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

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

It’s my first endo-versary! I’ve learned so much this year.

It’s my endo-versary today- exactly one year since I received my endometriosis diagnosis following my laparoscopy at Addenbrooke’s hospital.  I have decided to celebrate the occasion with Mr B, dinner, and prosecco, because my diagnosis was so hard fought for. If you aren’t familiar with my story, you can read about it here or here.

Cheers- to me!

Cheers- to me!

Hitting the one year mark has prompted me to stop and reflect on my post-diagnosis journey so far. It’s been one hell of a roller-coaster ride, and I (rather naively perhaps) wasn’t prepared for what was in store for me. In the spirit of sharing, I have listed the five most important things I have learned this year that I thought might be helpful to other people newly diagnosed with endometriosis or a chronic illness.

A diagnosis is very much the beginning of the journey, not the final destination.

Sitting in my hospital bed after waking up from my surgery, my surgeon told me the news that I have severe endometriosis. I was absolutely elated because: a) it was proof I wasn’t crazy and imaging all my symptoms, b) I thought it meant that everyone would now take care of me, and c) I was excited about getting some treatment. I was SO VERY WRONG! Nothing actually turned out to be that simple, which has been frustrating and infuriating at times. Work, my doctors, and my friends didn’t seem to know what to do with me, and I certainly didn’t know what to do with myself. But now, one year on, I’m walking the road of progress very slowly each day, trying to figure out how to lead a good life despite chronic pain and fatigue. I’m confident that I will master it one day.

It’s OK to be VERY angry and sad.

I never knew I could cry so hard or so often as I have this year. These massive tears of anger and grief for what has happened and for what I’m scared my future will be. I’m surprised I haven’t dissolved my eyes. This sort of reaction goes against the spirit of how we are traditionally encouraged to cope with illness in our society- by staying positive, fighting hard, and keeping a stiff upper lip.

I did not do any of these things very well in public, although I did try, but in private I went through what turned out to be a pretty epic breakdown. I couldn’t reconcile or accept this life that I’m living with how I want my life to be- and this is still a work in progress. I also hated everyone in my life at times in a slightly hilarious teenage foot stamping way- for not understanding, for not being there.

But guess what? I’ve learned that is perfectly OK to feel like this. Politely ignore the people who tell you to ‘rise above, fight, and think positive’ when you need to and take the time you need to work though all of your emotions- the good and bad. Receiving a diagnosis of a chronic and complicated illness like endo is a huge shock to the system, more so than I ever anticipated.  You can’t predict how you will react and you don’t need to justify how you cope with it. Having some time to think things through, and grieve, and be angry may be what you need to move forward. If you can though, don’t let it rule your life. Maintaining your closest ties to family and friends is so important too and will help in the long term.

Connecting with other people with endometriosis and/or chronic health conditions is a lifesaver.

Discovering the spoonie community on Facebook and Twitter and joining a local support group has helped me retain some resemblance of sanity this year. They have been a safe haven from the well-meaning but STUPID comments you get from your healthy family and peers (‘Have you tried taking vitamins?’ ‘If they can cure cancer I’m sue they can cure what you have!’ and ‘You just need to think positive’ have been my personal favourites this year).

Meeting and chatting to other young people living with chronic pain and fatigue has taught me so much and made me realise that I’m not alone, and that I can go on to achieve things despite being ill.  I think I’ve also become a more understanding and sensitive friend this year too, which can only be a good thing and will enrich my life for years to come 🙂

Putting yourself first will not cause the world to end.

I’m one of those girls that wants to make every happy and cause no fuss or drama. There came a point this year when I realised some fuss  was very much needed if I am to keep going. I’ve stopped going to social events I feel too unwell to attend, disclosed my difficulties at work and requested some reasonable adjustments, and have stopped feeling the need to justify my actions, like how I can exercise when ill, to the naysayers. The world hasn’t stopped and people don’t hate me (well, I don’t think they do!).

Sure, some of the people I’d thought of as friends have now disappeared from my life- they can’t cope with how things of changed- but they are better off out of my life anyway if this is the case. The silver lining is that your true friends really step up into action if you talk to them about what you’ve been going through. That’s meant so much to me and has been a great lesson about what is important.

Life will never be the same again.

Having a chronic illness requires you to totally change the way you structure and live your life, because it’s not going to go away and no amount of ‘fighting’ will change that (sorry healthy people). I won’t ‘win’ this battle, but I’m determined not to be the looser either, and to do this I need to work with understanding and partnership with my illness.

