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

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

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