The Selfishness of the Sick

There’s a weird thing that you experience when you’re chronically ill that you just don’t feel when you are healthy.  That’s the sensation of feeling selfish for wanting to be healthy.

I’ll try and explain.

When you have a cold that won’t go away and its really bad, you go and see the doctor, because you expect, quite rightly, that a cold should clear up.  After all, healthy is your normal state and it is to that state that you would like to return.  You don’t feel selfish for wanting to be healthy again, and that is absolutely as it should be.  The doctor doesn’t imply that you should just learn to deal with being sick better, or suggest that maybe you should just settle for a less bad cold than what you have because after all, it could be worse.  They listen, they give you your antibiotics, and you generally don’t leave feeling that you are being silently judged for wanting to be rid of your cold.

However, when you are chronically ill, it’s a bit different.  First of all there is the adjustment stage, where you have to learn to accept the fact that you will never be healthy in its true sense again.  That’s a topic for another post, because it really deserves a proper article.  Even when you’ve adjusted your own expectations, though, you have to deal with the expectations of the medical profession.

When it comes to endometriosis, a lot of doctors (not all, but too many) leave you feeling like you are asking for too much.  Hospitals are the worst at this – they just want to get you to a point where they can turf you back out with a pocket full of endone and not be their problem anymore.  Contrary to what you see on House or Scrubs, there is rarely any follow-up, insistence on solving the problem or finding a miracle cure.  Hospitals won’t keep you til the pain has reduced enough for you to walk easily or return to work.  They just wait for you to say that the pain seems to be reducing slightly, and you’re gone.  I know that hospitals are underfunded and understaffed, but it really makes you feel like a massive burden rather than someone with a right to health, or even a life without constant pain.

Private gynaecologists don’t have that excuse, but they do it too.  I’ve been told that I should expect to live the rest of my life with a base level of pain at 4/10 every single day.  At my last gynaecologist, I raised an ongoing issue that was causing me pain and inconvenience and he just seemed utterly uninterested.  After all, I could walk, couldn’t I?  What is worst for me is the silent undercurrent that seems to say “Why can’t you settle for what you have?  Why isn’t this good enough for you?”  It makes you feel naive and worst of all, selfish.

It isn’t enough for me, though.  I’ve had a great experience lately with Zoladex, a subcutaneous implant that dissolves over time and puts you into artificial menopause.  It has effectively ended a three-month flareup during which I could barely work.  At my last consult with him, Dr Edi-Osagie asked me if simply staying on the implant and avoiding surgery was an option for me.

I did seriously consider it, but in the end, I decided to pursue surgery anyway.  This is for a few reasons:-

  1. Zoladex has been a big improvement on where I was, but my quality of life is still nowhere near what it was prior to my first surgery;
  2. As long as I’m on it, I can’t conceive, and whilst I’m not in any rush to have a baby I do want the option;
  3. If the surgery is successful, I can come off all of the artificial hormones I’m on and let my body go back to normal, which is something I haven’t had in ten years;
  4. Zoladex and the accompanying hormone replacement therapy is expensive (about $160 a month for both);
  5. Being in menopause does have some not-so-great side effects, such as hot flushes, an increase in peach fuzz all over my face, and messed up sleep patterns;
  6. If I don’t take the opportunity to have this surgery, I may never have the chance again, and I will regret that forever.

I felt rude, assertive, guilty and incredibly selfish saying to Dr Edi-Osagie that near enough just wasn’t good enough for me.  However, he acknowledged my concerns and was so supportive of my decision, just as he was in my first consult.  I cannot recommend him highly enough.

It is really hard, asking for more.  Previously being beaten down by the health profession and being socialised as a woman against being assertive, which society reads as bad and bossy, as well as against being selfish, makes it really hard.  Women are taught to be passive and self-sacrificing, and sick people are told to be patient and grateful for what we have.  However, the risk has totally paid off for me.  Even if this surgery achieves nothing, I can fall back on the Zoladex, something I wouldn’t have if I had settled for my previous gynae’s advice, just like I wouldn’t have had the improvements in my health that he gave me if I had stuck with the advice of the two before him.  I now have a specialist who is supportive, validating and proactive.

So, if I can give one piece of advice, it is this: be selfish.  Ask for more.  You should not have to settle for “good enough” when it comes to your health.  In the end, you may have to, but don’t stop trying as long as you have the resources to do so.  It is your health.  It is your quality of life.  You are allowed to be “selfish”.

The Problem with “Curing” Us

Today I had a really annoying and unsettling experience.  Like most such experiences, it happened on the internet.  I’m not going to post screenshots but I will talk about what happened, because people stepping over boundaries is a huge thing that most chronically ill/disabled people experience often.  I’ve touched on this before, but today I want to go into a bit more detail about why it is a real problem.

So, my friend posted a critique of Big Pharma, which simplistically stated that they create customers, not cures.  I agree that pharmaceutical companies, like every other organisation in a capitalist scheme, exist to make money, and that their pricing of necessary medication is totally unethical.  However, to suggest that they can’t provide cures at all is just misleading, as is the suggestion that the very act of creating customers by providing necessary drugs is bad.  It’s the way they do it that is the problem.  Anyway, that’s largely beside the point, although one gentleman did very kindly explain my own position to me.  How I could have understood what I thought without his assistance, I’ll never know.

What annoyed me equally as much as the above mansplainer, though, was the elderly fellow who decided to tell me – not ask, tell – to try natural hygiene.  Despite several rebuttals from me and him being shut down by our mutual friend when he implored her to tell me to contact him, he decided he was going to send me a PM about natural hygiene and offer his services again.

From my understanding of it, natural hygiene is a health movement that promotes eating clean, fasting sometimes, exercising, getting plenty of sunshine and sleeping well.  It’s based on the idea that we can help the body to heal itself.  That’s all fine and dandy and I totally support taking those steps for good mental and physical health, as I’ve outlined previously.

However, various proponents of natural hygiene also encourage rejecting all supplements and all but life-saving medical treatment or medication.  Quite frankly, I think that is incredibly dangerous and irresponsible, particularly as it is a “treatment” being marketed to desperately ill people who are often at the point of trying literally anything.  There are some diseases that the body simply cannot overcome alone, and endometriosis is one of them.

