Having a Bad Day?: Get 'yer Hugs here!!

[Jondesu he/him]

So sometimes when I can't get to sleep, I end up doing some mental math. 

Todays calculation: 953 days and counting since the onset of my constant pain. 953 days with no real rest or relief. 

September 26 will be 1000 days, and I have no reason to think it'll be any better by then.

Jan 1, 2017 will mark 3 years.

jW

[Kaymyth she/her]

13 hours ago, Jondesu said:

So sometimes when I can't get to sleep, I end up doing some mental math. 

Todays calculation: 953 days and counting since the onset of my constant pain. 953 days with no real rest or relief. 

September 26 will be 1000 days, and I have no reason to think it'll be any better by then.

Jan 1, 2017 will mark 3 years.

jW

That sucks, and I am sorry.

My sister went through something similar.  Pain, weird brainfogs, various other symptoms.  Doctors went through multiple theories:  CFIDS, MS, Parkinson's, Fibromyalgia...they were all tested and discarded.  Finally, just in the last year, she has an official diagnosis of Ehlers-Danlos syndrome.  RUSTING FINALLY.

[Renoux she/her]

15 hours ago, Jondesu said:

So sometimes when I can't get to sleep, I end up doing some mental math. 

Todays calculation: 953 days and counting since the onset of my constant pain. 953 days with no real rest or relief. 

September 26 will be 1000 days, and I have no reason to think it'll be any better by then.

Jan 1, 2017 will mark 3 years.

jW

I'm so sorry! Do you have a diagnosis for it?

[Jondesu he/him]

30 minutes ago, Renoux said:

I'm so sorry! Do you have a diagnosis for it?

Not really. Current running theory is three virus "coinfections" that my doctor knows causes fatigue, nerve sensitive, and chronic pain. Constant headaches aren't something he's seen with those before, though, so while we're treating the viruses, we aren't certain at all that will relieve the head pain. I have been on disability leave since January, so at least I no longer have to work through it (which left me suicidal at one point).

jW

[Kaymyth she/her]

20 minutes ago, Jondesu said:

Not really. Current running theory is three virus "coinfections" that my doctor knows causes fatigue, nerve sensitive, and chronic pain. Constant headaches aren't something he's seen with those before, though, so while we're treating the viruses, we aren't certain at all that will relieve the head pain. I have been on disability leave since January, so at least I no longer have to work through it (which left me suicidal at one point).

jW

Can you get additional opinions?  Maybe try and find a patient advocacy group somewhere that will help you push harder for a proper diagnosis?  Sometimes it takes people who know how to navigate the system in order to get results.

[Jondesu he/him]

1 hour ago, Kaymyth said:

Can you get additional opinions?  Maybe try and find a patient advocacy group somewhere that will help you push harder for a proper diagnosis?  Sometimes it takes people who know how to navigate the system in order to get results.

We've worked on it and still are. My doctor is being awesome, this part is just beyond his specialty, and we've been through several neurologists who haven't been as helpful. Tried to get into the Mayo Clinic too, but they have an insane wait list and wouldn't even add me to it (I have a connection through my Grandpa that might help there). Mostly I have just stopped trying myself, and my wife handles all the medical arrangements. I can't even think straight most of the time.

jW

[Claincy he/him]

@Jondesu That sucks

It probably won't help at all, but I know how you feel.

It's been 3+ years since the last time my head didn't hurt, though fortunately I don't think my pain is generally as bad as yours.

[Delightful]

I'm sick and tired of people just talking and being and expecting communication. But I'm also sad and lonely. What do I do?! 

[Renoux she/her]

1 hour ago, Delightful said:

I'm sick and tired of people just talking and being and expecting communication. But I'm also sad and lonely. What do I do?! 

