pain flare aftermath making me terrible

[Strangelongtrip]

I was doing so well, and just this year started and I keep getting thrown off and I feel so useless. I was managing things and balancing things and then I had a pain flare due to some chronic illnesses and injuries this weekend that was so bad I wanted to kill myself (I'm not actively suicidal, I don't have plans, thoughts of self harm but I have coping skills for that). Since then I can't get myself back to normal. I know logically I'm only two days away from it but it's thrown me off. Like, I was watching this show that had been adapted from one of my favorite books. At the beginning of watching it, I hated it. I was raging. Then I started liking it, then one thing would be off and I'd be thrown into a pitfall of anger and emotion. I can't get my emotions back to normal. I talked to my T today and he said it may be just me processing the pain flare and the panic, like it's a trigger of helplessness.

I went through a period of pain so horrific I've blocked out a lot of it, when my pain first started being disabling. I was so desperate and so low when my pain first started it was what really started me self-harming and abusing alcohol (which I haven't in about two years, actually today marks two years since I last binge drank, and around the time I stopped self harming but I've relapsed a bit there, just not as bad). I've been having like 4 panic attacks a day. I'm anxious all the time when I'm alone but I feel a bit safer when I'm around people, like it shuts off, which is the opposite of what usually happens. It's like I feel safe around people because they can take care of me if my pain comes back. It's a good distraction, talking to people. I don't want to be alone because I don't want to face what I'm feeling.

But I'm going to. I just feel like dropping everything to take care of myself and I feel like I can't. I was chasing my dreams and now I feel like I have to stop to get myself back to normal. It all just seems kind of hopeless. What if my dream becomes real and I end up having to cancel things because of pain? Or because I have these mood flares?

 

[Friday]

What if my dream becomes real and I end up having to cancel things because of pain? Or because I have these mood flares?

You’ll be normal?

People end up cancelling things... even at the highest levels. Peace summits are held over a day, a week, longer. Heads of state completely clear their calendar for the day. An organ has to be flown to a different hospital because the surgeon is stuck in traffic. Airports are shut down due to a credible threat and hundreds of planes are rerouted causing countless changes (Including traffic snarls, that stop the surgeon, that delay the peace summit). A space mission misses its window. A sold out rock concert either refunded in total, or worse, the entire tour is cancelled. Million dollar a day films bleed money whilst one of the actors deals with a family emergency.

At EVERY level, even dream jobs, shit happens. No one leads a perfectly charmed life where nothing goes wrong, and everything goes according to plan. And each and every single one of those people in jobs at the highest level of their field, where everything and everyone stops because they’re having a bad day? Have been the unimportant nobody that loses the job -or misses out on an opportunity of a lifetime- for calling out sick, or getting stuck in traffic, or missing their connecting flight, or having a family emergency. Rising to the top of their field, achieving their dreams? Doesn’t mean they become untouchable. It means when something goes wrong for them, it goes wrong for a whole helluva lot of other people, too.

Thats life. Things go wrong. At every level. Effecting one person or millions.

The trick isn’t that nothing goes wrong. The trick is recovering gracefully. Which isn’t always going to be in your power. Again, that’s just life. Which means that if/when things go wrong for you after achieving your dream job? You’ll still be human. Touched by life, and touching others lives. Just like everyone else. Normal. So take a deep breath. You’ve got this.

 

[Strangelongtrip]

Thank you @Friday ! That makes a lot of sense. And puts stuff into perspective. I'm usually really good at recovering but I feel like this time is just a lot. It's a lot at once.

I didn't sleep well last night and am even worse off today. I can't even write about it really. Just totally bad, hyper vigilant, anxious, painful.

 

[Freida]

What if my dream becomes real and I end up having to cancel things because of pain? Or because I have these mood flares?

Yep. It happens to me all the time. That's actually why I started therapy - to get some coping skills.

I was a super overachiever before pain took over my life . These days I never know what getting out of bed is going to look like until I wake up. It was a steep learning curve to accept I have good hours and bad and that I have to be aware of how what I do right now will affect me in the next day or so.

I started to come to terms with it when I admitted to people I'm completely unreliable because I have to take care of me or the pain gets worse. I can no longer ignore it like I used to. It broke my heart to have to say it but weirdly no one seemed to notice. Everyone around me was like "ok". Once they knew they couldn't count on me it gave me permission to come and go as I felt better. It's been a total non event. I think it is a much bigger deal to me than it ever was to them.

As for dreams? Those had to change. But it didn't mean giving up - it mean reconsidering what I could do that felt meaningful to me and still accommodated my needs. And I will say - what came of it has been odd but fulfilling. Totally not where I saw myself in my future - but it works.

 

[Tinyflame]

@Strangelongtrip only have a minute, but just to say pain is very draining, as is no sleep, and I get SI when I am sick and don't know it (til later), and have trouble calling in sick. If it is EDS it makes often for a lifetime of dislocations- which explains early onset arthritis (I have it from my neck to my toes), also I find pain which feels like arthritis of the muscles? Though I know that does not make sense. More importantly, depending what type you have (since it's related to the 5 or 6? types of collagen) it is potentially blood vessel integrity (as well as skin integrity) issues. Genetic analysis will tell. Medium to large blood vessels troubles are the worst.

Good luck and hope you can go with the flow. :hug:

 

[Strangelongtrip]

As for dreams? Those had to change. But it didn't mean giving up - it mean reconsidering what I could do that felt meaningful to me and still accommodated my needs. And I will say - what came of it has been odd but fulfilling. Totally not where I saw myself in my future - but it works.

