༺ A Tropical Garden: Thoughts on Invisible Illness ༻

We went out this weekend and had a lovely time at the movies, {we saw Ninjago: A Lego Movie}. We don’t get to visit the cinema much unless it’s a family friendly feature ~ would you believe we left all our babysitters behind in Australia? Haha…

As luck would have it, a parcel had arrived on my doorstep the morning before, so I got to pick a new dress to wear! I really love this one with cheerful flowers, and it went perfectly with a simple scarf and my Erstwilder Pink Lemonade brooch.

We arrived home from the shopping mall just in time for me to drive to the park that’s in our Moo Baan and snap some quick photos before the light completely disappeared. The ground was so soggy, my platforms just about sunk in the mud all the way over the top of my shoes!  (○ _ ○)

It has been raining a lot recently, they don’t call it the rainy season for nothing. I don’t mind it all. It means I can stay inside.

Admittedly, things have taken a turn for the worse regarding my health. It’s like the last of the strength I had gained on my supplements has finally depleted, and my body has checked out.

You can see it in my acne troubled skin, my extremely puffy face and body {guess who’s back, dun-da, back again – dun-da, bloating’s back – dun-da, it’s bought a friend – aching tum-my!}, and in my belly which, due to insane levels of inflammation -no joke-  looks like I’m six months pregnant most days…

Am I exaggerating?

Sadly, no…

I think I’ve been asked at least three times when my baby is due over the last few months, and the other day an older Thai lady said in rather broken English that I looked “extremely pregnant” and that I was about to have baby number four any day! Colour me mortified. I think I flushed redder than my lipstick.

There’s nothing worse than trying to explain to someone who doesn’t really speak or understand English, that no – you are not fat, or pregnant. Just really, really, really ill. Even though you are somehow standing {swaying sometimes, when it’s really bad} on your feet, not looking completely like something the cat coughed up thanks to the modern miracle of makeup and a pretty dress.

Honestly, it’s amazing what a dress does to your look. Even without the makeup, or my hair done, I’m immediately way more presentable if I wear a dress. It’s an instant glamourous transformation, though it doesn’t help you to be any less ill.  Which is an important point that I was discussing that the other day with my friend on Facebook.

It’s interesting to me how there’s this perception in society that in order to be ill, you need to LOOK ill ~ literally, you can feel like you are dying bit by bit each day, but it doesn’t count unless you LOOK like you are on death’s bed to society… Which I can only imagine is a look something like a cross between what the cat coughed up and a zombie?? I guess? *shrug*

Anyway, unless you LOOK like you are ill, CLEARLY you aren’t. Somehow. Like, somehow everything worth judging a person by is only visible on the outside…. and if you are chronically ill, clearly it should be flashing like a neon light on your forehead… And if it’s not, maybe you are just imagining it all in your mind, and you should stop being so lazy and just get up and get on with it…. Right?

Right…

Needless to say, this kind of guilt is an extra burden that is really difficult to cope with when you have a chronic illness. It’s hard enough to believe what your own body is telling you at times, let alone having to convince everyone around you that you are literally too tired to get out of bed, and no, you are not just being lazy. I think that’s why a lot of people with these invisible illnesses don’t say anything, they just keep quiet and suffer alone.

It’s too hard to explain, when we most often don’t understand it ourselves.

Wow.

That got intense.

Where was I? Oh, dresses!

Man, speaking of ~ chronic illness brain fog has set in so hard I can barely remember what day it is, let alone anything important ~ like oh, food. Or moving. Or how to English, coz bad I does it…

But pretty dresses save the day again, and help me to feel a least a tiny bit better, even on the days when I find it hard to smile. {Seriously, it’s too much effort. I’m too tired to smile…}

And if you are struggling for words to explain what you are going through; I have found that even something as simple as reading a blog or a website where other people explain what it is that they are experiencing can really help… Please don’t just leave it, and suffer with the belief that you are alone. Even if you are just on the internet, there are others out there who are facing the same things you do to some extent. See if you can find them, and maybe you won’t feel so alone with your invisible illness.

For thyroid disease sufferers: this blog has been extremely helpful for me. Endo sufferers may resonate with this lady’s journey, and there is a range of stories of many chronic illnesses on this site that I also found helpful.