Now, giving this fellow the benefit of the doubt, let’s say he utterly believes in this system and truly believes that he can radically improve my quality of life.  Why is it still so problematic for him to contact me?

1)  It is really directive.  If someone is sick, don’t tell them what to do.  You are not a person with the authority to tell them what to do.  A far less irritating way to phrase this, rather than as a command, would be “have you tried X?” Even that is still problematic, though, because…

2) we probably have tried it, or at least looked into it.  If we haven’t, there is probably a good reason for it.  We don’t actually want to be sick.  There is nothing about endometriosis that makes it worth having, I promise you.  If it is something as basic as trying to eat healthy, sleep well, etc etc etc, we have definitely tried it, and it is very condescending to assume we aren’t already taking those basic steps.

3) It assumes that we are just half-arsing our treatment.  Every person I know with endo is seeking proper medical care for it.  I’ve gone through four gynaecologists because it is super important to me to ensure that I am getting the best medical care I can (weird, huh?).  Whatever we are doing, there’s a really good chance we are doing under proper medical advice and supervision, and that we are doing it thoroughly, because, as I said, we don’t actually want to be sick.

4) It is incredibly presumptive to assume that you hold the magic cure for endometriosis when literally legions of highly qualified doctors, surgeons and medical researchers do not.

5) It suggests that you know the disease better than we do.  Like most people with endo, I’ve spent the years since my diagnosis researching, learning, seeking treatment and reading every article about it I could get my hands on.  The fact that someone insists that they have a cure implies that they (in this case, an elderly man who is neither a gynaecologist or the possessor of a uterus, that I know of), know more about endo than I do after living with it for a decade and being diagnosed for two years.

6) It fails to notice the inherent barriers to such treatments.  Yes, I advocate eating well and living as healthily as possible.  That’s just good common sense that helps support the immune system and can (but doesn’t always) increase the body’s capacity to deal with flareups.  However, it is flipping hard.  If I can’t stand, I can’t buy healthy ingredients or prepare a meal.  If I can’t work, I can’t afford a varied diet.  If I am in horrible pain, I want – and need – quick, easy and convenient.  I certainly can’t exercise, I will probably suffer disrupted sleep, and I’m not going to put my tortured body through the rigours of a fast.

7) It crosses a line.  I told this man to stop.  I told him very clearly I wasn’t interested.  However, he not only PMed me, he also told his friend, on the main thread, to tell me to contact him.  He refused to take no for an answer.  It is incredibly disrespectful to do this, regardless of his motives.  My healthcare is my choice and when someone says “no thank you”, you need to leave them be.  There is already enough paternalism in medicine without it coming at us from randoms on the internet too.

There are ways to suggest alternative treatments to people, but generally speaking, unless you are either a doctor or actually have the disease, it’s not a good idea, because you are probably talking down to someone who a) hears this sort of thing all the time, and b) knows a lot more about it than you do.  If you absolutely cannot help yourself (please do, though), stop when you are asked to.  Respect our boundaries.  Respect that we know what we are saying when we say “no”.  Respect us.

 

Blue Knot: Vicarious Trauma

TW: suicide, mental health, violence, sexual assault

I know I promised I’d be back to endometriosis on Friday.  Apparently  I lied.  On Friday night I was feeling so well that I seized the moment and went to see my parents, and on Saturday my week of unhealthy living (i.e. drinking a litre of green tea on Friday to stay awake after an early morning and late night on Thursday) caught up with me and I was in too much pain to sit here and write.  And now today I’m not really talking about endo either.

Instead I want to write about vicarious trauma, which is fitting given what I wrote about RUOK DayRUOK Day encourages talking to people and listening to their issues.  Blue Knot instead provides services for those suffering trauma, or those experiencing vicarious trauma, which is where you are effected by experiencing something second-hand.  We had a training session by the Blue Knot foundation this week.

I’m a lawyer.  I hear traumatic stories all the time, including first-hand accounts from my clients about the serious violence they have faced.  Sometimes that includes viewing wounds, graphic images people have posted online, and reading some really sickening police and medical reports.  There are many professions that are equally high risk for various trauma, including medical, mental health, emergency services and support services.  Basically, anyone who hears or sees other people’s accounts of a traumatic event.  That can include when you follow the steps provided by RUOK to support someone having thoughts of suicide.

There is always the risk, when you agree to talk about issues someone is facing, that you will be taking on a seriously difficult topic that could leave its own scars on you.  It’s not something you should necessarily do unless you are in a sufficiently healthy headspace.  Even then, the effect it could have may surprise you.

Vicarious trauma is a sneaky beggar, too.  It can build slowly and you don’t even notice how badly you are being effected until you reach crisis point.  Alternatively, it can strike out of nowhere for apparently no reason at full power.  A few months ago, I was representing a woman to get an interim domestic violence order.  She told me her story, I drafted the application, and then about an hour later we were in front of the court and I was taking her through her evidence and giving submissions.  While I was making my submissions, this massive lump formed in my throat, tears flooded my eyes and I choked up.  I managed to stumble through my closing without (I think) being obvious upset, but my goodness, it was an intense feeling.  The strangest part?  I can’t even remember the woman’s story now.  I don’t think it was really different from anything I’d heard before and I cannot remember why that one in particular got to me.  It just did.  I was left feeling anxious and unsettled for the rest of the day.  I got the order, that much I do remember.

Anyway, that was vicarious trauma.  Something about her story triggered a very physical response in me.  And trauma is physical – it’s a reaction to stress that settles into the very tissue of your body.  But what can you do about it?

First, before you even notice symptoms, act protectively.  Dr John Arden recommends a technique called SEEDS – Social Connectivity, Exercise, Education, Diet and Sleep.  I’ll let you read more about what that means on that link, as he explains it in his own words, but the TL;DR is: be social, exercise regularly, keep your brain engaged, eat well and sleep well.

