chronic fatigue

I recently featured in PopSugar UK’s article about living well with endometriosis.

/ Endo Lady UK / Leave a comment

I was recently lucky enough to be asked to contribute to PopSugar UK’s article aiming to share tips about living well with endometriosis. The article was written by our fellow endosister Tori Crowther, and you can read the full post here.  (Oh and I am ”Claire from Hertfordshire” in case you didn’t guess that already :D).

popsugar
I think it’s really important as a community that, as well as raising awareness, we share tips and coping strategies to support each other.  Living with this disease is difficult enough without stumbling in the dark alone right? I know that for me, seeing that there are women who are able to live well with endometriosis, and hearing about how they achieve this, is really encouraging and helps me to feel less hopeless and scared.

Do you have any tips to share about living well with endometriosis? If so, I would love to hear them! This illness affects us all so differently, which opens up many possible avenues for coping with and combating symptoms.

Take care,
Claire
xxx

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

What is recovery anyway?

/ Endo Lady UK / 1 Comment

It’s been a year now since my excision surgery, where endometriosis was removed from my ovaries, utererosacaral ligaments, bowel, bladder, pouch of douglas, peritoneum, and diaphragm. Lot’s of people have been asking for an update about how I’m doing, and I realise it has been a while since I wrote about my own condition, so I thought I’d write this post to update you all and to share some of my thoughts managing the surgical ‘recovery’ process.

recovery

The road to recovery is a long one. There will be obstacles.

I give so many different responses to the question ”So how are you now?”, depending on who is asking- I’ve realised that not everybody needs or even deserves to hear the truth. The honest answer to this question is this: I’m doing OK. Not fantastic, not terrible.

To clarify, I am certainly MUCH better than I was before my surgery, the difference is remarkable. I now no longer have period pain, which is a huge shock and something I never believed was possible for me, having spent 15 years in agony with every single period. As Mr B and I are trying to conceive, I am off the hormones and painkillers , and am managing well, which would not have been possible a year ago. I am actually enjoying being totally drug free, and am still using holistic and dietary techniques to promote my health, along with exercise, which I am really enjoying. This disease has basically turned my into a hippy. Or Gwyneth Paltrow. I’m OK with that.

On the downside, I’ve still been experiencing chronic fatigue since my surgery, which is with me every day and ranges from mild to debilitating. I do have adenomyosis and some other health problems which are likely playing a part in this though, so I don’t see this as any kind of failing from the surgical process. Slightly alarmingly, I have also been experiencing what I think are random diaphragm and endometrioma related pain flare ups again over the last couple of months, but I am just going to track these for a while before I start to panic or take any action.  Another gloomy point, no baby in sight yet, and I haven’t even had any near misses, and that has been getting me down a little bit too sometimes. I know it’s relatively early days in the process though- so I am staying as optimistic as I can. (Funny story though- I went to London Zoo with Mr B recently, and I cried when I saw a stork. New level of crazy right there!)

So, as ever when living with chronic illnesses, there are pros and cons, to my current situation, but I am looking on the bright side about how much progress I have made. Thinking about how far I have come since my surgery a year ago, I started to understand that recovery from a major laparoscopy for endometriosis and the journey back to health is a long one- much greater than the couple of weeks they advise you to take off work. In my view this journey can be helped or hindered by two key factors, which I’ve outlined in greater detail below.

Managing my own expectations:

chronic illness forever
As we all know, there is no cure for endometriosis. While surgery, hormones, or dietary approaches can be useful on their own or in combination, they will not solve the problem completely.

When I see other people sharing their stories online, and through my own advocacy work, I have noticed that many put all their hopes onto a particular approach ‘fixing’ them, in the sense of making them feel exactly like they did before they got really sick.

This makes me worry that they are setting themselves up for disappointment and failure. I am not immune from this myself, for at least a year after being diagnosed I was desperate to work out how I could get back to being my previous healthy self and carry on as though nothing had happened. Eventually I realised this isn’t feasible, my body has changed and I have changed too much. So I gradually started to alter my mindset to focus on how I can become the best and most healthy version of my my new, chronically ill, self.

I’ve found this new approach so liberating and helpful- and it certainly isn’t defeatist if that’s how you’re reading it. It meant that I went into my surgery with positive hopes that it would lessen my symptoms and improve my quality of life, while also being realistic about what it could really achieve in both the short and long term: So when my recovery was hard, and I’ve had flares up, and my endometrioma came back,  and my diaphragm hurts, it was disappointed for sure, but I wasn’t crushed like I used to be.

