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.

Self Care 2019 v. 1.0

I’ve done so many of these that at this point I feel that they should be numbered!

As mentioned, my anxiety is giving me issues. My PCP doesn’t appear receptive to the idea that I know it’s anxiety not depression. Yes, we are considering switching doctors.


But there is major snow with more on the way, the hus-creature is about to be in Seattle for a week, I have concerns about my ongoing prescriptions, and therefore it’s a total PITA to switch right now.


So, I’m trying good old-fashioned ways of dealing for now.

I’ve been going back to the nail salon every two weeks. It’s helping – my nails look pretty and I don’t feel the temptation to gnaw on them quite as much.


I still do – but only once they snag or break. Sadly, with current weather, this happens quite often.


And I got my hair did on Saturday.

This is involved, intricate, and takes roughly five hours.


Which is why it only happens once every four months!


So the “before” shot:

I hate pastels. So having had them attached to my head for the preceding month has been nothing short of torture. So I needed to see them die.

Now, this time my very talented stylist

Samantha Vallery – she works at Hair By Christine in Somerville

didn’t feel the need to bleach everything – and I bow to her expertise. She is the lady who cuts and colours hair professionally after all. If you aren’t going to listen to your damn stylist then why are you there?

Which left this very interesting “in progress” shot:

That dark line just below the pink? That is not a shadow oh no. What that bastarding thing is, is a tidemark of permanent brown dye. That has been on my head since just before I went back to work after having had TT. Let us think about this for a second. The Tiny Tyrant is now three. Three years old. (I know, I can’t believe it either!) So that tidemark is over two years old.

I would very much like it to bugger off now. As would my Sam – she was pulling worse faces than me while doing my new colour 🤣😂 she has declared it her mission to fix it. I do not mind this at all ☺️

We think that by September, what we can’t bleach out (and this colour has outlasted many attempts to shift it) can finally, finally, be cut out. Can’t cut it too soon else I lose a lot of length – and that… just won’t happen.

Else this couldn’t:

Yes, this is my hair for the next four months. I’m in love. It’s beautiful.

Once my roots start growing through again though it’ll make me sad 🤣😂 but with the ombré built in this time, it’s at least easier for me to upkeep it.

And… no blue! I’m really embracing the pink these days.

And the self care hasn’t been limited to purely physical.

In the last month (ie January) I’ve had two bad flare ups of pain – each lasting four days.


Yes yes, I know I need to see the doctor, but see above. I’m also trying to amass data on these new and annoying bouts of pain so that when I inevitably need to see a new doctor, I can at least attempt to bypass the tedious penis-waving (not literally) that will no doubt occur. I mean, what would I know about my body and medical conditions after all right?


And the hus-creature has been worried about me bless him for – as previously documented – he’s a bloody amazing man you know.

So he went foraging. To a shop in Brighton (an 80 minute round trip) and found so many things of joy, beauty and wonder.

Ok so, I loathe Angel Delight. But the rest? Everything is now in my cupboards. I can have hot Ribena – which is my true comfort drink when I’m unwell.

Self care – it’s important y’all.

The Second week of camp(s)

So Wednesday this last week was Independence Day. And because his teacher (not unreasonably) had booked a little extra annual leave – well it’s not really annual leave when you’re not supposed to be working is it – #1 Son was only in “summer learning Academy” camp for two days this week.

Monday was fine. He had a great day and everything was brilliant. You see, they send home daily worksheets of the things that he’s been doing; and I’ve seen such an improvement in them that it reassures me that this was definitely the right thing to do for him.

However Tuesday? Tuesday was not so good. The wonderful H’s daughter did the pick up run as H herself was I think feeling under the weather due to impending dental torture and it just wasn’t a good day. The report I got back was that he had not done anything and had really gotten grumpy with the teacher. What I got out of him (and I’m actually impressed he told me) was that:

They had been learning about dolphins again and he had already learned about dolphins 10, 20, 100 days before in real school and he did not need to learn about them again.

