The realities of chronic illness

I have endometriosis. It is a chronic, mostly invisible, illness.

This is permanent. There is no cure. There’s nothing I can do to be “better”. It’s never going to go away.

And it’s exhausting. It’s debilitating. And it’s fucking frustrating.

We were going to go to the beach today. Except that I woke up in flare up hell so we’ve had to cancel/postpone.


The worst part of this is that I knew it was coming yesterday but I pretended it wasn’t because I believed that I could control my body through sheer force of will. Guess what? I can’t.


Fortunately we hadn’t told the kids the plan, so they AREN’T disappointed but I am. I’m just devastated.

This is actually the very first time I’ve had to cancel big plans for the kids due to pain (which is pretty bloody good I guess) and it’s had me in floods of tears today.

I’m so so SICK of being sick.

I’ve done everything I could, I’ve opted for surgery that was no goddamn cake walk, and one that has left me unable to have more children of my own should I want them.


Don’t mistake me, I’m grateful to have my babies, but the choice was denied to me. And even now, when I am at peace with the decision, sometimes that pisses me off.


And what is left to me? Nothing.  There’s nothing that anyone can feasibly offer me, because I’ve done the two things that non specialist medicals claim should cure it:

1. Have a baby

Welp, let’s unpack and examine that one further shall we? My condition was only discovered after #1 Son was born.  So, guess what?

HAVING A BABY DOES NOT CURE ENDOMETRIOSIS

I’m going to say that one more time for the people at the back there in the ‘Medical Community’

HAVING A BABY DOES NOT CURE ENDOMETRIOSIS

Or, if it somehow improved it in any noticeable way, I bloody dread to think how utterly, utterly screwed up my insides were before I conceived him.

But then along came TT, and my surgeon here who performed my hysterectomy? Isn’t even remotely surprised that I’m in flare-up 5 (well it was 4 when I saw him last month). Because, and I quote,

I saw your insides. They are a complete mess.

And that was the most recent examination of them – nobody else had actually seen them post-TT arrival.

So before I go into the prescribed treatment options, let us discuss the other ‘cure’ that the so-called medical community loves to throw out there.

2. A Hysterectomy

Please excuse me while I die of hysterical laughter.

Because, you see, considering that a very considerable sub-sect of the medical profession considers this procedure to be the Holy Grail for us Endo Warriors, they make it practically impossible for us to achieve it.

First, there’s the age-old

What if you want more children

Well now Doctor Smart Ass, if you have looked at my goddamn charts you will have seen that the two I do have are literal unexplained medical miracles.

I have replaced myself and my husband, so I’ve fulfilled any kind of biological imperative that there is in the assumed social contract.

Three, if I ever seriously do take that particular blow to the head, then hell there is always adoption.

Four, yes you know what, when I was younger I did want three children. I’m one of three. To me that was the “correct” number. But that was before. Before I learned how bloody difficult parenting truly is, and before I learned that my chances of having one child, let alone three were slim-to-none.

So I’ve heard various iterations of that particular stream of bullshit but that’s not the worst of it. Not by a long chalk. The worst one? The one that has had me incandescent with rage? The one that has had me questioning what century I’m living in?

But what if your husband wants more children?

Or:

What if your husband leaves you?

Followed by

Then what if you meet a new man and he wants children of his own?

Firstly what the fuck? What Handmaid’s Tale level of sexist, misogynistic bullshit is this?

Am I really, truly only worth the potential contents of my uterus? In 2018 (when I had the surgery)?

Secondly? If the hus-creature did leave me right now? Today? I would have much bigger problems than the potential for no children with any hypothetical new partner.

I would be being deported. So yeah, that was so far beyond my scope of worry it’s bloody laughable.

Also, my husband? Not a huge kid person. He married me knowing _I_ wanted kids, and so agreed to have two but he would have been perfectly happy being SINK/DINK so three? Nah. That wouldn’t have been on the table. Which is fine. Men get choices here too.

So I went ahead with the surgery.

Now let’s discuss that particular set of thorny problems.

I wanted a complete hysterectomy. Everything. Out.

My attitude:

Now, it took over a year of begging and pleading to be put on the blasted waiting list when we were in the U.K. having been informed it was six months for the surgery I wanted, they kept me hanging for almost an additional year, and my operation came through for a month after we emigrated.

Now I will never, ever, criticise the NHS. It’s an amazing system, the U.K. is lucky to have it but in some ways it very much lets people down.

Those of us with chronic conditions? Both physical and mental? Yeah we slip through the cracks.

I do comfort myself with the thought that me cancelling that surgery must have allowed some other equally desperate woman to have hers sooner than she had hoped.

So I came out here, met my awesome surgeon who pretty much agreed (after reading my stack of medical records) that I needed the surgery.

But even then I had to plead for the total. He wanted to leave my cervix in at least.

I did not wish to remain a high-risk candidate for cervical cancer. However once I pointed that out he agreed.


However every single time I go to see him he does ask if we left it in there – this does not fill me with confidence


So I did it. I documented it. I had 11 months of freedom.

Now it’s back. And getting worse. And I’m not sure what is left for me to do. He has some ideas, there’s some treatments upcoming – but I’ve got no spare organs left.

