Hormones and Hiatuses

Hello my lovely loves,

It seems each time I write it’s always with a mention at the beginning of a post, talking about how long it’s been.

At first the reason I didn’t post as much was good. Over the last few years my levels had been improving so I was able to do slightly more. 

It was getting to the point where I could start trying to push a little further in my life, or write about it, but not both. 

So I figured I would focus on doing more and wait for the day when I could do both comfortably to really start to get into blogging again, occasionally checking in and talking about things as and when they occurred to me, but not with the frequency I’d tried to have in the past.

Those of you who have checked out my illustration accounts may have noticed an uptick on that content appear, even as the Super Pooped posts decreased.

Unfortunately, while this was happening, I started to notice an increase in other, odder symptoms. 

I had noticed my menstrual cycle had shifted slightly several years ago, but as I’d attempted (and failed, with much vomiting) to try and control my difficult periods with a contraceptive pill, I assumed that it was left over from that.

I started noticing melasma (darker skin patches, commonly associated with pregnancy) on my face, and, again, assumed it was because of the shot of hormones I’d had during my brief tussle with The Pill That Did Not Agree With Me.

However, my menstrual cycle got more and more erratic and by the beginning of 2022 I was starting to get concerned. I was also starting to notice an increase in brain fog and hot flushes. These are things I get from ME/CFS anyway but, given how much better I was feeling in other ways, it was odd. 

And then… my nails were starting to flake and break really, really easily, and my skin texture seemed… different. My skin’s never been great but even my healing rate seemed slower.

Those in the know may realise that these are all common symptoms in peri-menopause. I think a well-meaning someone even suggested it online.

Given that I was slowly realising this had all started around the age of 32 I was extremely resistant to this idea, particularly as I’d always wanted children.

I was frightened, but after I didn’t have a period for three months at the start of 2023 I knew I had to go to the doctor. We did tests, and, sure enough, it appeared I was entering peri-menopause.

I can’t describe to you the sick, swooping feeling after those results. The doctor explained that I likely had Premature Ovarian Insufficiency (POI) and immediately asked about whether I wanted children, because we would need to discuss potential fertility options.

Look, I’m ill. So ill I’m housebound - I’ve known for a long time that not being able to have children was a distinct possibility. But there’s something very different about knowing it’s unlikely, and knowing that your fertility may be going far, far sooner than you expected.

I’ve talked about choice a lot on this blog. Being able to choose something MATTERS.

Choosing not to have children because you feel your circumstances mean you can’t be the parent you want to be is tough. Really frikin tough. There’s a chance circumstances may change, but it’s small enough that you have to learn to live with it. 

But having the choice potentially taken away from you altogether? 

Ouch. Just… ouch.

My Mum, knowing how much I’d always wanted children, was immediately on board with the idea of egg harvesting, but I still had that sick, sinking feeling.

I know plenty of ME/CFS sufferers who have kids; a fair amount of whom decide to have kids after they get sick, but I knew my situation was not the same.

It not impossible for those in peri-menopause or with POI to conceive, although it is lessened, but I’m single, and single parenting is NOT for the faint of heart. I’d considered it as a potential option before I got sick, in case I didn’t find anyone I wanted to raise a child with, but now?

I’m housebound, and I require daily care to help keep MYSELF fed, clean, and safe.

I’m an only child, so if even if I managed to get to the point when there was a living, breathing person I was responsible for, if I got worse and was unable to take care of them, their care options would be limited.

My parents would climb over broken glass for me, but they are older and have their own health problems. I see how tired they get just looking after me and I’m not willing to put that on them.

As things stood? And currently stand? I am incapable.

And I love my non-existent child too much to put them at that level of risk. 

There is also the side effects of egg-harvesting.

Did you know that you have to go through the same hormone injections as regular IVF to get your eggs harvested? They can be absolute hell on a healthy body, and on mine?

There was every chance that attempting to have it done would just push my health further back from being able to look after another human.

And that’s on top of the hormones I have to take for my own health, in order to lessen the chances of things like Osteoporosis, which, as someone who’s housebound, I already have a higher risk of.

Currently, in circumstances of premature peri-menopause the NHS doesn’t offer egg-harvesting. It would need to be done privately, so I would have to pay not only for the injections, and the procedure, but also the storage of the eggs for an unspecified amount of time, which presumably would be years.

By the way, I’ve never gone into specifics of how much it costs to be disabled but it’s A Lot.

In the end, egg harvesting mostly felt like an extremely risky and expensive way of avoiding my feelings, so I did what I do best. Took a deep breath and faced the fucker head on.