He also claimed that he had tried to tell the teacher this and that she just hadn’t listened to him and didn’t understand him. Now I’m a tad sceptical about this as I’m fairly sure this teacher knows what she’s doing (as they seem to have a lot of experience with neuro-atypical children) but he felt that she wasn’t listening and he ran out. Of the classroom. First time he’s done that actually in a good few months. I can’t say I was impressed with the behaviour but I am impressed that he at least told me the truth. We then had a nice talk about it and I try to explain (as I have done many times before) that he’s got to learn the simple stuff before he can learn the more exciting stuff.

I also tried to explain that the teacher didn’t necessarily have a good clear indication of which children had already learned about dolphins versus which children had not as these are kids who come from across the town and across the different primary schools that may even be cross district but I doubt that actually, as it does all seem to be the Melrose schools rather than some of the others that they seem to have around here.

Not sure exactly how much of it sunk in but he cheered up a bit and we had a better day the following day. Hopefully this means a better week this week as he is back at camp Monday to Thursday this week.

Another potential issue is that his current therapist is leaving the practice where we’ve been taking him since last year sometime I forget exactly how long and is going into private practice. I panicked a bit when the hus-creature told me this because quite frankly I can’t go through the changes again. However she did say that she will continue to take our insurance so hopefully we could just knows him across when she leaves in August. I can’t I just can’t go through explaining it all the new therapist, getting him to see the new therapist, building up that report again it’s just not going to be good. So hopefully we’ll have a clear indication this week what she plans on doing about her current clients.

I mean I can’t blame her, there is so much more money in private practice, but we’ve been through this before. Still, at least this one was able to be honest with us about it and not just leave us in the lurch.

Wednesday was pretty uneventful really. I recently made a new friend – another friend who previously only lived in my computer and is now part of my real life.

We are currently educating each other on films. Apparently if you’ve never seen “The Princess Bride” you must forever be shunned in this country. So he has educated me (and to a lesser extent the hus-creature – who is normally playing video games and rolling his eyes whilst we watch films and act like children 😂) on:

  1. The Princess Bride
  2. Red Line

I have introduced him to:

  1. Labyrinth

I also have The Dark Crystal and Leon on my side of the list 😂🤣

It seems to be becoming a somewhat weekly thing, and it’s nice to have another friend who lives in-state.

The rest of the week was pretty uneventful until Saturday when #1 Son had Reading summer camp.

Which apparently went a bit better than the week before. Which is great. He’s still so bad at focussing, but he’s coming on in leaps and bounds so I’m confident he will be at the level he needs to be at come end of August.

The new principal of his school has been elected, and it is Candidate A – who has the PhD in Education Administration and the neatly trimmed beard.

While I think I personally would have preferred candidate B – who was keen and had not yet had a principal-ship I knew A would get it, and from the talks they both gave, both have a style that ought to benefit my son, so we will attend whatever “Meet And Greets” are held and go from there.

TT has been her usual happy self and there have been some wonderful days:

And me? I’ve taken my mental health in my own hands. I have been walking in the evenings. Usually a minimum of 2km a day. It started because I needed to return books to the library and it’s just slightly too far away to easily take the kids.

And then I rediscovered Pokémon Go (look it up and if you have a Smartphone go get it) and for the last week or so I have been simply “following the pokéstops”.

See, one of the benefits to living in this country is that everything is on the grid system so you can pretty much wander in a circle except it’s not really, and you will eventually find yourself back home after doing either a giant loop or maybe a lollipop/balloon shape on the map.

I mean yes, I do also have Google Maps which I use to cross check, but more often than not I simply find myself back on Main Street after about 45-60 minutes of rambling and then I just toddle home.

And the scenery is beautiful:

And I’m learning the local geography, am getting my heart rate up and am not getting bored. All bonuses really.

And catching Snorlax 🤣😂

No, really, I did – and without the stampede!

A long break?

Hello dear audience, I know I’ve been away for a very long time. I think my mental health took a little bit of a downturn. I just couldn’t face writing things down honestly and quite a lot has happened in the last… almost 2 weeks gosh.

But here I am sat in the park with the kiddos on a warm but overcast day and there is a breeze okay there is traffic but will ignore that and quite frankly I’m feeling a little bit at peace.