I’m still getting to grips with this, I’ve learned it isn’t something that you can master over night. Sometimes I overdo things and exhaust myself. Other times, I miss deadlines because I’ve been resting a little too much. But I’m certainly getting there. I’m not sure what the future holds, and I’m completely terrified about it- Will I have children? What job will I be able to get and hold down after my PhD? Will I even be able to finish my PhD? But I trust that I can cope. I have come so far and achieved so much despite being ill. I am super girl and I will get through this.

I’d love to hear where you celebrate your endo-versary or another diagnosis date! If so, how do you do it? What’s the biggest life lesson you have learned since that day?

Love,
Claire
xxx

We need to talk about the endo-diet.

There will inevitably come a time following your diagnosis with endometriosis when you stumble across ‘the endo-diet’ for the first time. This may be through your own research efforts, the result of your attendance at a support group, or like me you may be randomly given a book on the subject by a well meaning friend. I classify it as one of those entities in life that once known can never be unknown-for better or for worse. But this topic is interesting food for thought (excuse my pun-I think I’m funny) and an excuse for some soul searching.

This was on my desk one morning. That actually happened.

This was on my desk one morning. That actually happened.

I’m not going to dwell on the ins and outs of the diets’ specifics here as I presume you are familiar with at least its basic premise. However, for you culinary newbies out there, it can best be described as the elimination of foods which foster inflammation and/or act as endocrine disruptors. This helpful image below shows which foods are recommended and restricted:

endo diet

I am a member of several Facebook groups dedicated to endo-recipe sharing and tip swapping, follow endo-diet pins on Pinterest, and keep a scrap book of suitable recipes which I make on a frequent basis. You could call me an enthusiast or a convert. I started eating kale, I bought a nutri-bullet to make smoothies, and I now use a variety of coconut based products. And I’m not the only one. There is no shortage of posts on social media or in the press from advocates of this eating style claiming that it solved their problems with chronic pain and/or infertility.

Now don’t get me wrong, I’m all for us endo-sisters taking positive and constructive action to regain some control over our health and to better manage our symptoms. In fact, I actively encourage it. However, some aspects of the endo-diet, or perhaps the movement that surrounds it, do not sit comfortably with me. Here’s why:

It’s super restrictive!

Have you seen what you can’t eat on this diet?! I mean seriously?! If you’re going to do it properly (and I’m one of those all-or-nothing types by nature) you can kiss goodbye to that Friday night pizza and beer, the big cheese-burger at your neighbour’s BBQ, your cups of tea at work with your colleagues, or even the yoghurt you have every day as your mid-morning snack. Do not talk to me of gluten/caffeine/dairy free alternatives- I lived with these things for months and have decided that most are pure unadulterated evil. I have vowed to never eat another co-yo. Basically, you have to quit all the little things that make life worth living.

coyo

I have put an end to this tyranny.

As much as I enjoy kale, avocados and quinoa, you can only eat them so much of them before you start loosing the will to live. Besides, I get super grouchy when I’m hungry (or ‘hangry’ as my friend calls it) and I have enough problems to be dealing with as it is without adding to them…just sayin’.

It sets you up to fail.

So this diet is tough, and therefore only the most dedicated or those most determined to completely purge their lives of joy are likely to be able to stick to it. This sets the rest of us up to feel like failures, or at least, I did. Several times I mentally berated myself for eating a cookie or a slice of bread, and that’s when I new that my pursuit of perfection in this diet had allowed me to blur the lines between self care and self abuse. That is not a healthy place to be.

It places responsibility for your pain on your lifestyle.

”In pain but you still eat gluten, or dairy, or caffeine? Well, you’re basically bringing the agony, fatigue, and infertility on yourself then lazy chops. It’s your lifestyle, it’s your choice.”

Nobody has ever explicitly said this to me, but I do sometimes sense it under the surface in my own interactions and in some of the stuff I’ve seen online. Like when people say: ”Is that brownie gluten free?” when they see I’ve order a desert. Or this woman banging on about how she went organic and just ate vegetables and then got pregnant after a decade of infertility. There is a sense of one-upmanship and competition to it that is really distasteful somehow. But I didn’t ask to have endometriosis, or adenomyosis, or chronic fatigue, so I will not be held to ransom by them.

It is not a cure.

