Working with Endo: What to Wear

CW: maternity, weight gain, gendered language

I’ve written before about the difficulties of holding down a job whilst living with endo. Re-reading that post is an interesting experience. I was still in litigation, and specifically said that my health might force a move into policy – an area that, at the time, I had no interest in. Well, that prediction sadly came true, in part. My health did force me to leave litigation, but it turns out policy is actually pretty fun.

I’ve also written before about clothes that are comfy yet not terrible for when you have endo. I want to revisit that topic today, but with a work focus. I’m concentrating on offices here, partly because that is what I know and partly because many non-office careers either come with uniforms, dress codes or special requirements (steel-toe boots, for example).

If you want to look at some more adventurous office ideas, I highly recommend Miss Louie’s various lookbooks (see here and here ). She has so many great ideas on professional yet interesting outfits. If you need to travel for work, head over to this post by Vintage Barbie. I’d also recommend her post on maintaining your own style in a corporate world.

So, without further ado, here are my five office staples for the office worker with endo belly:

1) The well-fitted knickers

Ok, so this applies to literally any outfit, officey or otherwise, but it is so important. Whether you have endo or not, you generally want to avoid the dreaded Visible Panty Line (not terribly professional). It’s not always easy in a world that seems to sell an inordinate amount of cheeky-cut undies that have their leg at that annoying mid-point that just cuts your buttock right in half. If you have been even slightly blessed in the booty, this tends to cause a slight dimple and becomes very obvious under even moderately tight clothing. I also find that they cause me to be making adjustments all day. If you really love a halfway-up-the-butt cut, go for seamless ones that just lie on the buttock rather than gripping and digging in. Cuts that simply won’t cause those lines are G-string, or my personal fave, the granny pants, that cover the entire buttock. In theory, boyleg undies shouldn’t do it either, but boyleg appears to mean different things to different brands and for many, still somehow results in a cheeky cut.  If someone has a recommendation for boyleg undies, with, you know, actual legs, please let me know in the comments.  I just want boxer briefs for people with nothing between the legs.  They look so comfy!

In terms of fitting for endo, you want something that is gentle on the tum. For some, this means a very low cut that lands below the tummy. For others (like me), this means a high cut with a gentle waistband. I highly recommend keeping at least one pair of maternity knickers on hand for the really bad days. I’ve started wearing some maternity things and seriously, the comfort level is out of this world.  Overall, my favourite brand has to be Bonds and their offshoot, Jockey, because they have a style for almost everyone.

Whatever style you choose, make sure you are getting the right size. Too big and you’ll be hoisting them up all day. Too small, and you’ll not only get VPL on both the legs and waistband, you’ll also be in a great deal of discomfort. Compression is the enemy of endo (another good reason to get fantastic knickers, as shapewear is not our friend). It is worth getting a few sizes if you often suffer endo-belly. A 12 is good for me most days, but on a flare day a 14 is just a bit more comfortable and accomodates that rapid expansion much better. Endo can also cause rapid weight changes – I’ve gained nearly two sizes in the past few months – so having bigger or smaller sizes on hand is an annoying necessity. If you gain weight, please don’t keep stuffing yourself into knickers that are too small. You’ll be horribly uncomfortable. It might be upsetting to have to accept that you have gained weight, but making yourself uncomfortable won’t help.

2) Elastic-waisted black trousers

Back trousers are a corporate essential. You can dress them down for casual Friday, but you can’t be caught short being insufficiently formal for a meeting or presentation. When I was in litigation I always had a pair of black trousers in my desk drawer just in case, after getting sent to court with very little warning wearing a skirt that was fine for a client-free day in the office but absolutely not ok for court.

I have multiple pairs of black trousers in a variety of styles – wide leg, boot cut, straight leg, high-waisted, etc – but the most important one in an endo-gal’s arsenal is a pair with an elastic waistband. They are so good on those days where a static waistband looks like Satan and you just want really just want comfort and a super easy outfit.  I recently purchased this pair from Target, which don’t look superb in the website picture but look perfectly acceptable on and are very comfy.  The only downside is that you can’t really tuck things into it, because the waistline does look a little cheap and, well, very obviously elasticised.  That being said, I want another pair.  One comment says that they are great for shorties, but they fit my 5’10” frame just fine as an ankle-grazing style.  For $15, they are well worth it.

3) A stretch black pencil skirt

A black pencil skirt is, just like the black trousers, an office necessity.  You can make it casual with a simple t-shirt and flats, or dressed up with a buttoned shirt or silky blouse.  A pencil skirt is the most formal style of skirt, much as I love my flared midi-skirts.  Thing is, of course, you don’t want just an elastic waist with such a clingy style – you want stretch EVERYWHERE.  You don’t want it to be tight or compressing, either – you want one that just skims everything and sits comfortably.  I recently got this one, also from Target, that fits the bill perfectly.  It looks very smart, and doesn’t dig in at all.  I wore it on a work trip to Melbourne that included flights, taxi rides, a seminar, walking all over the place, and Lord of the Fries.  It doesn’t look terribly cheap, and it doesn’t look immediately like its a stretch fabric as opposed to an ordinary suit skirt.  It’s a good length for me but would also be fine on a slightly shorter or taller person too.

4) Good tights

The holy grail of workwear for a skirt-wearing type.  They hide a multitude of issues – dry patches or those little bits I miss when shaving – and just add a level of polish and sophistication.  They also put a barrier between your foot and your shoe, which helps prolong the life of your shoes.  They are required in many more conservative law firms if you wear a skirt, particularly if you appear in court.

They are a nuisance, though.  Despite my extremely extensive wardrobe, I sometimes feel like I’ve spent more on tights than any other type of clothing.  Thick ones are too warm in summer, but sheer ones rip at the drop of a hat.  So many have built-in slimming, which is fun if you don’t have endo, I’m sure.  I find those very painful.

However, there are tights out there that are both comfortable and not prone to laddering.  I always look for tights that, when damaged, get holes rather than ladders.  A hole just sits there.  It doesn’t look great, but, unlike a ladder, it won’t start at your thigh and have ruined your entire leg by lunch time.

I also look for those with words like “comfort brief”, “wide waist-band” or “no dig”.  If those fail me, maternity tights are always an option.  I got a bunch of these Kayser tights on sale a few weeks ago, and they are saving my life (or at least my tum) at the moment.  Very comfy, and they hole rather than ladder.

