The Magic of Music, Part 1

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

 

Save These For Future Use, Part 1

Last week I shared some quotable quotes I found on Pinterest about life with chronic illness.  Visitors to my Pinterest board, however, will also see more than just funnies and sads.  I like to save things that really capture some of the more difficult aspects of endo and chronic illness that I sometimes really struggle to articulate myself.  I’ve rounded up 10 of my favourites that you may find useful to keep around for when words fail you but you still need to explain something.  Because this post is very long, I’ve split it into two groups of 5.

Just a heads up – because I am doing image descriptions for all of these posts, this is going to look even longer than it is.  Just skip the descriptions if you don’t need them.

1)  A pain scale we can all understand

Chronic Pain Scale

With this image I’m just going to summarise the useful part, which is the pain scale (it’s surrounded by tumblr posts of people describing their issues with the conventional scale).

“10 – Unable to Move – I am in bed and can’t move due to my pain.  I need someone to take me to the emergency room to get help for my pain.

9 – Severe – My pain is all that I can think about.  I can barely talk or move because of the pain.

8 – Intense.  My pain is so severe that it is hard to think of anything else.  Talking and listening are difficult.

7 – Unmanageable.  I am in pain all the time.  It keeps me from doing most activities.

6 – Distressing – I think about my pain all of the time.  I give up many activities because of my pain.

5 – Distracting – I think about my pain most of the time.  I cannot do some of the activities I need to do each day because of the pain.

4 – Moderate – I am constantly aware of my pain but I can continue most activities.

3 – Uncomfortable – My pain bothers me but I can ignore it most of the time.

2 – Mild – I have a low level of pain.  I am aware of my pain only when I pay attention to it.

1 – Minimal – My pain is hardly noticeable.

0 – No pain – I have no pain.”

I know I’m not the only one who has gone to hospital, been asked what their pain is out of 10, where 10 is the worst pain imaginable, and thought, “how does this help anybody?”  My 10 is not the same as another person’s 10.  It doesn’t convey the actual effect of the pain on my body.  It doesn’t take into account that I have a really vivid imagination, so I’ll never rate it at 10 because it might get worse and then I’ve just broken the scale.  And is the scale linear or logarithmic?  HOW DOES IT WORK?

Now, I don’t think the scale above is perfect, but I think it might be really helpful for people with chronic pain to use as an outline for their own.  You could make a little flashcard and take it to hospital with you, so you can show it to medical professionals and make sure that you are on the same page about what the numbers mean.

In addition to making sure you and your treating team understand each other, it provides you with a consistent reference point, and it also helps demonstrate that you have actually thought about this and aren’t exaggerating.  Like many people with chronic pain, I push through it on a daily basis and the people around me have no idea that I am dealing with, say, a level 5.  My face doesn’t crack, my posture doesn’t slump.  I carry that through to hospital, where I am quiet and calm externally even though I can barely think.  I will giggle at things on facebook to distract me and make my mum watch cute cat videos with me.  I can fall asleep despite really bad pain, because pain is very exhausting.  I know that it consequently reads as me exaggerating when I say that my pain is an 8.  Having this scale allows them to know that I am not plucking numbers from thin air; I have outlined the effect the pain is having on me and made a considered decision about where it is.

Better yet, wouldn’t it be great if hospitals had charts like this so we know all the doctors are operating off the same scale?

2) What being able to work really means

A tumblr thread that reads:

mmmyoursquid: |People love to talk about whether or not disabled people can work 

but if you can work just fine and your disability is destrying your ability to have a life outsdie of work (because work takes all your energy and more)

Dead silence.  Nobody cares.”

eenymeenypia: “File this under, of you can be active for 4 hours? You can work part-time. Um no, I have to get ready for work (30 min) to get to work (15 min) get home from work (15 min) feed myself all day (30 min) maintain myself, my home and my life (15 min, yeah right), which leaves 15 min for work and absolutely nothing else.

chameleonchild: “This is so accurate, back after I’d relapsed I wanted to try and go in for one class at school so I could still stay in contact with the education system. I let slip during a meeting that I managed to drag myself to that I could manage about 4 hours aof activity a week, which the teacher sprang on to mean I was being lazy for just trying to get to 1 hour class. Never matter that it was 30 minutes travel, that I would have to get washed and dressed, that I would probably still need to recover for 3 days from it.  

