Feeling Bad Again

[Kira]

Hi all. Sorry for the negative post but I just need to get it out. I am feeling bad in both ways... physical and mental... today. My body HURTS and I am not sure what I did to trigger it this time, and really NOT wanting to go back and deal with the whole ER mess just to find out what my numbers are.

I am in a really bad mood tonight, too. Just one of those moods where tears are right under the surface and any stupid thing can make me cry. I am frustrated and I am feeling stuck and worthless. I cannot do the things I need to do to get on with my life.

Today I spent the day literally sleeping and watching TV on the couch. I still haven't showered, made a meal, anything. I have stuff to do for school and work but have not done it. I have a HUGE pile of laundry that needs attention but have been too lazy to go out and get quarters for the wash machines in my building, and I can't carry all of it in and out of the car to take to the laundromat, so I have to do it one or two loads at a time here.

I feel so guilty about everything, and so helpless and useless... and I just want to scream. Plus I know in the bottom of my heart that I should go find out what my labs are doing (the one that is a marker of muscle tissue breakdown), but I just have had so many negative experiences with the ER that I don't want to go, and also really I just don't know how much it is going to change anything in the long run.

[lobelsteve]

CPK=325
BUN=18
Cr=0.9

Feel better.



























I just made up those numbers!

[Tbackpain1]

Oh Kira. I'm sorry to hear you're still not feeling well. I've been having one of those lazy days today myself. No shower, no cooking, no doing anything, except for holding down the couch and drinking fluids. But I've been coming down with some kind of "bug" for the past day or two and its just kicking my butt.

I hear you about the chores and things. I feel like such a bum when I can't get the housework done. My mother actually came over yesterday and did my laundry and tidied up the house for me, even though I didn't ask her to. Is there anyone you could ask for some help, even if its just having them carry your laundry for you?

I totally understand not wanting to go to the ER, but you and I both know that you need to get the #s from your labs, and if necessary, get in some more D10. This isn't something you can stick your head in the sand about...much as you'd like to, I'm sure. Is it possible that you could put in a call, rather than go in, to get the results from your last round of tests? Or did you mean you need to get more tests done to determine if you need more D10?

Take care of yourself ok? We can stress ourselves to the point of sickness over the "little things", so just try and relax some. I know, easier said than done. <<<BIG HUGS>>> and feel better, k? Let us know if you decide to go to the hospital.

[Kira]

Heh steve thanks, I'll stay home :)

Now... what direction is the CPK going? (We usually recheck in a few hours) :rolleyes:

Teresa, I meant I need a new set of numbers. I have to get them rechecked with each attack. Frustrating...

I think I will just suck it up and go. Maybe I will see if I can get a friend to come with me.

Thanks for listening to me, you guys. Being sick is so isolating sometimes, and I hate always venting to the same few people in real life because it wears them out. I really appreciate the support.

[tenacious]

Hi all. Sorry for the negative post but I just need to get it out. I am feeling bad in both ways... physical and mental... today. My body HURTS and I am not sure what I did to trigger it this time, and really NOT wanting to go back and deal with the whole ER mess just to find out what my numbers are.

I am in a really bad mood tonight, too. Just one of those moods where tears are right under the surface and any stupid thing can make me cry. I am frustrated and I am feeling stuck and worthless. I cannot do the things I need to do to get on with my life.

Today I spent the day literally sleeping and watching TV on the couch. I still haven't showered, made a meal, anything. I have stuff to do for school and work but have not done it. I have a HUGE pile of laundry that needs attention but have been too lazy to go out and get quarters for the wash machines in my building, and I can't carry all of it in and out of the car to take to the laundromat, so I have to do it one or two loads at a time here.

I feel so guilty about everything, and so helpless and useless... and I just want to scream. Plus I know in the bottom of my heart that I should go find out what my labs are doing (the one that is a marker of muscle tissue breakdown), but I just have had so many negative experiences with the ER that I don't want to go, and also really I just don't know how much it is going to change anything in the long run.

kira,

i am so sorry you are going through this. please know that this bad day will pass, and there will be another good one. dion't kick yourself for what you cannot do today; look forward to what you can do tomorrow.

you had mentioned several things that you need to do, but i don't see anything liksted that is something YOU like to do, not need to do......and ideas?:D

[illusion129]

I too am sorry to hear that you had yet another attack and that you're feeling horrible. I think that most of us around here have more bad days than good...which gets old so quickly. Ugh. :mad:

I wish that there were something that I could do for you. Hey, I'm definitely good at doing laundry! :p Lol. I hate cleaning though because it usually messes with my back (pain increase)...maybe we could do it together? ;)

You gotta improvise and ask for help sometimes, babe. I know it sucks to think "Gosh, I can't do this anymore by myself. I feel worthless." That attitude is only going to depress you even more. As stated, just think of the things that you CAN do tomorrow; hopefully that will bring you a little peace.

Keep us posted on how the numbers are and if you need to further treat yourself for this attack. I know that I worry about every single one of you guys on here, especially whenever it's a "bad day"...you're no different, Kira.

