You're Not Alone

A blog designed to make spoonies smile!

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Me: huh, the right side of my body is really sore? How weird

Me, two seconds later: oh... the physio strapped my dislocated shoulder. Right.

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me: finally gets through bachelors with honours after 6.5 years me: arranges PhD supervision me: pulls out of PhD due to impossibility of testing during covid me: enrols in masters

Determined to be a sucker for punishment 2kforever

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Welcome to 2020

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[alt: image of Drew Carey from the opening sequence of Whose Line Is It Anyway with text “where everything is made up and points don’t matter”]

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when I forget to take my meds and my symptoms get worse

[alt: sarcastically surprised Kirk from Star Trek cartoon]

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For that last Anon

(and anyone this applies to)

Yes, please feel free to DM me about health stuff! 

In general, I won’t give anything that could be constituted as medical or psychiatric advice, but I’m happy to be an ear and to offer advice on navigating the healthcare setting.

I also may take some time to respond, now and also kind of always. This community is really important to me, but I have to prioritise my own mental and physical health, so when I get busy I may disappear! Possibly without explanation.

If that’s ok with you (i.e. it’s not going to be detrimental to your mental health for someone who is chatting to you to disappear at times), please feel free to shoot me a message!

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alright folks, I’m still working on the backlog of asks, so I’m calling it a night for now! Still around trying to think of #relatable pandemic and non-pandemic content

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Hey! This will probs come up as my main, but I just started a new sideblog with a pal to talk about our spoonie experiences and share positivity and advice! I was wondering if you would mind sharing our blog? You dont need to answer this if you'd prefer not to share of course - no pressure! We'd like to build up a lil community and start getting submissions and stuff. We will also have cute dog pics and other enticing things! We're @spoons4spoonies and we're also on insta! Thank you xx

in times like this, we gotta stick together. Pals, get as much positivity on your feed as possible and go follow!

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In recent months I've seemed to develop intense Health anxiety, Like I used to worry maybe a few times a year but now it's like every week I worry about every little thing that could possibly be anything. And even when I get checks my first though is "Oh but what if they missed something?" Any tips on how to chill the fuck out?

Health anxiety is rough, especially when you have a condition you have to constantly second guess medical staff on. My best advice is to ask yourself if you trust your medical team in general - if you don’t, find a team you do trust, bc honestly, distrust isn’t particularly irrational in the case of chronic illness. If you do, then research your concerns enough to ask your team about them. If they say it’s nothing to worry about, remember that you trust them! See if you can find a team that will explain to you why they’re not concerned or investigating a particular avenue rather than brushing you off (i.e. i had a gastroenterologist say “nope you don’t have gastroparesis”. I went to my primary specialist and asked him to clarify, since to my understanding, the tests we did didn’t rule it out. He explained that if I had gastroparesis there’s nothing he could do short of putting in a feeding tube, and I’m still able to eat so don’t need one of those, so there’s no point getting expensive testing done. Which made much more sense!). I hope that’s helpful! I’d also recommend seeing a psyc/counsellor/someone if you’re finding that the stress of your illness is getting on top of you. Having help with coping strategies has made such a difference for me (when i stress out of control, my pain levels become unmanageable and distressing, so i keep it in check as much as possible). 

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Lentils are a delicious food. Please discuss.

i absolutely concur - my current fave is four bean mix - especially in savoury mince which i like to call “i’m poor” mince bc i whack extra lentils in there so it lasts longer and i don’t have to eat too much.

thoughts on lentils? put em in replies! Or if they’re particularly dastardly or otherwise controversial, chuck me an anon about it!

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you’ve been fundamental in helping me cope with being so sick thanks 💖💖

omg my heart is gonna explode! I’m so glad I’m helpful! These messages really do make my night, thank you

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how do you cope bro

honestly? I’ve had a somewhat tumultuous life, so I was lucky enough to develop coping strategies throughout adolescence... somewhat by force? It was effective in any case! 