Spoiler

If you really want other people to leave you alone, then just politely tell them you need some alone time, (this can be hard sometimes, especially if you're in a house with other people). I talk a lot, but sometimes I need time away from all the noise, and this can be hard, because people are used to me wanting to talk. It can be hard to really get alone time in a world full of instant communication, i.e. texting, phone calls, etc. But if people respect you, then a polite "not right now" can help when you want a break. Sometimes, the best thing you can do when you're lonely is find someone you really trust, and enjoy talking to, and spend time with them for a while. If you're going through a hard time, talking to someone removed from the situation can really help.

Spoiled for length. I hope this helps.

[Claincy he/him]

4 hours ago, Delightful said:

I'm sick and tired of people just talking and being and expecting communication. But I'm also sad and lonely. What do I do?! 

Personally I find chatting through forums/steam chat/facebook chat/skype (text) or the like makes for a happy middle ground. Far less immediacy/pressure and you can really take the conversation at your own pace, but you are still interacting with others. Another option I find can work is playing an MMO or a multiplayer game with friends, but without any voice chat. Still being around/interacting with people in a way, but without the need for so much talking.

If you know someone else who is happy to just sit and read quietly in eachother's company that might work too. That's pretty dependent on who's around of course.

[Renoux she/her]

I am just having a really bad week. I was on a really fun vacation, and I had to come home early for upsetting reasons. Not gonna get into specifics, but I'm tired and sad, and am just feeling generally bad.  Unfortunately, the sad emoji does not properly express my feelings. Bleh.

[Briar King]

I'm so beyond mad I didn't see one meteor last night due to clouds.

[Elsecaller3414 she/her]

I keep waking up with really bad kidney pain, and sometimes it is so bad I can hardly breathe. I drink what water I can, but the problem isn't going away.

[ThirdGen]

53 minutes ago, Elsecaller3414 said:

I keep waking up with really bad kidney pain, and sometimes it is so bad I can hardly breathe. I drink what water I can, but the problem isn't going away.

Doctor, ASAP.

[TwiLyghtSansSparkles she/her]

58 minutes ago, Elsecaller3414 said:

I keep waking up with really bad kidney pain, and sometimes it is so bad I can hardly breathe. I drink what water I can, but the problem isn't going away.

 

5 minutes ago, ThirdGen said:

Doctor, ASAP.

Yeah, this doesn't sound like something you should shrug off until it goes away. 

[Oversleep]

2 hours ago, Elsecaller3414 said:

I keep waking up with really bad kidney pain, and sometimes it is so bad I can hardly breathe. I drink what water I can, but the problem isn't going away.

1 hour ago, ThirdGen said:

Doctor, ASAP.

1 hour ago, TwiLyghtSansSparkles said:

Yeah, this doesn't sound like something you should shrug off until it goes away. 

This sounds more serious than "Doctor ASAP". It's more like "Doctor right now". Right now as in "middle of the night right now".

[TwiLyghtSansSparkles she/her]

Whelp, without me there to boss around and criticize, it appears Twimom has taken to pressuring my younger sister to quit her job. Because, working security, it's dangerous and she sees naked people sometimes. 

If only I could convince my sister that she needs to get out of there ASAP. 

[Orlion Blight he/him]

24 minutes ago, TwiLyghtSansSparkles said:

Whelp, without me there to boss around and criticize, it appears Twimom has taken to pressuring my younger sister to quit her job. Because, working security, it's dangerous and she sees naked people sometimes. 

If only I could convince my sister that she needs to get out of there ASAP. 

You know what else is dangerous? Love.

I may have had too many Red Bulls.

[Briar King]

Ugh the rain and thunder have reached Lake Charles and my house just got rocked. Didn't hit but man it was close

[Erunion he/him]

8 hours ago, Elsecaller3414 said:

I keep waking up with really bad kidney pain, and sometimes it is so bad I can hardly breathe. I drink what water I can, but the problem isn't going away.

Dude - this is a "show up at the door of the emergency department at 4AM" kind of symptom. If it's daytime, rush to see your GP ASAP. If you can't see him/her within a couple of hours, GO TO THE HOSPITAL.

Also: /careful of kidneys hug

[Delightful]

I'm joining the get immediate medical attention chorus. That does NOT sound good. 