Far too often abled people see the things they do as “non activities”, they don’t realise that for many disabled people these things have to be carefully planned and measured, and sometimes they simply can’t be done.

mmmyoursquid: “reblog bc the non activities thing seems really important words.”

I think this possibly sums up the concept of spoons in a way that is even more understandable for the average person.  On your average week, my life is to go to work as many days as I can manage, drag myself to the gym twice a week if I’m lucky, and spend the weekend recovering.  Some weeks I have to attend out-of-hours meetings (and some weeks I can’t manage it).  If I’m having a period of real wellness, I will join my husband in a daily dog walk.

Notice the things I’m not doing here – cooking, cleaning the house, or shopping for groceries.  Basic household stuff.  If I want to have a shower or bath, I’m definitely not walking the dog.  The only reason I manage to bath after the gym is because I get a temporary adrenaline high, which I often pay for afterwards.  I tend to only socialise on long weekends or when I’m having a really, really good week.

I am lucky.  I have more “useable hours” than many people.  However, I honestly don’t remember how I used to manage to do so much between leaving work and going to bed.  It baffles me that other people use their after work hours for more than resting and watching Star Trek.  Health and vigour seem like wonderful things.  I seriously worry for my fellow endo-warriors, though, who need to apply for the DSP, but can manage three hours of activity per day and are therefore assumed to be able to work three hours per day.  Our society puts far too much focus on productivity and not nearly enough on quality of life, even in our allegedly laid-back Australian culture.  The idea of lifters and leaners glorifies those who push through pain and exhaustion, and is of course perpetuated by those who don’t know what chronic pain and fatigue is actually like.

3) Changed lives

Image reads: “I think one of the most emotionally hard things to come to grips with, in terms of chronic illness, is wondering who I would have been without it.  I was walking a specific path that got 130% re-routed when I got sick.  And it feels like I’m in this bizarre, alternate, half baked version of my real life.  And as much as I desperately want to get back on the track I was on before, even more, I want to know where that path would have led.  Who would I have been?  What could I have been?  We always wonder what we’ll be when we grow up, and I feel like I was robbed of ever finding out.”

I think this is a really good way of explaining to people why chronic illness makes you sad.  You are in mourning for the person you could have been, or thought you were going to be.  I think it can be a tricky concept to explain.

I remember that my life was pretty much going the way I wanted until 2016, when my immune system basically packed it in and caused massive absences for around 4 months because I just got sinus infection after sinus infection, and then it carried into 2017 when my first operation went wildly wrong.  It delayed my progression from paralegal to lawyer, and then prevented my movement from civil lawyer who did family law stuff to full-time family lawyer, which was the course I wanted to take, and then took me out of litigation entirely at the end of last year.  Now I’m facing the possibility of a child much earlier than I wanted, followed by a hysterectomy.  Whilst I have enjoyed the new job, I would love to be able to go back to where those two futures branched off and see what lay down the path I couldn’t take.  Would I be making a name for myself as a good advocate?  Would children still be a distant one-day?  Would I have been able to travel the world like my husband and I wanted?

4) The in-between

it sucks too because nobody believes you. you are so alone and you have no peace no relief. At some point you even consider  suicide as your way to peace.