I’m a scientist by trade so skepticism is but second nature to me of course. I just think that the benefits perceived from this diet probably just stem from people generally eating more mindfully and healthily, rather than due to the elimination of specific food types. And that’s a good thing- making healthy choices can only help our bodies and minds to cope with the onslaught that endometriosis throws at them.

But to me, that’s all the endo-diet is- a healthier choice, along with yoga, and acupuncture, and all the other things I have so desperately tried in order to claw back some control over my life and end the relentless pain I was experiencing. And do you know what? They have helped, my pain is significantly reduced from this time last year.

What these things aren’t though is a cure, and that’s what we all so desperately want and need. I will focus my energy on campaigning for that any way that I can. (Not that it claims to be a cure of course, but a symptom modifier, but I think it is paraded around in that way in some unsavory corners of publishing and social media. Not cool dudes.)

So now, I think I am living in a happier middle ground, or at least I try to, and that suits me much better. I am conscious of what I am putting into and onto my body, and have revamped my kitchen skills and culinary repertoire to boot. My husband loves all the new foods I’ve been making too which is great. I still attend my boot camp sessions too which help me a great deal.

But do you know what? If I want an ice-cream I’m going to have one, and you can bet it isn’t make with soaked cashews or coconut milk! 🙂

I’d love to hear all of your experiences and thoughts on the endo-diet! I totally accept that people have both posotive and negative experiences in this area. Has giving up gluten saved your life or driven you crazy? Do you have a favorite recipe? Do you follow the diet strictly or just reduce rather than eliminate certain food groups?

Love,
Claire
xxx

This girl just got married! Thoughts on surviving as an endo-bride.

Two weeks ago, I got married to the love of my life MR B 🙂 It was such an amazing and happy time, and the first time in a year that I forgot that endometriosis even exists. Here are a couple of my favorite pictures from the day that a friend took, we haven’t received the official photographs yet:

2015-06-07 15.53.21

wedding1

I’d been so worried beforehand that my endometriosis was going to rear its ugly head and spoil my day, but fate/luck/god/mother nature was on my side and I had one of the most pain free days I have had in years. I think this success was partly down to my slightly obsessive and militant approach to wedding planning, and while there are no shortage of articles written on how to get the most out of your wedding as a chronically ill bride (see here and here for example), I thought I’d share some of my thoughts on this topic with you all anyway.

So, to be a kickass endo-bride, I would recommend taking the following actions:

Sort out everything as far in advance as possible.

Loads of people thought I was a totally anal bridezilla as I had all our prep finished at least a month before the wedding. I’m talking speech written and memorised, boxes of decorations packed, and first dance rehearsed. While people kept saying to me ‘relax- you don’t need to be doing this yet’, I knew it would enable me to save some serious energy/ spoons up in the couple of weeks before the wedding, and concentrate in getting myself as rested and well as possible. This definitely paid off.

Don’t sweat the little stuff.

During your wedding, the phrase ‘it’ll be babies next’ will be said to you at least twice a minute for the entire day. This would usually annoy the hell out of me, especially from people who know me and are aware of my endometriosis, but on this one-off occasion I recommend mastering the face below, nodding politely while letting it wash over you, and moving on to chat to someone.

thumbs up

Babies. Yeah. Simple.

On a similar note, don’t wast any spoons at all fretting over things that in the grand scheme of things just don’t matter. Things can and will go wrong. One of my bridesmaids hair wouldn’t curl and I was like ‘yeah whatevs man, that’s cool’, whereas pre-endometriosis perfectionist Claire may have had a mini-meltdown.

Plan breaks and have a bridesmaid remind you to take them.

I knew I would be running around like an excitable little chipmunk on my wedding day, and indeed I was. To deal with this, I had a bridesmaid remind me to take a break every couple of hours to help me recharge and prevent an epic crash later in the evening and the next day. She also made sure I was eating and drinking enough to keep my energy up.

Choose your wedding dress wisely.

When shopping for my dress I was aware that it needed to be comfortable as anything that caused discomfort would likely trigger further pain and my fatigue to flare, something that would be forgiving to epic endo-belly should it arrive, and something that could conceal Bridget Jones style pants in the event of unscheduled bleeding. I know, my life is so glamorous. Finding a dress that fits these requirements is no mean feat, but they are out there, so do your research.