This new approach to my thinking has also encouraged me to keep striving for health through diet and exercise etc, rather than feeling demotivated and giving up on myself because things will never be as they once were.

Managing the expectations of others:

get well soon
As well as managing your own expectations about what a treatment or approach can feasibly achieve, I have also realised it is just as important, if not more so, to actively manage the expectations of the people around you. No matter how good I have felt about my progress, it has sometimes only taken a small comment from other people to bring me down and lower my confidence. Examples I have experienced have included:

Family member: It’s disappointing you’re still experiencing some these problems isn’t it?!
Friend: How come you’re still feeling bad- do you need another surgery?
Boss: What do you mean you still have fatigue? I thought you had surgery to sort these things out!

Even though I have told people that endometriosis is a chronic and incurable condition, the fact is most people are much more familiar with acute illnesses that get better with treatment, and they will fall back on these experiences to make sense of what you’ve been going through. I mean, people have surgery to fix them right?!

I think if and when I have another laparoscopy, I will work to reinforce realistic expectations of my friends, family, and colleagues during and after the procedure, to improve their understanding and  to limit these comments. Well informed people makes much better cheer-leaders. When people expect that you’re going to be well, or improved, or cured, it is really very difficult to confide in them that your not, and this can increase feelings of loneliness and isolation. It feels like you’re somehow disappointing them or simply not trying hard enough to get better.

Goal setting to aid recovery:

goals
There were a few months after my surgery when I felt frustrated with my progress (well, my perceived lack of) and felt like I was just drifting aimlessly through life without any vision for myself or support. This was really weird for me as I’ve also been a planner and had a strong sense of where I wanted to be. My self confidence was in tatters, as was with fitness and progress on my PhD.

What has really helped to turn this around has been having specific and realistic goals to work towards with regards to my recovery and general health. Over the past year these goals have included: Working on getting leaner, improving my stamina, working to reduce the inflammation in my body, getting pregnant, and finishing my PhD.

The joy of goals is they can be adapted over time depending on your needs and vision for yourself, and they help to develop your sense of purpose and self worth. Without them, the journey to recovery can feel like a never ending road to nowhere.

I would recommend making some short term goals immediately after surgery for the following weeks, and then introducing long terms ones gradually in the months afterwards. The key to success with such an approach is making sure the goals you set are realistic, and that you can identify the steps you are going to take in order to achieve them.

So what exactly recovery is, and to what extent it is possible, I still don’t really know. It’s certainly more than physical healing from surgery and is an ongoing process requiring lost of thought and practice. Like everyone else, I am just trying to do my best in difficult circumstances, and trying to make positive decisions that are right for me.  If you’re feeling lost, or discouraged, on your road to better health, take heart, and take one day at a time. We will get there in the end.

I hope these thoughts are useful to those of you who have had or will be having endometriosis surgery. I would love to know if you have any other tips for aiding recovery and health! And what goals you have for yourself despite endometriosis/chronic illness.

Love, as always,
Claire
xxx

Four reasons why I celebrate my endo-versary (and why you should too)!

/ Endo Lady UK / 4 Comments

A modified version of this post first appeared on The Mighty site on 10th August 2016. You can view the original here.

On Saturday I will be celebrating my second endo-versary, exactly two years to the day since I was diagnosed with endometriosis. I’ll be having brunch with some of my lovely endo-sisters and then cracking open a bottle of something sparkling and delicious with my husband in the evening. Chocolate may also be involved.

‘‘Hang on a moment…’’ I hear you cry, ‘‘why would you want to celebrate the day that you found out that you have a debilitating chronic illness that has led you to spend much of the last decade in varying degrees of pain and exhaustion?’’ This is fair question, but hear me out while I try and convince you that endo-versaries are a good thing for your mind and body, and that can help you to manage your endometriosis more effectively over the long term.

Cheers- to me! Another year survived.

Cheers- to me! Another year survived.

  1. It marks your first major win against the disease.

If you don’t know what’s causing your symptoms, it can be difficult to combat and manage them effectively. But for many women, getting a diagnosis of endometriosis is extremely hard. In fact, it takes women in the UK an average of 7.5 years from developing initial symptoms to getting a correct diagnosis- a trend that is mirrored across the globe. I myself was seeking answers for my pelvic pain and fatigue for 14 years and with over 20 doctors before finally gaining a correct diagnosis!

