Got an invisible illness? Got friends or family with one or many? Got a chronic invisible illness? Have one in the past that you're in remission from? NOW IS THE WEEK TO BE VISIBLE. There's a meme located http://invisibleillnessweek.com/submit-article/30-things-meme/ that I took part in on tumblr and will post here as well, feel free to fill out for yourself as well if you want! 30 Things About My Invisible Illness You May Not Know 1. The illness I live with is: 2. I was diagnosed with it in the year: 3. But I had symptoms since: 4. The biggest adjustment I’ve had to make is: 5. Most people assume: 6. The hardest part about mornings are: 7. My favorite medical TV show is: 8. A gadget I couldn’t live without is: 9. The hardest part about nights are: 10. Each day I take __ pills & vitamins. (No comments, please) 11. Regarding alternative treatments I: 12. If I had to choose between an invisible illness or visible I would choose: 13. Regarding working and career: 14. People would be surprised to know: 15. The hardest thing to accept about my new reality has been: 16. Something I never thought I could do with my illness that I did was: 17. The commercials about my illness: 18. Something I really miss doing since I was diagnosed is: 19. It was really hard to have to give up: 20. A new hobby I have taken up since my diagnosis is: 21. If I could have one day of feeling normal again I would: 22. My illness has taught me: 23. Want to know a secret? One thing people say that gets under my skin is: 24. But I love it when people: 25. My favorite motto, scripture, quote that gets me through tough times is: 26. When someone is diagnosed I’d like to tell them: 27. Something that has surprised me about living with an illness is: 28. The nicest thing someone did for me when I wasn’t feeling well was: 29. I’m involved with Invisible Illness Week because: 30. The fact that you read this list makes me feel:
30 Things About My Invisible Illness You May Not Know 1. The illness I live with is: Postural Orthostatic Tachycardia Syndrome, fibromyalgia, Joint Hypermobility Syndrome, IBS, CFS 2. I was diagnosed with it in the year: 2015 3. But I had symptoms since: 1992 4. The biggest adjustment I’ve had to make is: Making sure I know where a bathroom is at all times, making sure there’s a ride or a wheelchair available at all times, ignoring peoples stares when I need to sit and lay down on the ground in public places like stores when the pre-syncope gets too bad. 5. Most people assume: I’m fat and being lazy or a whiner. 6. The hardest part about mornings are: Trying to figure out if I’m going to be really weak or not, and if not how long it’ll last. Because if I feel well in the morning I make plans and rush to get things done while I can, but then I crash afterwards or go downhill very fast. 7. My favorite medical TV show is: House, because he’s a snarky bastard. I also love Mystery Diagnosis and Diagnose Me because rare medical things are fascinating to me. 8. A gadget I couldn’t live without is: WiFi, keeping me from being an absolute hermit, thank you god. 9. The hardest part about nights are: Trying to fall asleep if I get chest pain or joint pain, because honestly it’d be easier sleeping on broken glass. If the IBS is active, trying to not move in a way that would make running to the bathroom a thing is horrible too. 10. Each day I take __ pills & vitamins. (No comments, please) 3-4 11. Regarding alternative treatments I: Am exceedingly skeptical after too many run ins with crystal suckers, yoga deficiency commenters and XYZ DIET/FAD/RECENT THING ON THE NEWS IS THE ULTIMATE CURE HOW ARE YOU NOT PUTTING ALL YOUR FAITH INTO IT?! But if it works for you or gives you relief, more power to ya. Just don’t go shoving it down people’s throats. 12. If I had to choose between an invisible illness or visible I would choose: At this point, visible. I’m already about to be in a wheelchair. In this bit of time before I have access to one, it’s almost impossible to be taken seriously in public without someone standing beside me helping me and vouching for what I say. I’d like to not need a third party literally standing there saying I’m not lying in order to be believed that, yes, I do in fact need that chair space so I don’t collapse. 13. Regarding working and career: Once I get a chair, I’d love to try having a job. I want to earn my own money physically as well as with my art and writing. It would let me get out of the house and doing something physical in different environments, more experiences.. 14. People would be surprised to know: I’m actually always wanting to go on adventures and explore and travel, but I’ve never been able to. 15. The hardest thing to accept about my new reality has been: That this is never going away. 16. Something I never thought I could do with my illness that I did was: Have a happy marriage. 17. The commercials about my illness: lol what commercials 18. Something I really miss doing since I was diagnosed is: … nothing’s changed really. I get to eat way more salt now than I ever thought I would/could have before so that’s actually a nice thing. 19. It was really hard to have to give up: Hoping that I’d magically wake up better. 