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I am sorry to read how you have been feeling. It sounds like your ongoing health issues are incredibly painful and difficult to deal with. This is made worse by the fact that people who were supposed to help you, did not even believe you. It is not uncommon for many people (according to the research, predominantly women) to be disbelieved by professionals. It was not that long ago MS was classified as Hysteria. So my heart goes out to you, not being believed is painful, indescribably frustrating and unfair. I am glad you are finally getting treatment that you need. It sounds like you are in a flare due to inconsistent treatment that is no fault of your own. It makes sense that the flare would make an already difficult situation worse. I am sorry you are dealing with this.
I think it is great you are still reaching out for help even though you feel so let down by people. I hope if nothing else, it means something that someone out there is listening. I hear you, you are not alone in this. Even if this is just to vent, know you have come to the right place to vent. No one here can fix what you have been trying to fix for years; but, we can at least be here to listen and give you a place to vent your frustrations.
You may find this program useful in ensuring you thinking is helpful. I encourage you to work on the program. Cognitive Behaviour Therapy (CBT), what this program is based on, can be helpful even for pain management. Although this program does not specifically focus on pain management, the basic principles of CBT can still be learned here. You may also want to look into mindfulness for pain management as I have read some good results.
I am also sorry to hear sometimes you wish you were dead. Feeling in constant pain can sometimes lead us to think about giving up. It is a hard place to be. If you feel you are at risk of harming yourself please get help immediately. Call 911 if you are in immediate risk. If you do not think you are at immediate risk consider calling a Crisis Line. Crisis lines can be extremely helpful to have someone to talk to. We do not act as a crisis line and cannot give you immediate help. I am not sure where you are located. If you are in the US, check out this website to find a local crisis line: http://www.suicidehotlines.com/national.html. If you are located in Canada, use this link: https://www.crisisservicescanada.ca/en/ and this phone number: 1-833 456-4566. Do not go through this alone.
Your worries are valid. People may be unable to help you resolve what you are dealing with, but that doesn't mean things can't get better. You can, and you have been helping yourself. I hope the end of the flare comes soon and I hope you find relief soon. In the mean time, just know you are not alone.
I really don't know if this is actually a place I belong, and I'm really rather tired of talking about myself. I've had a whole bunch of health issues for my entire life, everything from fatigue to trouble eating to systemic allergic reactions to beyond extreme pain. The funny thing is that I'm allergic to most of the treatments and pain medications do absolutely nothing. Its been a great inspiration for creative thinking, but there are times where I just pray for death. Especially on days like yesterday, where none of the usual things I do or take help and I feel like my bones are being crushed & my entire body is on fire for the whole day. Thankfully today is better and I've been able to work...I'm just exhausted & feel like just my face is on fire. It sounds weird & crazy, but such is life with rare chronic health issues. Just because its rare doesn't mean that its not real. I've left all the online support groups I was in since the member just repeated the gaslighting I've endured at the hands of doctors for decades...the very same gaslighting that delayed me getting accurate diagnosis and treatment and avoiding so much suffering that never should have happened to begin with.
None of this is the real problem. I have learned to trust absolutely no one. Even now that I have found doctors who truly understand the health issues I have, I do not want to communicate what I am going through. Part of that is because I have done my own research and know that I have already tried most of the treatments that are available. I have so much physical fatigue every day that I just do not have the energy to waste on doctors. Especially since my lung function is getting worse and I really struggle to talk. And quite honestly I would rather suffer in silence than waste precious energy on other people. I've also been able to solve a fairly major health issue (how to keep myself from collapsing from dehydration & having to go to the ER for IV fluids every 2 weeks) I was having on my own without doctors, so I feel like I really don't need them and talking to them is a total waste of time.
I also do not believe at all that emotional support is actually something real that is worth spending energy on. I've never felt truly supported by any humans, and have only had something like that from my animals. None of the therapists I saw during the misdiagnosis phase really understood me (btw trying to treat systemic allergic reactions & joints that slip in and out of place with therapy is in fact insane). I live with my dad and he's very helpful with stuff like getting food, helping take care of our puppy & helping with doctors & such...but if I ask for help with anything else he either flat out ignores me or says "I don't know". Which pretty much sums up my entire life. Most people I've known personally, professionally or medically either pretend I don't exist or say "I don't know" or "there's nothing else I can do for you". I used to fight through this and think "maybe I just need to find the right people", but I just do not feel well enough anymore. There's a lot of stuff I want to do that I don't have the energy to do, and I do spend quite a bit of time just wishing I was dead. I'm just so tired and in so much physical pain.
I don't have any friends and have no way of getting out and doing anything. I am so beyond allergic to all the disinfectants everywhere that its not even funny, and no mask filters out everything. Wearing a mask also worsens my breathing issues...holding my breath is easier than wearing a mask. So I've basically been a prisoner in my own home for most of the year. I've just been totally on my own for so long I feel like I'm best off on my own, since there's never been anyone I can truly rely on. I have work stuff I need to figure out, but the solutions I'm coming up with are all phone calls, videos or livestreams...I can barely manage to talk for 5 minutes before I get so lightheaded I can't concentrate & feel like I'm going to pass out. I have test results showing just how compromised my lungs are, and I can't do anything about it.
I'm in the middle of a bad flare up that only happened because the mail is completely unreliable and there was a really long delay in getting treatment components to me when I ran out. And I cannot get myself out of this damn flare. Resting isn't helping, so I'm now back to making myself work through the pain, fatigue & burning skin. I also have run out of certain feeds for my horses, again because the mail is totally unreliable. The already delayed packages were set to be delivered last friday but they sat there because the company couldn't be bothered to actually deliver my orders. Supposedly they're out for delivery today, but I am not holding my breath anymore. Oh and now I get to deal with how to get hay for my horses, since my normal supplier is out. The good news is I am totally absolutely numb and don't feel a damn thing in light of this news. Just irritation that several potential hay farms want people to call them and my lungs won't allow me to do that when I'm feeling well, much less when I'm in the flare up that's going on right now.
Even after writing all this down, this all just seems like totally normal, business as usual, the sky is blue, grass is green totally normal life and nothing at all to worry about. It is what it is and can't be helped.