Lifeline’s Response

A few weeks ago I wrote a letter to Lifeline about one of their Australian ads (you can read it here).  They have now responded.

The email reads:

“Thank you for providing your feedback about the Lifeline HOPE billboards.  I am so sorry that they have made you feel the way they do, this is certainly not our intention.  We had aimed to provide a strong message of hope, which is the undercurrent of all our communication campaigns.  To date, I have received plenty of positive feedback about this campaign, your feedback is the first negative, but it has weighed on me heavily. Thank you for taking the time.

The intention behind the poster was that people would see the ad and be encouraged to hold on with HOPE for whatever the reason may be that they need it.  In doing so, I had hoped to encourage a more compassionate Australia. For those in chronic pain, I had hoped to impart hope in the continuing advancement in scientific discovery and the dedicated medical teams who are working in the field. The furthest thing from my intention is to cause anyone harm or to experience isolation.

Ella, this ad placement has been provided pro bono, so I am unable to change where it is placed or how often.  I can give you the undertaking though that the next iteration of  posters I am given the opportunity to post I will ensure there is a different hopeful message.

I am sorry for the distress this has caused you, I hope my response will give you some solace.

Kind regards

Ina”

Ina is the National Manager of Communications and Public Affairs for Lifeline.

Whilst I still think the ad is deeply insensitive and demonstrates a lack of thought, and I don’t buy the “continuing advancement in scientific discovery” thing (anyone with a chronic illness knows that waiting for medical advances is about as hopeful as waiting for a tsunami in the Gobi Desert), I am gratified to have received a reply.  I also very much appreciate the apology.  I do hope that they bear the message in mind and give thought to those of us with chronic pain in future ad campaigns.

I strongly encourage anyone with the spoons to call out ableism or exclusion when they see it.  People without intimate experience of disability or chronic pain don’t even think to double check on whether their language or actions are inclusive – goodness knows I rarely did prior to actually having endometriosis and working to educate myself.  Every time we point it out is hopefully a time the other person goes away to think about it and takes the time to educate themselves and change their behaviour in future, and hopefully become an advocate for us as well.

Keep on keeping on, endo warriors.

Sorry for Being a Slacker

Hello, gentle reader.  I apologise for the lack of posts of late.  Like most people with a compromised immune system during flu season, I have managed to acquire myself my very own pet illness.

Thankfully, in this case, it isn’t flu.  It was a cold, and then it turned into another sinus infection, and it has just stayed that way for two weeks.  I anticipate that I will get at least one more before we kiss August goodbye, and I would not be surprised if I get multiple between now and then.

The super fun part of the infection, you’ll be surprised to learn, has not been the horrifically sore, swollen throat, the aching in my face that feels like goblins are trying to shove my eyes out of my sockets, or even the crushing exhaustion (I’m kind of used to that anyway).  It hasn’t even been the joint aches.

It’s been yet another disappointing encounter with a doctor.

I used to see this wonderful doctor at my local bulk-billing place who has consistently fixed every problem I have taken to him.  I trust him deeply.  Unfortunately, he only sees patients on a walk-in basis now, and I needed to actually book in.  I saw one doctor who is quite nice and who gave me the good antibiotics, but a week later I was still sick and getting worse so I went and saw another dude because the first doctor wasn’t available.

That doctor prescribed me weaker antibiotics, told me to use a treatment my favourite doctor had specifically told me was not beneficial and was possibly harmful, and then:-

  1. Said, “You don’t want a hysterectomy, we won’t do that for you” (I do want one);
  2. Told me there’s no need to go to the UK for a doctor because we have plenty of good ones here;
  3. Recommended a doctor who previously told me I couldn’t possibly have endometriosis so soon after my first surgery (I did);
  4. Told me that if my Australian specialist had refused to perform TPPE (he didn’t even know what it was) that’s because the surgeon knew what was best for me;

and just generally did his best to make me feel guilty about taking my medical care into my own hands with absolutely no understanding of what it took to do so.  Ok, that’s unfair – he was trying to be thorough and ensure that I was seeing someone for my endo – but he was unintentionally extremely condescending and made me feel like I had to defend my choices to change doctors and go to the UK to get surgery I literally could not get in Australia.

It’s another lesson in “if you don’t know the full story, stop judging.”

Yesterday I got sick of the weaker antibiotics not working and my sickness continuing to worsen, so I went as a walk-in and saw my favourite doctor.  He gave me the good stuff again.

