2019: Lessons Learned

It’s been a long time since I’ve posted anything. The reason is very simple: life got in the way, as it often does. In September I was so healthy I was too busy living life to blog; in October and November I was too sick. In December I was just too lazy.

Now, however, I am back, and with a goal of publishing 20 posts this year. Let’s see if I can stick to it – 20 posts for 2020. Expect something roughly every fortnight, barring disasters.

I hope, my dear readers, that you have been well and that endo has not kept you from having a peaceful, enjoyable Christmas break. I’ve been fortunate that mine has been behaving pretty well of late.

Today, I want to kick off the new year by looking back at the old one, and recapping some of the thing I learned during it. You can also read my lessons from 2018 here. Hopefully some of these lessons will also be useful to you. Some might be totally different for you – if your experiences are different to mine please leave a comment below.

1) Big decisions can bring big rewards

At this time last year, I had quit my old job as a litigation lawyer and was waiting to start my new one as a policy lawyer. In other words, I was moving out of the world of appearing in court and arguing about the law and into the world of writing and interpreting it. It was a huge and scary move, but it was so worthwhile. I love my new job; I have learned fantastic new skills, come to appreciate an area of law I never would have previously considered, and met amazing new people. Most of all, my health has benefited enormously. Away from the intense stress of family violence litigation and in a more disability-friendly workplace, my endo pain reduced and I was able to recover when I needed to without pressure or condemnation. If you are considering a similar move, I encourage you to read my post on making this kind of decision.

Another huge decision was coming off the depot shot. I wrote about what factors to consider in making a decision like this last year, and that it how I made this one. Remember that dropping meds may not be a success story for everyone, so think carefully before doing it.

I transitioned to the depot (aka leupron or leuprorolin) after my Zoladex went wildly wrong. Depot was pretty hit and miss for me – it worked well some months, and did nothing at all others, leaving me jumping in and out of menopause like a frog with hot flushes, causing my mood, sleep cycle and weight to go wacky. After it failed yet again in November, I threw my hands up and said, ‘enough is enough.’ I didn’t get my next shot. I was expecting disaster, but instead, things got better. My pain is massively decreased and my weight and sleep patterns are returning to normal. Combined with dietary measures, I’m feeling better than I have since my first operation. I don’t know if being on it gave my body the rest it needed or what, but I’m grateful.

Despite ongoing fears, I plan to keep making big decisions with courage over the next year.

2) There will always be people who refuse to understand

Whether they be doctors, family, annoying strangers, or even other members of the endo community, there are plenty of people who will steadfastly refuse to accept what they are being told about endometriosis if it contradicts their own experience or worldview. I see this constantly in the Australian endo community – sufferers regularly report their experiences with unsympathetic family, colleagues and medical practitioners. I’ve experienced it before too. Try and gently educate if you have the energy, but if it becomes clear that you are banging your head against a brick wall, just leave it. You can only hope that enough people saying the same thing as you will eventually change their minds. In the meantime, your precious energy is better spent elsewhere.

3) We can’t hold ourselves to the same standard as healthy people

By this, I’m not saying we have a license to be awful people. What I’m saying is that we can’t always manage the same activities, and that’s ok. We won’t always get the same results even if we do manage, and that’s ok too. We are not in competition. We can only try our best, seek balance between our health and the rest of our lives, and accept ourselves as enough. Giving our all may not look the same as a healthy person giving our all, and it may cost us much more to do so; don’t try and force yourself to keep up if you can’t.

4) There are so many other illnesses

I hadn’t realised the number of other chronic conditions that so many endo-warriors deal with in addition to endo – fibromyalgia, adenomyosis, chronic fatigue, vaginismus, interstitial cystitis, and polycystic ovarian syndrome, to name a few. We are sickly, sickly children.

We are also more likely than most to suffer the various reproductive cancers – particularly ovarian cancer – because the symptoms are so similar to those we already have that we often don’t seek a diagnosis until it is too late. I’m going to write more on the different reproductive cancers and some of the other secondary conditions I haven’t covered yet a bit later in the year; keep an eye out.

5) Just as people can be cruel or ignorant, they can also be very kind

Not everyone we meet will understand endo or be nice about it, but there are some absolute gems out there. You hear stories of people with endo collapsing at the shops and being helped by random women; of people getting caught short with unpredictable periods and angels with spare pads or tampons standing by; of sufferers with no family being hospitalised and visited by other endo-warriors bearing snacks and magazines. In my own life I have my family and friends, who will do anything to help me when they know things are getting bad.

When you see that kind of beautiful act, treasure it; do what you can to spread it further. The world can seem like a really dark and awful place sometimes, but those little moments bring hope and comfort. In the words of Cinderella: have courage and be kind.

So, those are the main lessons brought home to me in 2019. What did you learn, or have reinforced? Let me know in the comments!

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