2020: Hopes for the Future

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Buckle in, friends. This is a long one!

I’ve written before about how the new year is always a time of hope for me – even though it is really just a Tuesday turning to a Wednesday, divided by the fairly arbitrary line of 31 December and 1 January, it always feels like a clean slate. I’ve also written about the importance of people with endo being realistic in their goal-setting. Today, I want to talk about my goals for 2020, and hear yours.

First, a brief note on my 2019 goals. I achieved two of them. They were to improve my Arabic, get my scuba qualification, and read the Old Testament of the Bible. Well, I succeeded in my scuba qualification (a few months later than planned) and will be getting my advanced qualification later this year. I managed the Old Testament with time to spare, and I’ll crack on with the New Testament in 2020. As for Arabic – turns out that is really hard to learn yourself, because trying to get any two courses, youtubers or Arabic-speaking friends to agree on the way to say something is impossible. There are too many dialects, and trying to find a consistent source for Modern Standard Arabic was a wild goose chase. However, I did start Mandarin lessons, and I can now tell you ‘Wo mao feichang shuai,’ (my cat is very handsome), although apparently you should only say ‘shuai’ about people, not cats, even though Max is a very handsome cat indeed.

IMG_0023.jpg
Image description: A ginger striped cat with green eyes is lying on his side on a concrete floor, looking just below the camera. There is a garage roller door behind him.

Ultimately, I think I took the lessons from my own post to heart, and the Arabic failure was because I lacked resources (which I should have researched more) rather than because my goal-setting process was flawed.

This year, my goals are a little different. I still want to finish off the Bible by reading the New Testament, which is fairly easy to plan out and achieve; it just requires a bit of commitment. My other two are more projects than goals.

Project 20 in 2020

My first project is very involved. Have you heard of the ’20 in 2020′ craze that’s sweeping the bullet-journalling community? Basically, you set 20 goals to complete in the year 2020 – bonus points if they somehow incorporate the number 20 (e.g. 20 days with no social media, 20 days of walking 20k steps or more, etc). Now, trying to do 20 sets of 20 things isn’t realistic for me, so some (most) of my goals are per month instead. I’ll be trying the following:

  1. Publish 20 posts on this blog!
  2. Reading 12 types of books I don’t normally read (e.g. I’m a fantasy/sci-fi girl, and rarely read autobiographies);
  3. Reading 20 books by women (my first list was a little male-heavy; this list is also diverse in terms of ethnicity and genre);
  4. Watching 12 movies I don’t normally watch (I’ve committed myself to such cinematic horrors as a gangster film and a sports film – two genres I would never normally touch);
  5. Listen to 20 new artists (I felt like 20 works for this category as it is pretty easy to listen to music – please leave some recommendations in the comments!);
  6. Go on 12 walks around the local region;
  7. Go on 12 adventures (a coast trip, more scuba, a day at a museum, laser tag – anything fun and different);
  8. Go on 12 dates with my husband;
  9. Run 20km per month (or swim 4km, if running isn’t possible);
  10. Go to the gym twice a week;
  11. Save 20% of my income;
  12. Write monthly emails or letters to my grandparents;
  13. Write monthly notes to my sponsor child;
  14. Bake 12 new things;
  15. Cook 12 new meals;
  16. Complete 12 art projects;
  17. Do 12 pieces of calligraphy;
  18. Complete 12 pages in my beautiful Citrus Book Bindery journal that my wonderful parents bought me for Christmas;
  19. Get rid of 20 items of clothing (that is a net reduction – if I buy 20 new things and get rid of 20 old things, that doesn’t count – I’d have to get rid of 40 old things. Getting rid of can mean selling, donating, re-purposing, or binning only if it is beyond salvation, as a way of trying to live green).
  20. Finish one computer game per quarter (I’m terrible for buying a bunch of games and then just not finishing them, unless they are Batman or Tomb Raider).

Now, this may be an epic failure, because on the face of it, it breaks a lot of the rules I set out in my goal-setting post. However, take this list with a pinch of salt, because it has two important rules.

  1. My health comes first. If trying to complete these things starts to cause my health to decline, everything else takes a backburner, no guilt, until things are back where they should be.
  2. Even if I remain in perfect health all year, this is a list to try, not a list I will berate myself for not completing. The aim of this list is to be open-minded, try new things, have adventures, and see if I can be a more well-rounded, better-educated person with more experiences at the end of it. I want it to make me into someone who doesn’t put things off for another day (which tends to result in them not getting done ever). If I manage that, this is a success, even if I don’t complete a single category on this list.

I want to do it all, but if I can’t, I’m not going to be unhappy with myself. I will only be unhappy with myself if I don’t even try.

You’ll notice I haven’t put traditional New Year’s guilt goals in there (lose 20 kilos, for example). This list is about making me better and happier through new experiences and good habits, not about guilt.

Project Better Life

My second project is to take control of my life again. Last year, my goals related to singular events that I wanted to achieve, and once achieved (or abandoned) I kind of just drifted along a bit. This year, my focus is broader.

What does reclaiming my life look like? Well, it involves the following:

  1. Using my time productively: instead of mindlessly scrolling the internets or watching something on Netflix I’ve seen a hundred times before, I’m going to use the time in furtherance of my other goals. That might mean reading one of the books from the above list, using my commute to listen to Audible or a new artists,, spending time with my husband, or going to a gym class. My time is valuable and could be used for so many good things. I don’t want to waste it any more.
  2. Follow the two-minute rule: if a task can be done in two minutes, do it. That means no more floordrobe, breakfasts prepped ahead of time, etc.
  3. Being consistent and persevering until I have good habits: I’m going to set myself tasks  and schedules(flexible and subject to illness) to see what sticks and what I can keep up with. For instance, I wake up earlier than my husband, so if I can get a load of laundry into the machine on Saturday mornings before he does, I’ll actually have my favourite undies clean and ready to go each week instead of having to resort to the Emergency Knickers (you know, the ones that aren’t that comfy and maybe give you a wedgie but you just can’t justify throwing them out so you shove them into the back of the drawer and wear them when the other ones aren’t available. I’m sure I’m not the only person with this sort of underpants division). Once things are automatic, they’ll be easier to keep up.
  4. Acting mindfully, deliberately, in pursuit of my long- and short-term goals, and in support of my mental and physical health. I want the choices of what I eat, what I use my time for, what I do at work, to be deliberate and take me in a specific direction. I am going to check back in with my goals regularly to make sure I stay on track.