[ThirdGen]

Also - you think it's the kidneys.  It might not be the kidneys.  Pain travels; it could be any number of things near the kidneys.

[Erunion he/him]

You could have a rupturing appendix or pancreatitis or heaven only knows what else. 

So seek medical attention immediately! 

[TwiLyghtSansSparkles she/her]

I've been clenching my teeth a lot. It's something I've done for as long as I can remember, when I was stressed or frustrated or angry. But now, I've been doing it so much that my jaw has begun to hurt. 

This isn't the first time; a year or so ago, when things with Twimom were growing steadily worse and I was getting angry instead of going off alone to hate myself somewhere, I did the same thing. Clenched my teeth constantly, to the point where I went to urgent care, was told it was something called TFJ, and and instructed to take Advil, eat soft foods, and use warm compresses until the pain went away. 

Well, it's back. Not because of Twimom—being away from her has helped in more ways than I can count—but because of other, more mundane adulting stuff. Money, namely. Bruce has had a couple of problems that required me to take him to the vet, and although they weren't serious and the vet I chose was by far not the most expensive of the offerings here, those visits still set me back. And I've been careful with money. I cook 99 percent of my own meals from scratch; "splurging" is having a Papa Johns pizza delivered. I haven't bought anything on impulse, or anything that I don't strictly need. I haven't even bought any songs off iTunes for the past month; if I can't get it for free, I settle for YouTube. And by all accounts, if I continue doing what I'm doing, I'll be able to build my savings back up in a few months. 

But I can't stop worrying that something will happen. That some other weird health problem will strike Bruce and I'll have to take him to the vet again for yet another expensive treatment, or that my car will break down, or that any number of things will happen and wipe out my savings before I can build them up again. That no matter how well I budget, it's not going to be enough. I'm so scared that I'm going to utterly fail at this adulting thing, and it's stressing me out, but I can't stop. 

[Erunion he/him]

59 minutes ago, TwiLyghtSansSparkles said:

I've been clenching my teeth a lot. It's something I've done for as long as I can remember, when I was stressed or frustrated or angry. But now, I've been doing it so much that my jaw has begun to hurt. 

This isn't the first time; a year or so ago, when things with Twimom were growing steadily worse and I was getting angry instead of going off alone to hate myself somewhere, I did the same thing. Clenched my teeth constantly, to the point where I went to urgent care, was told it was something called TFJ, and and instructed to take Advil, eat soft foods, and use warm compresses until the pain went away. 

Well, it's back. Not because of Twimom—being away from her has helped in more ways than I can count—but because of other, more mundane adulting stuff. Money, namely. Bruce has had a couple of problems that required me to take him to the vet, and although they weren't serious and the vet I chose was by far not the most expensive of the offerings here, those visits still set me back. And I've been careful with money. I cook 99 percent of my own meals from scratch; "splurging" is having a Papa Johns pizza delivered. I haven't bought anything on impulse, or anything that I don't strictly need. I haven't even bought any songs off iTunes for the past month; if I can't get it for free, I settle for YouTube. And by all accounts, if I continue doing what I'm doing, I'll be able to build my savings back up in a few months. 

But I can't stop worrying that something will happen. That some other weird health problem will strike Bruce and I'll have to take him to the vet again for yet another expensive treatment, or that my car will break down, or that any number of things will happen and wipe out my savings before I can build them up again. That no matter how well I budget, it's not going to be enough. I'm so scared that I'm going to utterly fail at this adulting thing, and it's stressing me out, but I can't stop. 

/huge hug
/like all the hug

It'll be ok
You're doing fine - you're handling things the way you need to. You got this. "Who of you by worrying can add a single hour to your lifespan"? It doesn't help, so if at all possible, don't dwell on it. You're getting your savings back, and you will be ok!

On the teeth grinding - maybe get a mouth guard for when you're sleeping? It can help by protecting your teeth and making your mouth less sore (because it absorbs some of that tooth-gritting energy). 
Might be something to think about!