Thank goodness for the good doctors.  Boo to the bad ones.

Save These For Future Use, Part 1

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

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

1)  A pain scale we can all understand

Chronic Pain Scale

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

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

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

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

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

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

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

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

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

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

1 – Minimal – My pain is hardly noticeable.

0 – No pain – I have no pain.”

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

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

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

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

2) What being able to work really means

A tumblr thread that reads:

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

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

Dead silence.  Nobody cares.”

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

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

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

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

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

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

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

3) Changed lives

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

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

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

4) The in-between

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

Image reads: “A chronic illness phenomenon

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

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

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

5) It is more than pain

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

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

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

 

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

Stay tuned for Part 2.

Why Easter Matters to Me

CW: It’s an Easter post.  It inevitably talks about religion, suffering and death.

I’ve written before about my faith, but today I want to talk about why Easter specifically matters to me so much as a chronically ill person.

(Before I jump into it, a quick note on the cover photo for today, which is a person in a giant rabbit costume staring out over a shadowed landscape under a cloudy sky.  I have absolutely no idea what possessed someone to take this photo.  It is not quite the crosses-on-the-hill image I was looking for, but it is so strange I couldn’t help but use it.  I love it.  I have so many questions.)

To any of my readers who have somehow escaped hearing what Easter is in the Christian calendar, it is the celebration of Jesus’ death on the cross and his resurrection three days later.  In Christian canon, Jesus is the sinless son of God in human form, with all human frailties and weaknesses, who experienced the full range of human emotion and physical pain.  He began his ministry and around 30, and was eventually put on trial and killed after stirring up a whole lot of trouble amongst conservative Jewish elders, mostly by calling them hypocrites who cared more about the appearance of holiness than actual connection with God, and doing forbidden things like hanging out with prostitutes and healing people on the Sabbath.  After being beaten, humiliated, whipped, crucified and stabbed, he died, was buried in a tomb with a big old rock in front of it, went to hell for a few days, then rose again and did some more preaching before ascending to heaven to sit at the right hand of God.

Here are some of the things from the Easter story that stick with me more than ever as a permanently sick person:

1) Jesus knows what I am going through

As noted above, the idea that Jesus became fully human means that he experienced hope, despair, exhaustion, frustration and disappointment just as I do.  He also experienced fear, and a desire to not have to go through with more pain and suffering.  In the garden at Gethsemane, when he was praying prior to his arrest, he begged the Lord to “take this cup away from me.”  I know exactly what it is like to ask that question.  I don’t know what is coming in my future as clearly as Jesus did, but I know that there is likely to be more bad stuff.  Jesus has felt that and asked for it to be taken from him.  There’s no shame in me doing it.

He also experienced unimaginable agony.  Endometriosis has sometimes made me feel like there is a monster tearing my uterus apart from the inside, but I’ve never been whipped, starved (except for colonoscopies, but that is different), refused any liquid but vinegar, and hung on a cross for hours, which historians tell us is a truly horrific way to die.  Jesus knew pain.  He knew how it feels like it will never end, like you can’t go on, like there is nothing but that pain.  He understands intimately how I feel when my pain is bad.

2) Jesus didn’t get better either

Ok, I know that sounds weird, but hear me out.  Sure, Jesus may not have had a chronic illness, but from the moment his trial began and the pain started, there was no respite.  He did not get a break from pain and privation.  His pain ended only with his death (and then he went to hell, so he probably got a whole new kind of pain there).

Now, that may sound really bleak, but it is a lot less frustrating and a lot more realistic to me than people saying, “This too will pass.”  The whole point of chronic pain is that it doesn’t pass.  Sometimes, we just endure it until we die. However, when it doesn’t we sometimes feel as if we are doing something wrong, or worse, get treated as if we are.  I’ve written before about how Christians will sometimes treat other Christians as if their ongoing illness is somehow evidence of sin.  But there was no relief for Jesus, the man who never sinned, so I’m not doing something wrong by failing to be healed.

In this lifetime, it didn’t pass for Jesus, and it may not pass for me.  But, that’s ok, because…

3) It does get better after that

This is probably where I’m losing the non-religious folks, because I can understand how anything “after death” can sound a bit wacky to people who believe you die and that’s it.  The big promise of Easter, though, is that we don’t die and that’s it.  We die and are reborn in heaven.  We don’t suffer any more.  We experience such incredible joy that it is as if we have never suffered.  I used this CS Lewis quote in my last article, but I’m going to use it again here because it sums it up so well:

That is what mortals misunderstand. They say of some temporal suffering, “No future bliss can make up for it,” not knowing that Heaven, once attained, will work backwards and turn even that agony into a glory. ..And that is why, at the end of all things, when the sun rises here…the Blessed will say “We have never lived anywhere except in Heaven.