The reason for this project is simple: endo – any chronic illness, really – robs you of control. I already know that when I have a habit, it is easier to keep it up when I’m lacking in spoons and just want to collapse. I know I sound like a self-help book right now, but I’m feeling positive. I want to ride this wave of energy through the first quarter of the new year and into new, good habits. Once I hit the quarter-year crisis, hopefully I’ll be fore-armed and be able to keep things up on a more long-term basis.

You’ll notice none of the above relate to my endometriosis specifically. You just can’t plan for or control chronic illness. All you can do is deal with it as it happens and keep your mental health strong.

Once again, I’m using my Leaders in Heels ‘Make It Happen‘ planner as a goal-setting tool. I’m not sponsored by LIH or anything; I just really love this planner. It has a great layout and devotes a heap of space to breaking your goals down and referring back to them.

What are your goals and plans, dear readers? What do you want to change this year, if anything? Do you set goals? Once again, please drop recommendations for new music in the comments – new adventures too! I’d also love to hear your thoughts on what you want to see in Bubbles in the Brain this year. Do you have questions about endo you want answered? Topics you wish I’d write about? Let me know.

 

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2019: Lessons Learned

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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!

Decisions, Decisions, Part III: Medical Treatment

Published on by Bubbles in the Brain1 Comment

TW: weight gain/loss, disordered eating, suicide, depression.  

I apologise for my delay in posting, dear readers.  Yet another cold has been kicking my backside.  

I am not a doctor.  Nothing in this post should be considered to be medical advice.

I know for sure that I am not the only endo-haver out there who has had a medication, experienced horrific side-effects, and decided that it simply isn’t worth it, or had second thoughts about whether they should have surgery or not.  These days, I’m relatively confident in making my own decisions about medication and treatment, occasionally in defiance of doctor’s orders.  However, for younger, less confident, or less experienced people, this might seem a very daunting decision,  so I want to write a bit about how you make it.

First, let’s talk about medication or surgery and whether or not you want to take it/have it or stop taking it.

If your doctor is suggesting you go on a new medication, you should ask the following:-

  1. What do you expect the medication/surgery to do? (e.g. reduce pain, remove pain, increase fertility, etc)
  2. How does the medication/surgery work? (e.g. by blocking nerves, by slowing endo growth, by changing hormone levels, removing endometrias)
  3. What are the likely side effects?
  4. What are the possible but unlikely side effects?
  5. Which side effects should I just deal with, which should I see a doctor about, and which should I go to emergency for?
  6. How long will it take to work/relieve my pain?
  7. If it doesn’t work, what are the next steps?
  8. If I don’t take this medication/have the surgery, what will happen?
  9. What are the alternatives?
  10. How much does the surgery/medication cost? (I hate that this question is relevant, but it is.  My current meds are more than $350 every six weeks, which may be a bit more than some people can reasonably afford).

A good (or legally savvy) doctor will tell you stuff like this without asking.  Most medication also lists all this stuff on the leaflet that comes with it, but it’s good to hear it from your doctor (and ensures that they are familiar with what they are prescribing you).

Pay attention to the possible side effects.  Just because a side-effect sounds appalling, don’t assume it will happen to you – remember, the worst side-effects tend to be rare.  However, do look out for effects that will be particularly problematic for you.  If you have thyroid issues, diabetes, or PCOS, watch out for medications that mess with your weight.  If you have a history of disordered eating, pay attention to side-effects that may cause you to lose or gain appetite, either one of which could cause a relapse for you.  If you have a history of depression or suicide attempts, look out for medications which exacerbate those.  If you have concerns of that type about the possible side-effects, raise them with your doctor.  Explain your history, ask how you can manage the symptoms, and talk about what to do if they become an issue.

If your doctor does not acknowledge your concerns or does not take them seriously, go and get a second opinion before taking the medication.  Mental health is serious and you should not mess around with it.

Bear in mind that side-effects for surgery are likely to be far more long-term and less easy to reverse than side-effects for medication.

Many people also ask their peers in support groups or forums online about their experiences with the medication or surgery.  This is all well and good, and can be useful if you are experiencing some unusual effects and want to check you aren’t alone.  However, remember that everyone’s disease and responses are different.  Six people could take the same medication and have extremely different responses.  Just because others in a group have had bad experiences doesn’t mean you will.  Likewise, just because others have liked it doesn’t mean you will.  Ask, by all means, but more to be prepared than to determine whether or not you will take it.

How you actually decide is based on what you value most.  Is the doctor really hopeful about the meds helping you?  How concerned are you by the potential side-effects?  Do you trust the doctor prescribing the medication?  In the end, you have to do a cost-benefit analysis and decide if you think it is right for you.  Generally speaking, I take the approach of “give it a go” with medication, because I can always stop it.  With surgery, I am now fairly cautious, because my first one really messed me up.  That being said, I also had three surgeries between November 2017 and October 2019.  I kind of let my level of desperation for pain relief be the guide on whether or not I have surgery.  Doctors (most doctors, anyway) don’t tend to jump straight to surgery., so generally it is a “desperation” sort of remedy.  However, I don’t know if that is necessarily the soundest reason for making a choice.  Please do consider it all carefully, even when desperate.

Now let’s turn to what you need to consider when deciding to discontinue a medication.  For this, there are really only two questions, unless your doctor calls you in a flap saying something has changed (like they’ve found a cure, or the medication is actually killing you).  These questions are:-

  1. Is it working?
  2. Can you deal with the side effects?

Sucktastic as it is, I have yet to encounter an endo medication that doesn’t have a side-effect.  It’s currently just one of those things that are part of our very annoying fate.

Now, if you answer the above two questions “no”, then the answer is that you should speak to your doctor urgently about discontinuing the medication.  Now, please don’t take this as medical advice, but if a medication is giving me no relief or improvement and the side effects are driving me mad, I will just stop taking it and tell my doctor, not ask them.  This is something I am particularly likely to do if getting in to see my specialist is going to take a while.  I’ll give you an example: Visanne, for me, gave me no relief whatsoever, and in fact made me feel like my pain was worse.  It also gave me a rash of gross, painful, itchy, pustules across my face, neck, shoulders, back, chest and scalp.  It was horrible.  My specialist was a three-hour drive away and appointments would be a few weeks to get.  I just stopped taking it.