And it was really fucking hard. Thanks to the whole universe for my amazing parents, my awesome friends and my incredible therapists, because my god, that was gruelling. I was basically a snot monster for several months.

I’m not going to pretend that it doesn’t still hurt sometimes, that I wouldn’t change things if I had the option, but over time I slowly came to accept that just because it was increasingly unlikely I’m going to find happiness in this specific way, doesn’t mean I can’t find happiness in other, just as fulfilling ways.

It allowed me to look at parenting with a more balanced eye in the end, too. As a society we very much tout motherhood as the ultimate calling, and a pure and magical state of being, but it’s gritty and emotional and difficult. 

I have several friends who have told me absolute horror stories of childbirth and parenthood, and just how hard it is. And that’s something I needed to hear. Because an honest reality is much easier to give up than a perfect dream.

If my health improves to the point I can date again, maybe I’ll meet someone with children already, or I could adopt or foster. 

Or maybe I’ll be the batty, overly dramatic aunt who wanders around in couture while the locals discuss the chances of her being a witch. (High.)

Having a child does not guarantee a happy life, just as being childless doesn’t guarantee misery.

I can be happy. I’m good at that.

Now… this is normally the point in the post where, after putting you lot through the ringer and ending on a more positive note, I would sign off, but lucky, lucky you… the story isn’t over yet.

Now, I mentioned that I need to be on hormones for the foreseeable, which necessitated a trip to the Gynaecologist and her team (who were lovely, and after seeing how much it had taken out of me to actually get to the hospital will now do appointments online as much as possible).

I researched POI and peri-menopause after the blood test with my GP. I obviously have a basic knowledge of menstrual cycles and their accompanying hormones but this was a whole new level. And you don’t know what you don’t know.

I fully recommend The Complete Guide to POI and Early Menopause by Dr Hannah Short and Dr Mandy Leonhardt for anyone who is interested in this topic. 

When they say complete, they are not kidding; how it works, symptoms, other potential causes, tests, treatments, their side effects and risks, dealing with grief, patient anecdotes, EVERYTHING.

It made me realise just how prevalent it is, and that for many people it happens at a far younger age than it did for me.

As someone who still has their uterus, I need to have both Oestrogen and Progesterone, so I started a cycle of HRT patches about a year ago. And let me tell you, when I started sticking those to my arse, I felt like the world’s shittest My Little Pony.

I’ve kind of got used to them now, but I still think I’d feel a lot better about the whole thing if they were little stars or hearts or something.

There were some strange side effects those first months; dizziness, jaw pain, heavy periods, sluggishness, but by far the worst was the brain fog. I’m fairly used to brain fog, but this had a different flavour somehow.

I could feel there was energy underneath the fog and apathy, but I just couldn’t get to it.

All HRT therapies have some level of settling time, but this wasn’t shifting, so after a few months I did a bit more research and looked at my old hormone tests again and wondered if I needed more testosterone. I’ve always had a high testosterone level, and my current level, while in normal range, is less than a third of that in a test from before I got sick.

Early this year the Nurse Practitioner at my surgery (who has a special interest in POI) suggested we try extra Oestrogen as a first option, as she’s not able to prescribe testosterone and it can commonly help younger patients with the same brain fog issues as me, so I figured I’d try it.

Big. Mistake.

Within one week I was bedbound and my energy levels had dropped to what they were about 4 years previously. I had previously had a drop for about two weeks during the combo patch settling in period, so I decided to tough it out and wait.

I spent a whole month waiting for the exhaustion to decrease. It’s very, very scary for an ME/CFS sufferer to have an extended energy drop. It reminds you of the most difficult periods of your life, and even if I knew the reason for it, hanging on during that month was incredibly difficult.

After speaking to my ME/CFS Nurse she suggested cutting the extra patch in half and seeing what affect that might have. 

My energy levels immediately went to what they were about 2-3 years ago, but after two more weeks with no further improvements I just couldn’t take it any more. 

It was clear the extra Oestrogen was causing more problems than fixes, so I spoke to the Nurse Practitioner again and she confirmed I should stop the extra patch.

That was early May and I spent the next four months recovering. My memory is always badly compromised when I crash so honestly, most of this year is just a blur. 

It’s only in the last month I’ve started to feel like myself again. 

I would mention, if you’re going through POI or similar, then I’m not saying to avoid HRT. It’s important to protect your body’s future health and make sure you’re getting everything you need to function. What I am saying is take it slow, especially if you’re also an ME/CFS sufferer.