Because of Jesus, my place in heaven is guaranteed and I will one day have healing that will make my pain-free days on earth look like poo.  I will be healthy again.  I will know peace and energy and absolute, perfect love.

4) I’m worthy as I am

Jesus wasn’t crucified alone.  Two actual criminals – thieves – were hung on either side of him.  One of them turned to Jesus and said, “remember me when you come into your kingdom.”  Jesus replied, “Today you will be with me in paradise.”

Now, I’m no angel, but I don’t steal things.  I’ve never been convicted of a crime.  I’m not an adulterer.  Jesus forgave people who were.  He will and constantly does forgive me.

I’m being a little long-winded about this, but bear with me.  In this world, we have to do a lot of things to be accepted – to be viewed as worthy.  The chronically ill are often told that they aren’t good enough, or aren’t trying hard enough.  Spiritually, though, none of us are – all have sinned and fallen short of the glory of God, after all – but Jesus doesn’t care.  He loves me and thinks I am just as worthy as any more able-bodied person.  His forgiveness grants me a place in heaven regardless of whether I meet society’s standards of what constitutes worthy or not.

 

Do any of my Christian readers have a different take on the Easter story, or get a different kind of comfort from it?  For all my readers – join me in being so damn grateful for a four-day weekend, plus ANZAC Day later this week!  I loved stacked public holidays.

More Quotable Quotes

A while ago I did a post on 10 quotes that really summed up some of the experiences we have with endometriosis/chronic illness.  Recently, a lot of similar quotes have been popping up in my Pinterest feed, so I thought this might be a good time to do another one of those posts.

1)  “When I finally find a pain-free position…but then I have to pee.”  

All the damn time!

The quote is superimposed on an image of James Van Der Beek ugly-crying.

This one doesn’t really need an explanation, but boy, is it true (and frustrating).

2)  “Fake it til you make it doesn’t work with chronic illness”

MS, Fibro, Lupus, and the list goes on and on.... Chronic Debilitating Painful Illnesses

Image is a tumblr post by thatchronicfeeling.  It reads:

“‘Fake it till you make it’ dosen’t work with chronic illness.

Instead, the options are:

‘Fake it till you are so ill you can’t get out of bed’

‘Fake it till you have a flare’

‘Fake it till you have a flare, continue to fake it till you’re hospitalised’

OR

‘Accept that you have one or more chronic illnesses, adapt accordingly and look after yourself.'”  

I suspect most of us are guilty of trying to fake it til we make it far too many times, largely because there are enormous societal and economic pressures to do so, even though we know it doesn’t work and isn’t conducive to long-term health.

3) The Most Annoying Thing

Indeed, I still try though. Now and then, PIZZA!!!

Image reads: “The thing that kills me about chronic illness is that you can do everything right and still be sick.  You can be on the best medications, eat the best food, exercise seven days a week, sleep eight hours every night, and still be sick.  You can follow every rule, do everything your [sic] supposed to, and still be sick.”

You’re telling me.  I flew halfway around the planet to get the best surgery currently available only to discover I have another underlying condition that the surgery can’t treat.  I sleep ten or twelve hours some days and I’m still fatigued beyond enduring.

On the other hand, I did go to my Bangladeshi friend’s house the other night and eat all the high-FODMAP food, but honestly, if you could taste her mum’s dahl, you’d eat it if it killed you.

4) Of Mice and Men

Quote, 'Of Mice and Men'

Image is a quote from Of Mice and Men: “It’s just a constant battle: me against my body; my passions and my dreams and what I want to do with my life, against what I’m physically able to do.”

This really hits home.  As I write I’m supposed to be at beautiful Pearl Beach catching up with a dear friend whom I don’t see nearly enough.  Instead, I’m at home in my pjs because I couldn’t handle the journey.

5) I want to be enough

Chronically ill person

Image reads: As a chronically ill person, I don’t want to be told I can do anything if I put my mind to it.  I want to know that what I can do is enough.”

