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Poppy 🌀

@small.figs

1.6K

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639

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Sharing my whimsical life with me/cfs
Fleabags mum 🐕
🌀🐞🕯️🔮💌
📧 [email protected]

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So much changes with me/cfs, it’s hard to build a new life when this disease punishes you for experiencing joy

#mecfs #myalgicencephalomyelitis #chronicillness #spoonie by @small.figs

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2 hours ago

Hey everyone this is for my friend Sage, they are moving house v soon & need some support!

(Will go towards rental deposit, moving, cleaning, carpets, replacing things in the old house, potentially bond if they cannot get assistance elsewhere with that, non PBS meds & just generally surviving during this chaotic time)

They are aware & acknowledge that times are hard for everyone right now, & appreciate any & all help they get a tremendous amount.

If you can please spread this ask around far & wide, particularly to your more resourced & waged friends, it gives a chance not only for our community, but the broader community to chip in

💟💟💟💟 by @small.figs

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3 days ago

The cruelest thing about ME is how quickly time passes after you get really sick

One day your 23 and planning your life, then suddenly your 26 and you’ve pretty much been stuck in bed the past 3 years

#mecfs #chronicillness #myalgicencephalomyelitis #spoonie by @small.figs

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13 days ago

Friendship should never be conditional on health. You deserve love, respect and friendship at any stage of your chronic illness journey

#chronicillness #friendship #spoonie by @small.figs

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13 days ago

I can’t fake PEM, or the way my body can’t regulate it’s temperature when I’m in flare ups. I can’t fake the way my heart rate increases with movement, or the way I collapse if I push myself too much. I can’t fake the way my legs stop working, or the pain from migraines, or the itchy skin and red rashes from mcas. I can’t fake my GI symptoms or brain fog or the way I can’t stand for longer then a few minutes without overheating and throwing up.

When I first developed all these symptoms I kept pushing through, until I was sleeping 18+ hours a day and unable to even fill up my water bottle.

I was hiking, dancing, working, studying, running and walking for hours each day. I wasn’t deconditioned when I first got really sick. Deconditioning is a long term result of ME, it doesn’t cause ME.

When I first got really sick I treated it like burn out. I exercised more, ate really healthy, sat in the sun, did my uni work and tried seeing friends more. Doing all that made me 10x worse and did permanent damage.

When I first started mentioning my symptoms to my doctor he immediately suggested it might be me/cfs, I did 3 months of testing with various specialists to confirm this diagnosis.

The internet is a really cruel place to be if you have me/cfs right now, but there’s also so much support and solidarity from people who get it.

I didn’t know much about ME before I was diagnosed, so I understand why people are uninformed. But being uneducated on something isn’t an excuse to not beleive someone’s lived experiences.

#mecfs #chronicillness #myalgicencephalomyelitis #health by @small.figs

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14 days ago

I’ve been sicker then normal lately so not posting as much but a lot is changing !!!

We are moving to Canberra in a few weeks and living in an apartment again which will be much easier (no grass to cut or garden to maintain !!!)

Hopefully my baseline will improve alot after moving, but moving itself has always made me really sick so I have to be prepared to get sicker for a while.

I’ve been a lot more insecure lately with having to shave my hair and gaining weight, I try my best to be neutral about my appearance but when chronic illness changes the way you look it’s hard to be neutral about it. So often our appearance is the only thing we can control, so the grief hits hard when even that is taken away.

My phone is also breaking and crashes whenever I try to post on TikTok and insta which is why I’ve been less present online !

Pls hmu if you live in Canberra and wanna chat !!!! So keen to meet new Canberra friends 💟💟💟 by @small.figs

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17 days ago

Every summer I talk about how disabling my heat intolerance is and how badly it impacts my pots and me/cfs.

And every year someone tells me “but my heat intolerance is just as bad as you and I can leave the house, mask, stand, walk etc”

It’s hard to convey just how badly heat intolerance impacts my quality of life, and just how much it takes away from me, especially living in Australia where it can get SO hot.

I had to leave Sydney because of heat intolerance, leave my home, leave my degree. It was the main symptom that pushed my ME towards the severe category.