Image reads: “A chronic illness phenomenon

I think there’s this weird phenomenon in life, specifically in the chronic illness community.  It’s a place some of us get stuck in – the in between.  A place where you’re too sick to function in the “able world” but at the same time you seem to [sic] healthy for the chronic illness world.  You almost faint but you don’t.  You’re always in pain it’s relatively tolerable.  You’re not bad enough to qualify for surgery even though you’d benefit. You forget everything but you don’t lose time.  Your heart rate is too high to be normal but not high enough to be critical.  Your BP is low but not THAT low.  You try to find answers but seem relatively okay to doctors so they don’t want to run more tests.  You’re stuck in a place where you almost wish you were sicker so you could get helpful treatment.”  

This one goes out to everyone with endo who has been curled up on the floor with a heat-pack crying from pain, but hasn’t gone to hospital because they know doctors won’t really do anything.  This one is for everyone who has left an appointment feeling utterly invalidated or like they are over-exaggerating because their pain is just serious enough to change and ruin their lives, but not serious enough for the doctor to bother with.  This is for everyone who has wished that their ovary could explode or their uterus produce actual fireworks so that someone might take them seriously and help.

I’ve been in the in-between – I live there, I think – and it just sucks.

5) It is more than pain

Image reads: “It’s not the pain, it’s the not knowing when it’s going to stop, it’s the suffering, it’s the way people look at you as if you’re find, it’s the medical professionals not believing you, it’s the drug induced dulling of the senses, it’s the longing to do what you used to do, it’s the loss of mobility, the loss of dignity, the loss of self worth, it’s letting down your nearest and dearest when they need you, it’s the dark and lonely nights when sleep eludes you, it’s the long and lonely days when movement is difficult, AND then there’s the pain on top of it all”.  

Have you ever tried to explain what chronic illness is like to someone and then thought, I cannot possibly convey this?  I think this little post does it pretty well.  I don’t think people get that it is sooo much more than just pain.  I’ve had to take days off when my pain is actually relatively tolerable, because my other symptoms are just so overwhelming that I can’t function.  Fatigue is the biggest one.  I’ve had days where I have turned my alarm off and fallen asleep again before my hand has even left the button, and then woken up and been so exhausted I literally can’t move, even though I know that time is slipping away and I’m going to be late.  I’ve had to take days off where my drugs are working ok, but I’m experiencing all the horrible side-effects and I can’t act like a human being.  I’ve had to take days off where the pain is mild but the swelling is so huge I literally can’t bear the sensation of clothes pressing on it and so I couldn’t get dressed.  Once I had to turn up to work (when I was still in litigation) in a floor-length black maxi dress because it was the only thing I had that was loose enough not to cause problems but wasn’t pyjamas.  I couldn’t go to court or see clients, of course.

Chronic illness is a pile of problems, little and large, and one day I might just have to sit down and list them all out because I feel like that is the only way to properly explain the frustration of it.  In the meantime, I think this little tumblr post does a very good job.

 

I hope that this collation of posts and images will be helpful for you in conveying a better understanding of chronic illness to friends, family and treating teams on days when you can’t find the words yourself.

Stay tuned for Part 2.

The Biggest Difference Between Adenomyosis and Endometriosis – It’s Not What You Think

Massive CW for fertility, pregnancy, hysterectomy.

Brace yourselves, kids.  This one’s getting personal.

As you may know from recent posts, my formerly tentative diagnosis of adenomyosis is now officially confirmed.  Unlike my endo, which showed up on precisely no scans ever, my adeno showed up loud and proud at the top of my uterus on an MRI.

I’ve talked before about what adenomyosis is and how it differs from endometriosis.  The biggest difference for many is that adenomyosis can be cured by a hysterectomy, which endometriosis cannot.  That’s kind of what I’m getting at with this post, but also not.  It’s the results of that dissimilarity that has been the biggest difference for me.  For the first time, I’ve had to think really seriously about what I want from my future.

