"What did you get for Christmas?

Beware, it's gonna be a long and very personal thread.


That's new to me, too.

I mean, almost all the symptoms I have have been around for most of my life, I just never connected them together, and due to, uh, a shitty past, I was taught to ignore them, to consider them normal, as "you're exaggerating" or "it's nothing, so stop complaining" (That's ableism if you didn't know, a very common form of abuse, where your suffering is dismissed as nothing, mostly when it's not physically seen (e.g. mental issues), but sometimes even when it is).

Except that, while it was relatively bearable during most of my life, it has been rapidly breaking down in those last few months.

Side note, it was pretty awkward to receive the famous cliché talk from my doctor that "the normal amount of pain is zero".

A friend of mine has reported hearing me regularly complain about waves and waves of pain for more than a year, but it apparently wasn't enough to make me notice how regular it was.

Still, during around september of this year, I had a sudden breakdown. A normal day spent going to a friend's place, when, in the tramway, a panic attack suddenly hit me without any identified trigger or warning.

I don't remember much from that moment, except that I "woke up" at my friend's place a hour later, shaking, and I was told that I crashed so hard I couldn't keep my balance, so my wife had to carry me all the way there.

After that, and what happened to be an okayish evening, a wave of heavy pain hit me all over my body, in all forms (diffuse, precise; burning, needling, electricity, and everything else), and this cycle lasted for three continous days.

While, beforehand, I didn't want to see a doctor, this breaking point pushed my wife to "force me" to see one, and this started a long list of tests and checkups.

During this time, I seemed to be "better", but regularly needed help to walk around, especially outside; thankfully, a great member of my feather family decided to offer me a cane so I could gain some more autonomy.

Another breaking point happened around 3 weeks after this first event; while I was hanging out on my balcony with a friend (again, with no explicit stress on me), my heart suddenly tore me out in a heavy wave of needling pain (with what was later confirmed to not be a heart attack by a cardiologist), forcing me down on the floor screaming for a solid minute before... every trace of this pain disappeared.

Since both those events, I've been starting to more and more regularly have pain attacks, mostly after workdays (spending lots of time in front of the computer) or when going out (groceries, administrative stuff, this kind of thing).

All tests came back perfectly clean. From every clinical test, scanner, and diagnosis, I seemed in perfect health. My doctor and I then started to explore the fibromyalgia path, with some more tests, but they didn't want to prescribe me any form of painkillers because "we don't know what you have, so it'd be better to not prescribe you something that would make it worse". I didn't like this kind of reasoning, but was as lost as them and still scared shitless of making "it worse".

So I held out, until another wave of pain crashed me (again), but this time the result was bad enough for me to be brought to the ER. Unsurprisingly, as ERs are useless when they don't know what you have, I spent the night trembling in pain without even getting a mild low-risk painkiller, and being taken half-seriously (remember about ableism? Shit's very common in french hospitals. Fuck them).

This pushed me to ask my family doctor as soon as I could for real ways to cope with it (the conversation kinda went with me dropping a "with how bad it is I'm gonna get painkillers one way or another, so either I get them in a shady way, which will definitely be unsafe for me, or you prescribe me a few of them so I can safely and responsibly try them out", this made them finally give in and give me a few of them).

So I got all my new candies to try, and did just so in the following weeks. Codein and morphine based meds had no effect on me at all, apart from helping me clear very mild headaches. I then tried a neuro painkiller (pregabalin) that was advertised to me by the doc as "shouldn't have any effect on you because it only works in rare cases", and unsurprisingly, it worked better than anything I did try before, even though "better" was only still being defined as "mild effect" and which only lasted for like 2 hours max.

In the meantime, I started to talk to a pretty cool person I would now consider part of my feather family, who's disabled and has the advantage of being a huge nerd who did lots of medical research and tests already.

We talked. A lot. Like, a lot.

And they made me discover something I've never heard about before, which is a rare genetic condition that... matches all the symptoms I have, and some more I didn't know were "abnormal" until now (including cognitive or energy issues).

Its name is Ehlers-Danlos Syndrome, or EDS for short.

Following in this path, I decided to spend some more time checking articles, diagnosis documents, papers on the topic, and since I had a few more doctors appointments scheduled ("a few",haha, joking, I had 17 of them scheduled), I took some time to put together a small folder with every diagnosis result I had before that (blood tests, scanners, MRIs, endo scans, dopplers, whatever else), and with the pre-diagnosis documents I filled out, and I talked about it with some of those doctors who knew about it. They are all heavily supporting this path, and one of them who's very well trained on EDS even confirmed me that what I did show was definitely not a fibromyalgia, but was much closer to an EDS.

This brings us to today, where I've become so affected by "this shit" that I usually don't spend a day without trembling from the pain at least once, where I'm losing more and more physical autonomy in everything, and where I now officially have a doctor's certificate of disability, inciting me to build a folder to request "that official status" from the government, which includes a disabled worker status, and that well-known disabled parking card.

At this point, I can hardly stay in denial. And even though my inner voices are still pushing me down, telling me that everything is fine and that I'm complaining for nothing, the increased care and help I need to carry on with my days makes me think that no, I'm not in the wrong here.

On a side note, since neuro painkillers hardly worked but had heavy addiction and habituation issues, this friend recommended to me another painkiller that was known to be safer addiction-wise, and worked very well for them, with the only downside being that it needed to be injected (sub-cutaneously or intra-muscularly), so I learned to do both on myself, and asked my family doctor for this specific one (its name is Acupan, if you're curious), which worked, without much surprise, very well (it lasts for up to 6 hours in case of "usual effort" and to a day and a bit more when I'm resting; the only downside being the 30 minutes of pure drunk-like drowsiness I go through after an injection).

Which means that I'm now on a self-injected painkiller plan (most of my good days being a small 4 on Mankoski's pain scale, a 6 being the usual, and waves going up to 9, or in some rare cases, 10, where I simply either dissociate or faint), spending my days resting and counting the effort I'm doing, being very thankful for my workplace being understanding enough to let me rest for hours during the day.

I'm also discovering a few worlds that were unknown to me until now:

At least, it's fuelling my imagination for building exoskeletons and cool transhumanism shit, and putting a beautiful middle finger in front of my abusive relatives' face.