HopeSprings Posted May 11, 2011 Report Share Posted May 11, 2011 I have been sick all week and it just makes everything worse. I feel emotional, frustrated, depressed. I have been feeling like what is the point of all this reading, researching, seeing all these Doctors. I have gathered an overwhelming amount of information here - that goes in fifty million different directions - it's over my head. Everything from gut bacteria to MCAD, some non-obvious ehlers danlos, mitochondrial disorder, neuropathy and on and on. I'm spinning. And even if I want to explore some of this, I have no Doctor to do it with because no ONE Doctor knows about ALL these things. And the top medical minds that are working hard on it, simply don't have the answer yet. They've been researching for what, 10 years at least? Like I am going to figure it out? Do I just finally come to a point of acceptance that this is my life and forget looking for answers? That's really hard to do, but so is trying to figure this out. I went to get my stockings today - decided on the knee highs - after an hour of pain digging into my ankle, I ripped them off and threw them across the room. This is the solution? more discomfort? Any medication I have tried only makes things worse. I just don't know where to turn anymore. I am 38 - life expectancy of at least 70 -- so that's another 30? years like this. Oh my. I don't want to bring anyone down. I'm sorry - I just had to get it out. Quote Link to comment Share on other sites More sharing options...
corina Posted May 11, 2011 Report Share Posted May 11, 2011 don't worry naomi, that's what we're here for: to listen and reach out. i remember that after years of trying to figure things out, trying to find a knowledgable doctor, thinking this was all in my head which it turned out it wasn't, just in general: trying to get better, there came a time that i just couldn't handle it anymore. during my search and fight to get better, i had missed so much. my children grew up without me noticing and life in general passed by. so i decided to have a break from trying to get better. i stopped chasing doctors and researched when i felt up to it but certainly not on a daily base. it helped me find a kind of balance. never accepting, but holding on for the time being. after a couple of years i felt my kids needed me less and i felt much stronger to start the battel again. but in a slower pace, i learned to enjoy the small things and make the best of every day. meanwhile i kept on trying to get better and in the end, with the help of one of my potspals i found the med that does wonders for me. not cured, but much much better.sending warm thoughts your way and do know naomi that you're not alone!corina Quote Link to comment Share on other sites More sharing options...
Noreen Posted May 11, 2011 Report Share Posted May 11, 2011 {{{{{{{Naomi}}}}}}}All I can do is offer hugs and understanding.I hope tomorrow is better.noreen Quote Link to comment Share on other sites More sharing options...
sue1234 Posted May 11, 2011 Report Share Posted May 11, 2011 I feel your frustration! Vent anytime. We hear you. Quote Link to comment Share on other sites More sharing options...
kluesyk Posted May 11, 2011 Report Share Posted May 11, 2011 Corina,What med did you find that helped you? I am having one of those days today, too. So tired of trying to find something to help me. Just tried propanonol and had really bad reaction.....low heart rate, bl pressure, chest pain and nausea...my local cardiologist just told me I have to accept my life as it is.....really hard when it is so changed. Quote Link to comment Share on other sites More sharing options...
mwise Posted May 12, 2011 Report Share Posted May 12, 2011 Naomi, A great big HUG is sent to you. I feel your pain and frustration. We have all been there and there are days I am still there, but with this great Dinet family-I get through the days. Just take each day one second at a time and try to find something good in it. That is what I do no matter how I feel-which is up & down every waking moment of the day. Hang in there, we all love you Quote Link to comment Share on other sites More sharing options...
Victoria Posted May 12, 2011 Report Share Posted May 12, 2011 Dear Naomi,I feel your pain and frustration. Don't ever give up and accept that you'll feel this way the rest of your life. You might want to take a little break to regroup and try to get your head above water. One can almost drown in the sea of information, but you'll find your way because you are strong. Your strength is palpable through your writings. Quote Link to comment Share on other sites More sharing options...
corina Posted May 12, 2011 Report Share Posted May 12, 2011 kluesyk, what turned out to work for me is octreotide. i know there've been topics about this med in the past so i think that when you do a quick search you'll be able to find out more about it. if not, just pm me and i'll send you info on it via email. Quote Link to comment Share on other sites More sharing options...
Chaos Posted May 12, 2011 Report Share Posted May 12, 2011 Sending you lots of hugs and understanding. I think we can all relate to feeling like this. I was only officially diagnosed last year, but I remember having the same type of feelings in my 30's. "If I feel this bad at 35, how on earth can I live to be in my 70s". Now that I have lots of labels and am well into my 40s, I still keep searching for "the answer" that will explain it all and make sense of my weird symptoms for me. Then I get in a flare, or just get tired of this being the focus of my life and give up on the search for answers for awhile. All the info out there is enough to boggle the mind, even for people with some type of medical background and the brain fog makes processing all this info PAINFUL on some days. To some degree, I have had to come to a place of accepting that this is what my life is right now. Doesn't mean I'm particularly happy with the situation, or that I don't get frustrated or discouraged when I'm in a flare. However, I have been working on trying to "be in the moment" and accepting that I am where I am, whether I like it or not. Giving in to my tendencies to self-pity or depression isn't going to change my situation. It'll just add another layer of pain on to what I'm already feeling. Some days though, it's all just TOO much to handle and I have a good cry...which helps in its own way.It's a challenge to be sure. I did have a Mayo doc tell me..."we know you'll flare up every time you have an infection of any type, and for other reasons we can't explain. But, we also know that at some point you'll come out of the flare, regardless of what we do or don't do." That has actually been helpful to me. Even when a flare has gone on for months, I've learned that I do come out of it at some point. If you have been sick this week, that has probably made everything that much worse with your POTS symptoms, as well as feeling crummy with your illness.I can certainly appreciate your frustration and hope that having a place to vent will be helpful for you. We're all in a similar leaky boat, rowing as hard as we can (if only in a horizontal position at times ) and trying to stay afloat in this grand adventure of life. Hugs to you! Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted May 12, 2011 Author Report Share Posted May 12, 2011 Thank you wonderful people for all the warm support. Lots of really good coping advice in there too. I feel emotionally better and more focused today. I think in the future when it all gets to be too much, I'm just gonna have to shut off the brain and take a break. Quote Link to comment Share on other sites More sharing options...
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