U ever feel like u are just waiting around to die???

[litliwlowa]

everybody that don't live this life either look at you like your a hypochondriac and lazy or they want to say stuff like we'll if you lost some weight you would feel better or if you would exercise you would feel better...I mean come on y does everybody either think they can give you the answer to your problems in one sentence or they think you are fake...

That's why a long time ago I stopped dancing as fast as I could to meet everyone else's "advice" and "perceptions". That, and I have never lived my life according to what people think about me anyway. What other think about me is not what defines who I am. I define who I am - simple as that. What matters is what I know about who I am, what I know I need to do to manage a plethora of medical issues as best I can and if other people don't get it, then that's their problem unless I choose to make it my problem.

You can't do anything about those kind of people who think they know all and perceive that invisible life limiting challenges are synonymous with being a hypochondriac or lazy. I've heard it all - and the last person I knew to even verbalize such an erroneous judgment on me I invited to step into my shoes any time but until that person did, she was grossly unqualified to make any such assessments on me. That squashed that bunk in its tracks.

Life is too short and too precious to waste fretting on those kind of individuals. They aren't friends, and while some may be family members, they have even less excuse for that kind of ignorance. And it IS ignorance at best.

so I stay at home away from everybody so I can just hurt in peace.. like I said waiting to die

I see things a bit differently. I suppose because I have died technically. So every day is a gift. Sometimes it's a not so good day and other times it's a good day.

But I can understand and even empathize with the feeling like waiting to die. Perhaps it does feel like that, but that is not a place I permit myself to go in my thinking. That would be a dark place to get stuck in, I think.

Yet as time goes by, and it's oh joy, NOT another symptom, like today something as simple as cooking bacon. Doggone it, taking it out of the pan was a workout. My hands wouldn't stop tremors when I'd hold the fork a certain way. So I worked around it holding it a different way, um like the way a toddler does when first learning how to hold a fork? Stopped the tremors holding it differently, but still, it's like the hits just keep a-coming.

I don't get out much, mostly as if it isn't the TBI crud in certain situations making it difficult without assistance, it's the MCS, or the asthma, so far Sjogrens itself hasn't been so much of an issue with getting out (except when eyes are flaring), or it's a pain flare.

So I take each day on it's own merit. If it's a good day, cool!! I'll get out for a bit. If it's a not so good day, well I stay in.

But I don't ever stay in to "suffer in silence", and truthfully I can't relate to that approach.

I can relate to the insensitivity of some people that have not a clue about a lot of things. Sometimes, perhaps they don't know quite what to say to us and maybe it's their way of "trying to be helpful". Other times, some people just have too much space for rent between the ears. It is what it is.

But no, I personally don't feel like I am waiting around just to die. I find myself more waiting for those occasional days when I am not so flipping fatigued so I can get out more.

Amanda

[nannysbaby]

Karleesgranny, sorry to hear you are down today--maybe tomorrow will truly be a much better day for you.  I believe I have walked down your path a time or two.  It would be wonderful to have a friend that would sit and listen and still be a real friend after the session was over and who would even ACT like they believe the things I am going through and not try to go one better, and would just SEEM like they really cared.

Sometimes I do feel a clock in the background tick tock, tick tock, tick tock, counting down until my flare is over and after a good day it starts all over and the good time is so short and the painful time is so long and drawn out.  And in the back of my mind I do think about new pains and wonder what's next.  I guess we should all perceive our lives as some type of queer mystery that will only be solved over months of waiting and endurance.  I don't think it will be a best seller!

[Alhanna]

I haven't been officially diagnosed but am having tests. Even if I don't have sjogrens, it sure seems like something autoimmune. Anyway, when this first started 3 years ago, I was always afraid I was dying. I had trouble going to sleep because of the fear. Now, after years of feeling sick and being unable to do the things I used to do, I'm just not afraid anymore. Not of dying, anyway. Mostly just afraid of bad "flares" and additional illness ( more symptoms!). So I guess it's not the same as waiting or wishing to die but I'm at peace with it because it means an end of suffering.

That being said, I think I remain hopeful and boy do I enjoy the rare good days I have. It's like I'm superwoman. Which, of course, can lead to crashing after but I still love those good days. I'm always tweaking my diet and lifestyle to see what might give me more of them.