I also just got handed this treasure from TT and it made me smile


Well in the first case #1 Son’s birthday party happened on Saturday, the 6th of June which was almost 2 weeks ago.

We had had quite a few replies in the positive for the party but on the day of I still could not shake the feeling that he was effectively going to be stood up by his classmates. But I needn’t have worried there was so many kids there it was wonderful. TT had a whale of a time and honestly despite it costing $600 (it was all thanks to Merry Tax-mas that we could pay for it!) it was well worth it.

Yes that is Jestro and The Red Ninja from both Ninjago and Nexo Knights who guest-starred in the party room. #1 Son was ecstatic truly. TT was in the “okay I really want to play with them and I really want to hug them but I know they’re scary!” mode which was sort of hilarious 🤣😂

There was pizza and cake:

So. Much. Cake. And So. Much. Pizza. As part of the booking there were seven pizzas and lord alone knows how many cupcakes included.

All I know is, we brought 4 whole pizzas and 16 cupcakes home!!!


No we weren’t allowed to give some to the staff. We tried.


So H received two pizzas and a box of cupcakes when we returned home, as, sadly, the twins had been poorly and hadn’t been able to attend.

And the gifts. Dear lord. We have never exactly cheaped out when buying the gifts for those classmate birthday parties that he attended, but seeing the sheer generosity from the fellow parents I definitely feel more than a little bit guilty. Well, now we know more for next year.

And I didn’t have to do party bags either praise the good lord Jesus because there was a buildable mini figure for every child included in the party package. That included a Duplo figure for TT so even she was catered for which was lovely.

The next thing to happen really of note was spirit day on the Tuesday which would have made it the 9th of June. Each child had a shirt:

How to make a parent feel old in one easy step? Put the year that their child will graduate overall from high school on the back of the Kindergarten T-shirt. Yeah my son will graduate in 2030.

Welp always good to be prepared right?

So Spirit Day seemed very much an open event but I didn’t manage to get up there as TT wasn’t being cooperative. However class photos were shared 💗

My boy is, as always, clinging to an adult God love him.

He had an amazing time though, and even caught the sun a little.


Fret not dear audience he did not burn


There was also an entire school photo posted on the schools own Facebook page so I feel no compunction about half inching it and popping it up here.

Hint: my son is the one clinging to an adult on the left hand side the bottom.

And after spirit today came DPW day. This is a day to celebrate Melrose Department of Public Works. Which for the adult sounds about as exciting as it probably was except that the kids had such an amazing time.

She’s absolutely in love with that little hardhat and tries to take it with her everywhere. Unfortunately it’s really flimsy plastic so blows off with the slightest breeze so I keep trying to persuade her to keep it in the house.

Again school wanted us to go with him to chaperone but there was free ice cream and snacks there was sunshine and all manner of giant heavy duty vehicles for the kids to climb on and poke, so I consider it a morning well spent.

Sadly it was too far away from the house for me to go it alone with TT so daddy had to come to and drive but we’ll had a pretty good time.

And then, it was Friday. Having chatted with his teacher at DPW day, at length, it was decided that we shouldn’t take him in for the half day on Monday because he actually handled the fifth graders leaving not very well.* And she felt (and I didn’t disagree with her) that given they already finished the formal teaching part of the year it would just add stress to have a half day. Which meant that Friday was his last day of kindergarten. I didn’t really quite know how to feel if I’m honest he’s grown so so much and then I saw this picture:

There just aren’t words to describe the sheer pride I have felt in seeing these pictures. He’s grown, he’s changed and he’s done so so well. And then to top it off his report card came home on Friday as well. Now okay he has slipped a bit in certain areas, but overall? He has excelled compared to the winter report. I’m so so proud of him.

So this update is already super long so I think I’ll leave it there and will try and catch up with this week plus last weekend as soon as I can which hopefully will be tomorrow. Having said that, he’s got his first summer Reading camp tomorrow so we will see how we go.

*We have put so much effort into explaining to him about the transition to 1st grade, the change in class, the change in teacher etc, but we completely forgot that he had a lot of friends in the fifth grade who are moving up to the middle school in September. He was devastated on the Friday.