Hope tomorrow brings a much better day for you. (((Kira))) :D

[oh_snap]

Kira,
You are being too hard on yourself. Allow yourself a day of doing nothing. Normal people do that. Why be hard on yourself?

Going through the ER experience is tough enough, besides being sick. Allow yourself time to recoup, and certainly don't feel bad about needing to care for yourself as it concerns the metabolic numbers.

Having to deal with "stuff" day in, day out, is draining. Give yourself a day off, and that second wind will come.

When I feel trapped because of being "non-fixable" I find that I feel like an animal with its paw caught in a trap, struggling to pull free, skin tearing, bleeding, with anxious thoughts of gnawing off both the bloody paw, and everything with it. It is a nasty feeling.

Knowing that I get worse when I feel useless, I usually manage to "accomplish" something on any given day, however superficial that accomplishment may seem. Other days, I give myself permission to just not push so hard. Some days, when the pain/dysfunction/lack of sleep is too much, I put up my "I quit" sign, and do nothing, although, doing nothing usually means me and Monty Python are hanging out.

I am not trying to minimize your suffering or disease. I can say, that over time, we have to develop an ability to adapt and survive this "trap", otherwise, we would be both in pain, and perfectly insane (or not here at all).

You have my "permission" to take tomorrow off. :D Just get your numbers where they should be, or Doc's gonna slap you!

[GardeniaGirl]

I totally understand why you feel so down and frustrated.

I also have a hard time with days that I seem to accomplish nothing at all.

I guess on some level, I realize it is not "normal" for an adult to spend an entire day on the couch.

Lately, though, I've been doing some cognitive therapy on myself -- I follow that thought with "but I have a serious disease, so I am off the hook." ;)

Something I have started doing is calling one of my weekend days a "retreat" day.

A retreat day means I have no obligation to do anything unless I really want to.

Somehow, if I call it a "retreat" day - it makes me feel like something I am planning/choosing rather than just passively experiencing. And that difference seems to help.

Anyway, hang in there and don't get too down on yourself! You have a serious disease! You are doing the best you can to cope with it! Sometimes you need downtime. :)

--GardeniaGirl

[Mark N]

Kira, sory to hear you are feeling so bad but you just described most of my days [except the crying part]. I don't do much else not because I am lazy and I don't think you are not doing it because you are lazy. Take it easy if you need to and maybe you will feel much better tomorrow.

Steve, too funny with the #s:D

[Kira]

Thanks you guys... I really appreciate the support and sometimes I just need to hear it from others (rather than just me telling myself) that I am allowed to take a day to rest when I need to.

I have been procrastinating all night but I am still feeling "not right" physically and I think I just need to suck it up and go to the ER to get labs. So I just took a shower and packed a bag to go... this is going to sound stupid, but I have this superstition that if I bring the packed bag, then I don't end up having to get admitted, but if I leave the bag at home, I get admitted and am stuck without underwear and a toothbrush. :rolleyes:

[Kira]

Apparently I'm "fine". I got a liter of D10 and some rest. Labs (CPK) were in the gray area (for me) which is 1700's. My baseline goes down to normal range. It is only high when I have rhabdomyolysis. But whatever. It is not so high that I am worried about kidneys or whatever... just high enough to prove that there was a reason I was hurting and yet they acted like "no big deal." It is a big deal for me even if it is not a scary, sky-high number, because honestly it hurts just as bad... just the kidney failure risk is lower.

I did have a much better experience with my nurse tonight. She is one of the nice ones and I like it when I get her. I had a nice enough doc tonight, too... just that he was like "oh, okay, you can go home" and didn't seem to get it when I voiced that I am worried it will just keep happening until we get the nausea and vomiting fixed, and also that I am worried that it could be going up... it has happened before where I go and it is elevated but not sky-high, so they let me go, and then I go back several hours later because I still feel terrible and maybe worse... and the labs are much worse then, too. So I told him all of that and he was just like "yeah, but it wasn't too bad, you can go." I hate that they don't get this.

I am going to have to be a complete pest to my metabolic doc next week and get this stuff under better control. The way things are lately is just unacceptable. I have been so sick for most of the past month and no one wants to do anything about it. They all just keep deferring to each other and no one is stepping up and saying "I'll help."

Anyway, I am going to try to get a bit more sleep now so that I can at least get the school stuff done tomorrow. Thanks for listening...

[BrokenBladder]

Kira I hope you got some sleep today and you feel better. I don't think I have anything like what you've got, but I know one thing for sure, I'm always throwing up. It's the worst feeling in the world. It leave you with no energy and in my case I've lost alot of weight.
Feel better soon and I hope you get your school stuff done!!

[cookie5]

Kira
I am glad you are feeling a little better, it is so nice
when you get a nurse who cares isn't it. I'm glad she
was there for you tonight.
I totally get it about not getting things done. I feel
so bad when I just have to lay around all day.
But, you know what there are a lot of days like that and
I think I will quit beating myself up about it , it is what it is.
I hope you do find a better resolution to your health
problems.
I will keep you in my thoughts. cookie

[Mark N]

Glad to hear you got good news from the doctor and had a better experience with the nurse. Good luck with the metabolic doctor and getting your levels straightened out.