Come To A Dead Stop

[lifesaver]

I haven't been on much in the last week---instead everything in my life has come to a dead stop for over a week. I am not sure why.

I have been very tired and week and had no motivation to do anything. All I have done is spend time on the computer. No laundry, no cooking, no shopping, nothing. It started after I saw the neurologist on the 28th and got the results of my tests. Except for the blood vessel MRA, every other test had abnormal findings.

It was only in July of 09 that any doctor started taking me seriously. I spent 2 years being told it was in my head, anxiety, fibro, migraines, and so on.

I am just tired, fatigued, exhausted--somedays to the point of physical weakness. Maybe it is finally having a diagnosis and being believed. Maybe it is starting to understand the impact of the diagnosis, maybe it is both and maybe it is nothing. I just do not know. Part of me is afraid to go out in public and risk collapsing or fainting or falling and being embarrassed. At 55, I feel as though I aged 15 years in the last 3.

I am not depressed, that I can tell. Just worn out. Will be talking about this with my therapist tomorrow. I hope this dead stop ends soon, I don't like it and would really like to be doing something.

Becky

[juliegee]

Sorry you're feeling so bad, Becky. What exactly did your tests show? Do they explain your incapacitating fatigue? Sometimes it's very disconcerting to see PROOF that your symptoms are real. That can certainly knock you for a loop.

I'm sending gentle hugs and happy thoughts your way-

Julie

[brownsea]

hi becky

just wanted to say that i know exactly how you are feeling.

with the fatigue i feel im unable to do much at all. i also cant stand more than a minute.

finally getting the doctors to believe last year was a breakthrough. after two years previous of going to the doctors and being turned away.

im not sure of the way forward, i just know what your going through.

xxx

[masumeh]

It takes a lot of guts to just to get out of bed some days. Just keep going. You have to find a reason to do all those things again...and that will motivate you.

For me, my daughter gets me out of bed each day. Literally, she's the reason I feel like I'm here, and I have to put on a smile and push myself through even if it can never be perfect or near what I want--that's just life.

Having a diagnosis, and potentially progressive disease (I don't know what your exact dx is), maybe you are just trying to process that new piece of information. So laundry can wait...because you have something more important on your mind. But it's going to be important eventually to go on with daily normal activities...to push the dx out of your head and focus on what is right and normal or possible.

I've recovered now, but when my symptoms were constant and severe, I had this self-talk type motto: "I'm still standing." I would say that to myself whenever I was able to function, but feeling fatigued like I MIGHT faint, or started feeling the auras and signs that I would faint later on. Frustrated thoughts, and reflections about how bedridden I'd been were counterproductive. Instead, I would just say to myself, "I'm still standing," and push through cooking dinner, putting away laundry, studying, reading to my daughter, etc. Until the faint came. And then it came. And then I got up and went on with life again, as much as my energy could tolerate. I think that's basically what we all do.

I also had this other thing I'd say to myself about the fainting. Fainting has 3 phases: going to be over, almost over, and over. When I feel it coming on, it's awful, and sometimes accompanied by painful headache, nausea, tight chest, myotonic jerks, etc. But instead of saying to myself, "OmG, I'm gonna faint!" I instead told myself, "Phase 1: Going to be over." And then while it was happening, if I was conscious, instead of "This is so embarassing," or "Why does this happen to me?" I would say, "Phase2: almost over." Afterwards, instead of prolonging the psychological trauma of it, rehearsing, "This is faint number 2,589. When am I gonna overcome this disease?" or whatever, just "It's over." You get the idea.

I had fears about going into public, because fainting was a daily thing for me. People here in this forum helped me with that. Many people said, "Why be embarassed? Everybody just wants to help. Nobody thinks badly of you for it." That made logical sense, and is true to reality. Also many of them were very confident going out, fainting out, coming home head held high. So that attitude rubbed off on me a bit. And I really appreciate them for that. It was still difficult to cope with large, loud crowds. But I realized later it was actually the noise triggering the faint that I was avoiding, rather than the people themselves or potential embarassment of fainting in front of them.

Glad you are consulting a therapist...that can help a lot.

Good luck with your struggles!

[erickamcc0523]

I can really relate with you, Becky. I was diagnosed offically only 3 days ago, but I've already noticed that I have been having some anger and sadness at the fact that I'm official. Don't get me wrong, I am very glad and greatful that I'm past the point of doctors thinking that I'm having a "psychosomtic illness" (aka, "You're crazy and leave me alone, lady!), and to the point of getting treatment... But I suppose that being diagnosed with an illness that I've though that I've had for awhile and actually being diagnosed is like anticipating grieving for a loved one who is close to death and actually greiving them after they're gone.... I suppose for me, that explains my reaction that I've been having these past few days.