It becomes more complex if the medication is actually helping your pain, but also causes you horrific side effects.  At that point, I would generally wait to consult with your doctor if you possibly can, and compare your pain levels on the medication to your pain levels without it.  Which is worse for you, the side effects, or the pain?  What are your alternatives if you stop this medication?

Ultimately, I can’t tell you where to draw the line.  You need to choose what’s best for you, and what you can or can’t live with.  However, I hope that this post has given you some guidance about what to factor into your decision.

Have you had to decide to stop a medication?  What drove your decision?  Is there anything I haven’t considered?  Let me know in the comments!

August Gratitude

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August has slipped away and we are finally into spring! Before I can celebrate the joyous arrival of that lovely season, though, I want to talk about what I was grateful for in the final month of winter.

I’m sorry it has taken me so long to do this.  I ended August on a bad note, with a solid two weeks of pain that eventually got so horrific I was forced to take a week off.  It’s always super depressing that happens, because you start questioning the effectiveness of your treatment and eventually spiral down into deciding that nothing will fix you and you are doomed to be eaten alive by your own uterus.  It’s hard to be grateful in those circumstances and it has made this list a little harder to complete.

Nevertheless, grateful I am and grateful I will continue to be.  Here’s what about.

1) Having a warm home

I used to volunteer in a men’s homeless shelter overnight in winter. You’d sleep on the ground in the church hall we were given for it, inside a sleeping bag. Even with my cosy sleeping bag, it was chilly. Of course, I only had to do that one or two nights a month. For the men that utilised the shelter, they had to sleep in those conditions or worse every night.

Burning Firewoods
Image description: a wood fire burning in a brick fireplace.  

Australia can get cold at night. Really cold. Dying of exposure is a possibility. Each winter I am grateful for four walls and a roof, a warm bed and fluffy pyjamas.  I am glad that my pets are also safe and warm around me.

2) Wonderful work friends

As I noted in July, our team grew again, and I’m delighted that our new additions are, like my existing colleagues, smart, capable, hard-working, kind, hilarious women that I can have a good laugh with even whilst we are working under heavy pressure to produce good stuff. With or without these ladies, my work would be interesting, but they make it delightful. People really do make a workplace.

3) New suit

It’s red. It’s fabulous. It was on sale. Enough said.

Image result for review australia aries jacket
Image description: a blonde white woman wears a black dress with flowers printed on it and a dark red blazer with a waterfall front.  This is the jacket from my new suit.  Image and jacket from Review Australia.  

4) Blue skies

You know those windless winter days where the air is still crisp and cold but the sun is beautifully warm and the sky is a perfect rich blue without a cloud in sight? Australia does those days well. I love them, and the end of August gave me plenty of them.

5) Gorgeous sunsets

The sunsets really started to get pretty in August. They’d be gold at the horizon, fading up through pink, into violet, through all the shades of blue. The city skyline and the hills around were silhouettes perfectly against it. It was all just super pretty.

6) Two straight weeks of work

Sure, I ended August with a horrific flare-up and the two weeks leading up to them involved a fair amount of pain, but I managed them at work and I achieved good stuff.

7) Age of Empires

Image result for age of empires
Image description: computer graphics showing some short wooden towers and walls on either side of a path.  There are trees and cliffs to their right.  Further to the right is a stone house and a stone tower, looking over the coast line.  In the very blue sea is a dock and three little ships.  The text across the picture reads, “Age of Empires II: HD Edition.”  

 

I got my first copy of AoE in a box of Nutrigrain. It was great. My sister and I soon acquired Age of Empires II: Age of Kings. We were thrilled when Age of Empires III came out. It’s fun, it’s pretty, you get to fight the French. I went on a bit of a binge during August and enjoyed not only the game, but the nostalgia too.  There are many different nations to play as and against, each with their own distinct characteristics and style.  Also exciting: apparently there is going to be an Age of Empires 4 released next year.

8) B12 spray

Image description: a white spray bottle with a blue label that reads: B12 Liquid.  

I take a LOT of vitamins. Between the IBS and the endo and the various deficiencies, I have to swallow a lot of tablets. Not only is a sublingual spray a more efficient way of absorbing B12 (particularly important for vegans), it’s relatively tasty and it is one less pill to have to force down your throat.  It’s actually a big relief for me to find a way to take this important supplement without having to fight nausea to do it.  I use this bad boy: https://www.discountepharmacy.com.au/bioceuticals-b12-spray/

9) Tofu

Maybe it sounds like a silly thing to be grateful for, but I really am.  It’s such a versatile and delicious food.  It’s really quick to cook and it doesn’t cause me digestive issues.  It’s very nutritious, with plenty of protein and surprising amount of iron for a such a pale, flabby-looking food (I always associate iron with dark colours like kale or spinach).  I particularly like it as a scramble (crumbled into a frying pan with oil and whatever herbs, spices and vegetables I fancy) or fried in a coating of salt, pepper and flour.  Yum.

10) My parents

Once again, my parents helped me out during my week of sickness.  My mum came out twice, brought me some groceries and did some of my laundry, and my dad came out once, drank my tea and then had to leave because he’s allergic to my cat.  Having help with the chores went you can’t stand is just the biggest weight off your mind – not only does a cleaner space make my mental health better, it relieves the pressure on me and on my husband, who of course otherwise has to pick up the slack when I’m sick.  Even just having company makes a big difference – being home sick is a lonely, isolating experience.  You feel a bit unloved and a bit useless.  Company helps relieve that.

 

What were you grateful for in August?  Anything amazing happen?  Did you have to struggle to find the silver lining in the clouds?  Let me know in the comments.

Patience Quotes

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I AM NEARLY A MONTH BEHIND IN POSTING THIS.  I do apologise.  Chronic illness and all.

For the month of July I decided to focus on quotes about patience.  It’s a quality you need in abundance when you’re chronically ill, because nothing moves quickly.  Getting specialist appointments, getting surgery, your medication taking effect…everything happens at a glacial pace, and it feels like doctors’ favourite phrase is “let’s just wait for six months and see how it goes.”

I’ve decided to continue providing links to the authors of these quotes.  I want to make it clear that where I have quoted someone, it is not because I necessarily agree with their entire life philosophy.  I just like that quote.  I may not even agree with the quote itself in its entirety.  For example, Joyce Meyer, author of the second quote, has previously preached the Prosperity Gospel (e.g. the belief that you get what you deserve in this life, and that poverty, sickness and other bad things are a result of a lack of faith).  She has since said that she has realised that is wrong.  Likewise, I don’t entirely agree with Aristotle’s quote – the results of patience are sometimes disappointing.