20. A new hobby I have taken up since my diagnosis is: Literally calling myself a Salty Bastard. 21. If I could have one day of feeling normal again I would: Climb a mountain and take a ton of pictures, so I could remember it forever. 22. My illness has taught me: To be patient. 23. Want to know a secret? One thing people say that gets under my skin is: “BUT YOU LOOK SO HEALTHY.”, “Well the test results are clear, so you’re fine.” “… That’s real?”, “It’s all in your head.” 24. But I love it when people: Talk to me and treat me normally online instead of solely focusing on my health or asking if I’m better yet. 25. My favorite motto, scripture, quote that gets me through tough times is: “Yea though I walk through the valley of the shadow of death I fear no evil, for I’m the meanest motherfucker in the valley.” 26. When someone is diagnosed I’d like to tell them: Keep looking forward, but don’t stop looking occasionally at your feet. You can’t see the potholes if you’re only looking towards the valleys and mountains. 27. Something that has surprised me about living with an illness is: There is always a way to feel more tired, and there is no faster way to make complete strangers instant medical experts than saying you have an illness. 28. The nicest thing someone did for me when I wasn’t feeling well was: Turned up with my favorite snack, found silly movies and my favorite games, and showed me kittens. 29. I’m involved with Invisible Illness Week because: I have one, many of my friends have one or more, and many of their friends and family have them as well. I want them and my followers with illnesses to know they’re not alone. 30. The fact that you read this list makes me feel: Fairly happy, kudos to you!
30 Things About My Invisible Illness You May Not Know 1. The illness I live with is: fibromyalgia 2. I was diagnosed with it in the year: 2015 3. But I had symptoms since: 2014 4. The biggest adjustment I’ve had to make is: honestly, just learning my limits. like, I've had to cut back on my more strenuous physical activity because I've learned I'll really pay for it the next day, and things like that. 5. Most people assume: that I'm faking it. 6. The hardest part about mornings are: pushing through the pain to get up on bad days. 7. My favorite medical TV show is: Scrubs 8. A gadget I couldn’t live without is: my phone. reminds me to take my pills. 9. The hardest part about nights are: trying to fall asleep through pain 10. Each day I take __ pills & vitamins. (No comments, please) 6 11. Regarding alternative treatments I: am skeptical. if it works for you, great, but it's done approximately jack squat for me so far. 12. If I had to choose between an invisible illness or visible I would choose: invisible. I know how to manage my fibro better than I think I could manage having to live with a cane or being in a wheelchair or something. 13. Regarding working and career: I aim for a career where I will be a programmer, and likely not do any heavy lifting or anything of the sort, nothing too strenuous physically. regarding working right now, though, every part-time job seems to require a lot of standing and lifting and I am not really sure that would work out well. I am trying to earn money via my writing and art, though. 14. People would be surprised to know: that I really really want to travel. 15. The hardest thing to accept about my new reality has been: realizing that sometimes I have to say no to people. 16. Something I never thought I could do with my illness that I did was: huh. nothing really, to be honest. I've kind of accepted there's certain things I can't do and everything else is fair game. 17. The commercials about my illness: haven't seen any. 18. Something I really miss doing since I was diagnosed is: having a pain-free day. 19. It was really hard to have to give up: hoping it would go away. 20. A new hobby I have taken up since my diagnosis is: collecting different types of tea to try them all. 21. If I could have one day of feeling normal again I would: take a hike and take tons of pictures. 22. My illness has taught me: that everyone has limits and it's important to know yours. 23. Want to know a secret? One thing people say that gets under my skin is: "that's when your body thinks it's in pain all the time, right? but it's basically for attention." 24. But I love it when people: legitimately want to hear how I'm doing and don't mind if I complain about being tired or achey, or bring me warming pads for the pain. 25. My favorite motto, scripture, quote that gets me through tough times is: "you are stronger than your demons" 26. When someone is diagnosed I’d like to tell them: don't give up on the future; you can do anything. 27. Something that has surprised me about living with an illness is: there is always a way to exhaust yourself more. 28. The nicest thing someone did for me when I wasn’t feeling well was: came over and made me tea and brought me a heating pad. 29. I’m involved with Invisible Illness Week because: I have an invisible illness, as does one of my friends, and it's important to me to be involved. 30. The fact that you read this list makes me feel: um. thanks? so gratitude. I feel gratitude.