My support network is wonderful (and I’ve gotten much better at low tolerance for people who aren’t supportive - snip snip!). I’ve got an absolutely phenomenal medical team who are great at explaining what’s going on with me and why my options look the way they do. I also trust them, which means I have a policy that unless I have paid someone for their opinion on my illness, I don’t need to take it or justify why I haven’t (I can literally only do this because I trust my team’s judgement).

I’ve also been sick for over four years now, with a diagnosis for three of those years. I’ve had some time to trial and error my limitations. ChronicallyJaquie was hugely instrumental in my chronic illness journey (I still find it pretty hard to talk about her death), and I adopted a massive amount of coping strategies from her videos. 

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hi!!! i’ve been seeing a pcp for joint pain and dizziness n fatigue for a while and just recently asked her to do a poor mans TTT and she was like “oh yeah probably pots go see cardiology” who told me it definitely was not pots. i feel like pots fits my symptoms really well, but wanted to know if pots symptoms can come and go, or if they do for you at least? mine aren’t always bad enough to make me faint or have a hard time standing, they’ve been really mild recently lmao

Hello! Okay SO the official diagnostic criteria is increased heart rate (more than 30bpm) sustained for I think it’s longer than 5 mins? A lot of specialists don’t really know what they’re looking for officially, but your TTT results should show that conclusively. Sometimes you’re in a weird part of criteria that’s like an abnormally increased heart rate, but not enough for diagnosis, but in that case (if they think it’s pots-like and there isn’t another explanation) you’re likely to fit into a sort of generalised Dysautonomia diagnosis.  As for symptoms coming and going - I’m not sure which symptoms you mean. My heart rate increase is always there (even medicated lol lol what a delight), but I don’t always faint (some potsies never faint!), and I’m sometimes perfectly capable of standing. Pots is known to be one of those things that’s variable day by day (or like... hour by hour as the case may be). 

I was misdiagnosed with Vasovagal Syncope at first by a cardiologist! My primary is a general physician (specialist for people with complex illness) and he’s the one who correctly diagnosed me!

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this blog is really helping me cope with the fact that i probably have either pots or oi (i’m going to the doctor next week to get a for sure but i have,,, every symptom,,,,, and it runs in the family)

I love getting anons like this. I’m so glad I could help. I promise, once you have the diagnosis and can start talking about treatment and are out of the dark, things start looking up. I mean ableism is still rampant but at least there’s less hospital!

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It’s time for anon... however long I can manage for!!! Coming to you live from my parents’ couch

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Ableds when the virus “is only dangerous for the elderly and already unwell”:

[alt: women sitting in a chorus line, kicking from side to side]

Ableds when they realise countries are locking down and they might be affected:

[alt: woman screaming in a dramatic fashion in a shirt that reads “victim”]

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For the last anon: Sometimes, friends don't have the ability to handle something as heavy as some else's chronic illness and mental health all the time. My suggestion is talk to them. I know I've had to unfollow people not because I didn't like them, but because my mental health needed the break.

^^^ excellent advice and much more measured than my “fuck em” approach - talk first, then fuck em. And remember people are allowed to unfollow yours or anyone else’s content! Just don’t stop posting what you post because of it

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Recently my friend told me that they unfollowed my blog because I post a lot about my mental health and chronic illnesses. I’m worried that they don’t want to be friends with me anymore because of it and it’s making me worried. Do you have any advice?

chronic illness has, above all else, made me a little ruthless. My honest advice is fuck em. There are people in my life who have complained about me posting so much about chronic illness, but if they choose to unfriend or unfollow me, it’s really no loss to me! My illness is part of me, and I want to talk about it. Ableds have a world literally built for em, they can cope with having that pointed out. That said, I know it can be painful, especially if you don’t have other support networks. I’d seriously recommend facebook groups in your country for people with your diagnosis (i.e. I’m part of POTS and Dysautonomia Australia and NZ on Facebook). Those groups are such an exceptional sense of community, even with geographical distance, and it’s a huge relief to talk to people who just get it sometimes.  Sending love <3