5) A slouchy blazer

I love a structured blazer.  I feel amazing in a properly fitted suit jacket.  Sometimes, though, everything hurts and you need to be able to flop in your chair and not feel constrained.  For that, I love a looser, less structured blazer like Review’s Aries jacket, or a completely jersey blazer.  I got one from Kmart that looks surprisingly professional when not covered in cat hair, but I can’t find it anywhere on their website.

This is less of a “must have” than the other things, but a jacket really does finish off an office outfit and is great for turning a casual outfit into an office-appropriate casual Friday outfit.  Endo sufferers may not need a slouchy jacket, but I find that, when I’m having a really difficult day, pain-wise, being comfy everywhere makes a huge difference to my ability to tolerate it.  A stiff jacket looks amazing but saps my spoons, so I feel that a relaxed blazer deserves a spot on this list.

Now, I realise this list sounds super boring.  Basics usually are.  To prove, though, that these pieces are important, I am going to do a week in the trousers and a week in the skirt, wearing them different ways, and including a slouchy jacket at least once in each week.  As someone who spends 5 days a week in business or business casual, though, these basics are incredibly important to allowing me to get through the week with a minimum of pain and discomfort.  I don’t need to rely on them every day, but having them there makes all the difference for those days when I am well enough to go to work, but only if everything else in my life is 100% easy and comfortable.

I’m planning a few more posts themes related to this.  In addition to my proposed “comfy work clothes” lookbooks, I want to talk about about how I have coped with my sudden weight gain, and what I keep in my handbag and at my desk to make work easier for me when I’m struggling.  Are there any other work, clothes or body-image-related posts you want to see?

 

The Perfect Disabled Person

Hi everyone.  Sorry that it’s been so long since my last post – particularly unfortunate given that it is Endometriosis Awareness Month.  I was struck down with a bout of gastro and writing was the last thing on my mind.

As part of Endometriosis Awareness Month, Buzzfeed has been running a series of articles raising awareness about endo.  One of them is “Things You Shouldn’t Say to People with Endometriosis.”  I’ve written on this before here, here and here, and given some suggestions about things to say instead here, so it’s always interesting to hear things other people are sick of hearing.

The Buzzfeed article, written by Lara Parker, is fairly tongue-in-cheek.  She gives some brief explanations about why you shouldn’t say these things, but she also writes how she would like to respond when these questions are asked.  It made me snicker.

Unfortunately, the responses on Buzzfeed’s facebook page and on the article were deeply disappointing, mostly from people who obviously do not get it and can’t be bothered to try, and even some from people with endo who apparently forget that we are allowed to be a little bit upset and annoyed about this horrific disease and people being arses about it.

People of colour in majority white societies have often noted the pressure to be the “perfect minority” – the model for all their race.  If they do a wrong thing, it just goes to show that “all people of X race are like that”.  I think there is a similar-but-different pressure on disabled and chronically ill people.  Whilst we aren’t required to represent the whole demographic the way people of colour are, there is a pressure to be this “ideal” disabled person.

What does the ideal look like?  Basically, inspiration porn.  Preferably, they were able-bodied and had a promising future, but they lost something – usually their ability to walk – in a horrific accident.  Doctors said they would never move again, but they regained use of their arms and took up Olympic paragliding, spouting mantras such as “the only disability is a bad attitude!”  They overcome every obstacle that a world built for able-bodied people creates for them rather than asking that maybe the world undergo some reasonable adjustments.  They are an inspiration to disabled people everywhere!  They teach lessons about the power of positivity!

They are a stick used to beat disabled people who are tired, cranky, depressed, or whom able-bodied people don’t think are trying hard enough.  “If they can do it, why can’t you?” And if a disabled person suggests that perhaps that isn’t actually the best attitude, we are rude, unhelpful, and bitter.

Here’s some examples of comments on the article:

So you don’t want us to try and relate to you, or feel sorry for you? After what you wish we didn’t say, maybe add something saying what we SHOULD say. This is such a negative post.

 

This is a tad aggressive. I understand that it is frustrating to live with a chronic illness that has no cure and limited treatment options, but I think people suggesting options to help your pain is clearly out of trying to help ease your pain and out of caring. If you’re going to get that upset every time someone tries to offer you a helpful suggestion (even if it might not be helping) than you must have a terrible attitude. Especially regarding the questions of “can you have children with this condition?” I think it’s safe to say a person asking you this is probably trying to understand your condition and the implications of it. Sounds like the person who put this article together needs a therapist.

 

What a bitter way to look at the wolrd, I think a lot of times its our instinct to try and help people we care for. So even if I’m sure it’s been suggested to you, you have to look at it from positive angle, this person is suggesting something because they care about you and wants to help you. I have endo and while I know our journey is different, I can relate to all the suggestions but every time someone gives me one, as silly as it is, I can see in their eyes that all they want is to figure out how to make you feel better. How can you be so upset about that.

 

A tad aggressive…. I have a few unseen conditions too and if people offer some advice I simply say thank you or thanks I’ll look into it. No more no less….”

 

Here’s a thought…. If you don’t want anyone to comment on your illness / problem, don’t bring it up to begin with. If you just keep it to yourself, like most people do with their health problems, others won’t have any reason to comment or suggest anything. Rather than get on here and bitch that people are suggesting things, just shut up all the way around and it will solve all your problems before they even have a chance to start.”

 

Here’s what I think able-bodied people who say this kind of thing don’t get: most of it.  Possibly all of it.  But specifically:

  • That relating to us or feeling sorry for us is all well and good, but it doesn’t come in the form of suggesting we try yet another fad diet, or that we should be fine if we have this treatment because it worked for their cousin’s girlfriend.
  • That sometimes we get sick of people making unsolicited suggestions and rude comments, or asking really personal questions, and we are allowed to be frustrated that people actually seem to think that this is ok.
  • That this is not the same as aggression.  Passive-aggression, perhaps, but like most people, we really have to be pushed to breaking point before we morph into some sort of were-beast and start tearing faces off.
  • That the questions and comments stack up.  We might be hurt or frustrated by a single question that, however well-intentioned, is invasive, rude or dismissive, but that when you get them all the time, it is hard to stay calm and patient.
  • That intention is not the same as impact.  Someone could care deeply about me and my pain, but if they are asking a string of really personal questions or insisting that I would be fine if I tried the keto diet, their intention doesn’t matter as much as the impact it is having.  And surely, if they care, they would care about my feeling on the subject too?
  • That we educate people about this all the time.  We are generally happy to explain what endo is, if it is the right time and place.  That doesn’t mean that we don’t get sick of having to do it again and again and again, or when someone starts demanding answers that a quick google search would provide when we just want to get on with our days.
  • That we don’t tend to bring our problems up out of context, and when we do, we are either looking for a specific solution, should as flexible work hours, or explaining why we can’t do a thing.  That doesn’t mean we want to be told to have a baby or a hysterectomy.  Also, we can’t shut up and take opportunities to educate people.
  • That endometriosis is utterly exhausting, physically and emotionally, and we cannot always be happy, positive, and polite.  There are some days I can’t even speak to people without literally feeling the conversation draining me of energy, however much I love the other person and enjoy the topic of conversation.