Absolutely.  It doesn’t matter how determined I am to be a prima ballerina when I can barely make it to the gym twice a week through fatigue and pain.  Rather than being told “you can do anything!”, which kind of rubs it in our faces that we can’t, tell us that we are doing really well as we are (because we are).  

6) Surprise!

Funny because it’s true

Meme of a cat face on a background partitioned into six shades of blue.  Texts reads:

“Me: so what are we going to do with my life?

Body: It’s a surprise!”

It sure it, body.  It sure is.

7)  Waste of spoons

Said every person who is chronically ill.

Image reads: Why waste spoons on shaving your legs?

I’ve had many a day in between laser sessions where I have thrown out my skirt or dress plans in favour of trousers because shaving requires far, far too many spoons.

If you can’t bear the sensation of leg hair want to know more about removal options, have a squiz at this post where I evaluate the pros and cons of a few different choices.

8) Competing Desires

yes

Image reads: I am a person who wants to do a lot of things trapped in a body of a person who wants to sleep a lot.

Never a truer word was said.

9) A Fully Functioning Body

Image result for funny chronic illness memes

Image is a tumblr post by thefairiegirl.  It is a picture of a shocked lego-person in glasses with the text:

“When I see someone with a fully functioning body:”

and the lego person says, “I’ve always wanted one of those.”

Wouldn’t it be nice?

10) Fatigue

"You don't know what fatigue is until you've had to rest after taking a shower." Life with chronic illness. Fibromyalgia, Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, Lyme Disease.

Image is from someecards.  A vintage image of a lady in a bathtub on a blue background, with text that reads: “You don’t know what fatigue is until you’ve had to rest after taking a shower.”

I mostly take baths now for that exact reason, and I still have to rest afterwards.

What quote resonates with you the most?

If you enjoyed this post and want to see more of these quotes, follow me at https://www.pinterest.com.au/bubblesinthebrain/ and look for my Endometriosis board.

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: 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.

Fighting Fatigue

Sometimes I think the single worst enemy of the chronically ill, aside from the actual illness, is fatigue.  It’s pervasive.  It’s debilitating.  It lingers, and it won’t go.  It lowers your immune system, makes you more susceptible to pain, slows your thought process and just makes it nigh-on impossible to exist like a normal human being.  

It’s particularly bad when you start your week exhausted.  Those who read my last post will know that I was up until around 4am on Sunday night (well, Monday morning by that time) accidentally tripping my face off on tramadol.  Do not recommend.  The net result, for a girl whose alarm goes off shortly after 6am, was very little sleep.  I went in late to work so I could catch up on some extra rest (and wait for the horrific weakness and shaking to pass), but it wasn’t enough.  

The other thing about fatigue is that it is cumulative.  Each day of legal work, no matter how exciting, is tiring.  Your brain is doing a million things, you never have enough time to finish all the things you’d like to, and if you work in litigation, you are probably on the go between courtrooms, offices and the local corner shop for chocolate several times a day.  My spoons, never high at the best of time, were seriously depleted by Sunday night; each day took away a little more.  On Friday, I had literally none left.  I woke up so exhausted I could barely move.  The toilet door, all of two feet from my bed, seemed like a million miles.  Moving my arms to my phone to email work took everything I had.

This may seem like a lazy millennial exaggeration (not a stereotype I appreciate, by the way).  “Ugh, I’m soooo tired.”  Other spoonies know.  It’s exhaustion beyond the point of comprehension.  Literally, I was so tired I couldn’t understand it.  You feel pressed down by a physical weight.  It’s not like you’re underwater, it’s like you’re under mud.  Thick, quagmire, sucking-you-down type mud.  

Of course, because I was tired, I had no reserves to deal with the post-op pain.  Whether it was objectively worse than usual or I simply felt it to be worse, I’m not sure (although it felt pretty bad).  I also had a blocked nose, with a headache and sinus pain and a croaky throat.  Thankfully they have mostly passed.  I was convinced I was getting another interminable cold.  In any case, there was only one possible solution for this kind of exhaustion – to go back to sleep.

That’s the big problem with trying to fight fatigue.  You might be able to stave off the sleep debt for a few days, snatching extra hours where you can and chugging caffeinated beverages where you can’t.  Ultimately, though, it will always build to the point where it becomes so big a monster that you can’t fight it off any more and it simply overwhelms you.  I’m disappointed it got me on Friday, and that I couldn’t hold out one more day, but that’s the reality of chronic illness – you can’t always go the distance and you always have to pay the price for trying to.