And while we are on the topic, for the love of all that is holy do the sit test in your dress before buying it. Mine was super comfy when I was standing up/ running around but turned out to be weirdly uncomfortable when sitting down (which we do a lot of when we have a chronic illness- I’m sure you’ve noticed).

Make a speech and acknowledge your chronic illness experience.

I did this, and it was so awesome and liberating to state publicly acknowledge that I’ve been ill and been having a horrible time, but that I couldn’t have got through it without the help and support of Mr B. Pretty much the whole room (including the men) burst into tears which I wasn’t expecting.

If you’re going on honeymoon, plan it wisely.

We went away on a long haul flight the morning after our wedding. MISTAKE! I was properly fatigued and achy, and that last thing I wanted to do was drive to the airport for an 11 hour flight. If you can have a few days/weeks to recuperate first- do it!

Accept that you can only control so much.

If your endometriosis does decide to rear it’s ugly head, accept that it isn’t your fault and that it won’t ruin the day. Have a backup plan with you (medication/ hot water bottle etc) and just do what you need to do for you to be OK. I was prepared to sit back and just watch everyone else party if it came to it, and was determined to drink it all in and enjoy myself no matter what. Endo steals so much from me but I was determined it would not steak my enjoyment of this day.

So, those are my tips. I’d love to hear about your experiences as a chronically ill bride and any tips that you have! Hilarious endo related wedding stories also very welcome.

Love,
Claire
xxx

How music helps me cope with the physical and emotion pain from endometriosis.

It’s now been nine months since I had my laparoscopy and was diagnosed with endometriosis. It’s been one crazy roller-coaster ride. Upon reflection, I think there are some positives to my chronic illness story so far; endometriosis has forced me to dig deeper than I ever thought possibler, has taught me the true value of health and happiness, and has shown me who my real friends and family are as well as how to value them.  What I hate though is how, in your darkest times, endometriosis makes you feel so lost and alone with a massive burden to carry. No matter how openly or sincerely people are ”there for you”, it can be very difficult to open up about how you are really feeling. After all, I’ve found that my thoughts and outlook often changes from day to day depending on how I am physically and/or mentally. And besides, I’m still just trying to come to terms with all this stuff for myself, so I don’t need to share all the gory inner-workings of my mind with the whole world just yet.

One thing that I have found that really helps me to process difficult emotions is to listen to songs that has lyrics or a melody that encapsulates an aspect of how I am feeling. I’ve always been into music and appreciate listening to loads of different genres, from classical and jazz, to rock and rap. I was also a dancer growing up, so escaping reality in this way is not a new strategy for me. When things get too much and I just don’t know what to do with myself, I put on my noise cancelling headphones, load up my Spotify, and block out the world with the songs that I know will say the things that I don’t want to. It’s super cathartic and helpful.

I thought it might be fun (or at least interesting) to share some of the songs that have helped me with you all. Think of it as ‘my endometriosis playlist- the edited version’ (my full endo playlist has around 150 tracks on it!):

1. Crystal ball (Keane).

”Who is the man I see
Where I’m supposed to be?
I lost my heart, I buried it too deep
Under the iron sea.”

I’m a big fan of the band Keane, which I’m aware isn’t a hugely fashionable thing to admit. Their lyrics are so good at articulating the deepest and darkest insecurities that we all have, and I find that they often help me to make sense of my feeling about my endometriosis even though they were written about other topics, usually love or friendship.

This song is about feeling emotionally disconnected from your life and discontented with how it’s working out, but feeling powerless to put things right. There are times in the past year where I have felt so low it was unbearable, but listening to all of the lyrics of this song reminds me both that I am not the only person to have felt this way and that I don’t want to always feel like this.

2. Big girls cry (Sia).

”I may cry, ruining my makeup
Wash away all the things you’ve taken
I don’t care if I don’t look pretty
Big girls cry when their hearts are breaking.”

I find Sia’s voice amazing and I could listen to her all day. This song regularly makes me cry because I totally understand the ‘tough girl’ who is inconsolable and brokenhearted. I am that girl- I’ve done A LOT of crying this year. Some of her videos are also really cool actually, and represent a child and a warrior doing battle. I find that I relate to these two battling states of self in relation to my own endometriosis journey, being simultaneously the girl who would stop at nothing to get answers and the girl who just wants to be looked after and told everything will be OK.

3. Bumpy Ride (The Hoosiers).

”It’s gonna be a bumpy ride
But it sure beats standing still.
I know we can work it out,
And I’ve no doubt that we will.
When it hurts more than it shows,
It’s not the easiest of roads.
No it’s never black and white,
And you can keep your happy life.”