[gemini052377]

I completely understand. My phrase to my husband is "I am tired of being tired, and hurting all day."

I want my life back. I want to work, and play with my kids without the thought "If I do this now, I will pay for it later!"

Working in a hospital we are told pain is the 5th vital sign. Our patients pain whether acute or chronic needs to be managed. I often think how nice it would be to actually get relief from the pain with the meds I take. If I were an actual patient, my chart would be flagged for ineffective pain management.

I think, is this how it is going to be until I die? Can really put a damper on one's quality of life, happiness and future.

Take care,
Mary

[karleesgranny]

Thanks to everyone who posted.  I feel so much better knowing I am not the only one that feels this way...I have been dealing with this for so long it just gets so tiring to just live...As for depression and wanting to die well I do think it would be easier to just not wake up but I don't want or wish to die I'm not ready for that I have 2 grand daughters I want to see grow up... I just look at my mom and think she is in better health than me and she is 76 years old...When she was my age she was dancing and partying and living life...I just wish I could be like that... I mean anything I do I can only last 2 hours on a good day just sitting and watching everyone else have fun then I need to lay down and take more pills...which almost took me out once because I forgot that I had already taken like a could hours before.. yeah that was a trip in the ambulance and a shot of narcan... fun! So now I have to write down when I take them and I have a pill box which I hate having to fill...This disease has attacked my body my mind and even my skin...I have a stupid rash on my face that just won't go away...I think it's clearing up and more pop up...And everybody looks at me like I am a meth head or something...my family ask me what's wrong with your face like they haven't seen it before or something...I don't know I really hate to be me sometimes...but no worries I ain't goin anywhere at least not on purpose. .. again thank yall so much for your post and encouragement. ..

[litliwlowa]

I just look at my mom and think she is in better health than me and she is 76 years old...When she was my age she was dancing and partying and living life..

Now THAT would bother me.. Heck at my age now, my mother was over teh road trucking coast to coast in addition to getting her degree in psychology.

Me, I had to scale back long distance drives as I needed too many pit stops (all that water sip swish swallow then eye drops at least once an hour even on Restasis), then stretching out the kinks so muscles don't cramp...an 8 hour drive road trip ends up being a lot longer at that rate...

...yes sometimes it seems like dying a little more each week. I just don't like to let myself go to "that place".

Good point about the med box too. I made that mistake once on my thyroid meds - as I hadn't done my med box the night before for the next day. Then I it was did I take them already (which I do without thinking about it) or if I didn't dare I take them justin case I didn't? I ended up calling endo in a moment of eeks.

It changes our lives - there's no getting around it.

I was thinking today about how weird it is that so much of my day is managing my meds/OTCs/supplements (total of 34 at present - UGH that includes eye stuff), coordinating that with meals, plus which can take together which need to space apart, then what time to take what...keeping track so don't run out of any really important ones (like thyroid and BP meds) - that's a fulltime job itself between doctor appts, plus daily sinus washes, keeping humidifier sterilized once weekly then BiPap gets sterilized weekly (hoses and stuff), oh and geesh is there ever enough distilled water between BiPap, humidifier and sinus washes? Nope. Uh oh, when did I last sterilize humidifier and BiPap...gulp...I forgot to write it down

And the irony? I don't have cancer or what some would perceive to be the yucky could die of stuff (had my scares that way but it always resolves in a few months - I'm not going to complain about that for sure!!) .Nope, got just enough medical issues to make any given day a challenge at best hopefully with enough energy to maybe MAYBE get the housework done and MAYBE get out once in a while to once again be able to enjoy my photography and travel around. So each day is started with "maybe today". I can't say "maybe tomorrow" as "tomorrow" is always "tomorrow" and never quite arrives to "today". If that makes any sense at all

karleesgranny...next time you get to feeling like you're feeling, look at all the things you DO accomplish which I bet is quite a LOT. While it may appear that in comparison to your mom at your age to be not so much, you accomplish more than you think you do. Even though  not the things you'd want to be doing, but you're still one very busy lady. When you start listing out everything you're needin to keep track of just to manage this medical stuff - geesh it's overwhelming and I betcha those folks who sit on the sidelines with remarks such as you shared in your opening post couldn't handle a tenth of what you are on any given day.