Fighting for my health while being so sick required infinite amounts of patience, determination, and self-belief- more than I ever believed I could possess. My efforts paid off in the end, and while gaining an endometriosis diagnosis has been devastating and life-changing, it has also enabled me to start taking control of my body and turning things around for the better. Who wouldn’t raise a glass (or two) to that?

  1. It offers an opportunity for reflection.

Life with endometriosis, or any chronic illness, can feel like a never ending and unwinnable battle. It can be easy to become discouraged and overly hard on yourself.

Having space for annual reflection can be a really helpful way of gaging how far you have come and what you’ve achieved in spite of being sick. It can also be useful for helping you to figure out what you want to work on or achieve over the coming year. For example, on my first endo-versary I reflected on how my time had been focused on coming to terms with my new diagnosis, and how far I’d come in working through my feelings of fear and grief. And now, approaching my secondary endo-versary I can see how this year has been about accessing and recovering from the surgery I needed to improve my quality of life. Over the next year, I will take on the formidable fertility fight in the hopes of having a baby. Looking back on how far I’ve come gives me a huge sense of achievement on how strong I’ve been, as well as bringing a new determination for the upcoming challenges I’ll face over the coming months.

  1. It opens up an avenue for awareness raising.

If you’re like me, you might limit the amount you post on your personal social media accounts about endometriosis and your own battle with the disease. I used to post a lot more but it was obvious that ‘compassion fatigue’ had set in and that my posts were having little impact. Posting about my endo-versary is a concrete way of revisiting the issue and helping to raise much needed awareness for endometriosis amongst family and friends. This will also help to remind them that I live with this disease 24/7 and that their help and support is much needed and greatly appreciated.

  1. It’s an excuse for some well-deserved pampering.

Like any celebration worth its name, an endo-versary is an excellent opportunity to indulge in a little pampering or ‘me time’- whatever you need most. So crack open the bubbly, or the chocolate, or go to a spa, or to the theatre, or bake cakes to eat with your girlfriends- whatever makes you feel good. You’ve made it through another year despite endometriosis- you’ve earned it!

If you're going to break your Endo-Diet, do it in style I say!

If you’re going to break your Endo-Diet, do it in style I say!

So there you have it. I hope you’re convinced and will start marking your endo-versary in whatever way you see fit, if you don’t already. But if not, that’s OK, but please know this. On the 13th August, as I toast my own successes and the journey to come, I shall raise my glass to you as well- all of you who live with endometriosis every day. You are all so strong and so brave, and without the support of many of you I’d probably be spending this endo-versary hiding under my bed crying. Cheers!

I’d love to hear your thoughts on this. Do you celebrate your endo-versary, and if so, how? Conversely, is it something you could never bring yourself to celebrate?

Love,
Claire
xxx

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

Endo, Me, and a PhD: The challenges of working and studying with a chronic illness.

/ Endo Lady UK / 3 Comments

Happy new year to you all- I hope you all had a restful Christmas break and that 2015 has started well for you! I haven’t blogged for a little while now, but have decided to start this year with a post that is very personal and emotive to me at the moment, about working and studying when you have endometriosis. Having had a good rest over the past couple of weeks I now feel strong enough to write about it. While it may be slightly gloomy in places, I know that having a successful career when living with endometriosis is possible (see here and here for some helpful guidance) and I am working towards this in the future. Until then, I have a lot to figure out. Happy reading!

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In October 2012 I enrolled on a PhD program, which means that I get paid for three years to conduct and write up my own research project. I’ve always been one of those straight-A nerdy types who dreams big for her career, so when the opportunity came up for me to do a funded PhD at a top university I jumped at the chance. It was like all of my dreams coming true at once. However, as I know you all understand, life doesn’t always work out as we plan, and starting my program coincided with a major turn for the worse in my endometriosis symptoms. As a result my professional life has gone a bit titanic, and I have spent the last year questioning whether I will be able to complete the program. This is not something I ever imagined contemplating- I am not a quitter, even when things get tough. So, thanks life- for nothing!

Having micro-analysed the situation in my usual manner over the last couple of months, I think the difficulties I have experienced in trying to maintain a normal/ professional level of functioning at work stem from the following issues:

It took AGES for my endometriosis to be diagnosed: While I had multiple hospital appointments in various hospital specialties since the start of my PhD, very little progress was made diagnostically, or action taken to address my symptoms. I think of this times as ‘THE DARK DAYS’, as I struggled to understand what was happening to my body with little support, and was basically freaking out that I was dying. That sounds way more melodramatic than it was at the time- trust me. I knew something was very very wrong but nobody was listening to me. When my doctors did finally notice my endometrioma, they spent weeks terrifying me that I probably had ovarian cancer, and would need surgery to confirm this. Looking back, living on terror alert was not particularly conducive to focusing on my work. So, I started to get behind with my project from the start.