This song is totally daft, but it always cheers me up as it reminds me that even though this isn’t the journey or life I would have chosen for myself, that it can be (and is) a good one. I won’t be beaten by endometriosis, but right now I am still finding my feet and traveling this rocky road. But do you know what? That’s OK, I know I will reach steadier climbs eventually.

4. A bad dream (Keane).

”I wake up, it’s a bad dream
No one on my side
I was fighting
But I just feel too tired
To be fighting
Guess I’m not the fighting kind.”

This is another Keane song for my gloomier moods. It is actually a beautiful song about the ironies of war. I think I relate to it about war too, but the one that’s going on inside my body. As I have outlined in this post as well as some others, having endometriosis can feel really isolating and like you constantly have to fight to get the treatment that you need. Sometimes, I find emotions around this extremely difficult, and these lyrics along with the sombre melody articulate these feelings better than I ever could.

5. Superheroes (The Script).

”When you’ve been fighting for it all your life
You’ve been struggling to make things right
That’s how a superhero learns to fly
(Every day, every hour
Turn the pain into power).”

This choice is pretty straightforward. I’ve been battling endometriosis since I was 12 years old. It has certainly made me stronger, and I am proud of some of the things I have done since gaining my diagnosis to raise awareness, such as attending the EndoMarch and blogging on this site. On some days, just for a minute, I sit and reflect on what I’ve been through and think ”Damn, I’m a bit of a badass superhero.” I bet you do too! 🙂

In the past few weeks I have started to freak out about my future again, and I have noticed that my music consumption has shot up. I just don’t know how to tell people that I’m not OK, and it’s driving me crazy. I just turn to songs as a best friend when I need them. They almost always give me the advice I need and I always feel better for spending time with them.

I am sooooo interested to hear about the music that has helped you through your endometriosis and/or chronic illness journey. Is there a particular song or lyric that perfectly depicts an experience or emotion you’ve had? Perhaps you could tell me what your endometriosis sound track would be. Or (even more excitingly) have you written your own music on this topic? Please do get in touch and share your thoughts.

Love,

Claire

xxx

How a military style boot-camp helps to manage my chronic pain from endometriosis.

Trying to exercise and keep fit when you have a chronic illness is a weird experience, as I have come to realise over the past year. In attempt to gain some control back over my health I joined a military-style boot camp class about 11 months ago and have been attending at least three times a week  ever since. I see lots of debate online about the benefits of exercise for chronically ill people, and whether exercising is even achievable for us, so I thought writing about my own experiences might be helpful.

I think the first thing to acknowledge is that my fitness journey has not been easy. Some of the barriers to maintaining my program over the past year have been as follows:

Lacking the physical and mental energy required: When you feel terrible ALL THE TIME, the last thing you feel like doing is dragging yourself outside to run around a field. About 97% of the time my body is commanding me to lie down to sleep and/or eat chocolate. The incredible amount of sheer will power it takes to pick yourself up and go out to exercise is truly beyond the comprehension of most people who have not experienced it. I’ve dragged myself out feeling physically sick from fatigue or with horrible cramps more times than I can remember- and I always class this as a huge achievement in itself regardless of what happens at my training session.

Maintaining  confidence in yourself and your own journey: When everyone else seems super fit and are breezing through the exercises, and you’ve got bad cramps and are wheezing away at the back of the group it can knock your confidence. I’m always careful to focus on my own improvements and achievements rather than comparing myself to other in the group (who blatantly don’t know how easy they have it ;-p). And as I gradually improve, the more confident I feel.

Needing the willpower to pick yourself up when you’ve fallen off the wagon: If I’ve had a flare or a surgery etc I won’t have exercised for a week and maybe much longer. Picking yourself up and getting back into the routine can be really tough, and you often need people around you to give you a little nudge in the right direction. For me that comes from the fitness trainer who sends me nice text messages and from my friends in the group who are keen to catchup with me.

Having to face other people’s ‘little comments’: Loads of people have insinuated that I can’t really be *that* ill if I am able to exercise on a regular basis.  For a while this actually made me question myself about how sick I actually am, but I now  know how stupid this is as well as being downright rude. But I’ve realised that these people are just trying to make sense of the two conflicting narratives I am presenting them with- very sick person and dedicated fitness guru. Heck, I’m still trying to make sense of that myself. I try to explain to them how difficult it can be, how I have to work at my own pace, and about how exercise has been helping to safeguard and improve my health. They still don’t get it, but that’s OK, this is about me.