On a different note, how great is today’s stock image of a pineapple waiting?  I’m not sure what it’s waiting for, but I bet it’s being patience as heck.

With all that said, here are some quotes about patience:

  1. “Adopt the post of nature: her secret is patience.” – Ralph Waldo Emerson
  2. “Patience is not simply the ability to wait – it’s how we behave while we’re waiting.” – Joyce Meyer
  3. “Patience is bitter, but its fruit is sweet.” – Aristotle (or possibly Jean-Jacques Rousseau)
  4. “Two things define you: your patience when you have nothing and your attitude when you have everything.” – Anonymous
  5. “The secret of patience is to do something else in the meantime.” – Croft M Pentz
  6. “Patience has its limits. Take it too far, and it’s cowardice.” – George Jackson
  7. “Patience is the companion of wisdom.” – Saint Augustine
  8. “Have patience will all things, but first of all with yourself.” – Saint Francis de Sales
  9. “It is easier to find men who will volunteer to die, than to find those who are willing to endure pain with patience.” – Julius Caesar
  10. “Good character is not formed in a week or a month.  It is created little by little, day by day.  Protracted and patient effort is needed to develop good character.” – Heraclitus
  11. “I am patient with stupidity but not with those who are proud of it.” – Dame Edith Sitwell
  12. “Faith is not simply a patience that passively suffers until the storm is past.  Rather, it is a spirit that bears things – with resignations, yes, but above all, with blazing, serene hope.” – Corazon Aquino
  13. “Fortune knocks but once, but misfortune has far more patience.” – Laurence J Peter
  14. “Abused patience turns to fury.” – Thomas Fuller
  15. “How poor are they that have not patience!  What wound did ever heal but by degrees?” – William Shakespeare
  16.  “Everyone ought to bear patiently the results of his own conduct.” – Phaedrus
  17. “Hopelessness has surprised me with patience.” – Margaret J Wheatley
  18. “Teach us, O Lord, the disciplines of patience, for to wait is often harder than to work.” – Peter Marshall
  19. “What we all need to do is find the wellspring that keeps us going, that gives us the strength and patience to keep up this struggle for a long time.” – Winona LaDuke
  20. “All men commend patience, although few are willing to practice it.” – Thomas von Kempen
  21. “A healthy male adult bore consumes each year one and a half times his own weight in other people’s patience.” – John Updike
  22. “Most men pursue pleasure with such breathless haste that they hurry past it.” – Søren Kierkegaard
  23. “Patience is not passive, on the contrary, it is concentrated strength.” – Bruce Lee
  24. “We could never learn to be brave and patient, if there were only joy in the world.” – Helen Keller
  25. “I am extraordinarily patient, provided I get my own way in the end.” – Margaret Thatcher 
  26.  “Nothing else is necessary but these – love, sincerity, and patience.” – Swami Vivekananda
  27. “Patience isn’t a virtue; it’s a necessity.” – Lou Holtz
  28. “Almost everything is outside of your control. You may take all the right actions and fail. You may take no action and win. All you can do is put yourself is positions to win. Be consistent. Patience will eventually get luck on your side.” – Crypto Seneca
  29. “All good things arrive unto them that wait – and don’t die in the meantime.” – Mark Twain
  30. “The more you ask how much longer it will take, the longer the journey seems.” – Maori saying
  31. “What may not be altered is made lighter by patience.” – Horace

How do you help cultivate patience in your own life?  What tests your patience most of all?  Let me know in the comments.

 

 

Decisions, Decisions, Part II: Changing Doctors

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If your doctor dresses in a Renaissance plague mask, it might be time to consider a change.

To most, changing your doctor might not seem like a significant decision. However, when you have an illness that is pretty much guaranteed to haunt you long-term, your specialist is one of the most important people in your life. You rely on them for the overarching framework of your day-to-day treatment, and for the major things – operations, significant medication – that will ultimately steer your health journey. With endometriosis in particular, you have to talk to them about some deeply personal stuff – everything from your family planning to the sensations in, well, personal areas. At some point, they will almost certainly ask to conduct a fairly invasive examination of said areas. You want this person to be someone you trust. You want them to listen to you, believe you, and help you.

But what if they don’t? What if your specialist, whom you have trusted with your pain and probably your resultant heartache, is dismissive, insensitive or rude? What if they simply have run out of ideas? When do you say, “enough is enough” and decide to switch?

These are some of the important questions to consider when making your decision.

1) Are there others in the area?

This is less of an issue for those in populous, well-resourced cities, where specialists abound. However, in smaller towns or remote areas, your next closest specialist could be anything from a few hours to over a day’s drive away. Can you commit to travelling that distance for appointments? If you can, by all means, crack on. If it is more challenging for you logistically, you will need to weigh the issues with your current specialist against the issues with physically getting to the new one.

If you can travel, it can be worth it. Good specialists often congregate where there is high demand for their skills. To see one of my specialists, I travelled three to four hours each way (including post-op). To see my current specialist in person, I travel to the UK (although I’ve only done that once and he kindly consults by Skype). Whilst travelling halfway around the world is admittedly extreme, for me it has been worth it, because I couldn’t be happier with Dr Edi-Osagie. Even the three-hour journey for my previous specialist was worth it at first, because the quality of care I was receiving was significantly better than I felt I was getting closer to home.

2) Can you afford it?

Some specialists are cheaper than others. Some have a huge up-front cost but a lower ongoing cost, whilst others have a reasonably low cost for their initial appointment but higher costs overall. Some insist on an initial scan, at additional cost. With others, you may have to factor in additional travel costs.

3) What is prompting the change? Can a new doctor do more?

I’ve changed specialists three times. The first time, I lost confidence in her ability to do anything to help me. The second time, I felt like he didn’t believe me when I described the severity of my pain. The third time, he seemed too fixated on the idea of pregnancy as a cure, even whilst acknowledging it was a temporary fix at best, and it was clear our ideas about acceptable quality of life were not the same. With each doctor, I left the appointments feeling hopeless and a bit worthless, like it was my fault that I had this pain.