My symptoms have become progressively worse: Since 2012, I have gone from being what I would classify as feeling ‘quite unwell’ to feeling ‘very unwell’ on a regular basis. I am sometimes incapacitated by pain (usually in my leg, bowel, or shoulders) and/or fatigue. Work tasks that I could initially manage with ease, such as transcribing my data or going out to interview people now require much more planning and willpower to complete. Even with the best will in the world, some days I just can’t do anything. When I do go into work, chronic fatigue’s free gift of brain fog often holds me back, which for someone whose job relies on their cognitive abilities is a massive problem. It is like my ability to read and retain information have been completely obliterated, it’s really weird and disconcerting. I haven’t figured out how to overcome all of this yet.

My mental health has taken a battering: You have no warning to prepare you for how frightening and bewildering it is to experience endometriosis symptoms, go though the process of gaining a diagnosis, and having to start managing your life with this disease. I haven’t seen much written about how traumatising it can be, although I see it so clearly between the lines on twitter, in blogs, and at my support group. I know it isn’t just me. I walked around in a daze for several months, just trying my best to survive from day to day. My mental health is gradually on the mend now I think, but for ages I was having fully fledged breakdowns on a weekly basis because of anxiety and depression caused by my endometriosis. So when in the office, there has been less working and more crying in the toilets, that sort thing.

This is me every day at work. Credit: A Thrift Mrs.

This is me every day at work.
Credit: A Thrifty Mrs.

So now, I am basically very behind with my project, and am struggling to move it forward. I keep swinging back and forth on what I should do about it- quit or carry on? I have tried to be proactive in the last few weeks about the situation… I have spoken to my supervisors (I’d rather have been fed to snappy turtles before I did this, but they have actually been more understanding than I was expecting), my college tutor (who arranged counseling for me and was an excellent shoulder to cry on), and to the Disability Resources Center (who provided lots of practical advice on working with a chronic illness). I am glad I did all these things, even though I was scared to tell people, because your colleagues can’t be on board with you if they don’t know what is going on. My supervisor went through a period of publicly calling me ”lazy” (which is clearly mortifying) but that has stopped now. However, I’m still haven’t had any concrete action come out of these meetings as it is fairly early days yet. However, I do think being a PhD student, as opposed to somebody in non-student employment has screwed me over when it comes working with a chronic illness because:

You have limited rights as an employee: Paid sick leave? Nope, we don’t get that. I have been informed that I am entitled to ‘intermit on medial grounds’, which means I can have an extension on my PhD deadline for the time I have missed because of my endometriosis. Sounds good right?! However, during this intermission my funding will be frozen- so I will be expected to carry on working to catch-up, but for free. FREE! This makes me sad because I feel like I need a break and the time to catch-up on work to reduce my stress. However, speaking to my fiance confirmed my fears about this radical course of action, I think the phrase ”starving to death” came up at one point. We have commitments to a mortgage and are getting married in June, so cutting off my income right now just isn’t feasible.

Time is of the essence: If I don’t intermit I have until September 2015 to submit my PhD. So, endometriosis ground me to a standstill and brought me to my knees, but unfortunately time does not stop with you. The Disability Resources Center suggested some helpful interventions that could be put in place to help me (new software, study skills training, a book allowance etc), although these things are dependent on a funding application, which takes months, which will then clearly only help me in the final few months of my PhD and cannot undo the damage that has been done so far. ”If only you were in your first year” they kept saying. Helpful!

So basically, I’m totally screwed aren’t?! This whole situation is making me unbelievably miserable. And I haven’t even mentioned everything that is challenging, like annoying colleagues: There is always one who knows the worst thing to say at any given moment: See ”I admire you for thinking about quitting, MOST people would just carry on and do what they’ve got to do” and ”You had surgery, so you must be a bit better now.” Grrrrrrr! I’ve made such a pigs ear out of this PhD that I can’t see me landing a job in research afterwards. I’ve come across as flaky, unmotivated and depressed I think- not a good combination for employers. And to be honest, I’m not sure I’d want it any longer anyway, I just can’t keep up with the fast-paced publish or perish life. My current thinking is to just keep my head down, keep working on the PhD as much as I can, and then deal with it the best I can if/when I have to submit late. I know its childish, but sometimes I wish I could just press pause on my life, or just run away from it and start again. Do you ever wish that?