What I’d really ask people to do this March is to listen to us.  Listen when we say that things hurt or upset us, and listen to why.  Even if you don’t get it, please respect it, and understand that it’s not an attack on your freedoms or your character.  We’re just asking for a little bit of shush, or perhaps for you to say, “oh, that sounds awful,” and give us a hug or a nice cup of tea.

And don’t tell us to be more positive.

Courage, Dear Heart

William Tecumseh Sherman (a general in the American Civil War, among other things), described courage as “a perfect sensibility of the measure of danger, and a mental willingness to endure it.”  I think that’s a good, if slightly narrow definition, as it takes courage to face hardship, humiliation and pain just as much as danger.  Either way, it’s a quality vital to the chronically ill.  It takes courage to live every day with discomfort and sickness.  That’s why it was my theme for February.  Below are all the quotes I’ve written in my journal this month.  My journal also helpfully inserted on of it’s own: “Life shrinks or expands in proportion with one’s courage” – Anais Nin.

I chose courage as the theme for February because I think we really start to need it now.  The first rush of hope that comes with the new year has faded and we are faced with the reality of life going on, as it does.  It can be a painful come-down from January, and I find myself needing a little bit of courage to push through it.

As with January and its theme of “hope“, I’ve tried for a range of quotes that capture a lot of different aspects of courage – what it means, how you get it, what it does, why it is important, and what things require it.

If you are wondering why the picture for this article is a handsome little black and white mouse on a luxurious red mouse-sofa, it is because that is my dear departed mouselet Napoleon, whose namesake was, whilst unfortunately French, undeniably brave.  My little mousey Napoleon was also extremely brave, and though trying to take on my rats (at least ten times his size, in one case) was a perfectly reasonable move.  He never actually managed to get them, and instead lived a life of luxury, got quite chubby, and died at the ripe old age of two and a half.  He was adorable and I loved him.

Anyway.  Courage.

  1. “Courage is rightly esteemed the first of human qualities…because it is the quality which guarantees all others.”  – Winston Churchill
  2. “It requires more courage to suffer than to die.” – Napoleon Bonaparte
  3. “Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” – Lao Tzu
  4. “Success is not final, fear is not fatal; it is the courage to continue that counts.” – Winston Churchill
  5. “You gain strength, courage and confidence by every experience in which you really stop to look fear in the face.   You are able to say to yourself, ‘I lived through this horror.  I can take the next thing that comes along.'” – Eleanor Roosevelt
  6. “Courage, sacrifice, determination, commitment, toughness, heart, talent, guts.  That’s what little girls are made of.” – Bethany Hamilton
  7. “Mistakes are always forgivable, if one has the courage to admit them.” – Bruce Lee
  8. “We don’t develop courage by being happy every day.  We develop it by surviving difficult times and challenging adversity.” – Barbara de Angelis
  9. “Courage is what it takes to stand up and speak; courage is also what is takes to sit down and listen.” – Winston Churchill
  10. “It takes courage to grow up and become who you really are.” – e e cummings
  11. “God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.” – Reinhold Niebuhr
  12. “Efforts and courage are not enough with purpose and direction.” – John F Kennedy
  13. “Courage is grace under pressure.” – Ernest Hemingway
  14. “The greatest test of courage on earth is to bear defeat without losing heart.” – Robert Green Ingersoll
  15. “Only those who will risk going too far can possibly find out how far one can go.” – T. S. Eliot
  16. “One isn’t necessarily born with courage, but one is born with potential.  Without courage, we cannot practice any other virtue with consistency.  We can’t be kind, true, merciful, generous or honest.” – Maya Angelou
  17. “Have the courage to say no.  Have the courage to face the truth.  Do the right thing because it is right.  These are the magic keys to living your life with integrity.” – W. Clement Stone
  18. “From caring comes courage.” – Lao Tzu
  19. “Courage is contagious.  When a brave man takes a stand, the spines of others are often stiffened.” – Billy Graham
  20. “The truth is: belonging starts with self-acceptance.  Your level of belonging, in fact, can never be greater than your level of self-acceptance, because believing that you’re enough is what gives you the courage to be authentic, vulnerable and imperfect.” – Brene Brown
  21. “It took me realising that a broken heart has never actually killed anyone to find the courage to ask for what I want, in just about ever situation.  That was part of my own growing up.” – Ginnifer Goodwin
  22. “Courage is not simply one of the virtues, but the form of every virtue at the testing point.” – C. S. Lewis
  23. “Amongst the qualities a hero should have, I would include determination, loyalty, courage, perseverance, patience, focus, intrepidity, and selflessness.” – Ricky Martin
  24. “I believe that my worth is not measured by what I do, by the honours that are bestowed upon me, or by material wealth that I might obtain.  Instead, I am measured by the courage I show while standing for my beliefs, by the dedication I exhibit to ensure my word is good, and the resolve I undertake to establish my actions and deeds as honourable.” – Burgess Owens
  25. “Courageous people do not fear forgiving, for the sake of peace.” – Nelson Mandela
  26. “Daring to set boundaries is about having the courage to love ourselves, even when we risk disappointing others.” – Brene Brown
  27. “God grant me the courage not to give up what I think is right even though I think it is hopeless.” – Chester W. Nimitz
  28. “Have courage and be kind.” – Cinderella

The hardest part about this list is keeping it to just 28.  There are so many things to be said on this theme.  Do you have a favourite?

Stay brave, my friends.  Come back next month for March’s theme: kindness.

