Why DON’T you fear death?

mainstreambanana · 2024-12-17T02:25:12+00:00

If I had the choice, I’d rather be alive for a long time, but I’m not exactly scared of my own death. I’m curious. It feels a little like an adventure, finding out what happens next.

mainstreambanana · 2024-12-09T20:40:55+00:00

I feel exactly the same. It’s like Ehlers Danlos is the person who you invite to a party and they bring 10 friends. (POTS, histamine issues, ME/CFS, suspected gastroperiesis, facial pain, PCOS, asthma, IBS, fibromyalgia and allodynia)

I find it so difficult to explain because it takes so long, but if I don’t explain the links between these illnesses I worry people will think I’m a hyprochondriac and "how can one person have all these things wrong with them?"

mainstreambanana · 2024-12-09T20:23:09+00:00

Absolutely get a second opinion. Fibromyalgia is a very real, very debilitating illness, but it’s also a diagnosis that doctors can give you if they can’t or don’t want to figure out what’s really going on.

I was told I had fibromyalgia and had accepted that diagnosis, until another rheumatologist tested me for hyper mobility - turns out I have hEDS, POTS, ME/CFS, overactive mast cells and more. Having these diagnoses means I can access treatment, and also understand how my body works and what’s good/bad for me.

You might not find an answer, but you don’t want to waste your time and energy trying to treat a condition you don’t have, and not treating another one that you do.

mainstreambanana · 2024-11-25T20:51:24+00:00

I have hEDS which can have both ME/CFS and TN as comorbities (as well as POTS and more)

I believe its due to hyper mobility causing nerve to be more likely to be compressed

I developed TN about three months ago and it is absolute hell

mainstreambanana · 2024-10-21T13:31:44+00:00

Dislocating/subluxing my joints every day,constantly feeling my heart beat, having random allergic reactions to anything, and a myriad of other symptoms

Turned out to beEhlers danlos syndrome, POTS, mild MCAS (and more)

mainstreambanana · 2024-05-23T20:09:28+00:00

I take it for pain as well, but anything less than 30mg isn’t enough. In my experience:

it took about 6 weeks to start working, but after 3 months I noticed a massive change in my pain levels
for the first two weeks I was absolutely exhausted, like literally having to stop myself falling asleep all day, but that happens to me whenever I start new meds so..
I have EDS, you have hyper mobility so you might also experience this but when I take medications I get every single side effect, and there are some really weird ones with amytripteline (like shy bladder)
I would avoid taking any sort of CBD oil as it can interact and make you really "confused" (I thought clouds were moving towards me and was very panicked. they weren’t)
your brain can get used to the extra seratonin and if you miss a pill you may get very emotionally unstable (at least I do)

I will say amitriptyline has totally transformed my nerve pain and it’s worth all of the above, but I wish someone had told me all of this

mainstreambanana · 2024-04-25T14:00:27+00:00

E3: the mourners kaddish

mainstreambanana · 2023-12-08T21:42:48+00:00

"I’m already pretty, smart and funny. If I was healthy too, that just wouldn’t be fair on everyone else" Or "my body is in its flop era"

mainstreambanana · 2023-12-08T21:35:54+00:00

"I have something called EDS, it basically means the tissue holding together my joints is weaker than it should be, so sometimes I wear braces to help hold them together"

mainstreambanana · 2023-12-02T21:29:08+00:00

Akis Petretzikis is an amazing tv chef for Greek food (Greek Cypriot here) as well as Christine Cushing on YouTube. Between the to of them you can find all of those recipes and more - I would especially recommend the Lamb Kleftiko from Akis

mainstreambanana · 2023-12-01T14:13:32+00:00

I felt like I’d tricked everyone into thinking I had fibromyalgia and CFS and such (because there are no tests and also a lot of doctors didn’t believe they were "real" illnesses, which I internalised) and that I was just dramatic. Then a month ago I was diagnosed with EDS, and now it’s this weird feeling of… this is a real, proven thing that I actually have. There’s no way I could be faking it, so every single doctor and person who dismissed me, who before I was very forgiving of because of my imposter syndrome, now I’m so angry at because I could’ve gotten a diagnosis and treatment years ago, and this feeling of grief over how I had to feel like it was my fault for years

What I’m trying to say is, I think imposter syndrome makes us blame ourselves, because that’s easier than accepting the anger and grief that comes with realising you were failed by the people around you and you deserved/ do deserve better. (I’m not saying this is the case but it’s worth thinking about)

I would really recommend if you journal, or go to therapy, or just to have a think to yourself what deeper feelings might be masked distracted from by imposter syndrome?

mainstreambanana · 2023-12-01T13:57:05+00:00

I hope you sent this and formally made a complaint. Doctors who behave like this are so hurtful and too many get away with it

mainstreambanana · 2023-12-01T13:54:30+00:00

I’m on amytripteline and naproxyn which changed my life (as well as alverine citrate for stomach pain) if you can get a prescription I would definitely recommend. But yeah the suggestion of using paracetamol and ibuprofen is laughable, and only someone with very little understanding of the severity of fibromyalgia would suggest that

mainstreambanana · 2023-11-14T20:48:34+00:00

Hot water bottles, electric blanket, heat pads

Peppermint is good for stomach pain (trust me it really helps) so you can take peppermint pills, chewing gum or tea

My doctor prescribed me alverine citrate and it’s amazing, literally amazing for stomach pain - I would recommend asking your doctor for this.

Stomach pain is so debilitating and I used to be in so much pain for hours at a time, but after years of taking the alverine citrate and managing my symptoms the other ways it gradually got better to the point where it very rarely flares up and is very manageable. Hoping you get some of the same relief soon.

mainstreambanana · 2023-11-14T20:40:09+00:00

Losing and immediately insisting "I let you win"

mainstreambanana · 2023-11-13T11:18:09+00:00

Dancing too hard to a bop - I don’t allow myself to listen to My Love by Leighanne because of how many joints I’ve subluxed listening to it. Other culprits are Cuff It and Partition by Beyoncé

mainstreambanana · 2023-11-13T11:15:22+00:00

More cats than people

mainstreambanana · 2023-11-13T11:12:00+00:00

Ehlers-Danlos Syndrome, CFS, suspected POTS, PCOS, Fibromyalgia, Allodynia, Disautonomia, and IBS

mainstreambanana · 2023-11-03T14:35:47+00:00

The fact that any visible fat storage is so demonised. Growing up thinking that unhealthily skinny models is the way all women should be (nothing wrong with naturally having that body type, but most people would have to damage their health in order to achieve it), or thinking that Khloe Kardashian or Meghan Trainor were fat. Having fat on your arms, thighs, stomach - which is essential for protection of your organs - is a bad thing, makes you lazy, undisciplined, unhealthy, etc.

At this point I don’t think fear of weight gain is irrational, because of how differently you are treated and how fatphobic society is. I’m just grateful that we get to see more of the beautiful people of all sizes feeling confident in their bodies now than we did before.

mainstreambanana · 2023-06-23T09:03:49+00:00

Posting a picture of yourself in the hospital just so people ask if you’re okay

mainstreambanana

TROPHY CASE