As usual, it is an unfortunately able-bodied technique that assumes people at risk of experiencing vicarious trauma are automatically capable of these things.  When I’m healthy and not in a flare-up I’m perfectly capable of taking each of the above precautions (except, apparently, when there are cakes to be made), but they are that much harder when you’re sick.  So for us, it becomes a case of “do what you can.” Unfortunately these factors don’t become any less important for us, so we have to find ways of doing them that work for us.  Maybe our social connection needs to happen by phone or in our house.  Our exercise might just be yoga or a couple of minutes on an exercise bike.  Education might be pausing our Netflix binge of unhappiness to do a Sudoku or logic puzzle, or switching to a documentary.  For diet, ensure that the meals buried in the freezer aren’t just chips and pies, or that your Deliveroo includes some vegetables.  If pain or medication is interfering with your sleep, talk to your doctor about counteracting that with sedatives, melatonin, or anti-insomnia techniques.  Practice good sleep hygiene as much as you can.  The more you do these things, the better able you will be to fight trauma when it comes, vicariously or otherwise (and the better you’ll be at dealing with flare-ups). However, if you aren’t achieving them, don’t beat yourself up – that’s really counter-productive.  Practise some self-compassion.

Second, learn to identify it in yourself and others.  It may be represented by changes in behaviour that are totally innocuous or even appear beneficial, such as a renewed dedication to work that even borders on or later becomes workaholism.  It may be a previously loud person becoming withdrawn, or a quiet one becoming overly loud.  It might be an increase in substance use or an inability to sleep resulting in exhaustion.  If it is you that is at risk, check in with yourself.  Take the time to see how you are feeling and compare that to other days.  It’s a weird thing to do, but analyse yourself and don’t give yourself a pass.  By that I mean, if you notice that you are tense and agitated, don’t just say, “oh, that’s just because work is busy.” Instead say, “I think that’s just because work is busy at the moment, but I’ll keep checking in on it.” If work calms down and you don’t, it might be time to speak to someone.

Finally, if you realise it that there is a problem, talk to someone.  If you have a supportive boss, discuss with them if perhaps you can take a short break from the thing that traumatised you – for example, I might ask if I can do a week of general civil law instead of domestic violence and help people with debt, tenancy and employment instead.  However, you may not have the option for that, so you may need to speak to someone outside of work.  If your work has an Employee Assistance Programme, utilise it.  If you need a starting point, try calling the Blue Knot helpline on 1300 657 380.  Talk to your GP about a mental health plan.  If you are a student, access the resources at your school or university.

I just want to finish by saying that the training provided was excellent.  The trainer was a psychologist and he was clear incredibly passionate about what he does.  If it is something that could benefit your workplace, I really recommend it.

Are you in an at risk job?  Have you ever noticed vicarious trauma symptoms in yourself?  How did you deal with it?  Let me know in the comments.

RUOK Day and the Cake of Doom

TW: Suicide, mental health

Yesterday I explained that I am engaged in a battle to the death over who at my workplace can make the best cake.  I will tell you the results of that epic showdown, but first I want to talk a bit about RUOK Day.

Did you know that 8 Australians take their own lives every single day?  Even higher numbers than that make attempts.  Rates of suicide are higher amongst men.

This is particularly relevant to people suffering from endometriosis, and chronic illness in general.  Why?  Because there are three main factors that make it more likely that someone will commit suicide: social isolation, feeling like a burden, and the means to follow through.  I’ve talked before about how easy it can be to become socially isolated when struggling through a flare-up, and that feeling like a burden is one of the many mental side-effects of physical pain.  With the amount of strong painkillers many of us have access to, means to follow through completes the endometriosis-suicide trifecta.  We are an at-risk group and today really brought that home to me.

RUOK Day focuses less on people at risk of suicide, though, and more on the rest of society and what ordinary Australians can do to help their friends, colleagues or loved ones through the power of asking a simple question, “Are you ok?”  It teaches listening without judgement, helping the person struggling to seek appropriate help, and continuing to check in with them (in my view the most important step of all).  It’s never going to be an easy conversation to have – it may be embarrassing and overly intimate for both parties, but they are right when they say it can save lives.  I encourage everyone to head over to their website, watch some of the informative videos they have on how their system works, and put it into practice.  Use this day as a chance to check in with friends and family.  That simple act of connection may pull someone back from the brink.  It may pull you back.  I’ve written before about the importance of maintaining social connection even when you feel like you can’t.  Take a step to do that right now.  Ask yourself, “Are you ok?”  If you aren’t, speak to someone.

On a lighter note, my workplace wisely decreed that the path to mental health is built on cake.  Ironically, I had to fight my way through crippling knee pain (my knees were swollen and aching from referred back pain) to make my cake, I literally lost sleep over it, I would have skipped dinner if not for my husband, and I shed real tears.  Not my proudest mental health moment.  However, the cake was a success!

I was attempting to recreate Anthea of Rainbow Nourishment’s glorious Golden Gaytime cake.  For those outside Australia going “um…what?” the Golden Gaytime is a popular and delicious ice-cream that is sadly not vegan.  I based my recipe partially on Anthea’s ice-cream bites of the same flavour, and improvised a whole lot.  I topped it with a bunch of things from her beautiful e-book, “Nourishing Treats”, including date-tahini-caramel swirls, hazelnut chocolate dough, and vegan Ferrero Rochers.  I also made some banana popsicles but the cake was so full of treats that it didn’t need it (and they also were just really unfortunately and inappropriately shaped).  On the plus side, they are safely in my freezer where I can eat them all.

Although it lacks the professional finish of Anthea’s cake, I was pretty proud of how it came out.

My cake 1.JPG
We had a crunchy chocolately base, a caramel ice-cream layer, a chocolate ice-cream layer, a vanilla ice-cream layer, chocolate drizzle, tahini-date caramel at the edge, chocolate hazelnut swirls, Ferrero Rocher bits, shards of chocolate, cacao nibs and cookie crumbs – all made from scratch!

I was up against some very stiff competition, though.  There were six cakes in all.

Banana and raspberry.JPG
I was tempted to try and steal that nice little chopping board.

Offering number one was this banana raspberry creation, vaguely reminiscent of an aeroplane.  This cute little number was a runner-up (ranked in the bottom three) and won a box of cake mix.

White chocolate and macademia.JPG
Does anyone else always try and spell macadamia as “macademia”, like some bizarre cross between nuts and university research?

Offering number two was this plate of delicious-looking white chocolate and macadamia cookies, which deserve special mention as the baker was sick with a sinus infection and still loved his colleagues and the promotion of healthy minds enough to bring in biscuits for us.  Despite his efforts, these biscuits also landed as a runner-up and also won some cake mix.