February Gratitude

CW: pregnancy, body image

As I mentioned in January, one post I really want to try and commit to each month this year is a list of things I am grateful for.  It is actually quite challenging.  Although I’m generally a positive person who lives life at a level I would call “content”, and only occasionally swing into bouts of terror and sadness, this is quite a challenge for me, particularly since I want to put my animals and my family on every list and I have set myself the challenge to be grateful for new things every month.  Anything that stretches my ability to be grateful, however, I suspect is a good challenge.  Practice, after all, makes perfect.

1)  fLash Lash

This may sound terribly superficial, but since we’ve already established that I am I’m going to plough right ahead anyway.  My friend put me on to this lash serum.  I was really sceptical at first because the idea of a lash serum just sounds really gimmicky to me.  However, I’ve been using it for about a month now, and it works!  My lashes are actually longer.  I tried to take a before and after, but unfortunately my before is really blurry so it’s extremely hard to see any sort of difference.  The difference isn’t huge – certainly nothing as dramatic as the pictures on the website –  but it is noticeable, and I love it.  I will definitely be repurchasing this one.  (And no, sadly this is not a sponsored post and I do not get any money from spruiking the wonders of fLash Lash).

2) Maternity jeans

I’m not pregnant, but I am now a sworn devotee of maternity jeans.  I’ve never actually tried them before, although I have written about them as I know other endo-warriors who wear them.  Now I’m not sure I ever want to wear anything else.  I tried on this pair yesterday and was blown away.

A1308027
Image description: a pair of legs wearing black skinny jeans with a rip on each knee standing in a Scandi-style room with a white crib.  There is a wooden window seat next to the legs with a cream cushion and a grey throw.

They look like jeans, but they feel like leggings and they are so soft and comfy on the belly.  They are actually quite flattering, and I say this as someone who has always felt very self-conscious about the width of her hips in leggings and skinny jeans.  With a pair of biker boots they are positively badass.  Badass comfort – what more could you possibly want?  You could fight crime and look cool in these things.

3)  New friends

Whilst I still miss my friends from my old workplace, particularly my fLash Lash friend and another lovely woman who left a few months before I did, I am delighted to have found such incredible people at my new job.  They are mostly women, and they are all wonderful – friendly, helpful, chatty, hardworking, collaborative, and always up for a jaunt to the local coffee shop or grocer.  They’ve made me feel so at home.  Great colleagues make for a great job even when the work isn’t tops, and I love the work too, so it’s great all round.

4)  My employer’s attitude to disability

Although I have thankfully not had to put it to the test in a “I’ve only worked three hours in the last month” sort of way, my employer so far seems really pro-disability and supportive of disabled staff.  We get personalised desk assessments (everyone, disabled or otherwise) and if you have a pre-existing condition they get in a physio or other specialist to do it.  Mine has resulted in a better chair and an extra plug so I can have my electric heat pack plugged in at my desk.  This means no more awkward trips to and from the kitchen every forty minutes juggling a piping hot wheat bag that will be painfully hot at first and then cool down annoyingly quickly.  This hugely increases my ability to stay at my desk working.  It makes such a difference.

5)  Cool weather

I don’t do terribly well in the heat.  I am too white for days much above 30 degrees.  I like a gentle cool breeze on a warm 27-28 degree day.  English summers are largely perfect, in my eyes.  Summers here are dry and baking and seem to parch the moisture right out of you, except when it is stormy in which case they are hot and sweaty but still leave you really thirsty and dry on the inside.  Thankfully, February has largely seen a move to more gentle temperatures.  As I write this, we’re expecting a top of 24.  Perfect.  Love it.  I know I’ll be having the opposite feeling come winter, but right now I’m happy as the proverbial clam.

6)  Nice hair

It’s not always nice, but yesterday I got a haircut and now it’s just spiffy.  It’s great while it lasts and it makes me happy.  It smells nice, too.

7)  Adventurous tomatoes

I didn’t plant any tomatoes this year.  My plants just ran riot last year and I had more tomatoes than I could comprehend, so I thought I’d give them a miss this year.  Despite this, I have four or five tomato plants sprouting in the garden, including one that is growing in the cracks of the pavement again.  They are plucky and determined plants, and I’m actually pretty excited because I do like tomatoes.  I also have a single brave chili growing in my Vegepod.  I’d forgotten I even planted chillis (did I plant chillis?  Is it even a chilli?  We’ll find out when I cut it open, I suppose).

IMG_3818
Image description: my hand, holding six slightly oval little tomatoes.  One has a green stem on it.  There is dirt on some of them and on my fingers because they are fresh from the garden.

8)  Valentine’s Day

Like most people, I’m not a huge fan of the commercialism that inevitably springs up around days like this.  However, I am a fan of the idea of love persevering, and a brave man helping couples marry in secret.  I also like the reminder it brings to have a special date with my husband and take an evening to really cherish our relationship.  We’ve endured a lot together and it’s really important for us to make happy memories too.

9)  The Done app

As you may know from my previous mention of my dairies, I’ve switched from a bullet journal to a more traditional (but also very fullsome) planner this year.  One other thing I’ve done is make my habit tracker digital.  There’s an app called Done which allows you to track 5 habits for free, or as many as you like for $6.99.  I paid for the full suite.  I’m sticking to tracking my habits far more effectively when it’s on my phone, and it is actually easier to view trends there.

Image result for done app
Image description: text that reads, “Track any goal or Habit.  Track an activity multiple times a day, week, month or year.”  Beneath that is a grey silhouette of a phone.  On the screen it says, “Done”.  Beneath that are five bars.  A partially-filled yellow one says “Wake Up Early: 3.  This week, 03/04 mornings”.  A partially filled red one says “Workout: 5.  This month: 08/10 sessions.”  A partially-filled bright blue one says “Drink Water: 3.  Today: 04/08 glasses.”  A partially-filled lilac one says, “Meditation: 3.  Weekly: 02/03 sessions.”  A fully-filled blue one says, “Less coffee: 5.  Today: 00/02 cups max.”

When you have reached your goal for the day/week/month/whatever, the bar fully fills up.  The number on the right refers to your streak of how many days/weeks/months in a row you’ve managed the habit.  It’s quite motivating and really quick to do.

10) Finally getting over this cold (I hope)

This darn cold is dragging on and on and on, as they always do when you have an immune system as useful as the male nipple.  However, I think it might finally be going away.  I can feel something almost like energy waving a tentative hand in my direction, and my headache is only dizzying instead of catastrophic.  Progress!