And that’s one part of my story for now. Another day to get through, but we will make it.  ʚ♡ɞ

xox,

bonita

༺ ♡ ༻

Vintage Nylon Hair Scarf in Petal Pink | eBay
Floral Picnic Dress | Sisjuly
“Pink Lemonade” Brooch | Erstwilder
Tan Virginia Leather Sandal | Miss L Fire

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༺ Thoughts On Surviving Spoonie Life ༻

*Warning: this post contains discussion on physical and mental health, and may be distressing or contain triggers. Please be aware of this before proceeding.*

Sometimes I really don’t know what to say, you know? ……

It’s not like I don’t have things that I want to write about ~ it’s just that the topic seems so huge, where do I even begin?

2016. I have to go back to 2016. For a variety of reasons, it is officially the worst year of my life.

That’s saying something as I’ve had some rough years before, and there were some pretty strong contenders for that title. However, this one takes the cake, the cow, and the blue ribbon.

Usually, at the end of each year and at the start of a new one I like to recap. I’ll look at my goals, see which ones I achieved, and make new ones. I like love making lists ~ starting out with fresh ambitions and a bright new day.

But this year, I have barely crawled out in one piece, so there’s been none of that.

Maybe you’ve been wondering why I haven’t been blogging much, and maybe you haven’t; but this is my story, and I want to share it in hopes that it might help. Not just someone out there, but me too if I’m completely honest. Writing is therapeutic for me, and I’ve missed it.

So why did I just randomly stop?

It’s a long story. I hope you have a pot of tea nearby, because a cup ain’t going to cut it this time.

Two and a half years ago, when I was six months pregnant with my youngest child, I was diagnosed with Hypothyroidism ~ basically my thyroid gland is not working the way it should, it is not producing the thyroid hormones my body needs.

{Quick side note: The thyroid is part of the Endocrine system which is the collection of glands that produce hormones that regulate metabolism, growth and development, tissue function, sexual function, reproduction, sleep, and mood, among other things.

The endocrine system is made up of the pituitary gland, thyroid gland, parathyroid glands, adrenal glands, pancreas, reproductive systems. So basically, it affects everything.}

As I was pregnant, we couldn’t do much to treat it at the time, but could only support the rest of my body as much as possible. Even still, doing that, I was severely sick throughout the duration of my pregnancy. 36 weeks of all day “morning” sickness. Not fun.

Once Lottie was born, my body was not as sick and it seemed like things were going ok for a while, but at around six months postpartum when the last of the pregnancy hormones left my system, things took a tumble for the worse.

No matter what treatments I tried, what blood tests I took, nothing seemed to be helping ~ or it would help for a little while, then my body would adjust to the treatment and I’d regress. I’d loose all of my energy, and end up spending a lot of time on the couch or my bed. This continued for a year or so, and we made little progress treating my health problems.

And then a bunch of stuff fell apart outside of my health to make things worse. A lot worse.

Around about the middle of the year, 2016 spiralled into a series of stressful, horrid events which I could do nothing about.

I gave up on blogging.

I gave up on riding.

I gave up on having a strong body.

I gave up on who I was, who I could be, who I wanted to become.

I gave up on everything except surviving. One day. At a time.

For everyone, survival looks like different things ~ for me, it meant that I had to accept that I was now living the life of a spoonie. I was suffocating in my own body ~ trapped by events I had no way of changing, and no control over where they took me.

I had to accept that I couldn’t do the things I wanted to, hell, most days I couldn’t even do the things I needed to.

Some days it meant that I’d force myself out of bed, crawl into whatever clothes I’d left on the floor last night, only to collapse back down on the edge of the bed ~ utterly, completely exhausted. I’d have to rest, just because I chose to lift my body upright today.

Sometimes it meant that I’d eat with my eyes closed, waiting five minutes to lift my spoon of beans to my mouth because it was too heavy to pick up. I was too tired to sustain my own body.

And sometimes I was simply doing nothing more than trying to conserve my energy, to keep it at a slow trickle to get through the day, all the while the things that I’d given up on staring me in the face.

Keeping the house clean. Cooking. Washing. Exercising. Spending time outside. Spending time playing with my children. Spending time with friends and family. Basically, anything that required energy.