Hamburger.JPG
Doesn’t the “cheese” look disturbingly realistic?

Offering number three I found unbelievably odd.  This cake actually looked very much like a cheeseburger.  Now, don’t get me wrong, I love a good (vegan) cheeseburger, but there is something about seeing one in cake form that just does my head in.  However, it is very clever and landed a neat third place.

Chocolate and raspberry.JPG
Beautifully presented and it smelled AMAZING.

Offering number four was this decadent gluten-free chocolate-raspberry cake, which was apparently full of whiskey.  This was the one I was most sad about not being able to eat because it looked so good (mine was the only vegan cake so I couldn’t taste-test any of the others).  To my surprise this cake also only made it into the runner-up position – I think maybe not enough people tried it as it was on the smaller side.

Maltesers.JPG
The inside sponge was vegan so I did manage to nab a taste of that and it was admittedly delicious.  Why must I be surrounded by such talented women?

Finally, my main competition, made by my work bestie and towering over its competitors: the gravity-defying Malteser cake.  It is with a heavy heart that I admit that this cake beat mine to take out the main prize of a silicon muffin tray and loaf tin, and I walked away with second (a very nice glass tray).  Admittedly it was an excellent cake and the win was not undeserved.

Layers.JPG
A better look at the layers in my creation.

All in all, I was very happy to come second.  I had some stiff competition and although mine looked incredibly decadent, it wasn’t particularly sweet.  Barring the chocolate, it had no refined sugar and relied on date and a small amount of maple syrup in the Ferrero Rochers for sweetness.  However, I think the lack of sweetness may have worked in my favourite – it was cold and relatively refreshing and I think would have stood out because of that.  It also managed to be quite rich, thanks to being 90% coconut cream, and had all sorts of textures thanks to the crunchy base, nutty crumble, stiff chocolate and smooth creamy layers.

So, what’s the take-away from today?  Eat cake, but don’t hurt yourself to make it.  Perhaps more importantly, look after your mental health, and look out for your friends.

Talking to Children About Their Endometriosis

According to modern medical wisdom, there’s a whole bunch of reasons why someone will get endometriosis.  Unfortunately, one of the factors seems to be genetics.  It can be inherited through either the paternal or maternal line, so don’t be too quick to blame your mother just because she’s got the requisite equipment, so to speak.

Anyway, if you’ve got it, there’s a good chance that any children or grandchildren of yours with the corresponding reproductive organs could develop it too.  Alternatively, you may be someone without the disease but have found out that your child has it.  Either way, your chat with them is going to have to be a little more comprehensive that the usual “talk”.

Now, I’m going to assume that this particular chat isn’t going to need to happen until your child starts to get their period, so this is mostly going to be aimed at 12-15 year-olds.  I know some children do get their periods younger than that, but even in those cases, it generally takes a few years for the symptoms to become obvious enough to start seeing a doctor about.  I think I got my period around 11 or 12, but I didn’t really become conscious of severe pain until several years later, at 14 or 15.  My experience isn’t universal, but it seems to be the age most young people become aware of it, so that’s the age that this post will be pitched at.

First and foremost, I think it is vital that young people understand how their own body works.  I also think they should get the anatomical breakdown of the bits they don’t have, because understanding the human body is useful and important.  Regardless, knowing their own internal workings will help them understand exactly what the disease is and how it is effecting them, save a lot of time in the doctor’s office, and make explanations from any treating specialists a lot more comprehensive.  Make sure your teenager knows the meaning of uterus, ovaries and Fallopian tubes and how they work together.  Make sure they understand the menstrual cycle, and not just the period.  Explain ovulation and how our hormone levels can fluctuate based on what stage of the cycle we are at.  Explain how the different stages of the cycle effect the body.  Most importantly, establish what is normal and what should be concerning.

Second, listen to them and believe their pain.  I’ve talked before about how we often aren’t believed.  Don’t be another person in a child’s life who assumes that they are exaggerating, hysterical or don’t know their own bodies.

Enquire.  If they say something is wrong, do a preliminary check.  If their periods are alarmingly heavy, ask about the frequency, whether they are having cramps, or if they are having bowel symptoms.  Encourage them to be open and honest with you or another adult they trust.

Get them medical attention, and fight for them if the doctors aren’t interested.  Young people tend to believe it when someone in authority tells them that they are wrong, and  I can say from bitter experience that it is pretty crushing and starts the cycle of having no confidence in your own assessment of your pain levels.  Talk them through their rights in the medical system and what to expect when visiting a specialist.

Give them autonomy over their own bodies.  The older they get, the more maturity they will be able to exercise in relation to their medical decisions.  Letting them have their opinions heard about particular options is important in helping them feel empowered.  I think it’s super risky to be forcing a teen into a particular course of treatment, particularly with a disease like this where everyone reacts so differently.  Give them the benefit of your experience and opinion, but my view would be that, if they are not happy with a proposed course, forcing them into it isn’t likely to be of much benefit, especially if they are an older teen.

Likewise, make sure they have a good relationship with their doctor.  I’ve changed had four specialists.  It’s important to find the one that is a good fit with you, particularly given that they are going to get up close and personal with your up-close-and-personals.  If they don’t have any confidence in their specialist, find them one that they can trust.  Ask what they want from a gynaecologist – they may want a particular age or gender, or to try someone recommended to them by someone else.

Encourage them to ask questions and do research.  Make sure that they have all possible information about their disease and whatever options they are pursuing, whether medical or surgical.  Link them up with a support group, particularly if you can find one of other young people.  Give them a place to share their experiences and chat with people their own age.  They might have questions that they don’t feel comfortable asking a parent or an adult doctor.

Be patient and understanding.  Of course you should encourage them to try their best and push through when they can.  It completely sucks, but it is the most unfortunate reality of endometriosis that we have to do stuff that it hurts to do.  However, if they say that they cannot do something because it is simply beyond their physical ability, don’t push them.  That does nothing but make us worse.  Let them rest and recover when they can.  I vividly remember being shamed out of sick bay during high school by unsympathetic nurses.  Don’t be that person.  We don’t like that person.

Facilitate them having as much of a normal life as possible.  Help them get to events with their friends and do extra-curricular stuff.  They might not be able to cope with the physical stresses of sporting classes, but perhaps they could do a painting or drama class.  If they can’t compete in the school athletics carnival, get them decked out in house colours so they can show their support.

