, and the anxiety/depression caused by my illnesses much more difficult to cope with and work around. Thanks to the oral contraceptive pill I currently have many pain free days each week.

6. The hardest part about mornings is… dragging myself of bed when I have awful, debilitating fatigue. It is really demoralising knowing that I have to face an entire day feeling unwell and exhausted. Most people don’t realise the bravery of this simple act of getting out of bed each morning when you have a chronic invisible illness.

7. My favourite medical TV show is… Scrubs (does that count?!). I love how effectively it captures how vulnerable patients feel, and the different ways they try to cope. I also think it’s a great reminder that doctors are only real people with hopes, dreams, fears, and flaws too. We can forget that sometimes.

scrubs

8.  A gadget I couldn’t live without is… my laptop computer. It has enabled me to blog about my invisible illness experiences which has been a lifesaver, and to connect with other chronically ill people- both in my community and on Twitter from all over the world. I don’t know how I would have managed without this.

9. The hardest part about nights is… trying to fall asleep. Painsomnia is a very real thing. I meet 3am way more often than I would like too. A lack of sleep also makes dealing with day to day life even more challenging.

10. Each day I take two pills and vitamins… my oral contraceptive pill and a vitamin D tablet. On a bad day this might rise to 10 pills if I need to take pain medication.

11. Regarding alternative treatments I… have tried acupuncture to help manage my pain, but I have really mixed feeling about it. However, I do strala yoga and circuit training which I love. It helps to clear my mind and strengthen my body. I believe that a strong body is better able to cope with pain and illness.

12. If I had to choose between an invisible illness or a visible one I would choose… an invisible one. As hard as it is to live with at least I can just pretend to be my old self sometimes. I can also reveal my illness to people at my own choosing and pace.

13. Regarding working and my career… it’s all gone a bit titanic. I work as an academic researcher and having severe fatigue, brain fog, chronic pain, and cognitive difficulties has been a huge problem. I am thinking of changing track in my career to better suit my new health priorities and physical capabilities, but I haven’t worked out what I’d like to do yet.

14. People would be surprised to know… I have cried about my illnesses every day since being diagnosed. They have broken my heart. At the moment I am seeing a therapist to try and help with this, but I know the sadness will never completely go away.

15. The hardest thing to accept about my new reality has been… the fact my my illnesses have no cure and are here to stay. I somehow have to find a way to live with these illnesses for the rest of my life and can never go back to my life the way it was before I got sick. Nobody trains or prepares you for this stuff. It’s a super scary minefield, but I am determined to rise to the challenge and live my life the best I can.

chronic illness forever

16. Something that I never thought I could do with my illness that I did was… put myself first by taking four months off work to have and recover from excision surgery. I knew I needed this operation for so long, but kept putting it off as I was worried about the impact this would have on my family and career. However, one month into my recovery I haven’t regretted the decision for a second and am doing as much as I can to ‘heal’ myself physically and mentally so that, hopefully someday soon, I can get my life back on track.

17. The commercials about my illness… are non-existent. I wish they weren’t as there is very low awareness among the general public about endometriosis and adenomyosis, despite up to 1 in 10 women being affected. 

18. Something I really miss doing since being diagnosed is… going on epic adventures- climbing mountains, sky diving, traveling to remote places. I wouldn’t do such risky things now, knowing what I do about the state and unpredictability of my health. I can’t be too far from good healthcare, pain medicationss, and bathrooms at any given time.

19. It was really hard to have to give up… gluten, caffeine, alcohol, and red meat (for the anti inflammatory endo diet) so I stopped trying to. I figure I have enough to deal with without having to live a life of complete culinary deprivation. However, I have drastically reduced my consumption of these foods overall and am more mindful about what I am putting into my body. You can read about my endo-diet experiences here.

20.  A new hobby I have taken up since my diagnosis is… blogging and tweeting. Give me a cheeky follow and say hello. I’d love to hear your invisible illness story too.

21.  If I could have one day of feeling normal again I would… bask in every glorious second, and laugh as much as I could while totally meaning it and not faking the smile.

22. My illness has taught me… that the old adage that ‘you are nothing without your health’ is totally true and tragically under appreciated. Health enables every aspect of your life- fun, friendships, family, work, etc. Unfortunately, health is had to truly appreciate until it is taken away from you.

23. Want to know a secret? One thing that people say that really gets under my skin is… ”just think positive”. If people had any understanding of or empathy about endometriosis and/or adenomyosis they simply would not say this. While trying to stay positive is important for survival and emotional well-being, it is incredibly difficult to when facing a daily battle with chronic pain, fatigue, and infertility. Since these invisible illnesses are incurable, sufferers face years of painful and ineffective treatments which come with a free side of complications and side effects. There is also the threat of my illnesses getting worse and having to face the consequences of this. Faced with these things, it is very difficult to ‘stay positive.’

24. But I love it when people… are interested enough to ask questions about my health difficulties and how they impact on my life. For me, this is the main way that people can show me that they care and want to help me (and our friendship) to move forward positively.

25. My favourite quote that gets me through tough times is… this picture (I know that isn’t a quote, but a picture paints a thousand words right?!). It helps to calm my panic and steady my focus when my hopes for ‘recovery’ (whatever that means with a chronic illness) go slightly off plan.

recovery

26. When someone is diagnosed I’d like to tell them… to reach out to other people with chronic illnesses in their own community (and the ‘#spoonies’ online). Tough times lie ahead so having some support from people who really understand will make a huge difference to your happiness and ability to cope. Also, people further down their chronic illness journey are an invaluable source of information and advice to help ensure you get the best care possible from your healthcare providers.

27. Something that has surprised me about living with an invisible illness is… how it has made me reassess every aspect of my life and cut out all of the crap.  I think over time this will improve both my overall quality of life as well as my health

28. The nicest thing that somebody did for me when I wasn’t feeling well was… approach me and say ”I can see you aren’t OK. What can I do to help?”

29. I’m involved in Invisible Illness Week because… this cause has been overlooked for too long. Any little thing I can do to raise awareness through sharing my experiences I try to do.

30. The fact that you read this just makes me feel…a little bit better understood 🙂 Thanks for reading.

 

I’d love to hear your thoughts on living with an invisible illness. I’m particularly interested to know what’s the biggest life lesson you have learned since becoming ill. Bloggers, why don’t you complete this quiz too to help raise awareness of your condition. Take care of yourselves!

Love,
Claire
xxx