 

 

Secondary Conditions: Chronic Fatigue Syndrome

I’ve written a lot about endometriosis.  I’ve also written about some of the “side-effects ” people with endo often suffer, such as back pain, digestive issues, and gastritis.  Now I want to write a little series on other chronic conditions that often appear alongside endometriosis.  Today, it’s myalgic encephalitis (ME), better known as chronic fatigue syndrome, aka CF or CFS.

Like most chronic illnesses, chronic fatigue can be mildly described as a massive pain in the posterior.  It’s exactly what it sounds like – extreme exhaustion that varies from sporadic to constant.  Have you ever had glandular fever, and had that dreadful, bone-aching exhaustion that drives you back to bed, on the verge of tears from sheer tiredness, just two hours after a 16-hour sleep?  I’m told its much like that.  In fact, chronic fatigue can often develop after a bout of glandular fever.  In other words, to describe CF as mere constant tiredness is inaccurate.  It’s crushing.  It doesn’t get better with rest, and it gets worse with lack of rest.  My own bout of glandular fever has given me a healthy fear of chronic fatigue.  I’ve never felt so horrific and disconnected in all in my life, and I only had it for nine months.  CF can be limited in duration, but it can also last for years, or for a lifetime.  Anyone of any age can contract it, even children.

This exhaustion may be the only symptom sufferers endure, but others may experience headaches, dizziness, weakness, nausea, light-headedness, aching muscles, joint pain, sore throats and tender lymph nodes, as well as trouble remembering, concentrating, or forming sentences (brain fog).  Unfortunately, most of these are also symptoms of glandular fever or even influenza, so it is worth speaking to your doctor to rule those two out.  Glandular fever can be confirmed with a simple blood test.  Indeed, excluding other conditions, such as anaemia, is the only way to arrive at a CF diagnosis, as there is no one test to confirm that you have it.

There’s also no known reason as to why people develop it.  Like most of the illnesses I’ve discussed in this series, it appears to affect those of the XX persuasion more than the XYs.  Its onset it sometimes linked to physical stressors, such as infections, imbalanced gut flora, and hormones doing wacky things, as well as just plain stress.  However, we’ve yet to identify a single factor that guarantees you’ll get it, and having any or all of the above doesn’t mean you’re automatically going to.

As you can imagine, the impact of severe chronic fatigue is devastating.  It can totally prevent normal socialising, normal functioning – normal anything.  It leaves people without the strength or energy to do much more than maintain the physical functions, and I’m told even that can be a stretch on bad days.  Even those less severely impacted suffer the impacts on their work and social life, particularly as it can strike at any time of day.  For those whose friends or family suffer it, prepare to extend a lot of patience, sympathy, grace, and practical assistance wherever you can.

So, what’s the good news?  Unfortunately, it isn’t that there’s a cure.  There isn’t.  There’s also no one treatment.  Really, the news isn’t that good.  Treatments are largely changing lifestyle factors – ensuring a healthy diet, planning your day around periods you tend to have more or less energy, pacing yourself carefully, and practising good sleep hygiene, including avoiding caffeine or naps late in the day.  Gentle exercise may help some, but for those who suffer Post-Exertional Malaise (an increase in exhaustion after activity) will probably not benefit.  Symptoms such as headaches etc can be treated with painkillers.

The most important thing, as I understand it, is having support.  Supportive friends, a supportive workplace, but most of all, support from people who get it.  I think that’s true of most chronic illnesses – to have even just one person who knows what it’s like can be a huge relief.

Do you have chronic fatigue?  What was the trigger for you in developing it?  Do you have any coping strategies you can share?  Let me know in the comments.

 

Secondary Conditions: Fybromyalgia

I’ve written a lot about endometriosis.  I’ve also written about some of the “side-effects ” people with endo often suffer, such as back pain, digestive issues, and gastritis.  Now I want to write a little series on other chronic conditions that often appear alongside endometriosis.  Today, it’s fibromyalgia, aka fibro, FM, or FMS.

Before I carry on, I just want to apologise for this post being a little tardy – I’ve been very sick with a nasty, persistent cold and some rather bad flare-ups, so I haven’t had any energy to spare for writing this week.  I suspect there will just be one post next week as well, so bear with me for a bit whilst I recover.

Of all the chronic conditions that people with endo often end up with, fibro is probably the one I fear the most.  The reason for that is that my endo pain is generally confined to my torso, and at worst may cause shooting pains in the legs.  Fibro is just pain everywhere.  All over.  Muscles, joints, bones, the whole shebang.  Imagine that – pain embedded in your skeleton.  It can be limited to just a few spots on the body, true, but it can also effect the whole body at once.  People who have fibro have described it to me as hellish, rendering them completely unable to move.

In addition to pain, it can cause such delightful symptoms as tingling, muscles that twitch, cramp or go suddenly weak, headaches, dizziness, generalised weakness, sensory overload, impaired concentration so bad you can hardly string a thought together (aka brain fog), insomnia, restless sleep, intolerance of hot or cold, stiffness, irregular periods, depression, bowel troubles, bladder issues and more.  Doesn’t it just sound like a hoot?

Of course, the best part is that, just like endometriosis, we don’t know what causes it, and there is no cure.  We do know that stress exacerbates it and there seems to be a link between onset and physical trauma, but not all physical traumas cause fibro and not all people who suffer from fibro have experienced a physical trauma.  We also know you’re more likely to suffer from it if you’re a woman (80-90% of sufferers are female).

Because of the wide variety of exciting symptoms, fibro can be difficult to diagnose.  There’s no conclusive test, even through surgery.  It’s mostly a case of ruling out other causes for pain.  Unfortunately, this can often result in delays of diagnosis for sufferers of fibro.

The treatment is also difficult.  Mostly, it’s lifestyle management, like identifying and avoiding triggers (difficult to do when triggers can be things like, well, moving).  Many doctors recommend physio and gentle exercise, such as water-based exercise, yoga, or tai chi.  It’s also recommended to eat well, avoid stress (lol) and get plenty of rest (extra lol). (I note that I am laughing at how they make that sound so easy, not the idea itself – lots of rest and minimising stress are important in battling any chronic condition). Unfortunately, some things that can cause flare-ups can’t be avoided, such as weather changes (yes, seriously), and travelling.

