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.