The jump between the combo patch Oestrogen levels and the extra one was an added 50%. I now know that’s waaaaay too much.

Slow and steady.

I’m still waiting to get the gynae appointment to try upping my testosterone (you have to wait for things to level out before adding a new thing into the mix anyway) but I will ask to try the smallest smidgen to start.

So the last two years have been… A Lot. One year of emotional upheaval, and one of physical. I’m still trying to get a proper handle on things, but now I’m finally able to start processing that time. And I guess that leads me here, to you.

Hello. 

H

A Very Merry Sickmas

Hello my lovely loves,

As seems to be my pattern in more recent years (since the pandemic started really), it’s been a while.

But I wanted to talk about this year’s Sickmas (or, for the uninitiated, the anniversary of when I got sick).

This year it will be ten years since I got sick. On the 1st November 2012 a happy-go-lucky (if very overworked) 26 year old woke up and could barely move, and she’s spent the last ten years clawing back whatever little bit of health and life she could.

And that’s sad. But… it also makes her kind of a badass.

Because it has been clawing. Digging my nails in and hauling myself every teeny tiny millimetre towards a better life. 

And it’s not perfect, I’m still sick. I’m still housebound. But I’m moving in the right direction.

Part of the reason I’ve not been writing so much is because I’ve had enough energy to do more. Even some illustration work; something at one point seemed insurmountable.

And, yeah, sometimes I’m so tired I huddle up and become very small, and cry and mourn, because of course I do.

But I keep going.

I could not have done it without my incredible parents, and amazing friends, my kind counsellors, and supportive health professionals. 

But I also couldn’t have done it without me.

I did that. For ten years. Through unimaginable exhaustion, and pain and frustration, I made things better. And I’m still not done. 

So on the 1st November I’m wearing a party hat, and eating some cake. Because I deserve it.

(And if you’ve been keeping on keeping on, then you do too.)

H

The Party or What it takes to get outta here

Hello my lovely loves!

This ME Awareness Week I've got a little surprise for you. Part of the reason I've been quiet on my blog over the last couple of years is the extra effort and care I've been putting into improving my health. 

It's slow and frustrating and sometimes makes me want to scream, but... over time I've really started to see the benefits. Perhaps not ones that would seem a great deal to an outsider, but progress nevertheless.

Three weeks ago my parents had an afternoon tea for their 25th Anniversary (although technically 27th now, ta, Covid) and I've been working really hard in order to make an appearance.

And I'm so, so proud I made it. I couldn't stop smiling all day, even once I'd started to feel awful.

I'm currently about 3 weeks afterwards and the Payback is lifting, but I'm still not quite back to how I was pre-party. Still, that's blooming' good going for an ME sufferer! (Also payback is made much more bearable with ridiculous amounts of leftover cake. Shocker.)

I took the opportunity to make a video showing what goes into making it to an event like this, even for such a short time. If you're a sufferer yourself then feel free to filch any ideas I used to make it happen.

Before I link it, there are two things I forgot to mention in the video:

1. We chose the time I'd arrive at the party very carefully. Too late and I'd already be past my best for the day, and too early and people would be doing their hellos which is very tiring to be involved in. People arrived at half 2 to begin tea at 3, so Tom set off at 3 to pick me up.

2. I mentioned taking snacks because, even with having eaten before leaving and during the party, there was always a chance my blood sugar would suddenly drop. 

While getting used to short trips I've overdone it in the car before and become stuck in the carpark outside our house while Mum ferried in biscuits from the house. Now we always take some as a preventative measure.

Special thanks to Tom, who chopped a chunk out of his afternoon tea experience to come pick me up and drop me off again. I couldn't have done it without you! (I did say thanks on the day, but it bears repeating.)

Mum's on the left and that's my aunt on the right. 

We have the same nose.

Being "Vulnerable"

Hello my lovely loves,

Surprise! I’m still here. 

As you may have noticed, I haven’t been updating as I used to on Super Pooped, but, given the circumstances that everyone’s found themselves in, I wasn’t sure there was anything I could say that hasn’t already been said.

I’m quite certain whatever I write will have been said, and probably better than I could say it, but at this point, I feel as if I have to use my own words before I can write anything else.

So much is happening in the world, even outside of Covid. When so many people are yelling into the void I wasn’t sure that one voice would be noticed. But maybe it’s not about being noticed, or listened to, or understood. Maybe it’s just about saying it.

With the constant onslaught of lockdowns, and jabs and shielding I haven’t felt able to talk as much as I used to. 

