Wednesday 19 October 2022

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.)


Sunday 15 May 2022

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.

Monday 24 January 2022

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?


Wednesday 24 February 2021

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.
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.


Saturday 31 October 2020

The Importance of Halloween

 Hello my lovely loves,

It’s been a while since I’ve written a post, and while this won’t be a long one, I wanted to share a few things I’ve been thinking about lately.

Someone online recently asked me how I deal with my illness anniversary, or Sickmas, because they kindly remembered it’s coming up. (It’s the 1st November for those that don’t know.)

It took me a while to respond to them, because I was doing what I do every year to cope. Working on my Halloween costume. Every year I throw myself into it, and although I’ve always done so, it’s taken on a little more importance in my life since I got sick.

It allows me the opportunity not only to be someone else for a little while, but to revel in my favourite kind of creative problem solving. I enjoy it so much, and that’s crucial.

It’s not just Halloween, but pretty much the entire end of the year from my housebound anniversary in September to New Year that I struggle. And during that period I find the little parts of those times that I’ve always loved, that I can still do, and I try to make sure they’re in my life in some small way. 
Taking those tiny little moments and polishing them until they shine. So I can take them out and look at them when I need them most.

It doesn’t entirely block out all the things I can’t do, or the sad times. I make room for those too. I think it’s important to let yourself feel those moments, because they’re real, and honest and deserve to be listened to. All of you deserves to be listened to, even the sad parts.

People say you should focus on the positives, and I do that. I try to list to myself all the things I’ve done or enjoyed in the year, and all the (achievable) goals for the next, but there has to be time for the losses as well. Anything else is just a pretty lie.

When it comes to my costume, it took so much work and planning. I knew I'd be dressing as Crowley from Good Omens last year when me and my friend Nick (who dressed as Aziraphale) discussed it first and I’ve been slowly gathering everything since then. Working on it bit by bit throughout the year.

Even after all that planning it still nearly didn’t happen because I had a run in with a ventilation needle just over a week before and had to be taken to the minor injuries unit. 

(Ventilation needles are used for wig making and are shaped like tiny fish hooks, so once it was in my finger I couldn’t get it out on my own.)
We were there less than an hour but even with ear plugs, ear defenders, an eye mask and lying prone in my wheelchair the world was just so LOUD and so BRIGHT.

I stayed in bed for days after and although I’ve been as careful as possible since then, I knew I was playing with fire to carry on despite feeling terrible.
It’s a testament to how careful I’ve been, and how far I’ve come I was able to do the photoshoot at all.

Despite all that, I was in bed by half 3 of the day of shooting. And even before that - by about 12.30 - my legs were like rubber. I've been going downstairs on my bum because they’re just not stable at the moment.

I’m not saying this to be all WOE IS ME, but to point out the realities of doing these things.
I would love to cosplay more often, but it honestly isn’t possible, at least not now. I’m never in these costumes for more than a couple of hours and going places in them would be out of the question. 

But I love doing them. And that’s incredibly important, especially now.

So even if I’m stuck in bed for days then it’s worth it for those moments when I get to see all my work come to fruition and strut around like a badass. 

Well, more like saunter vaguely like a badass, as the case may be.


Sunday 20 September 2020

Introducing Persephone

 Hello my lovely loves,

A fun one for you today - I have someone to introduce to you...

Because let's face it, if you don't dress in faux leather and do an Easy Rider parody, did you even get an electric wheelchair? Or is it a Never-ending Story III spoof? At this point, I don't even know anymore.

Thanks to Mum and David who agreed to be part of this and went ALL OUT. You can't really see it on the video but Mum has "love" and "hope" on her knuckles.

What a badass.

This took a few goes to film, and plenty of rests in between, and the thing I'm most annoyed about is that when I got tired and Mum had to take over the dual control of Seph I didn't think to record the hilarity that was her attempting to steer for the first time.

It was really important to me to have Persephone home before the 25th September because that’s basically my 6 year anniversary of being housebound, and I didn’t want to go through ANOTHER one feeling so trapped. Particularly knowing that I was so close to having a little bit more freedom. It would just be an extra slap in the face.
I actually bought Seph in January, but due to Covid halting alterations to the garden to house her, it’s taken this long to get her home.

I know this isn’t going to stop me being housebound, but it will give me the tools I need to improve that little bit more, and have that extra freedom and independence I’ve been missing so long.
Being pushed lying down with your legs raised makes you feel very vulnerable, a little bit like being wheeled through the world prepared for a hospital exam, so this will really help my confidence.

Thanks to everyone who made Persephone possible. Steve from the Kings Lynn Mobility Centre for matching me with a chair, and keeping her in storage while we got everything prepared.
Uncle John and Auntie Tina, who laid the foundations for the new shed and the paving to get her in.
The shed company for giving a bespoke door wide enough for Persephone’s magnificence.
Jim for doing the shed wiring to charge her (despite having been horribly stung by wasps the day before - mate, what were you thinking??).
People who gave money towards me getting Seph in the first place, including my Hairy Frogmother.
And of course Mum and David who have been there every step of the way, painting and laying vinyl floor and being willing to change their home to accommodate the new chair.
You’re amazing and I’m so grateful.



Wednesday 12 August 2020

The Momentary Check-In of Standby Hedgehog

Hello my lovely loves,

It's been a while since I've posted, but I wanted to let you know that I'm still here!

I do try and post once a month, but as you've probably noticed, between health problems, Covid, and various worrying things in the world I've decided to take the advice I give everyone else on this blog and just... be kind to myself.

I've needed a break from social media, and a break from deadlines (self-imposed as they might be), because right now? The world is a lot. And I can't take that on top of my dealing with my health.

If that's the case with you too, then embrace it.

Let's have a holiday.

Keep safe. And speak to you soon.