Thinking more long-term, I’m wondering if the kind of high powered and stimulating career I always wanted will actually be accessible to me now. Should I think smaller and take a little low stress 9-5 job that will protect my health, or carry on thinking big in a ‘this will not beat me’ style? I’m scared of letting people like my parents and fiance down, they’ve invested so much in belief, time and money in my education for me to throw it all away. I just don’t know what to do and it’s just heartbreaking at times. I’ve got so much to figure out.

So that’s my experience of working/ studying while living with endometriosis. It’s not particularly pretty, but it’s really early days for me and I am still trying to figure this stuff out. I think my story further highlights the need for earlier diagnosis and for more holistic post-diagnostic support for women with endometriosis though.

How do you manage to work with a chronic illness and/or chronic fatigue? Did you change your career-path pre/post diagnosis? Are your colleagues supportive? I really appreciate your advice and tips, and am interested to hear your stories.

Love,

Claire

xxx

Chronically creative! My proposed solution for crippling fatigue.

/ Endo Lady UK / 5 Comments

The thing I hate the most about my endometriosis is the free gift of chronic fatigue that it comes with. I can be such a warrior in the face of even the worst pain imaginable, but this constant, grinding, debilitating exhaustion has really knocked the life and pizazz right out of me. I honestly used to be the life and soul of the party, but right now, even the word ‘party’ makes me cringe. It’s also obliterated my short term memory, which as a PhD student is really not ideal. What’s strange is the fatigue crept up on me so slowly that I can’t really pin-point when it began for me, or when exactly it started to be a big problem. With hindsight, I think that I was in slight denial about how bad it had gotten before receiving my endometriosis diagnosis, I just thought I was depressed or something. The fact that is is here to stay in blinking alarming though! I really need to work out how to live a good life with this chipping away at me.

In contrast to pain management, effectively tackling chronic fatigue seems a lot more complicated and less well understood. When I asked chronic fatiguemy GP for advice for example, she stared at me blankly and then suggested that chronic fatigue isn’t a symptom of endometriosis. So that was pretty much useless. I think it is pretty weird that this symptom has never been mentioned to me by any of my doctors, especially considering how commonly it is experienced by women with endometriosis. My fellow bloggers and tweeters have been much more helpful, and seem to offer advice centering on forward planning your time to prevent over-exertion which can exacerbate fatigue. This blog post provides a particularly helpful summary of thinking in this area.

I’ve been giving this a go, although it’s easier said than done and doesn’t really doesn’t come naturally to me- I think I have a tendency to run around and burn myself out. My mum says I’m a classic Sagittarius in that way *rolls eyes*. Having had a good root around on twitter, I came across Christine Donato’s ‘spoon theory’, which is worth a read if you have time. When explaining her chronic illness and fatigue to a friend while eating lunch in a cafe, she used spoons to represents units of energy, which a chronically ill person must choose how to spend in order to undertake the daily tasks of living and socialising.

Being mindful of my ‘spoons’ has been very helpful I think, certainly in respects to planning my weekly schedule more carefully. I also like that the theory is linked to an active online community through the hashtags: #spoonies and #spoonieproblems, where people with a range of chronic illness share information, advice and sympathy. However, using this approach I sometimes feel that I still missing out on too much of life, like social events which should be things to look forward to, not dread. Also, for myself personally, I think the spoon theory falls down slightly as I think it can imply that you wake up with a full set of energy, whereas for myself and many others, this isn’t the case. But these are minor quibbles, overall it rocks and is actually quite empowering.

In light of my recent efforts- to cheer myself up and encourage myself to keep going, I decided to buy myself a little gift of a spoon necklace. I figured this way I will always have at least one spoon, and so will never run out of them entirely! 🙂 This plan can’t fail right?! I also find regular exercise can be really energising, but it can be a vicious cycle as I often find I am feeling to exhausted to exercise in the first place.

spoon necklace

In my head, I’m hilarious.

As ever, your thoughts and experiences on chronic fatigue, and how you manage it, would be very much appreciated. My pizazz my be temporarily on shut-down, but I am determined to get it back, one way or another! Have you shared the spoon theory with friends and/or family? If so, has it been useful?

Love,

Claire

xxx