The good part is the thing I found out I'm really passionate about and want to do actually accommodates my pain better than the things I "thought" I wanted to do for so long: politics, writing ads, international policy and working for the State Department, all long hours and inflexible jobs. I just still am scared because now it's what I REALLY want That's vulnerability. Part of me wishes I never realized.

Right now I don't want to do it all because I'm so worn out. I get frustrated just thinking about my projects. I start crying because I feel like nothing I do is good enough.

also I find pain which feels like arthritis of the muscles? Though I know that does not make sense.

that makes SO much sense I've never heard it described like that before. For me it's like my muscles ache so bad, like they're inflamed. They thought fibromyalgia or related to POTS, but I really do think with my family history it could be EDS. I'm on the waitlist but I'm moving soon to a place with possibly more doctors to see if that's it.

 

[Ronin]

Take a pause?

Treat pain.
The world will wait.

Career? *Totally* will wait.

Eta you post: Don't think value hard now. That pain talking. Is not healthy brain talking. Hurty bodies talk other things. Need be healthy first.

Ofc can't think tasks not mattering for survival. That brain prioritizing *right*. Not bad signaling. Taking care u mind what *needs* minded. Survival, acute pain, health.

 

[Strangelongtrip]

Thank you @Ronin ! I’m going to try for the next few days to just rest up well. I have exams and school but it isn’t too hard fortunately!!

 

[Freida]

So excited you have a dream that works! That is awesome!

Fibro is a bitch. It feels like you have the flu all the time and my muscles just ache. Plus all the other myriad of symptoms. :laugh: If you think this might be what you have I've got some suggestions that might help *)

 

[Tinyflame]

I'm moving soon to a place with possibly more doctors to see if that's it.

For that @Strangelongtrip it's genetic analysis, it's considered definitive. Easy things to spot are joint hypermobility (good pointe and tests like putting your arms in the praying position behind you, thumb flexibilty), translucent skin, cigarette paper scarring; secondary Reynaud's (inc allergic to cold); frequent dislocations, especially of the same joint; previous heart attacks or major events early; ruptures, hernias and spontaneous tearing , blood clotting issues that come and go; loose skin, even despite being thin; lesser recognized: IBS-like symptoms or chronic constipation (when doing everything 'right'); sparse eyebrows, extra eye-lashes, big eyes, small mouth, narrow nose (though some present without); crossed eye, teeth problems, blue sclera, scar tissue, missing earlobes, difficulties with swallowing and a list of others, either inherited simultaneously or related to collagen (both in skin, blood vessels, and interconnecting organs). But beyond types it can vary from mild to severe.

However I will say this, once you get over the shock of it: seeing my own family eating and staying active seems a huge part of delaying or preventing consequences (as well as yoga/ stretching, and I'd say chiropracty for pain relief- physio did nothing ever for me personally). But most of all- there's nothing they can offer for it, other than pain meds. And lets be honest, if one didn't know, some of those things could be explained else-wise, or considered not as a primary focus. For example, heart attacks could have more to do with smoking. And Cirque de Soleil wouldn't have a performer who didn't have joint hypermobility (very different from drs recommendation to: 'not run; don't lift heavy items; avoid stress; avoid elective surgeries and diagnostic scopes'. I have a relative who, not knowing, ran 10 miles every morning- she's worse off for no longer being able to. Etc.) Not to mention that Ins Co's have a field day. It may not even be rare- just underdiagnosed. No one fretted about it when they didn't know it existed; they just misdiagnosed it (if at all) and generations of people carried on. Who knows? Maybe it's behind craving mmargarine, pb etc, as fat is a collagen precursor? The body has a way of trying to meet it's needs beyond what can be offered for treatment (at this point- nothing).

So if you have dreams I would say follow them. No one knows tehe future, and if you know what condition explains some of your idiosynchrisies, great, but it's good not to make that the focus of the lens through which you make all your decisions. Just for myself, there's nothing worse (& more boring) than just fussing over and talking about health concerns, esp which are chronic. It's nice to know (though annoying to deal with) that I'm not just an idiot with bad luck who somehow can manage to dislocate my shoulder turning off my alarm clock etc, so there's that. But better still by about the 2nd or 3rd time I figured out a way to get it in myself. And if I had limited what I did physically I would have missed out on much that I adore and had a great time doing. So just learn your limits and realize there's probably an explanation (for everyone) for the weird things our bodies and minds do. :hug:

 

[Strangelongtrip]

Thank you @Freida ! No ones been able to identify the pain exactly, but I do have torn things in my pelvis and hips and impingements. Just my entire pelvis is injured from over exercise as a teenager. Pubis symphysis pops out of place, hips pop out of place, and I also get what feels like fibro flares (a relative has it and I have the same symptoms). Whatever you have that could help I’d love to know!!

@Tinyflame thank you that’s really soothing!! It took me 4 years to get diagnosed with my injuries and tears. I’ve definitely learned to just deal with the symptoms and my PT has told me sort of what exercises to not overdo (but of course for some reason 9 minutes of yoga did me in last week) but it just gets so frustrating. I’m pretty active in general but I get so bored doing the same stuff over and over it makes me feel trapped but new things are off limits.

I loved to run, but I can’t anymore. I usually did like 3 miles a day and that probably is why my hips got so messed up as a teenager. That along with intense heavy weight workouts. It complicates things I have a mild ED linked to pain flares, like I want to loose weight so the pain would be better but I just...can’t. I’ve tried a million ways and it fluctuates so wildly it’s frustrating.

 

[Strangelongtrip]

I'm thinking now some of the reactions I'm having are PMS, complicating my PTSD symptoms. I've had more flashbacks in the past week and panic attacks than I have in months. I'm on a new pill they thought would help with endometriosis but wow, I feel terrible. I've started dissociating so badly that I look up and two hours have passed.