When the problem is a values clash, as with my second and third doctors, I think that changing specialists (all else being equal) is a straightforward decision. Life with endometriosis varies from hard to downright horrific. Enduring it is difficult even with everyone on your side. It is borderline impossible when the person who is supposed to be treating you gaslights and undermines you instead.

It’s more complex if your specialist can’t help you reduce your pain. It might be that they have reached the upper limits of their own knowledge, and another specialist could have new ideas or greater expertise. Alternatively, it might be that your disease has simply reached a stage where conventional medical treatment simply cannot assist you. This is an important distinction and one you should have with your doctor. If they are honest and have integrity, they’ll be able to tell you whether someone else can help where they can’t. It might still be worth getting a second opinion, especially if your relationship with your specialist isn’t that good or you feel that they are offended by the question.

Likewise, it is important to check out your specialist’s qualifications. If they are a fertility specialist first and deal with an endometriosis as a consequence of that, you may be able to get more advanced treatment from someone who focuses entirely on endo. If your surgeon has only tried ablation, it could be that excision is what you need. However, if you are already seeing someone at the top of the game, it could be that you have just run into the barrier of awfulness that is severe endometriosis.

4) What else can you do?

This question can mean “are there alternatives?” or it can mean “are there things I can do as well as change doctor?”

Alternatives may be explaining to your doctor how they have made you feel, if you think they will be open to changing.  It may mean staying with your primary doctor but seeking a second opinion, just to be safe.

Additions may mean making a complaint about your doctor to AHPRA, making a complaint to their practice, or commencing legal action against them.  I do not recommend taking to facebook or anywhere else and complaining about them to the general public.  It is far too easy to find yourself smacked with a defamation case by doing that, and that is the last thing you need.

If you do intend to sue your doctor for personal injury (if they’ve caused an injury, that is) please be aware that there are very strict time limits on your ability to do so, so get yourself to a lawyer ASAP for advice on your prospects.

 

Have you had a bad experience with a doctor that made you change to someone else?  Were there any limiting factors on your decision?  Let me know in the comments!

Decisions, Decisions, Part I: Employment

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As my regular readers will know, at the end of last year I made the very difficult decision to leave my job as a litigation lawyer and move into a more policy-focused role without any litigation element. It was a big change, and it felt like a big loss. As much as I adore my new job, there are certainly elements of my old job I miss. Most of all, I am sad that the decision wasn’t one I could make because I wanted to, but because I had to.

Now, as my endo and adeno continue to cause trouble, I’m faced with another decision – reducing my hours.

Today, I want to talk about how you make these types of decisions. I highly recommend using a journal to write down your thoughts on this, or to talk at someone. I find it helps solidify my reasoning and makes me think it through logically and thoroughly.

Basically, there are a lot of questions to ask yourself.

First, and most obviously:

1) Can you physically do it?

Whether you are asking this about the number of hours your are working, the type of work you are doing now, or the type or work you are looking to move into, it is the most basic consideration. If you cannot get through a full day without the pain driving you to your knees, or sending you to the bathroom to cry multiple times a day, or forcing you to take serious painkillers that compromise your ability to do your job in other ways, it might be time to rethink your current work.

When thinking about this, don’t just take into account whether you can struggle through a work day. Think about whether you can get through a work day and still have the strength to feed yourself, keep yourself clean, and complete those basic necessities of life? Life does not begin and end with work, and if a full-time day in your current role results in you collapsing into bed fully dressed as soon as you crawl through the door every day, that job is not working for you. Some days like that are a reality for many people with chronic pain, but if that is the majority of your days, it is not sustainable and you will end up in a really, really bad way.

2) Are there changes you could make that would let you keep the status quo?

Now, it may be that cutting your hours is the change that lets you keep your job, but other things might work too. If you work in a standing role, such as at a checkout, and you find that painful, could your employers give you a chair? If you have an office job that involves sitting all day, could a sit-stand desk help? Would a heatpack at your desk make a difference? If you struggle more in the mornings, could you start and finish work later, or vice versa if your pain is worse in the evening? Is there any way you could work from home for a day a week?  If you have to wear a uniform, are there allowances that could be made for a stretchier waistband or more comfortable shoes?

Remember that the Disability Discrimination Act mandates people making reasonable adjustment for disability (see section 5). If you aren’t sure that what you are asking for is reasonable, or your work is saying it isn’t, consider a chat with a lawyer. Legal Aid commissions around the country have helplines for free advice, and many lawyers will give you a free initial consultation or do the first 15 minutes for free.

Please note that the above is not legal advice.

Ultimately, though, if there isn’t an adjustment that will do enough to let you stay where you are, that’s another sign it may be time to move on.

3) Can you afford it?

Sadly, this is the worst question, but it is one of those horrible realities that ultimately dictates what you choose. It can put you in an awful situation where your body can’t physically afford for you to keep working, but your family (or even just you) can’t afford for you to not. Let’s not pretend that the DSP is a lot of money, even if you can get it, and Newstart is even worse.

That being said, it is still a relevant consideration. If you have a marketable, flexible skill, there might be things you can do to supplement or create income outside of Centrelink. For example, if you are fluent (and certified) in a second language, you could pick up some translation or phone interpreter work. If you have good English skills and can work at a computer, editing or transcription might be good. If you are a superb knitter, perhaps there is an Etsy store in your future. With all of these, though, bear in mind that your income is reportable to Centrelink and may reduce your payments accordingly, so assess whether it is worth it for you.

If you don’t have a skill or the energy to market it, what else can you do?  Are cheaper accommodations an option (noting that moving is a big deal even when you are healthy)?  Are you eligible for government housing or rental assistance? Are there any costs you can cut down on?  These are not nice questions to ask, and I hate the idea that people have to go through this, but it is a relevant consideration.

If you know that you cannot physically work any more, but also have no idea how you can possibly afford not to work, speak to a disability advocate, social worker, or community lawyer.  Ask what funding options there are and what you need to do to qualify for them.  Get as much medical evidence as you can from your treating team.  I can’t guarantee that things will be fun or easy (in fact I can almost promise it will be agonisingly frustrating), or even that you will be able to find the answer, but it will help inform your choice.

What are your other options?

If you are considering a workplace change rather than unemployment or a reduction of hours, what are the options for you to move on to?  Is your prospective employer likely to be flexible?  Will the new job suit your needs?  Will you enjoy it?  Seriously, mental health is important.  You want to like your job, especially if you are spending a lot of time doing it.  Will the new job allow you to grow and advance?