I was glad for the days that were good ~ the days that I could at least put on one load of washing and not have to take a four hour nap in the afternoon, but they were happening less and less frequently. Once a week. Once a month. Once every two months…

Not at all.

And when things collapsed in the middle of the year ~ this caused a spiral of events that pushed me to the stage where I was barely functioning on a day to day basis. I shuffled around in a shell; my body a prison that kept me going but denied me the ability to live.

Every day felt like I was suffocating, smothered by the weight of my own existence. I felt like I was drowning in black tar pit that was sucking me down so deep I couldn’t even lift a finger to ask for help as I lay there, petrifying breath by breath.

I spent the last six months of 2016 in this hole, and I kept telling myself; I just have to get to the new year ~ I just have to get on my new medication, and I can get through this.

And to some degree, I was right.

I am on new medication now. It yanked me through the mangler as my body adjusted to it, but even as I felt sicker, somehow I still started to feel a tiny bit better. And that has been improving.

What I haven’t come to terms with yet is the damage done to my mental health as I dragged myself through this last year.

Depression.

Lack of confidence in any and all decisions I might choose to make.

Believing with all my heart that I. cannot. do. this.

Foggy thinking.

Running away from my problems.

Choosing not to give of myself, knowing that I have no energy to give.

Choosing not to care. Over, and over, and over again.

Retreating into a shell.

Shutting myself away from the world.

Guilt. Guilt. Guilt. Guilt. So much damn guilt for trying to survive, but giving up on everything to do that.

Guilt…

So I ask myself as I look at all the struggle I’ve been through, now knowing that the medication may fix my body’s imbalance {God willing}, but that it won’t fix my mental health ~ this is a weakness I feel riddling me with holes. The weakness that keeps me trapped and cowering in my hole, and I ask myself ~ where do I go from here?

How do I become stronger again?

How do I survive… this?

I need to ditch the unhealthy self-preservation habits ~ stress eating, stress shopping, burying myself in social media so that I don’t have to see the problems in front of my eyes… and – the silence…

I spent too much of this year trying to run away from the things around me, and too much of it locked up in my head. I was isolated. A choice I made without taking the steps to realise that I had chosen.

I didn’t talk about most of it ~ I couldn’t.

How could I make my friends and family understand how bone-achingly exhausting each and every day was for me? How could I explain that I was shattered, empty of any thing- every thing- that I had to give, to grow from? How could I explain that I wasn’t going under: I was done. Deep in the midnight zone with every inch of my body crushed by mountainous pressure…

They’d ask me how I was going; I’d say “I’m tired, but what else is new!”

Haha. So funny.

I tried not to complain because I didn’t see the point. They couldn’t change my body, change my life ~ make things simpler, or easier… They couldn’t give me what I needed.

But maybe they could have helped ease the burden that was drowning me.

I don’t know.

Maybe I should have tried to explain?

But looking back, I know why I didn’t.

Because that would have required energy I simply did not have.

It’s only now, now that I am a smidgen better, now that I am on new medications that appear to be helping my thyroid functions, that I even have the energy to really think about and analyse what I was going through.

Before then, I was simply surviving.

And now I have to move onto something more than that.

I have to start living again.

And I know, this isn’t pretty. I’m sorry if it’s too close to home, or too long and painful to read. But like I said, I had to write this partly for me, and partly for anyone out there who may have been experiencing one, or all, or more, of these things themselves.

Because you are never alone in the struggle to survive, or indeed, the struggle to live.

Even in the midst of it all, I had hands helping to pull me up again. I thought I wouldn’t be able to stand, and there those arms would be; lifting me up so that I could take that one step further. My amazing husband was one who refused to let me just stay trapped. My family, my friends, even random strangers; all these people would reach out and help in unexpected ways, at unexpected times.

So I am reaching out.

Whether you see it or not, every day you choose to take that one step forward ~ no matter how that looks in your current situation ~ it is is a good thing. It’s one step closer to another day. It’s one step nearer to a different set of choices, and maybe, just maybe, it might be the first day that things change and start to get better.

Hold on.

I made it out of my hole. Even though I still have further to go, I made it past the pitch black and back to the light. I am, once again, becoming something more than just a body trying to survive.

You can too.

xox,

bonita

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