There are medical treatments as well.  Some people can get along well with panadol and ibuprofen, but others may need to resort to stronger drugs like pregabalin and gabapentin.  Like treatment for endo, it can get expensive quickly.

The connection between endo and adeno and endo and PCOS probably seemed quite logical, but why have I linked endo and fibro?  Well, because studies suggest people with endo are more likely to suffer from fibro.  We’re also more likely to get chronic fatigue, a condition we tend to have in common with fibro sufferers, and which I will be writing about next.

I live in deep admiration for people with fibro, especially those who also suffer from endometriosis.  I have a really hard time sometimes just dealing with one condition.  I know how deeply it impacts every aspect of my life, from my relationships to my job.  Fibro just seems like…what fresh hell is this?  I know how you get through it – you have to, and do you do – but I am in such awe of your strength and willpower.  Keep fighting, my friends.

Do any of my readers have fibro?  I would love it if you could share your experiences with diagnosis, treatments, and just life with fibro generally in the comments.

 

Secondary Conditions: Polycystic Ovarian Syndrome

I’ve written a lot about endometriosis.  I’ve also written about some of the “side-effects ” people with endo often suffer, such as back pain, digestive issues, and gastritis.  Now I want to write a little series on other chronic conditions that often appear alongside endometriosis.  Today, it’s polycystic ovarian syndrome, aka PCOS.

What is PCOS? Well, it’s a condition whereby the ovaries become enlarged and prone to cysts. Tiny little follicles grow on the ovaries, containing partially formed eggs that rarely grow to maturity or become fertile. The body produces too much insulin and androgen (a male hormone).

PCOS can cause weight gain, excessive hair growth on the body, hair loss on the scalp, depression, sleep apnea, acne, pain, infertility , increased likelihood of diabetes, and irregular periods.  It’s a nasty disease and the side effects (wrongly) carry a lot of social stigma.

Like adeno and endo, no one is really 100% sure what causes PCOS. It does appear to run in families and is more likely to effect women who are overweight, but neither of these is a guarantee of getting it, nor are slender people with no family history automatically exempt. What we do know is estimates suggest it could effect as many as 20% of people with ovaries of reproductive age, and often goes undiagnosed.

As with any disease where weight increase is both a symptom and increases the risk of either contracting the disease or exacerbating the symptoms, doctors will urge sufferers to make healthy lifestyle choices, particularly around diet and exercise. Not for a moment will I pretend this is a bad idea.  Sufferers can achieve significant relief from symptoms with only a small amount of weight loss (which sounds a lot easier than it is when your own body is fighting you every step of the way).  However, I do urge people not to allow doctors to attribute everything to their weight and offer no other assistance. Hormonal treatments can also be an important part of dealing with PCOS, both to block and to raise different hormones.

It’s also a good idea to have a mental health professional as part of your treating team. Dealing with difficult symptoms that our society wrongly but consistently perceives as “gross” or symbolic of laziness is hard enough. Dealing with a disease that also can cause depression is an extra battle you shouldn’t have to fight alone.

Before you can start to be effectively treated, however, you need to be diagnosed. There is no 100% guaranteed method of diagnosis. Scans may show cysts on your ovaries, but you can have ovarian cysts without having PCOS. Likewise, you can have PCOS but not have anything visible on scans. You can also have blood tests that will look at hormone levels in your blood to see what, if anything, is elevated.  Like endo, though, it can just be a lot of guesswork and diagnoses are often based purely of reported symptoms.

Endometriosis and PCOS, unfortunately, often travel in packs, and it is relatively common to have both.  However, plenty of people only deal with one or the other.  I’m lucky enough not to have had to deal with PCOS. I have friends, acquaintances and possibly family members with it, and their experiences have ranged from annoying to devastating. Have any of my readers experienced PCOS? What was your path to diagnosis?  If anyone wants to write a guest post about how PCOS really feels on a day to day basis, I’d love to publish it.

Secondary Conditions: Adenomyosis

I’ve written a lot about endometriosis.  I’ve also written about some of the “side-effects ” people with endo often suffer, such as back pain, digestive issues, and gastritis.  Now I want to write a little series on other chronic conditions that often appear alongside endometriosis.  Today, it’s endometriosis’ sister, adenomyosis.  

A week ago I mentioned that I have a tentative diagnosis of adenomyosis. My doctor suggested this after surgery has failed to resolve my pain and swelling despite all endometriosis having been removed and nerve pain being largely ruled out. He is the first to suggest that adenomyosis may be mucking around in my uterus.

But what is adenomyosis, aka adeno?

Well, you know how endo is when endometrium-like material grows wherever it wants instead of where it should? Adenomyosis is where it grows inside the uterine wall. Not inside the uterus, where it could be handily dug out, but inside the muscle wall itself.

Image result for adenomyosis
Image description: a diagram of a normal uterus next to a uterus with adenomyosis in the uterine wall.  Image credit: https://step2.medbullets.com/gynecology/120209/adenomyosis

I’m told it’s in the name – adeno (gland), myo (muscle) and osis (condition).

Like endo, adeno can only properly be diagnosed through surgery, although symptoms, transvaginal ultrasounds and MRIs can all offer diagnostic clues.

Symptoms are similar to those of endo – bleeding, pain, swelling. The usual culprits. It usually appears hand in hand with endo, but not always. You can have just one or the other. It can also be masked by the presence of endometriosis. The possibility of me having it wasn’t even raised by doctors until we were sure all my endo was gone and I was still having pain.

Unfortunately, the fact that it is buried inside the wall of an organ is problematic when it comes to treatment. Endo, at least, only requires the sufferer to have some holes bored in their abdomen so surgeons can get into the pelvic cavity. On the plus side, adeno can be cured by a hysterectomy, unlike endo. Other treatments include IUDs, menopause, and keyhole surgery.

Surgery itself comes in a variety of forms for adeno. As mentioned, there’s a full-blown hysterectomy (typically a last resort). Another option is uterine artery embolisation, or UAE, which blocks the two main arteries supplying blood to the uterus. With these blocked, bloodflow is significantly reduced (although not totally inhibited) and the adeno is also starved of blood. It’s not a cure and it may require repeat surgeries.

The other option is myometrium resection, or adenomyoma resection, which focuses on the removal of large clumps of adeno, known as adenomyoma. Unfortunately, it targets only those clumps and won’t get tiny bits scattered across the uterus. It can improve pain and fertility, but also carries the risk of the uterine muscle being torn or weakened, and may increase the risk of miscarriage. As usual, all our treatment options are an exercise in trade-offs.