To be perfectly honest, with the persistent repetition of “it’s only the old, sick or disabled that are at risk” I wasn’t sure I wanted to.

That’s a phrase I’ve heard over and over and could quite happily never hear again. I’m sure everyone else who falls into those groups feels similarly. Because every time I hear it it’s a reminder than a worrying number of people would think of my death or the death of people like me as understandable. Acceptable. A foregone conclusion.

Having underlying health conditions seems to have been conflated with “going to die anyway”, and it’s infuriating.

We’re all going to die someday, mate. And technically myopia is an underlying health condition. But if you heard someone say that it’s not surprising someone had died of Covid because they had pretty chunky glasses you’d, quite rightly, think they were both ridiculous and a complete arsehole.

Watch out, Edna. They're gunning for you.

I’m sure plenty of people wouldn’t understand why it’s so upsetting, but all I can think of it how different it would sound if the phrase was “it’s only women who are actually dying of Covid” or “it’s encouraging that it’s only children who are the most effected.”

When someone says “it’s only the vulnerable”, I hear “and they don’t matter anyway”. That my continued life is worth less as a result of circumstances outside of my control, and therefore that I am not worth protecting. I’m not useful, so I am useless.

In the immortal words of The Muppet Christmas Carol, “if they are going to die they had better do it, and decrease the surplus population.”

Given the backlash against masks, restrictions and vaccinations, not to mention the DNR orders suddenly appearing on disabled people’s information during the pandemic, it’s not as if the words don’t have corresponding actions.

Two of the main reasons I write this blog is to help people with ME try and manage it and to help people without it understand what life with my condition (or any disability) is like. To spread knowledge and understanding.

At the beginning of the pandemic I tried to take some time to put myself into the shoes of those who’d never been stuck at home before and offer help and guidance to get through it, even if it was never used. Because, despite being frustrated that so many had never noticed that lockdown is a thing that some people have to deal with everyday, yes, it’s horrible, so of course, I wanted to help.

But “it’s only.” More or less every day, for two years.

With that phrase swirling around in my head it’s been a while since I felt capable of my usual level of compassion for those not effected by illness, age or disability (with notable exceptions, of course). 

So, even though I know the vast majority of people who read my blog are lovely people who don’t agree with this nonsense, I haven’t really wanted to write things attempting to make those who might well think my life worth less feel better.

And to the group of people who are ill, what could I possibly say to them that wouldn’t sound like meaningless platitudes?

Don’t listen? They don’t mean it? Try not to think about it? 

What could I possibly say?

I also feel strangely guilty complaining about it. After all, in a lot of ways I am incredibly privileged. As a white cis heterosexual woman, becoming disabled has been my first foray into people thinking my life is worth less, at least openly and publicly. So many people have it worse than I do.

Misogyny is obviously a real threat, but no one has ever directly told me they think of me as less than, even if some do treat you as a surprisingly chatty piece of garden furniture.

And somehow it’s easier to deal with - maybe because it’s always been there? Or there are so many people in the same boat?

Or maybe it’s because, despite my experiences of ableism, phrases that are essentially three-eugenic-thoughts-in-a-raincoat are coming from people that I never would’ve expected.

I can discount what racists and homophobes and misogynists and transphobes say, because I can’t respect people who think of others as less than because of such things. It’s hurtful, but not unexpected. But when those sentiments seem to be coming from every part of the political spectrum? From people you would otherwise have thought of as kind? Then it’s a whole lot harder.

Over time the original message has been added to the rallying cry of “we can’t do this forever”, as a means of offering explanation why the non-vulnerable majority should no longer have to be careful on behalf of the vulnerable. 

News articles and clips of people, many in positions of power advising the public, accepting a certain group as a reasonable sacrifice in an attempt to return to “normality” does seem particularly cold and calculating.

The head of the CDC recently said it was “encouraging” that 75% of fully vaccinated people that died of covid had underlying conditions.

The points at which intersectionality comes into play must be truly horrifying to withstand.

Putting ethics aside for a moment, the whole situation still seems bizarre, because anybody can become disabled or sick at any time. And... everyone gets older.

No one seems to realise when they say these things that now or in the future they’re signing themselves up for pain, hardship and a state of disposability.

A huge group of people just gained long term conditions as a result of Covid themselves. Do they or their loved ones not realise that they now fall into that group?

Even if you’re not already, at some point you will be vulnerable, and then you will be just as disposable as I am.