This. Always this.

This. Always this.

So, exercising with endometriosis can be tough. I should also point out that before my diagnosis I had several failed attempts at getting fit, as I didn’t know what I was doing or why I was ill so I was unable to manage myself and just made all my symptoms worse. That was pretty demotivating.

However, I think these things are far outweighed by the physical and psychological benefits I have experienced since starting my boot-camp program. For example, a couple of months ago I took a break from the exercise because of work commitments, and my pain went off the scale, which then prevented me from rejoining the group. After a while I realised my pain just wasn’t going to get better so I went back anyway. And since then I’ve only taken painkillers one time instead of multiple times a day. Many times I’ve turned up to a session in pain, only to feel it melt away as I get going. I cannot emphasize enough the huge difference exercising regularly has made to reducing my chronic pain and fatigue. My bowel problems have made a significant improvement too. Don’t get me wrong, I’m not miraculously cured, but I am in a much better place with my life now. This effect takes a few weeks of solid routine to kick in though, and during this period you do risk being more tired and experiencing more flare-ups. Pushing through while also looking after yourself is the challenge to master here. Searching online, I found examples of other women with endometriosis who have had similar results (see here for one example), so I encourage you to read them if you’re thinking of taking up some for of physical activity.

Get me squatting like a badass! The beautiful scenery motivates me too.

Get me squatting like a badass! The beautiful scenery motivates me too.

Attending the classes has also had a profound effect on my mental health, which has taken a considerable battering since gaining my endometriosis diagnosis. When driving to each session, those dark little voices in my mind are chanting ‘you can’t do this, you can’t do this, you can’t do this.‘ But every single time I do, and I never miss the opportunity to reflect on what an accomplishment that is. I honestly never feel more alive or strong or healthy than when I’m running around on that field, sweating like a pig. Sometimes it is the only point in the week where I actually feel alive; not in pain, anxious, alone, or depressed. This makes me realise how strong and fearless I can be.  I’ve also made some really lovely friends at the sessions, and that helps when you’re going through a tough time.

And I can’t write this post without acknowledging what a wonderful fitness trainer I have. I’m not religious and I don’t believe in fate or anything, but he seems to have come into my life at exactly the right time to help me through this endometriosis crisis. Isn’t it funny when these things happen?? The way he has supported and looked out for me has been very special- reading up on fitness management for endometriosis and chronic pain. He is also brilliant at tailoring the sessions to suit my needs on any given day depending on how I’m feeling.- he gets that balance of when to push me and when to stop me totally right. He can tell from the smallest of looks on my face how I am feeling and will talk to me about it in such a sensitive and thoughtful way. To this day when I answered the question ‘How are you?” with my usual ”Fine thanks’‘ he is the only person to look at me and say ”I know you’re not. Life’s just a bit shit right now yeah?” Cue floods of tears. When I had a break and was in constant terrible pain (as I mentioned above), he gave me free personal training sessions for a month to get back into things and to help me develop my confidence again. He is totally life coaching me too- this guy is an absolute legend.

So if you’re interested in taking up exercise to help with your endometriosis,  I have the following tips from my own fitness journey that may be helpful. This is, of course, aimed at people who are not incapacitated from their endometriosis and are capable of being up and about most days. I totally accept that some people are in too much pain to exercise:

  • Start slowly and build it up- maybe with swimming and/or walking. I went head first into a boot-camp (as I’m pathologically drawn to extremes) but I wouldn’t actually recommend doing that straight away.
  • Try and find a trainer/ instructor who you can confide in, and who is knowledgeable and supportive.
  • Build a fitness plan and stick to it- maybe Monday, Wednesday and Fridays as non-negotiable, even if you are feeling tired or awful.
  • But conversely, know your limits and if you are too unwell stay at home and don’t beat yourself up about it.
  • If you can do something, it is always better than doing nothing, even if it is just a walk.
  • Join a group activity- you will meet new people and it will keep you accountable for sticking to your program. You will turn up if they’re waiting for you.
  • And lastly, believe in yourself. You CAN do it and you deserve the benefits it will give to you!

I’d love to hear your stories (positive or negative) about exercise and endometriosis. What type of activities work for you and what doesn’t? 🙂

Love,
Claire
xxx