What causes it? Well, like endo, that is something of a mystery. Current wisdom indicates that some type of trauma to the uterus, such a childbirth or surgery (such as removal of endometriosis) can encourage it. Isn’t that a fun piece of irony?

All in all, there’s a lot of similarities with endometriosis, and not in a good way. To most endometriosis sufferers, I suspect being told they also have adenomyosis will just feel like another hurdle in a very long and bumpy road rather than a new road altogether. For others, it will be devastating news – here’s another lifelong illness.  I’ll admit I shed some tears.

For me, the next step is to get my pain more under control and confirm the diagnosis so we can respond as effectively as possible. I’ll keep the blog updated on how things go.

Do any of my readers also suffer adeno, or suffer it without endo? What have your experiences been? I’d love to learn more as I’m very new to this.

How Christians Can Respond to the Chronically Ill

One of my favourite stories in the Bible, probably for obvious reasons, is when the woman with chronic menstrual issues pushes through a throng of people surrounding Jesus, saying to herself, “if I can just touch the hem of his cloak, I’ll be healed.” She was desperate for healing, which resonates with me deeply. She was also incredibly brave – as she couldn’t stop menstruating, she was ritually unclean and was forbidden from mingling with society, let alone touching a rabbi. So she was also socially isolated and, I suspect, depressed and taking quite the hit to her self-esteem. Uniquely (to my admittedly less-than-professional biblical knowledge), she doesn’t ask Jesus for healing. She touches him, filled with unshakeable faith, and his power flows out of him and heals her. Her courage and faith heal her. It’s a story that thrills and inspires me, because I can so strongly imagine what she felt, and I can aspire to have her conviction.

What I mean to say with my long-winded introduction is that the Bible, and Jesus (who commends the woman) have a place for the chronically ill and the beaten down. Unfortunately, sometimes the church doesn’t. It almost always comes from a place of goodwill, but it still hurts when they get it wrong.  I’ve been mostly lucky in my church – things that have hurt me have been things said by well-meaning people in general conversation, rather than directed to me, but I draw from the experience of many people in writing this, and they have all been wounded by it. That’s why I want to talk about how churches and Christians in general can be more welcoming to the chronically ill.  Below I offer three don’ts and three dos as to how Christians can achieve that goal.

1) Don’t resort to platitudes

This is a good tip for anyone when responding to the chronically ill (or anyone enduring any sort of suffering, from anxiety to grief), but I think Christians are the worst at it because we have an entire book of handy phrases neatly packaged up in the form of the Bible.  Many of those verses are great, but they all have a time and a context, and usually they aren’t appropriate to say to us.  Here’s some examples that I don’t think are helpful:-

  • Verses about God’s ways being higher than our ways so we can’t know the meaning of things;
  • Verses about there being a time and a season;
  • Verses about God’s healing;
  • Verses about how suffering is to teach lessons.

There are probably others, but those are the main culprits.  The reasons that these aren’t helpful is that we know God’s ways are higher than our ways.  Telling us that is not comforting.  I adore the poetry of Ecclesiastes,  but telling us that there is a time and a season is not helpful to the chronically ill because our whole lives are going to be the time and the season.  We know the verses about God’s healing, but the healing itself is not being shared with us right now.  Finally, the idea that we might learn something from our intense pain does nothing to counteract the, you know, intense pain.  It would have to be a truly mind-blowing lesson to be anything close to worth it.

2) Don’t tell us that we are Christianing wrong 

Some Christians take the view that either:-

  • We sick because we sinned; or
  • We aren’t getting better because we aren’t praying hard enough.

Wrong.  Wrong and unbiblical.  Just as we aren’t matyrs who suffer to learn great spiritual truth, we’re also no worse than anyone else.  We all sin.  We don’t all have chronic illnesses.  Job was one of the most righteous men in the bible, and he lost his home, his family, his wealth, his friends, and his health in two devastating attacks.  In John 9, Jesus specifically said that the man born blind was not blind because of any sin he or his family had committed.  Bad things happen to good people and vice versa.  We are not cursed or unclean or any more sinful than you.  We’re just sick.

Likewise, God doesn’t necessarily hand out a free healing to those who get enough stamps on their loyalty prayer card.  Paul writes in 2 Corinthians 12 that he begged the Lord to heal “the thorn in his flesh,” and the Lord refused.  Is anyone honestly going to suggest it was because Paul, possibly the most influential Christian in history, lacked faith?  Sometimes – often – God doesn’t heal.  I don’t know why, but I do know that it isn’t the fault of the person begging for healing.

Saying these kind of things isn’t just unhelpful and inaccurate, it’s damaging.  If people believe you when you say this, they are going to feel inadequate, rejected by the church and by God, and you will deal a horrible blow to their faith.  Stop it.

3) Don’t publicly pray for us unless we request it, or force us into group prayer sessions

It is nice to be remembered in people’s prayers, but please don’t pray for us in the congregational prayer without at least checking with us that it’s ok.  Some people aren’t “out” about their chronic illness.  Some people just don’t want to be the centre of attention, or have unnecessary attention drawn to their illness.  It can lead to embarrassing and intrusive questions at the end of the service that we may not want to field.

Likewise, being drawn into a group prayer session, or even a one-on-one prayer for healing can be embarrassing.  It creates this expectation of healing, and if it doesn’t work, you run the risk of people doing something from point 2.  If the sick person is fine with it, go for it, but please make sure that they are actually fine with it and don’t feel pressured into it.  If they say no, or seem uneasy, please drop it and ask if you can just pray for them on your own.

4) Do make church accessible (not just for the chronically ill)

Have an ambulant toilet (near the other toilets, not down a corridor, through an office and behind a locked door that you need an elder to open).  Have spaces for wheelchairs.  Have nice cushy seats for people with pain.  Have braille on the toilet door.  See if a church member speaks Auslan and is willing to interpret, or project the points the pastor is making onto a screen.  Make your church camps, getaways, meetups and breakfasts at times and locations that sick people can attend.

For me, the biggest thing is good seats.  I cannot sit on the usual school chairs and benches most churches provide without a lot of pain after a very short time.  Having some comfier chairs at the back of the church – not out in the foyer so I have to watch through the doors! – can make the difference between me being able to go to church and not.