Unfortunately, you may need to be a bit of a disciplinarian.  Teenagers make stupid decisions (actually, do we ever grow out of that?).  Even more than normal teens, young people with endometriosis need to safeguard their health.  That means a healthy diet, plenty of sleep, the right supplements, fresh air and sunshine, gentle exercise etc.  Many teenagers have the tendency to stay up super late and then sleep in for hours, things they can’t do during the school week and which messes with their circadian rhythms and whatnot.  I’m not saying they can never have a late night, but getting them to have a solid routine is really important because they have to go to school and school is full of germs which they are more likely than your average person to catch.  Likewise, if they would like to live off chips and pizza (wouldn’t we all) rather than a balanced diet, you may need to put a foot down.  Get them involved in making healthy meals that they will like, if you can.  My sister and I love making our own pizzas (although hers are mostly meat and cheese, so not a totally balanced diet there).

Ultimately, there’s no road map to parenting, and dealing with a child with a chronic illness will be even harder than raising a child in the pink of health.  How do you help your child with endo?  Any tips not included here?  Any difficult experiences you can share to help other parents avoid those situations?  Please let me know in the comments!

10 Ways to Help

People with endometriosis often need help. We don’t necessarily like it, but it is all too often a fact.  Pain leaves us unable to complete basic tasks such as grocery shopping, going to work, driving, or even standing up.  If you have a friend or loved one suffering from endo, chances are you want to know how you can help them.  So, without wanting to put too much pressure on you, what can you do?  Well, here’s a few ideas:-

  1. If you are doing your groceries, message them and see if they need anything. My bestie does this for me all the time, and while I’ve yet to take her up on it, my heart glows when she asks because it’s really kind of her.
  2. Consider other errands they may need help with. For example, do they have any parcels at the Post Office waiting for collection? Do they need to return library books or rented movies, or post letters of their own? If you are heading in that direction, check if there is anything you can do.
  3. When you are at their house, ask if there are any household tasks you can help out with, such as the washing up or stacking the dishwasher. Again, this is something I tend to turn down (except when my mum offers, because she’s my mum and it’s different when it’s your mum) but one day I may be in so much pain that I’ll take someone up on it. You don’t need to offer to chuck their dirty undies on for a wash or anything, but watering the plants, reheating their wheatbag or letting the dog out might be something that could help.
  4. Keep them company. As I’ve written about before, endo is super isolating because getting out can be really hard. Kicking back at their place and watching a movie or eating yummy food with a pyjama/yoga pant dress code means the world.
  5. Walk the dog, if they have one. My mum and my sister-in-law have both done this for me on days when my husband can’t, for whatever reason. It takes a massive load off me and frees up my husband in the evening to care for me instead of being out and about. Plus, dogs are great.
  6. Pick some low-key, cheap activities. I’m not saying you can never go clubbing again for fear of offending your endo-friend, but every now and again a movie night, board games night or relaxing spa day could be the perfect change of pace for you and a great way to include them. It also helps them where activities have minimal cost as endo is incredibly expensive and tends to impact earning ability as well.
  7. Be spontaneous where you can. One of my biggest problems is I can’t commit to things in advance because I just don’t know that I’ll be well enough. If your endo friend calls you and asks you out and you can do it, do it. They are having a rare good day and taking advantage of it should provide fun for all.
  8. Offer lifts. Not everyone with endo has trouble with driving, but some us do due to referred pain in our legs or backs. Some days, having someone else available to drive me can make the difference on whether I can leave the house or not. If you’re both going the same way, see if they want to carpool.
  9. Keep asking them. Your endo friend may be flaky by necessity but it doesn’t mean that they don’t appreciate being asked out. There may well be days when they are absolutely capable of coming and are thrilled to have the chance. Just because they’ve flaked 9 times out of 10, please don’t give up on them.
  10. Support them emotionally. This is such a debilitating disease. I cannot adequately explain how exhausting, depressing and just utterly draining it is, or how painful the rollercoaster between hope and despair can be. Sometimes we really just need a shoulder to cry on or someone to rant at. Hug us. Thrust tissue boxes in our direction. Pat us awkwardly on the shoulder.

And, for bonus points, look after yourself. If you are dealing with way too much of your own stuff, don’t feel like you have to listen to ours.  If you can’t be there for us, let us know – trust me, we will get it – and always feel free to ask for support in return.  We would love the opportunity to help someone back, and chances are, we owe you!  Plus, even if none of that is true, it’s all part and parcel of being friends.  🙂

10 Things Not to Say to Someone with Endometriosis

TW: Pregnancy, fertility

I know for sure that I am not the only person with endo who has ever pulled that face in the picture above.  It’s the face that combines confusion and amazement that someone totally unqualified is genuinely trying to explain your own disease to you with stunning confidence with an attempt at patience and restrain, and curiosity about how much gaol time you’d really have to serve if you stabbed them with a pencil.  For me, it’s mostly happened online so the pencil part is hypothetical, but I have had it happen in real life.  People tell you with absolute sincerity that in having not magically experienced a cure for endometriosis you are doing something wrong.  It’s baffling.  So today I want to make a handy little guide for people who do feel the need to ‘splain people’s endo to them about what not to say.  Since I’m a helpful sort, I’ll follow it up tomorrow with some handy hints on what you should say.

Today, though, please, if any of the below is about to come out of your mouth, consider zipping it.

1) It’s just period pain/all women get it/toughen up

There’s a lot of variations on this particular theme, but basically they all boil down to “I don’t believe you about the pain you’re in.”  That is the least helpful thing ever.  Yes, many women get period pain and are able to carry on with their normal lives in spite of it.  Endometriosis pain is simply not the same and it is absolutely debilitating.  Believe us.

This one has a close friend that also annoys me…

2) Yeah, I have period pain too

NOT. THE. SAME. THING.  I get that many people have period pain.  I used to get it in a much more traditional sense than I do now.  It’s not great.  It’s also barely comparable.  I don’t mean to play down anyone else’s pain, but ordinary period cramps simply do not hurt as badly.  This may be intended as a comforting thing (misery allegedly loves company and all) but it doesn’t comfort – it makes light of what we are going through.  It’s like saying to someone with a broken leg, “yeah, I stubbed my toe the other day so I totally get it.”