These questions are, sadly, less important that the physical and financial needs, because, well, you need to be housed, fed, and capable of standing up.

 

None of the above will give you an answer, but I hope that asking yourself these questions helps make the decision a little clearer in your mind.  It may also help you justify it to other people (not that you should have to, but there are always judgemental people).

Have you had to make a decision like this?  How did you decide in the end, and do you feel like it was the right call?  Let me know in the comments.

July Gratitude

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TW: body image, weight gain

Can you believe we are already in August?  Some people have said that they thought this year has moved slowly, but for me it has absolutely raced by.

I’ve been slow in posting again this month due to continuing health problems – some endo, some of a more sinus-y nature – but I have plans for the months to come and some drafts saved and ready to roll.  For now, though, it’s time for me to engage in that important monthly practice – gratitude.

1)  Scuba

Bawley Point20 June 19 .jpg
Image Description: beautiful Bawley Point.  The sun is shining in a vivid blue sky above an even brighter blue sea.  There is a small sliver of creamy beach in the background, topped by dark trees.  In the foreground is rocky, grassy ground, and some big rocks with snorkel gear on them.  

I did it!  You may remember that at the beginning of the year I said that I had three goals I wanted to complete.  I wanted to finish the Old Testament (did that last month), learn Arabic (not progressing well), and  get Scuba certified.  Well, I finally did the latter!

We did some training dives in a pool over one weekend, then headed to the NSW coast for the second weekend and did our qualifying dives at Bawley Point, near Bateman’s Bay.  It is a beautiful spot to dive, and we had a lovely weekend for it.  The weather was crisp and clear, but not freezing, and the sun shone all weekend.  And under the water – so many fish!  We saw literally hundreds of Australian mado (little black and white stripey fellows with yellow tails), several Port Jackson sharks, a crested horn shark, two massive bull rays (I kid you not, these things were wider across than my car) and a sea turtle.  It was absolutely magical.

Also, I’m now a PADI certified Open Water Diver.  Yay!

2) Reconnecting with a friend

I did the diving course with a friend I haven’t spent much time with for a long time.  He was friends with my husband for years before I met him, and when I asked on facebook for people to do the dive course with me, he put his hand up.  We had a great time.  He is super into science and really enjoyed the technical side of diving, whereas I was just, “ooh, fish!”  We both loved it for different reasons, and had some really good D&Ms on the road to and from the coast.  I love getting to know people like that all over again.  Moreover, he’s just a really great, kind, good-hearted person who is lovely to be around.

3) New colleagues!

Two new people joined our team this month.  Love them both already.  Interesting and fun women.  One of them bakes.  Top marks.

4) A bit of body positivity

I haven’t had the best relationship with my body this year.  I gained a lot of weight at the beginning of the year when my Zoladex went all wild on me, and I’ve struggled with body image and self-hatred so much as a result.  Most of my hate has been directed at my thighs.  However, in learning to dive, I had to wear a wetsuit (side note: getting in and out of a wetsuit is a WORK OUT).  Underneath that, you can’t wear board shorts or anything (I normally wear these cute little swim shorts from Landsend, or a swim dress).  I had to wear my once piece, thighs out.

Women's Swim Shorts with Tummy Control
Image description: the lower half of a white person wearing black shorts in a swimsuit material.  The shorts are just a little shorter than mid-thigh.  I think they are the perfect length – more flattering than board shorts but still giving a little more coverage than just a one piece.

You know what?  I felt fine.  My thighs are a perfectly acceptable size (if somewhat glaringly white) and the exercise forced my to just embrace my body.

Sure, the confidence sort of vanished the next time I tried to squeeze into some of my work clothes from last year and realised that they no longer fit around the thigh, but it felt really good while it lasted.  I think I would feel comfortable doing it again.

5) Extra Skincare

I’ve been really into learning more about skin care in July.  If you are interested in also learning all the mysteries of what the different acids are, what you really need in your routine, what ingredients work best together, etc, then I highly recommend heading over to Beauty Within.  I absolutely do not agree with their product recommendations, which are rarely cruelty-free and almost never vegan, as well as being super expensive, but learning about the key ingredients can help you find good skincare at a fraction of the price.

Whilst I was learning about all this, Nourished Life was good enough to have a big old clearance sale.  Nourished Life sell a bunch of green and vegan products, so it’s a really good place for me to shop, and they always have free gifts or good deals going on.  I indulged in some replacements for items I needed, and explored a new-to-me brand called Andalou Naturals.  Most of their products are vegan, and they are packed with all the ingredients I wanted.  Don’t get me wrong, I love Sukin, but they don’t have certain things in them that I like in my skincare routine.  I will never abandon certain Sukin things, but I’m happy to introduce some Andalou.  I love a sale.  I love the pampering effect of new products.  Happy me.

6) New Prostap

I don’t love being on Prostap, but I like being without it even less. My last dose of the stuff turned out to be a dud batch and provided no pain relief at all. I now have a new batch and, whilst the adjustment period is rough, the pain relief is really nice.

7) Sunshine

IMG_8087.jpg
Image description: a slightly chubby ginger cat is lying in his side in a dusty dirt patch in the grass.  He has green eyes and is looking up at the camera.  There is netting behind him, and grass beyond the netting.  This is Max in his cat net.  

As the weather gets warmer and sunnier, my boy Max has been able to get out in his CatNet cat enclosure and have a little bit of outdoor fun. Max is strictly an indoor cat unless he is contained in some way. I’ve tried him on the leash, but he’s a bit nervy and can escape it when he gets panicked. The cat net lets him have the outdoor time he clearly craves whilst keeping him safe and preventing him from having an impact on local ecosystems.

He loves lounging in the sun, rolling luxuriously in the dirt, and eating the grass.

8) Opportunities

One plus side of working in a really big organisation is that there are a lot of opportunities to do different things or move up the food chain.  An opportunity came up recently and I have gone for it.  We’ll find out in August how successful I was!  Extra grateful for my kind colleagues who helped me talk myself up in my CV, and my wonderful supervisor for supporting me in going for it.

9) Trivia

I love trivia, but what I mean this time is a trivia night.  I’m involved in the social club at work, and we organised a trivia night in early July.  We raised a lot of money and were able to donate more than $2000 to charity, thanks to the generosity of my colleagues and our sponsors.