There’s nothing else he can cut out. I’m not ready for a colostomy bag – and anyway he’s an OBGYN not a Gastro Doctor so if there’s more in my guts it’s going to need more referrals and arguments with insurance companies


We just got the bill for my “sick visit” last month – insurance companies don’t pay for those here. They did negotiate a lower rate but it’s still $160+


And did I mention I’m tired?

Tired of being the ill one. Tired of being the strong one. Tired of having to lean on my (amazing) husband time and again. When does he get to be the tired one? Tired of scaring/upsetting/worrying my children. Tired of hearing poor TT saying

Mommy is poorly again

Tired of missing out with #1 Son because it costs too many spoons to sit in the fucking backyard let alone take him to the goddamn playground.

I’m sick of this being my life. I want it to be hyperbole. Not reality.

And I’m scared. Scared for my daughter. Scared for any potential granddaughters.

I’m not taken seriously, the cycle is going to continue. I just pray it skips my girl.

Day One Post-Op

Well, it went as well as could be expected 🙂

It’s 3am but I can’t sleep so I thought I might as well post an update.

This is me waiting to go down to surgery. Please note the fetching hospital gown.

I was in theatre for roughly four hours – which was longer than they expected. I’ve briefly seen my surgeon (I was very out of it) and he confirmed that going through my belly was the correct thing to do – apparently there were many adhesions.

I am not shocked by this.

They didn’t initially give me a support band, and I was in a lot of pain – it’s been a long time since I cried from it, but they gave me a belly block and my band and that helps. I was then moved up to a room on the antenatal ward – all gynae-related surgeries are up here.


The irony of this is not lost on me 😂🤣


Pain free is sadly not an option. They started me off on Percocet 6 hourly but that was not doing it for me, so they’ve split it out into Oxycodone and Tylenol. I’ve just had my Tylenol so am staying awake for the next 20 min so they can do my obs then hopefully I can get some more sleep.

I’m doing better than I expected though. I’ve been up and about – briefly shuffled to the bathroom and back. They will be trying that again in a couple of hours.

I’ve been drinking so well that they’ve unhooked my IV fluids – though it’s still in my wrist. On my dominant hand. Goddamn bad veins!

I ate some dinner:

I had a nibble of the toast (too much for me) but I did eat all my raspberry ice.

I dislike saltines intensely, but my lovely night shift nurse has found me Graham crackers which are infinitely preferable. Also iced apple juice.

They are planning on removing my catheter soon!!!

Coughing hurts like a bitch and it’s amazing how much you use your abdomen.

My middle shift nurse thinks I’ll be home by Thursday. Which is good. Hopefully I will see my doctor man tomorrow and he can give more concrete information.

Mom is holding down the fort (thanks Momma!) and the hus-creature will be staying with me here and utilising hospital wi-Fi to do some work tomorrow and Wednesday.

He’s not staying with me overnight because we both feel the kidlets need to see at least one parent (and poor mom needs a break!)

She sent me a picture of #1 Son being a ninja 💕💕💕

We’ve decided not to bring the kids to visit because I’m in too much pain and the risk of them clambering over me is too high. Also, I don’t want to scare them.

I’m missing them like crazy though.

Right, now I shall attempt more sleep. I might be allowed a shower tomorrow!!!

Not to be outdone

By her brother, TT was completely hysterical and inconsolable from 1-2am

I brought her into our bed to calm down but we got poked, slapped, pinched, “hello hello mommy/daddy” and “shhhhhhhhhh”‘d at until we gave up and put her back in the cot at 2.

She settled seemingly easily (I should have been more suspicious) and we got up at the normal time and I went in to get her up.

Only to be greeted by a scene from The Exorcist 🤢

So it’s been a double bath day for both kids. But honestly you would not know she’s been sick.

This was filmed at 09:09:

Hop the bunny

I didn’t know she knew that bunnies hopped!

Whilst I am following the normal sickness bug protocols just in case, I am mostly putting it down to irritated gut from all the screaming.

She has not been happy with following the BRAT diet all day.

I also introduced her to Simon’s Cat in an attempt to save my sanity today.

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There has since been a constant litany of “more cat”, “more kitty” or “more bunny”.

It’s been a long day.

I also had an appointment with my primary care doctor at 11:15. Ostensibly for a medication review.

I’m not certain he has prescribed me anything for my professed (and finally admitted) anxiety but he has definitely given me a prescription for blood pressure medication.

Yes, I have hypertension.

Deep joy.

I have been suffering from blinding headaches off and on for over a month and finally I admitted that the hus-creature was correct to nag me about it as it could not just be put down to “late Zoladex jab”

My lovely doctor man concurred with this, and I need to return at 09:45 on Monday December 11th to see if it’s improving.

I was still waiting for over an hour to see him though….

This is not the shining example that is being touted across the pond…

I mean it’s good, at least if you have insurance, don’t get me wrong, but it’s flaws are incredibly similar to those I have experienced within the NHS.

 

Also, the pharmacy did not have the required medicaments.  They offered to send it to another pharmacy, but I needed to get home so that the hus-creature could get into work for the afternoon.  Also, it was sent as an electronic prescription so I’m not certain I trust it to be sent along, and I’m not entirely sure where any other pharmacies are locally.

 

All good fun.