It CAN be appropriate to say this if you are asking a question, like, “I get really bad periods too and sometimes I wonder if something is wrong.  How did you know it was something worse than just a normal period?”

3) My friend/cousin/sister/ex/etc tried this and it really helped her

This one is fine to say if it is a casual conversations discussing different experiences.  However, if you are saying this in a way that says:

  • I don’t believe it hasn’t helped you
  • You must be doing it wrong
  • You absolutely have to try it

then please don’t.  All people have different experiences with endo and with treatments.  I know many people have benefited enormously from Visanne; it did nothing for me.  I’ve had pretty good experiences with Implanon, whereas others have bled continuously and had horrible cramping.  There is usually a good reason we haven’t tried it or haven’t continued it.

Another good one not to say is this one’s cousin…

4) Have you tried yoga/raw vegetables/just exercising more/cannabis?

Yoga, a healthy diet and exercise are all important parts of staying healthy generally, and can assist in reducing the severity of symptoms.  However, they do not reduce pain for everyone, and they are 100% not a cure.  There are also times where pain, financial constraints and just normal life things make it impossible to do as much as we should in any of those areas.

Also, please don’t suggest things that are not legal.  That’s a good way to get people in trouble.  Cannabis may well help with pain relief, but it’s not legal in many parts of the world and it can have serious side effects, so that’s one that people should be talking about with their doctor, not people who just like weed.

5) You don’t look sick

Thanks.  You don’t look annoying, yet here we are.  I mean, this isn’t a disease that usually results in facial pustules (although I did have those on Visanne!), so it’s hard to know how you want us to look before we appear believably unwell.  There are many days when I dress myself like an adult, walk around upright and attend work or even have something of a social life.  These days I am either not in pain, or hiding it because that is a skill everyone with endo learns.  My clients would not appreciate it if I started grimacing and clutching my pelvis when I’m supposed to be representing them in court.  You learn to act normally.

6) You think that hurts? Wait til you give birth

I have it on good authority from women who have endo and have been through labour that both are extremely painful.  Different women say different things about which is worse, but enough of them say that their endo pains are worse to warrant us listening to them.  Additionally, childbirth usually results in a positive thing.  You have a good reason to push through them.  There is no point or purpose to our endo pains, so it’s hardly comparable.

Further, this sort of thing can be really upsetting to women who desperately want to have a child and can’t.  They would give anything to experience that labour pain because it would mean that they are fulfilling a dream.   On the flipside, it also assumes that every woman is going to give birth.  We don’t all want children.  Stop it.

On that note…

7) Try having a baby

This is one that too many doctors still peddle despite bucketloads of anecdotal evidence that having a baby is not a cure.  It’s something even my own surgeon has suggested on multiple occasions, and when pressed he straight-up admitted that endo can come back as bad or worse as soon as your post-natal hormones go back to normal.  He gave some spiel about how women way back when would just be constantly pregnant so they’d never suffer from endometriosis pain, like that is healthy, sustainable or socially acceptable today.

It also suggests that it is totally ok to bring a child into this world simply to cure a condition.  Assuming a child is even what the patient in question wants, is that really the right reason to create new life that you will be responsible for for the next 18 years at least?  What if their pain returns worse – how are they going to care for the child?  Will they resent the child for not fulfilling the promise their doctor made?  It all seems a little morally shaky to me.  By all means, women who want children should have them, but trying to peddle children as a cure?  Nope.

8) At least it isn’t cancer

Yes, I too am glad that I do not have cancer.  I know people with cancer and it is very clearly a horrific disease that too often kills people.  That doesn’t mean endo doesn’t suck, and it just makes me feel guilty for feeling pain.  Not a helpful comment.

9) Can you still have sex/do you look normal down there?

That’s a question for the doctors or very close friends, not for the curious and nosy stranger.  Likewise, asking “can you still have children?” or other deeply person stuff about your reproductive system is not on the table for discussion unless the person with endo initiates it.

10) Aren’t you better now?  

No.  I may never be.  Yes, I’ve had surgery and tried ten gajillion different drugs.  No, I’m not cured.  I know that’s very inconvenient for you – it is for me too.  Please be patient with me.  Goodness knows I have to be.

 

What comments have you heard that drive you up the wall?  How do you deal with questions and statements like these?  Let me know in the comments!

A Day of Gratitude

It’s the first day of spring!  My mood has been slowly creeping towards the positive with the fresh smell in the air and the gradual increase in temperature, and now spring is finally here!  I’m celebrating it by making resolutions I probably won’t keep, but also by following on from last month and starting September in a positive way, with a gratitude post!  I want to kick this month off with a list of ten things that I am grateful for.  I challenge you to do the same thing, whether in your diary, here in the comments or on your own blog or facebook page.

Without any further ado, today I am grateful for:

1) Spring!

Yes, I know I kind of said this already, but I love spring.  It fills me with hope and a yearning to be outdoors.  In my mind it’s all flowers and lazy bees and warm days that aren’t too hot yet.

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Look at these happy little bees buzzing around in my rosemary.  

2) Work

I may not get there every day and it can be stressful as all heck, but I adore my colleagues and the work I do can be really fulfilling.  It can also be silly and trivial and you wonder why some people think that they need a lawyer to sort it out, but the feeling when a terrified women walks out of court with a piece of legal protection she didn’t have before, or a confused man who had no understanding of what he could do suddenly has a clear pathway to follow, and you gave it to them?  That’s pretty good.  It’s those moments that really make it for me, when people are staring at this confusing, tangled legal pathway and you can just go, “Here’s what you do,” and they suddenly have a clear path to follow.

3) Dr Edi-Osagi

I mentioned last week that I had an appointment with the good doctor via Skype.  More recently I received his reporting letter about the appointment, and I nearly cried.  He included every detail I told him about my pain, laid out a clear treatment plan, and noted that my quality of life is low.  I’ve never had a doctor do that for me before in such detail, or draw such a conclusion.  I didn’t even tell him I thought I had a low quality of life; he examined what I told him and drew that conclusion for himself.  It was the most validating experience and I have never felt so listened to or supported by a medical professional before, even if it turns out down the track that he won’t be able to assist me.