If I had a dollar for every doctor who looked at me like I was batty because I kept coming back with the same complaints, asking them for different tests or approaches because something was still wrong and just because those were clear didn't mean other things were normal.. I'd be rich.
I think I got lucky; I went to my doctor and said I was experiencing x, y and z, and she said "Sounds like fibromyalgia" and that was pretty much it.
See, I got fibromyalgia diagnosis first. And between that and my mental health stuff, and my weight, 12 doctors completely wrote off all my POTS symptoms and hypermobility. They kept saying "oh, no, it's all the same thing. we're not treating you, but go jogging and take some otc painkillers, bye." Took me outright demanding a standing EKG before they noticed "Oh, shit, they weren't kidding about it going from 77bpm to 140 just from standing." and sent me to another doctor in another country. Who then diagnosed me and now we're in loose chats about a pacemaker and I'm on beta blockers to see if THIS time it helps anything. 8I; If there's only fibro, a fast diagnosis is a blessing. If it's multiple things, getting it first can be a huge hindrance. I'm so glad you got diagnosed fast though! Are you on a regimen or plan that's helping the worst of your symptoms?
:IMPOTENT SCREAMING RAGE AT THIS: OH MY GOD I WISH EVERYONE HAD A FLYSWATTER TO JUST. SWAT RUDE FOLKS WITH WHEN THEY SAY THAT KIND OF SHIT..
I take a certain set of vitamins that's supposed to help, and I also am on Lyrica, which might help with the pain some, we're hoping. and I'm supposed to eat a diet with probiotics, lots of vegetables and fruits and no gluten, and take this, and I'm supposed to get a certain amount of 'light' exercise each week, which for me means swimming or walking, and I'm supposed to get a certain amount of sleep each night (a rule which I am currently breaking whoops), if that's what you mean. it seems to be helping so far; most days my pain is more mild than anything, and my insomnia's been better, although the exhaustion persists a lot. I could literally sleep for days... I'm also working on getting a physical therapist. and as far as we know it's only fibro, although my doctor suspects CFS as well, but that's not definite yet. I'm also glad I got diagnosed pretty fast. she's a good doctor, she really listens to me when I talk and she took me seriously, so I'm glad about that. I wish I had a flyswatter and would be allowed to swat people when they said stuff like that. literally every time they do a little part of me just...dies inside. like "oh yeah I'm in constant pain but I'm just faking because it sounded fun lol" no.
shit, I literally forgot the CFS till you mentioned it. I've only been confirmed for about a week or two now on that one, with bloodwork backing it up. Blehhhhh. -10/10 do not recommend. Only good thing is optimum amounts of comfy jammie pants. and yeah, just.. egh. same with people harassing folks about their parking cards, or standing up to reach something out of their wheelchairs. Just in general there needs to be a flyswatter. Or maybe a squirt gun instead, like training cats to stay off things. Rude comment/behavior, get squirted and told "No. Nooooo. No. Bad."
yeah, gonna have to get bloodwork for that one done, that'll be great. uuuuuuuuuuuuuuugh that is the worst a squirt gun would be PERFECT. *squirt* "No. Bad. Stop that."
aaaaargh yes. I am still in that stage with most things and it is so frustrating. 'well you seem to be fine, come back in six months if it's still a problem' 'I have been doing that for THREE YEARS NOW'
Isn't it even worse when you're insanely symptomatic for days up to the appointment and think, Yes, Now they can't unsee this, I am a visible plague baby this is not in my fucking head something is worse or still wrong. .... and then your body goes 'lol no' and gives you the best health day you've had in months.