I am glad that you have a therapist with whom you can talk about this with. I am very blessed that I have two good priests who I can talk this over with.... one is my regular confessor, and the other is my spiritual director. I have been given some good advise on how I can use even my most incapicitating and suffering-filled days as an offering for God, and though it doesn't really help diminish the symptoms, at least I can do something else than just react to them. Plus, they have been a source of comfort and I know that they are praying for me, and if I were to ask, they would also pray for everyone who suffers from POTS and other dysautonomia illnesses.

Anyways, it seems to me that perhaps you might be grieving a bit from your official diagnosis, too, along with me. Here are prayers that we both make it through the process quickly and painlessly as possible.

[runningshoe]

Living with a chronic illness is a huge adjustment. There are stages, phases and cycles. Don't judge where you are - just sit with it for awhile. When the laundry takes over the house you will get to it. Counseling has definately helped me. You learn to live with illness but it takes work and insight and compassion. I had to redefine my priorities, fine tune my relationships, learn how to balance what I want to do with what I can do. Dealing with worry about feeling sick in public is complicated. Give yourself time to learn the new "rules" for your life. I think your lack of energy is what I have heard others call a crash. Your body has run a marathon and now you are tired. Medications, rest, conditioning, all of these things can help. Concerta has give me so much more energy. I do know what it is like to be so tired that you think you will never be untired again, so tired that it actually hurts.... Tomorrow is a new day, this too shall pass!!

[Elenapap11]

I haven't been on much in the last week---instead everything in my life has come to a dead stop for over a week. I am not sure why.

I have been very tired and week and had no motivation to do anything. All I have done is spend time on the computer. No laundry, no cooking, no shopping, nothing. It started after I saw the neurologist on the 28th and got the results of my tests. Except for the blood vessel MRA, every other test had abnormal findings.

It was only in July of 09 that any doctor started taking me seriously. I spent 2 years being told it was in my head, anxiety, fibro, migraines, and so on.

I am just tired, fatigued, exhausted--somedays to the point of physical weakness. Maybe it is finally having a diagnosis and being believed. Maybe it is starting to understand the impact of the diagnosis, maybe it is both and maybe it is nothing. I just do not know. Part of me is afraid to go out in public and risk collapsing or fainting or falling and being embarrassed. At 55, I feel as though I aged 15 years in the last 3.

I am not depressed, that I can tell. Just worn out. Will be talking about this with my therapist tomorrow. I hope this dead stop ends soon, I don't like it and would really like to be doing something.

Becky

Becky these days i feel exactly the same way.I am 30 years old and i feel like i am 70.Actually my 75 year old grandmother is stronger than i am!I can't be bothered making a new appointment with any of my doctors.They've all let me down and i just can't find the energy to start searching for a new doctor again.They all do the same.Tests after tests,speculations and then....nothing.The worst part is when they start avoiding you just because they are not honest enough to admit that they are unable to help me.

I tried to cook today and just because i lifted a heavy pan i started feeling unwell.I started sobbing and later i felt so angry.My POTS is like one step forward and two steps back every time. I don't feel depressed either.I am just unable to cope with the consistent fatigue and mostly the breathing difficulty.Maybe i should see a therapist too.How long have you been seeing a therapist?Has that helped you at all?

I hope you'll soon feel better

Take care

Elena

[lifesaver]

Thanks so much everyone--have tears running down my face reading your responses.

Anymore I don't know how much it helps knowing other people are going through the same thing---I am angry that anyone is going through this.

I hope the neuro I see next week will be able to give me some information on living with this ad how to adjust mentally to all the changes. Maybe the tests on the 27th will give the docs a cause for the dysautonomia and neuropathy and there will be a treatment. But then, the treatment could be as bad as the disease.

Had a tough session with my therapist this week--very difficult talking about this when there seem to be no real answers right now. My vision has gotten worse. Driving back from the appt I was seeing multiples of traffic lights--green was the worst.

I think the vaginal infection is back and I might have a throat or sinus infection--if so, that would explain some of the feeling so horrible.

HUGS and thank you so very much

[scarfgirl]

Adjusting is so very very hard. Hang in there and feel free to come here as often as you need to vent/rant/ask questions/ask for support/etc.

And I think you probably are at least a bit depressed, but that's A-OK considering what's going on in your life. Glad you have a therapist to talk to about these things.