4) My animals

They are such a constant source of joy for me.  Every morning when Pearl comes out of her bedroom (the laundry) she does a little butt-wiggling stretch and then shoves her head into my chest for a cuddle.  When we get home from work, she dances around us with her silly little corgi paws all over the place, doing that thing dogs do where they really want cuddles but are too excited to stand still for them.

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Basking in the sunshine. 10/10 good dog.

Every day Max jumps up on the sofa to sit with me or on me and looks at me with that perfect ginger face, and purrs like a little steam train.  Each morning when I get up he throws himself dramatically down at my feet and rolls around on his back for tummy scratches.  He’s impossibly cute and I love him.

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As a lawyer, can confirm: it would be illegal not to kiss that little face.

5) My mum

Pretty much as soon as she got back from her overseas trip she was right back into the swing of supporting and helping me in every way she could.  From walking me and the dog to bringing me my microwave (which had been living with her) and just straight up emotional support, she is pretty much the bestest.

6) My husband

He works so hard and still finds the emotional energy to support and help me and the physical energy to walk the dog, do the bulk of the housework and keep fit and healthy.  He’s superman.  I don’t know how he does it.  He also makes the most amazing meals.

7) Small luxuries

This morning I had fresh berries on my cereal.  Tomorrow night I’m going to have a long relaxing bath with a face mask.  Yesterday I burnt my coconut Dusk candle and basked in its tropical smell as I made a really cool calendar page for September in my bullet journal.  This morning my dress has this little bit of tulle just at the base of the skirt and it feels so fancy.

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My fancy dress (Review’s Alouette Dress) as modelled on the Iconic by this stunning lady

8) Snails having baths

Just google it.  It’s adorable.  It made my heart sing this morning.

9) The Llandor Trilogy

My sister and I read this series of books about fifteen years ago, but over time we forgot what they were called.  We couldn’t even really remember the plot, just random elements; a boy and a girl get sucked into a fantasy world.  The girl wants to be a hairdresser.  The boy wants to work in IT.  They had adventures including a banshee in an underground cave, rock giants, and a black mage that the girl accidentally killed by shoving him off a cliff, except maybe he didn’t die because he could turn into some sort of bird of prey (but we couldn’t remember what).  We tried every google combination we could think of over many years, asked facebook friends, tried Yahoo Answers, and eventually, exactly one year ago today, we finally hit on the right google combination and discovered that the books were the Llandor Trilogy (and that there were actually three children, not two).  It was quite possibly the single most cathartic experience of my entire life.

I’m going to celebrate by reading the series again, starting today.

10) This blog and you, my lovely readers

I never actually thought anyone would read this blog.  I thought I’d write for a while with maybe 2 followers, then get bored and stop.  Instead, 2 months after starting it I have 41 followers.  It may not be many in the grand scheme of internet pages, but I am incredibly grateful for each and every one of you and you are the reason I will continue writing.  It tells me that there are people who are interested in endometriosis and that it is worth writing about.  So thank you, my wonderful people.  I hereby commit to a giveaway of some sort when we reach 100.  I’m working on ideas (but feel free to drop some more in the comments).

 

So what are you grateful for today?  What little things have made your heart sing?  Are you excited for September?

 

Bullet Journalling for Endometriosis

Yesterday I gave a brief, if somewhat slapdash, introduction into bullet journalling.  That was really just groundwork for this post, because I really believe that bullet journalling can be incredibly useful to people with endometriosis.  It can perform the function of a normal journal in helping us keep on top of all our various appointments.  However, thanks to the fact that a bullet journal is totally customisable and the addition of the ever popular tracking spreads, you can also keep on top of every other aspect for it.

I’ve considered starting a totally separate journal for endo.  This would include a brief chronology of important dates, such as surgeries, when I started on new medications, appointments with different specialists etc.  Then I’d have pages with information about the meds I’m on, the side effects etc, and dates relevant to that med (such as dates I noted particular side effects and their severity).  After that I’d have trackers dedicated to different symptoms; gastric pain, uterine pain, backache, gastritis, misc., and line them up with particular triggers, if any.  I’d also keep a mood/mental health page.  Finally I think I’d have a journal section where I could write anything I wanted – reviews of doctors, rants about pain, a diary of my hopes and fears, and little pictures and quotes that feel relevant.

Damn, now I really want to do that.  I’m going to need another Leuchtturm.

Right now, however, I just have two trackers.  Trackers are super useful because not only do they record information your treating team may need later, they also help you identify patterns.  I started with one but kind of abandoned that partway through February because it turns out I am not very good at checking in with things at the beginning of my diary, only in the section I’m actually in.

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As you can see, this tracker covered the whole year (optimistic) and relies on colour codes.  Each day has a rectangle made of two squares  On one half I record my symptoms (if any), and on the other my triggers (if any).  It was a good idea but I’ve found it has some draw backs.  It doesn’t record the severity of the pain, it’s a little smaller than I’d like, and I didn’t choose my colours particularly well, so it can be hard to tell what’s what.

This month I’ve been using a pain level tracker each week instead.

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The red line is the maximum pain I experience that day, and the black line is how I felt the pain was in general (not including the moments of extreme pain unless that is a significant portion of the day).  Whilst this does a great job of recording my pain levels, of course, it lacks what my other tracker had in terms of symptoms, triggers etc.  This one can’t specify between the different types of pain, either, so I need to note that down in my daily log.

This month I’ve also started keeping two separate habit trackers.  One is for habits that are just good personal development, such as practising my German and wearing perfume so my massive collection doesn’t just moulder ignored in a drawer somewhere.  It also tracks which days I’m too sick to go to work.

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The other is for habits that are vital to my self care – brushing my teeth twice a day, washing my face, brushing my hair, getting sunshine – all the little things that shouldn’t present a challenge but are usually the first things to go when I start to struggle.  This has definitely been super useful and I’m going to keep it up for the rest of the year.

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I don’t currently have a period tracker, but I don’t have periods, so there isn’t much point.  However, many people do, and you can get really fun with them

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Fantastic “Shark Week” tracker by Mieke Bjins.  How gorgeous is the little shark?

So far this tracker only tracks flow rate, but you could also mark pill usage, ovulation, the beginning of pain etc by using other symbols or colours.