I’ve flirted with the idea of children before.  I mean, I am married, and in my late twenties, so it is something that many people would assume is the next natural step for me.  I’ve kind of always assumed I would end up with children, because it’s what you do, right?  You grow up, you meet a nice boy, you get married, you have two and a half children and a white picket fence.  The circle of life, etc.  At the same time, however, I have never been overly maternal.  I don’t get clucky when I see a baby.  I’m not all get-it-away-from-me – I can hold them competently enough, and I can entertain children for a few hours (it literally used to be my job, after all), but I never really felt the need to have one myself.  Add to that the fact that there are so many children in need of a good home, that our planet’s population is increasing at a rapid pace, that I could potentially pass these awful diseases onto a daughter, and that I really resent the idea of taking yet another hit to my career and to my body when both have already had to endure a great deal, and children just never became an immediate priority.

There’s also the fact that I’m terrified of pregnancy and childbirth.  It looks hard.  It makes your ribcage expand.  All these awful words like “episiotomy” and “tearing” get tossed around.  The thought of losing bowel control in front of a bunch of strangers, and worse, in front of my husband, also doesn’t appeal.  It’s undignified and painful, and I’ve had enough of both.

But now I have adeno.

As long as I had endometriosis I knew that I would have to make a decision on the topic at some point, because endometriosis *may* have an impact on my fertility.  My original plan of leaving it to my thirties was not one that various doctors have encouraged.  Still, I assumed I had time, and that at some point down the track some sort of maternal instinct might kick in, or I might at least feel a bit ready.  It hasn’t to date.

With adeno, however, suddenly the possibility of an outright cure is being dangled in front of my nose like a very shiny carrot.  One operation – albiet a serious one – and my pain could be gone.  My endometriosis is being managed so well by Dr Edi-Osagie that for the first time in years, the prospect of a fully pain-free life seems within my grasp.

Of course, if I have a hysterectomy, then it is bye-bye to the prospect of biological children.  Yes, adoption is an option, but let’s not pretend that it is easy, cheap or inevitable (multiple chronic illnesses tend to count against you in the assessment process, I do believe).  So now I have yet another of those awful choices that endo and adeno leave you with – do I endure the pain for longer, and potentially experience more when my contraceptive devices are removed, in the hope of conceiving a child, or do I jump at the chance of a cure right now and lose the choice forever?

If I chose the first option, how long do I wait?  I always wanted to be financially stable before bringing a child into the world, and I’m not badly off, but I’m not where I would ideally like to be.  I wanted to be further into my career.  I wanted to have travelled more.  I wanted to do a lot of things that endo has prevented me from doing, but that a child will also make more difficult.  I wanted to feel more ready, more sure.  It’s such a big decision – is it fair for me to be making it with even the slightest doubt in mind?  What do you do when you have doubts about either option?

Is it fair of me to put my husband through this?  I’m already a bit of a burden at times (many times).  My pregnancy could be really difficult and make it even harder on him.  He’s self-employed where as I have a stable income – there’ll be an additional financial pressure on him.  If I do successfully carry to term – let’s not forget that miscarriage is a heightened risk for women with endo – will I be able to recover from the birth easily, or will my health struggle like it does with everything else?

What if I’m a terrible mother and my child grows up to be an incel or something?

Ok, I’m less worried about that last one.

On the flip side, I don’t know if I’m ready to lose that choice.  When I bake a cake or read a great book or see a fantastic movie, I think, “I want to share this with a child someday.  I want this to change them the way it has changed me.”  I want to share these things with a younger generation, and it’s at the moment it’s not likely I’ll get to do that in a “cool aunt” capacity.

Either way, it is a huge decision, and I’m wrestling massively.  I think I have decided, but I keep flip-flopping.  Whatever I end up doing, though, I resent the adenomyosis for forcing me to make this decision before I am ready.  I resent the endometriosis for stealing away my chance of doing all the things I wanted to do as a young married couple before I had children.  I resent that being a chronically ill woman is littered with such awfully difficult choices.

Have any of my readers faced this decision?  Were you ambivalent about children?  What were your thought processes?  I am so keen to hear from anyone in a similar situation.