My functional capacity improves so much every winter, and every summer I lose all of that capacity. It’s so heart breaking.

Thinking of everyone else in Australia living with heat intolerance and dreading the next 6 months 💟🌀💟🌀

#mecfs #pots #health #chronicillness by @small.figs

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a month ago

Severe ME awareness day is tomorrow and I wanted to share my story of progressing to severe.

It didn’t happen overnight for me or from any one specific viral infection. It was a mix of emotional stressors, moving houses, chronic infections and doctors giving me misinformation which led to me being stuck in a push crash cycle which developed into rolling PEM and then becoming severe for a few months (idk the timeline bc I was asleep so I don’t remember much lol)

If I knew what severe ME was I would have changed things months before my big crash. I would have left uni, left work and left stressful friendships a lot earlier. I wouldn’t have tried going to the pool or exercising like my physio told me to. I would limit appointments to just ME informed doctors via Telehealth. I would have stayed home and rested a lot earlier.

But instead I was told to keep my life as “normal” as possible. Which means I tried staying at uni, working, volunteering, grocery shopping in person, walking and catching public transport, and in general just pushing and ignoring every symptom I had.

This led to 10/10 pain flare ups that doctors wouldn’t treat, sleeping 18+ hours a day for weeks, not being able to share a bed bc my partner moving next to me was too painful, missing important milestones, and having to shave my head bc I couldn’t shower or brush it.

I’m so lucky that I got better from this baseline. I can now walk short distances and see friends occasionally. Idk if I’ll ever be able to work, study or live independently again. I can only hope that I continue recovering to a more mild baseline. It’s been 3 years since my big crash and I still can’t do most of the things I could do before it.

ME is a serious life threatening condition, and stories like mine are so common. My story is a good outcome tho, so many people with severe ME never recover and even die from ME related complications.

#mecfs #myalgicencephalomyelitis #health #chronicillness #severemecfs by @small.figs

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2 months ago

I was sick with me/cfs when I met my partner but I didn’t fully understand the extent of it. My partner watched me jump between moderate and severe for way too long before I found a treatment plan that gave me a more predictable life. There’s no level of sickness that has been too much, bc disabled people are never too much for just existing with their illnesses. You deserve to be loved in all stages of health, and you deserve to be with someone who reminds you that you aren’t a burden for being sick

You deserve someone who will sit outside the @noahkahanmusic concert that you both paid for and sing along with you bc your too sick to go back inside

#Relationship #mecfs #chronicillness by @small.figs

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3 months ago

I started getting really sick from me/cfs in the same month that I went on my first date with my partner. I know it can feel really hopeless trying to date with chronic illness, and statistically a lot of people will leave their sick partners, but there’s also so much hope that someone who’s caring and understanding and loving will come into your life when your at rock bottom with health stuff.

It’s about to be our one year wedding anniversary and I’m reflecting on so many friendships that haven’t survived my chronic illness, but also the friendships and love that became so much stronger through me being sick.

You deserve to be loved and cared for, regardless of your health <3

Also shoutout to hinge lol

#chronicillness #mecfs #relationships by @small.figs

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3 months ago

It’s very bold to assume that doctors are always right, when they are just ppl who aren’t immune to their own bias and miseducation. And when the medical industry has notoriously sprouted misinformation around conditions that they don’t understand or that mostly impact women.

I knew I had ME before I got diagnosed with it, but I also spent 10 years thinking it was depression or burn out. Early intervention would have improved my quality of life SO much.

#mecfs #chronicillness #disability by @small.figs

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3 months ago

Lil photo dump from the weekend

Being healthy enough to spend two days hanging out with friends, walking around a festival, going to bookshops and art galleries and driving around is something I’m SO grateful for.

I feel like I’ve lost so much time over the past few years from being sick with me/cfs. I might never be able to go back to work or study but I’m so grateful I can occasionally do things like see friends and not permanently get worse after.

Things like this still cause a flare up, but it’s a flare up I know I can recover from.

#mecfs by @small.figs

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4 months ago