I'm tuckered out just on writing this post...

[Tivia]

I haven't been officially diagnosed but am having tests. Even if I don't have sjogrens, it sure seems like something autoimmune. Anyway, when this first started 3 years ago, I was always afraid I was dying. I had trouble going to sleep because of the fear. Now, after years of feeling sick and being unable to do the things I used to do, I'm just not afraid anymore. Not of dying, anyway. Mostly just afraid of bad "flares" and additional illness ( more symptoms!). So I guess it's not the same as waiting or wishing to die but I'm at peace with it because it means an end of suffering.

That being said, I think I remain hopeful and boy do I enjoy the rare good days I have. It's like I'm superwoman. Which, of course, can lead to crashing after but I still love those good days. I'm always tweaking my diet and lifestyle to see what might give me more of them.

Boy do I understand this, I still get the fear of not wanting to sleep because I feel I may die, it comes out of nowhere. But like I said I am afraid to die and also afraid of what more is to come, how bad can I get before I beg to be put down. This is so sad and pitiful im not even middle aged yet really, and I am in worse shape than my 76 year old aunt! I was athletic  my whole life how can this happen?

I am just having a pity party right now because things are rough at the moment. But if they dont get better I dont know what I will do. Its so upsetting when you try to picture where you will be in 5 years and all that comes to mind is a hospital bed or a grave. 

[warmwaters]

I understand what you are saying, there are days when you wonder, why bother?  The way I work my way through this is to try to find meaning in little things. 

For example, today I sold something on craigslist. It was a little old wooden footstool. A young man came, and he was really excited about it, and was telling me about what he was going to do to fix it up so it would look good again.

It made me happy - I'd wanted to refinish that stool, but I just don't have the energy for projects like that these days. So for the rest of the day, I focused on how excited he was - it's like my little project was going to a good home!

Not a big thing, but that's my coping mechanism - I saw a duckling, aren't they cute?  I helped my (adult) daughter figure something out. Trying to find little things.

But of course, I'm not at the worse place in a flare, so it's bit easier to have that attitude. It doesn't always work.

[karleesgranny]

Yall have hit the nail on the head and I am thankful for everyone's encouragement and support... Thank all of yall that have been so supportive.... I needed to read/ hear this just for my own peace of mind to know someone out knows how this crummy painful sleepless loss of memory can't get out of bed life is....not that I'm glad yall are sick just glad I'm not alone...Thank yall

[susanep]

I can relate with what all of you said.

I have been on here a long time now, but I needed to hear all this today.

Thanks to all of you. All of you blessed this lady today.

susanep

[kimberly64]

Susan,
Sometimes all it takes to turn a horrible day around is to hear from others who are suffering the way you are.  The ones around us in our day to day lives do not fully understand and some will never and that makes it even worse.  If not for this board we would suffer in silence and that is not productive or healing.  Please take care.
Kimberly

[karleesgranny]

Thank yall.....Kimberly you are so right...

[finallyadx]

I know I posted early, but I forgot to mention that I have told a few close individuals to me...do not grieve me when I am gone, be thankful that I am no longer suffering and "trying to get through"...

We all can relate to what you are saying...take care.

[gurs]

I hear ya! When I'm gone..don't want a funeral,
But a party! No more suffering..Amen!
Looking foward to the next life..I think my family
Understands this finally after dealing with all this.


Gursie

[eye2dry]

I have RA and sjogrens.

I have terrible fatigue and some discomfort in my wrists and feet.

I am seriously considering of retiring at 56. I had always wanted to

work till 65. A lot of our patients are elderly and say things like:

I've lived too long.

I outlived my wife and friends and I am ready to go.

I can't do anything I use to do when I was younger...why go on living?

and I usually say that I understand but I hope to live to be their age.

Then they say.....Oh no you don't.


When I was first diagnosed 4 years ago.....I thought a lot about the real

possibility I may die early of a RA or sjogrens complication. I can honestly say

now that it barely crosses my mind.


But.......it just may take me out early. Meanwhile.....I'll just live as best I can.


Take care everyone.

eye2dry