Other people like to track their moods in detail.  That can be important as it shows whether a pattern of negative moods is developing in your life, which may suggest that it is time to seek professional assistance with it.  However, I know that some people say they don’t find mood trackers helpful as it leads them to obsess over their state of mind and make it worse.

I’ve never tried a mood tracker, but I like the idea of something like this:

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To read the full text, visit Shaylara Shen’s site where she shows her daily spreads.

In this spread Sheylara takes the space and time to chronicle her negative thoughts and her struggle, but also her wins for the day.  I think this a great holistic way of approaching it.

Do you use your journal to track your endometriosis or other chronic health conditions?  How about mental heath?  Or do you prefer simply to journal about it?  Whatever you do, please drop a picture or instagram link in the comments!

Staying Strong

So far in this mini-series I’ve talked about staying grateful and staying generous when we are faced with challenges that make it very hard to do that.  Today I want to talk about how we stay strong.

I think this is probably the hardest thing of all.  I can generally find something I’m grateful for even in the midst of despair – usually especially in the midst of despair – such as love, or morphine.  I don’t find it hard to give my time and energy to people because I literally do it for a living.  However, I do find it hard to pull myself out of depressive slumps and keep going.  We don’t get to use little mantras like “this too shall pass”, because it probably won’t.  We might not be able to exercise to get those endorphins pumping.  So what can we do?  More specifically, given that I’m neither a motivational speaker or a counsellor, what works for me and might work for you?

1) Accepting the situation

And right away we’ve got the hardest thing on the list.  Accepting what the situation is rally hard for me, because it requires me to walk a weird line between hoping that things will get better but also not dwelling on the fact that they aren’t, whilst being clear with myself that they might not, but not despairing about that.  It’s like being in a washing machine sometimes.  It doesn’t mean fatalism or pessimism; it just means dealing with the hand we are dealt right now and learning to live with it.  That being said, I still advocate…

2) Working to change it

Accepting the situation doesn’t mean you shouldn’t still be working on getting better.  Keep checking with your specialist (or multiple specialists) about alternatives, clinical trials, advances, anything that will progress your ability to manage endometriosis.

3) Having a purpose

Setting goals is one thing that makes me keep going.  I will not give in because I haven’t done X, Y or Z yet.  Sometimes they are long-term things, like making it through a year of work and going up a pay grade, or growing this blog to 100 followers with a giveaway to celebrate (let me know in the comments in that is something you’d like).  Sometimes it is smaller things, like to give this new medication a go, or to make it to the next long weekend and reassess.  As long as I have a reason to keep pushing through, it makes it a little easier.  Right now I’ve got my eyes on two weeks hence, when I’ll meet with Dr Edi-Osagie again to see if the Zoladex is working and determine whether surgery is the next step.  Having something in the future that I am focused on makes it easier to push through the present, which is mostly a weird stabbing pain in my…bladder?  Uterus?  Can’t really tell.

4) Staying as positive as possible

As I said in my last two posts, being happy makes it easier to deal with the bad stuff.  Training your brain into a more positive mindset isn’t a foolproof, 100% guarantee that you’ll always be happy, but it helps.

5) Treating myself well

Whether it is looking after myself physically by taking my medication and vitamins, keeping myself mentally healthy by being kind and forgiving to myself, or just plain spoiling myself on occasion, I find it much easier to make it through a week when I’m doing those things than when I’m not.  My journey’s hard enough; no point making it harder.

6) Keeping occupied

When you are stuck at home just doing one thing all the time it becomes really easy not to do anything at all.  I try to switch it up as often as possible.  Rather than watch several episodes of a show back-to-back I’ll go outside for 10 minutes after one, or get on the floor to hug my dog, or go and write something on my blog.  Mind games like Sudoku or logic puzzles are good to keep the old brain-motor running as it should.  Having an app to switch to for a little while, or a book, or doing some journalling or doodling is great.  The more you do the harder it is to sink into a depressive state (and the more you sink into a depressive state, the harder you will find it to switch up activities).  If I binge-watch a series, no matter how excellent, I won’t stop, and I’ll hate myself for it, and that will make me feel useless, and then I’ll be useless.  Breaking it up with other activities makes me feel more productive and active.

7) Asking for help

I’ve already talked about how I couldn’t have made it through the past few years without a support network.  Sometimes, I’m not feeling so strong.  Either I have no hope for the future, or feel like I can’t bear up under the pain any more, or simply need help taking the load off for a bit so I can get into a healthier mindset without the stress of undone tasks.  Asking friends and family to pitch in with some emotional support or practical help lets me do that.

8) Letting my worries out

Whether by writing them down, talking them over or praying them away, analysing my fears lets me take control over them and prevent them from controlling me.  If I know what my fear is I can step on it by asking, “So what?”  That’s kind of how this blog started.  I was telling myself, “I’m going to get fired because of my health.  I’ll lose my entire career and never be a lawyer ever again.”  Then I said to myself, “So what if that happens?  What will I do?”  “Ella,” I said, “I’ll start a blog.  That way I’ll have something to keep me busy and maybe one day I can even use it as a business.”  (There was a bit more emotional drama in between those sentences, but you get the gist).

Of course, this doesn’t always work.  Sometimes there is no solution to the worry so I’ll focus instead on letting it go, only to find it comes buzzing back in like that annoying little fly you’re sure you saw fly out of the window a minute ago.  Trying is important, though.

9) Staying hopeful (but not too hopeful)

If you pin all your hopes on a particularly solution, you will be crushingly devastated when it fails.  However, a bit of cautious optimism lets you aim for the faint light at the end of the tunnel, and means you aren’t absolutely broken when you find out it was a vital part of the tunnel infrastructure catching fire instead.  A little bit of hope makes it easier to get through the bad stuff because there is the possibility it might get better.

10) Preparing

Even if I don’t go out, I make sure to do certain things as if I will.  Every day I wash my face, brush my hair and clean my teeth.  It’s not much and it is something most people take for granted, I suspect.  However, those three little things make me feel more human, give me a small sense of purpose and achievement, and ensure that I don’t look and smell in the event that someone knocks on the door.  Even if I’m in my pjs, it gives me a small sense of self-possession I would otherwise lack, and it’s that small sense that helps me feel like I’m more competent, more confident, and therefore stronger.

 

What do you do to get through the really tough bits?  Any mantras or quotes that help you?  Let me know in the comments.