Although I was too sick to go myself, the team I was rooting for (my team colleagues) absolutely killed it and took home first prize.  Very proud.

10) Not dying in a car crash

Oddly specific, perhaps, but I have a reason.  The last days of July were a bit wet, and on the way to work one day my car spun out on the wet road on a roundabout.  I spun 270 degrees around and ended up facing the wrong way on the road.  By some miracle there was no one else on the roundabout at the time, although some people were waiting to come on, so I didn’t hit anyone else or the signs around it.  Some kind strangers stopped to check that I was ok, then stopped the rest of the traffic so I could get the car off the road.  My mum came out and waited with me while the NRMA came to confirm that it was just the greasy road and not my somewhat elderly car having a senior moment.  (It was just the wet road).  I was shaken and very late for work, but thankfully totally unharmed otherwise.  Here’s to safe driving and kind people!

What are you grateful for this month?

 

One Giant Leap for Mankind: 50 Years On

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As anyone who has been paying attention to the news will know, this year – one week ago today, in fact – is the 50th anniversary of humankind first landing on the moon.  I didn’t write about it a week ago because I was at the coast, pretending to be a mermaid and not writing anything, so I’m writing about it now.

I’ve been fascinated by space for a very long time.  I’m a huge fan of Star Wars, Star Trek and Doctor Who.  I’m currently rediscovering a love of H G Wells.  I love Glynn Stewart’s many space adventure novels.  I think Firefly was a work of art (let’s not talk about Serenity).  One reason I really, really love it – particularly Star Trek – is because it is one scenario I can imagine myself in where endo might conceivably not be an issue.

Think about it.  All the books, movies, tv shows and games set in the past, present or near future might be fun to imagine yourself in.  I love to think how I’d survive if I were suddenly whisked back to Jacobite Scotland a la Outlander, or whether I’d make it through more days than my character on his desert island on Stranded Deep.  I used to think I might have a fighting chance in a zombie apocalypse (or, at least, I might not die in the first wave).  Now, however, my imagining is usually interrupted with the thought that I would be useless and probably die as soon as my meds run out.  First my Prostap would go and my flare-ups would return, and then my implanon, and finally my mirena, and my periods would come back and I’d either get eaten by a shark or offed by the girzzled band of zombie fighters for slowing them down.

But in Star Trek?  I’m sure there’s a hypospray that will keep my hormones in line, even if a cure for endo hasn’t been definitively found in the 24th century (which I suspect it will have been).  Even if I still had to suffer flare-ups, my replicator could be programmed to provide all kinds of delicious, low-FODMAP vegan meals without me having to stand and do any prep, and my (absurdly spacious) quarters would be at the exact right temperature.  My uniform could doubtless accommodate a built-in heatpack (to be clear, I’m talking about Next Gen on here, not TOS with its classic mini-dresses).  It’s very easy to imagine myself in that world without thinking “Oh, hey, I’d really struggle and would end up dying a horrible death.”

Returning briefly to the realm of reality, it does make me a bit sad that I will never, ever be one of those lucky, talented people that blasts out of the confines of our atmosphere and explores space.  I wish I had some kind of mad physics- or maths-loving brain that would make me a useful cosmonaut, or even one of the incredible ultra-nerds of NASA.  What a privilege to be able to work on the space programme!  How fantastic it must have been to be a part of that!  Still, I’m really grateful that those ultra-nerds did what they did (and continue to do).  To me, they are representative of the most positive aspects of human curiosity, intelligence and the sense of adventure – boldly going where no one has gone before, and inspiring awesome tv shows in the meantime.

Now we just need to make endo-research as cool as space travel and entice lots of clever and/or wealthy people into doing and/or supporting it.  And then maybe we can have the first person with endo in space (although we might want NASA to find a safe way to deal with menstrual waste first!).

 

The Magic of Music, Part 1

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Music is such a powerful thing. Done right, it can invoke such strong reactions in the listener. It completely changes the tone of a scene in a movie or tv show, can get you moving on a run, or make a long drive a little more exciting.

Guess where I’m going with this.

That’s right, an endo playlist!

Sometimes, you want some songs that resonate with the pain and loneliness. Sometimes, you want something to offer hope, or buoy up your fighting spirit. Below, I’ve set out five songs that I love to listen to when I’m having a bad time.

Because this is a really huge post, I’m splitting it into two.  Keep your eyes peeled (what a weird phrase) for part 2 and another five songs shortly.

1) Head Above Water, by Avril Lavigne

I have been an Avril fan since I was a little quasi-emo teen. This song is definitely not classic Avril, but it really showcases her amazing vocal talent regardless. Written in the depths of her fear and hopelessness as she battled Lyme Disease, you know listening that this woman gets it. There’s despair, there’s hope, there’s pain, there’s resignation, there’s a cry for help. It has it all.

I’ve gotta keep the calm before the storm
I don’t want less, I don’t want more
Must bar the windows and the doors
To keep me safe, to keep me warm
Yeah, my life is what I’m fighting for
Can’t part the sea, can’t reach the shore
And my voice becomes the driving force
I won’t let this pull me overboard
God, keep my head above water
Don’t let me drown, it gets harder
I’ll meet you there at the altar
As I fall down to my knees
Don’t let me drown, drown, drown
Don’t let me, don’t let me, don’t let me drown
So pull me up from down below
‘Cause I’m underneath the undertow
Come dry me off and hold me close
I need you now, I need you most
God, keep my head above water
Don’t let me drown, it gets harder
I’ll meet you there at the altar
As I fall down to my knees
Don’t let me drown, drown, drown
Don’t let me, don’t let me, don’t let me drown
Don’t let me drown, drown, drown
Keep my head above water, above water
And I can’t see in the stormy weather
I can’t seem to keep it all together
And I, I can’t swim the ocean like this forever
And I can’t breathe
God, keep my head above water
I lose my breath at the bottom
Come rescue me, I’ll be waiting
I’m too young to fall asleep
God, keep my head above water
Don’t let me drown, it gets harder
I’ll meet you there at the altar
As I fall down to my knees
Don’t let me drown
Don’t let me drown (don’t let me, don’t let me, don’t let me drown)
Don’t let me drown (don’t let me, don’t let me, don’t let me drown)
Keep my head above water, above water

My favourite line: “So pull me up from down below, cause I’m underneath the undertow.  Come dry me off and hold me close, I need you now, I need you most.”