5) Do offer practical assistance

It’s all well and good to pray for someone.  Indeed, God commands it.  He also praises people engaging in practical acts of service.  Perhaps you could cook them a couple of freezer meals, or ask if they need any help around the house, or check if they need a lift to and from church on Sundays.  Those are all small things that could make a huge difference.  Just don’t make a big deal out of it – treat your sick fellows like everyone else in the church.  We should all be serving each other in whatever way we can.

6) Do represent the sick and disabled

Whether by having sick/disabled people on the ministry team or praising them for their courage and strength in sermons, represent us in the church.  Don’t glorify us or turn us into inspiration porn, but preach on that woman with the menstruation problems.  Preach on the lepers and the blind.  Show that Jesus loved the sick and disabled too, and show that we are people, not just parables.  Keep us human, and keep us involved.

 

That’s my list of quick tips for the inclusive Christian.  Do you agree with these points?  What do you wish your church would do to make it a more inclusive space?  What good things is it already doing?  Do any of my readers from other religions or groups have similar experiences?  Let me know in the comments.

A Collation of Hope

Early in January I talked about a number of quotes about hope that I’d been writing down.  It’s a practice I’ve continued throughout January and intend to keep up all year with various themes that seem applicable and relevant to my life.  Next month will be courage.

This isn’t really a proper post so much as a list, but I thought I’d put all 31 of my quotes for the month here in case anyone needed some inspiration.  For completeness sake I will also include the quotes from my last post.  I won’t explain my thoughts on them all this time: this is just for reference in case you need a quick little soundbite of hope.

All of these quotes represent, to me, an important aspect of hope.  Hope warms, it empowers, it pushes you on.  It is really hard to do.  It can spark revolutions or just make a hard day a little easier.  It is something we have the power to share.

  1. “I hope that in this year to come, you make mistakes. Because if you are making mistakes, then you are making new things, trying new things, learning, living, pushing yourself, changing yourself, changing your world. You’re doing things you’ve never done before, and more importantly, you’re doing something.” – Neil Gaiman
  2. “Hope smiles from the threshold of the year to come, whispering, “it will be better.”” – Alfred, Lord Tennyson
  3. ““Hope” is the thing with feathers –
    That perches in the soul –
    And sings the tune without the words –
    And never stops – at all –

    And sweetest – in the Gale – is heard –
    And sore must be the storm –
    That could abash the little Bird
    That kept so many warm –

    I’ve heard it in the chillest land –
    And on the strangest Sea –
    Yet – never – in Extremity,
    It asked a crumb – of me.”
    – Emily Dickinson

  4. “Hope is being able to see that there is light despite all of the darkness.”  – Desmond Tutu

  5. “We must accept finite disappointment, but never lose infinite hope.”  – Martin Luther King Jr.

  6. “There never was a night or a problem that could defeat sunrise or hope.”  – Bernard Williams
  7. “Though hope is frail, it’s hard to kill.”  – When You Believe, The Prince of Egypt
  8. “Optimism is the faith that leads to achievement.  Nothing can be done without hope and confidence.”  – Helen Keller
  9. “Fairytales are more than true – not because they tell us dragons exist, but because they tell tell us dragons can be defeated.”  – Neil Gaiman, misquoting C K Chesterton
  10. “I believe that imagination is stronger than knowledge.  That myth is more potent than history.   That dreams are more powerful than facts.  That hope always triumphs over experience.  That laughter is the only cure for grief.  And I believe that love is stronger than death.” – Robert Fulghum
  11. “While there is life, there is hope.”  – Marcus Tullius Cicero
  12. “I don’t think of all the misery, but of the beauty that still remains.”  – Anne Frank
  13. “Everything that is done in this world is done by hope.” – Martin Luther
  14. “We must free ourselves of the hope that the seas will ever rest.  We must learn to sail in high winds.” – Aristotle Onassis
  15. “There is nothing like a dream to create the future.” – Victor Hugo
  16. “Carve a tunnel of hope through the dark mountain of disappointment.”  – Martin Luther King Jr.
  17. “Hope means hoping when things are hopeless, or it is no virtue at all…As long as matters are really hopeful, hope is mere flattery or platitude; it is only when everything is hopeless that hope begins to be a strength.”  – C K Chesterton
  18. “Far away there in the sunshine are my highest aspirations.  I may not reach them, but I can look up and see their beauty, believe in them, and try to follow them.” – Louisa May Alcott
  19. “May your choices reflect your hopes, not your fears.” – Nelson Mandela
  20. “I dwell in possibility.” – Emily Dickinson
  21. “When I’m stuck with a day that’s grey and lonely, I just stick out my chin and grin and say: the sun’ll come out tomorrow, so you’ve got to hang on til tomorrow, come what may!  Tomorrow, tomorrow, I love ya, tomorrow, you’re always a day away.”  – Annie
  22. “Hope is passion for what is possible.” – Soren Kierkegaard
  23. “If you lose hope, somehow you lose the vitality that keeps moving, you lose the courage to be, that quality that helps you go on in spite of it all.  And so today, I still have a dream.” – Martin Luther King Jr.
  24. “This new day is too dear, with its hopes and invitations, to waste a moment on the yesterdays.” – Ralph Waldo Emerson
  25. “A leader is a dealer in hope.” – Napoleon Bonaparte
  26. “Hope is like the sun, which, as we journey towards it, casts the shadow of our burden behind us.” – Samuel Smiles
  27. “Learn from yesterday, live for today, hope for tomorrow.  The important thing is not to stop questioning.” – Albert Einstein
  28. “You are not here merely to make a living.  You are here in order to enable the world to live more amply, with greater vision, with a finer spirit of hope and achievement.  You are here to enrich the world, and you impoverish yourself if you forget the errand.” – Woodrow Wilson
  29. “Where there’s tea there’s hope.” – Arthur Wing Pinero
  30. “Each time a man stands up for an ideal, or acts to improve the lot of others, or strikes out against injustice, he sends forth a tiny ripple of hope, and crossing each other form a million different centres of energy and daring, those ripples build a current that can sweep down the mightiest walls of oppression and resistance.” – Robert Kennedy
  31. “You may not always have a comfortable life and you will not always be able to solve all the world’s problems at once, but don’t ever underestimate the importance you can have, because history has shown us that courage can be contagious and hope can take on a life of its own.” – Michelle Obama