Disability has a knack of bringing you face to face with your own mortality regardless of any other influence or situation in your life, and that makes threats to your wellbeing real and possible in a way that seems to be entirely absent in a massive chunk of the populace.

I’ve watched friends and acquaintances post their adventures and hoped against hope that they share at least some small inkling of that knowledge to keep them safe, whilst also wishing that they never had to.

I’m very aware of Covid, and that, even if it didn’t kill me, I risk a potentially disastrous comorbidity in the form of Long Covid, or the loss of years of progress in my ME recovery that could very well leave me back where I started nearly a decade ago. 

I like to imagine I’d have to strength to do it all over again, but I’m honestly not sure.

And if I didn’t, then at least it’d only be another one of the vulnerable missing, eh?

H

Ageing and Appearances

Hello again my lovely loves,

It’s been a little while since I posted, but recently it’s been really hard to find motivation. I’ve been keeping my head down and trying to get through everything that’s been thrown at us; as a species, as Spoonies, and in my little family.

It’s been A Time.

But today I wanted to talk about something that’s been bothering me for a while, that I always thought people might find a bit silly or vain or ungrateful. But I think the pandemic has strangely put people in a place where they’re much more likely to understand.

And that’s my complicated feelings about ageing.

I never really thought I’d be someone who cared about it, or had time to think about it, but as I’ve found myself in circumstances that I never foresaw, I’ve been thinking in ways I wasn’t expecting.

There’s a large part of me that is grateful I’m here to be ageing. A lot of people never have that privilege, and my experiences with illness have only made that more clear to me.

But there still exists a part of me that hates it. And it’s not necessarily because of vanity or because I think my worth is based on my youth or appearance (although that’s a fun mindset to try and fight after years of societal conditioning), but for the simple reason I haven’t been living in the way I thought I would.

I hate seeing fine lines appearing, and grey hairs crop up, for the simple reason that I feel like I haven’t had the chance to earn them.

There’s a whole chunk of my twenties and thirties that I’ve mostly been absent from. I have the souvenirs but none of the memories that should go with them. I didn’t earn these creases living my life, I got them waiting to be well enough to have one.

Yes, things have improved slightly; I’m able to do a tiny bit more than I was two years ago, a year ago, six months ago. But they’re so tiny in the grand scheme of things that the difference is negligible from the outside.

And as proud as I am of myself for dealing with all of this so well, that’s still all time that I feel I’ve missed out on, and the frown lines just make it more obvious to me that I’ve had a lot to frown about.

It doesn’t help that I’ve always felt quite awkward in my own skin, but before I got sick I had just started feeling like I was coming into my own. 

I know a lot of people struggle with their appearance and body image, no matter how others perceive them, but I was getting there, you know? I was finally feeling comfortable with what I saw in the mirror. And then along came the Big Bad Tired so I couldn’t even enjoy it.

Being sick has also meant care in my appearance has taken a hit by necessity. 

I can’t shower everyday (or at all), I have to plan my wardrobe around what’s comfortable to nap in instead of what makes me feel good, I can’t style my hair how I want to (or basically at all), I can’t sit down everyday and take that fifteen calming minutes to do my makeup. I do makeup a few times a year now, and I miss it more than I ever thought I could.

It might seem bizarre to some people that I’m so bothered by it, but to me it was an essential part of self care that made me feel confident and put together and ready to face the world. 

I want so much to have that confidence back, and seeing the signs of time passing makes me frightened that I won’t. Or by the time I do I’ll be too old to go out and fully enjoy it.

This illness has shown me that however negative I felt about myself or my appearance before I got sick, I was wrong.

I shone because I was happy and healthy. Because I was full of life. And when you have something that makes you feel dimmed by comparison, it's a strange grief. Anything that compounds that is more painful that it would otherwise be.

Now everyone’s been in and out of lockdown for nearly a year, dealing with things that make them just ever so slightly more aware of their own mortality, and there’s this hole of wibbly-wobbly-timey-wime where people missed out on so much.

Even then other people have been able to keep living in small ways; working, creating, and honestly I think more of my friends have had kids in the last year than the previous three combined. And I kind of love that, even though it stings on my own account. 

People are nothing if not resilient and, Christ, I love to see it.

But, despite being able to do more than us Spoonies, I’ve seen everyone struggle with the restrictions and it’s so, so familiar to me, that I thought maybe people would understand my feelings on this now.

Time is linear, and we all have to deal with it’s passing. But watching signs of that appear when you have no choice but to do anything but watch is horrifying. Terrifying. Heartbreaking.

And I just needed to say that.

H