Listen when: you feel like no one understands

2) Heart Full of Scars, by Rebecca Black

This song isn’t about chronic illness, but it had such a fighter vibe. It’s about someone just owning their situation and doing what they need to get through it. It always peps me up a bit.

Stop
Don’t tell me how to feel
These scars will never heal
Overnight
I’m just searching for what’s real
It’s hard enough to deal
With life
Learn to say f*** it, take my time
Life’s a bitch but I’ll make it mine
Make it, make it, make it mine
Learn to take it as a sign
If you don’t like me, get in line
You won’t break me, break me with your lies
Sometimes you bleed for who you are
It’s hard to love with a heart full of scars
I won’t feed into your dark
I’ll keep loving with a heart full of scars
(Heart full of scars)
You’re never gonna keep me down
Doesn’t really matter what you’d say
I’m not living for yesterday
(Heart full of scars)
I’ve figured out how to turn it around
I’m learning how to bend, not break
A full life is give not take
(Heart full of scars)
Done with doubt and overthinking
Wait for it to sink in
I’m enough
Sick of try’na to be your perfect
The pain is never worth it
Never was
Learn to say f*** it, take my time
Life’s a bitch but I’ll make it mine
Make it, make it, make it mine
Learn to take it as a sign
If you don’t like me, get in line
You won’t break me, break me with your lies
Sometimes you bleed for who you are
It’s hard to love with a heart full of scars
I won’t feed into your dark
I’ll keep loving with a heart full of scars
(Heart full of scars)
You’re never gonna keep me down
Doesn’t really matter what you’d say
I’m not living for yesterday
(Heart full of scars)
I’ve figured out how to turn it around
I’m learning how to bend, not break
A full life is give not take
(Heart full of scars)
O-o-o-o-oh
O-o-o-o-oh
O-o-o-o-oh
O-o-o-o-oh
O-o-o-o-oh
O-o-o-o-oh
O-o-o-o-oh
O-o-o-o-oh
You’re never gonna keep me down
Doesn’t really matter what you’d say
I’m not living for yesterday
(Heart full of scars)
I’ve figured out how to turn it around
I’m learning how to bend, not break
A full life is give not take
(Heart full of scars)

 

Favourite line: “I won’t feed into your dark, I’ll keep on loving with a heart full of scars.”

Listen when: you need a pep up after someone gives you a hard time about your illness (even if it’s you)

3) Full of Grace, by Sarah McLachlan

Darling of the late 90s, Sarah McLachlan specialises in heartbroken, wistful songs. Full of Grace probably isn’t about endometriosis, but it perfectly captures the devastating impact endo can have on relationships.

The winter here’s cold and bitter
It’s chilled us to the bone
We haven’t seen the sun for weeks
To long too far from home
I feel just like I’m sinking
And I claw for solid ground
I’m pulled down by the undertow
I never thought I could feel so low
Oh darkness I feel like letting go
If all of the strength and all of the courage
Come and lift me from this place
I know I could love you much better than this
Full of grace
Full of grace
My love
So it’s better this way, I said
Having seen this place before
Where everything we said and did
Hurts us all the more
Its just that we stayed, too long
In the same old sickly skin
I’m pulled down by the undertow
I never thought I could feel so low
Oh darkness I feel like letting go
If all of the strength
And all of the courage
Come and lift me from this place
I know I could love you much better than this
Full of grace
Full of grace
My love

Favourite line: “I know I could love you much better than this.”

Listen when: you are sad about your relationship and want to wallow a bit (may make you sadder)

4) Where My Heart Will Take Me, Russell Watson

Like most people who know this song, I first heard it in the title sequence for Star Trek: Enterprise (a hugely underrated series, in my humble opinion).  It is very different from the title sequence of any other Star Trek, but I love it.  The sequence itself is a tribute to human innovation and our explorer’s spirit (as is the fan-made version above), but that’s a story for another day.  This is about the song.  It’s a song that always fills me with hope, courage to continue, and makes me think that maybe something better is just around the corner.  It inspires me to keep going.  It’s just very positive.

The original title sequence was a very truncated version of the song – the one I’ve put here is the full version.

It’s been a long road
Getting from there to here
It’s been a long time
But my time is finally near
And I can feel the change in the wind right now
Nothing’s in my way
And they’re not gonna hold me down no more
No, they’re not gonna hold me down
‘Cause I’ve got faith of the heart
I’m going where my heart will take me
I’ve got faith to believe
I can do anything
I’ve got strength of the soul
And no one’s gonna bend or break me
I can reach any star
I’ve got faith
I’ve got faith, faith of the heart
It’s been a long night
Trying to find my way
Been through the darkness
Now I finally have my day
And I will see my dream come alive at last
I will touch the sky
And they’re not gonna hold me down no more
No, they’re not gonna change my mind
‘Cause I’ve got faith of the heart
I’m going where my heart will take me
I’ve got faith to believe
I can do anything
I’ve got strength of the soul
And no one’s gonna bend or break me
I can reach any star
I’ve got faith, faith of the heart
I’ve known the wind so cold, I’ve seen the darkest days
But now the winds I feel, are only winds of change
I’ve been through the fire and I’ve been through the rain
But I’ll be fine
‘Cause I’ve got faith of the heart
I’m going where my heart will take me
I’ve got faith to believe
I can do anything
I’ve got strength of the soul
And no one’s gonna bend or break me
I can reach any star
‘Cause I’ve got faith of the heart
I’m going where my heart will take me
I’ve got strength of the soul
No one’s gonna bend or break me
I can reach any star
I’ve got faith
I’ve got faith, faith of the heart
It’s been a long road

My favourite line: “I’ve got faith to believe I can do anything”

Listen when: You need someone to believe in you

5) Healing Incantation, sung by Mandy Moore in Tangled

I’m a big fan of Disney, and Tangled is, if not my favourite, definitely near the top of the list for me.  It’s so pretty!  Flynn is so funny!  Gothel is so wicked!  Rapnuzel’s hair!  The lanterns!  I love it.

Anyway, this song really, really resonates with me.  When she sings it, I think along with it like a prayer.

Flower, gleam and glow
Let your power shine
Make the clock reverse
Bring back what once was mine
Heal what has been hurt
Change the Fates’ design
Save what has been lost
Bring back what once was mine
What once was mine

Favourite line: “Bring back what once was mine”

Listen when: You really, desperately want healing