Does Anyone Go Into Denial About Having Pots.

[blueskies]

More like a sense of 'it's not real.'

I do go into denial, sort of, at times. I still find myself thinking, 'but I couldn't have pots'. which is ridiculous because the symptoms are so persistent. Yet, I find myself thinking this way although I can no longer work, getting around is so difficult, I have so many symptoms, housework is hard, standing long enough in the kitchen to get dinner is almost impossible (somedays it is impossible), always feeling exhausted, bad constipation, excessive sweating, the list goes on. And more. Stuff you'd all experience. And yet, a lot of the time I'm not really believing I have this thing? Am I nuts?

Does anyone else do this?

many thanks,

blue

[Monstrosity]

I dont go into denial but I have an issue with acceptance....

[Lemons2lemonade]

I do this all the time! At first, after being diagnosed, I decided pots wasn't going to affect my life, boy was I wrong! Now, what's worse, is that I'm always worried it something else, I guess I am in denial about what pots is capable of.

[Chaos]

Oh yeah! If I have a semi-good day, I immediately think I'm over it and will just get on with my life....until I wake up the next day and can't move again. Feel like other people are so much more impaired than I am that I must be a POTS fraud, but then I have a day like yesterday and it's obvious I've got a lot of impairments of my own. Keep thinking I should be able to put my mind to it and make it go away, or I should be able to ignore it. Or, I think there is NO WAY I can keep living my life like this.

So YES... denial, lack of acceptance whatever you want to call it...I'm right there with you. And like Lemons- wondering if they've missed something else.

[kayjay]

Blue, I have accepted the pots - maybe because I have had it for at least 13 years? I still get upset every time I go to the doctor. I think I get my hopes up that he can offer me something new and then I am sad.

I have a hard time with staying off of gluten- I have for 2 years. Since I feel crappy with the POTS and miss eating good pizza I start thinking that it I should just eat it even though I know I shouldn't

I had a friend who asked me how I deal with POTS. I told her that I cannot think ahead too far. If it really sunk in that I will feel like I have the flu for the rest of my life - I am not sure I could mentally handle that. HMMM maybe I am in denial?

[Dizzysillyak]

I used to be really bad about this. I'd lost so much that it hurt ... but then I started looking at all that I still had. I could stay at home with my daughter and be the home that her freinds with working mothers could come to. Even tho I felt like crap I enjoyed that ... It gave me a sense of purpose. We each need to find our own.

Now that I've taken a holistic approach to my health, I'm hopeful that I can recover. Even after 22 years. I realize that if it doesn't happen at least I gave it my all ... My kids realize this too. My family, doctor worshippers and SAD eaters, all thinks I'm nuts ...

tc ... d

[Relax86]

I was in total denial in 2009 but this 2012 bout pretty much put in right in my face. I'm with Chaos...when I have a decent day I actually believe this is over and the next day I'll be me. But symptoms inevitably return to some degree. I am not as sick as a lot of folks on this site which makes me feel guilty when I post. I actually feel like I'm going to get better...I really do. My only consideration this time is ..... when will it strike again, and how will I be able to come out of it the next time. I worry about the financial impact, the impact on my career, and mentally ... I just couldn't believe this happened to me. I was fairly convinced that death was a better option. I only hope that this site has helped me to prepare and cope....and also always dreaming that this is my last bout with POTS....again probably more denial :-)

[sarahm]

If I have a semi-good day, I immediately think I'm over it and will just get on with my life....until I wake up the next day and can't move again. .

This sounds exactly like me.

[HopeSprings]

Ugh, there's no denying this for me. This illness is like a daily slap in the face. I definitely struggle with acceptance though.

[E246]

Yes every good day I think it the beginning of recovery. It knocks you back everytime.

[CarrieJessica]

YEP! Even after getting diagnosed with dysautonomia I still have moments where I second guess myself and think, do I really have this. I think it stems from the 'its all in my head' or the 'you have every reason to be stressed and tired, your a mother of 4'. When I have a good day I think I am getting better and want to 'push through' it, then I am let down that said pushing through it makes it so much worse.

[Mytwogirlsrox]

I'm having a hard time accepting my diagnosis

[shan1212]

I'm having a hard time accepting it too. Since I was diagnosed when I was pregnant, I kept thinking that after I had the baby, it would get better. But now I seem to be worse than I've ever been except for the horror that was the first trimester. And then I'll have a few good days and I'll think, "See, it is getting better . . . I don't really need to worry so much about my hydration or my sleeping etc." And then I wake up feeling crappy again.

[blueskies]

Thanks people for your responses.

And I think acceptance is a better word than denial, too. I find it hard to accept that I have pots. And it just all seems so far fetched to even me at times and I have it and suffer from it! I don't use the word surreal often but on a good day, even with the symptoms that are always present (some symptoms come and go as you'd know), I feel like this can't be happening. That my body looks so normal (except for the pots flush which comes and goes through the day I don't look sick at all. As a matter of fact when I'm close to collapsing I am a healthy ruddy colour!. No wonder family and friends don't understand .Although I do wish they would try harder to understand -- rather than ignore --that I'm sick as best they can. I wish that they would understand that when I say I can't do something, it's because I really can't do it, not because I don't want to or am just not pushing myself enough. I"ve pushed myself into a bedbound state too many times because of this attitude and being tough on myself.

I think part of me feels like why this? I have dysthymia (low grade but constant depression) which I have had since I was a kid (I'm 56 years old now) and it just seems so freaking unfair that I've had to battle feeling low and get pots on top of it. BTW, just for anyone's information having dysthymia doesn't mean I don't have a great sense of humour at times, I really do. And I really appreciate the absurd, too. And can enjoy things in life. It's just this feeling underneath all other feelings that has been with me as long as I can remember. It has nothing to do with POTS. But it can make for a sad me when other people aren't around.

blue.

[CharmedLinz]

My reply will be short, I'll add more when I'm able.

Denial for me is sort of the wrong word...... to me it's more like is this an illusion or reality.

I often ask my Mother that after a particularly bad day or appointment. She reminds me that not only does she watch me be ill on a daily basis but I've also had a Psych Eval and they would have found something if this was all a hallucination )

Really it's the worst when a Doctor says they are going to do something and they don't, or they write me off to another doctor.

It's the worst right now after last Thursday my Mom had to call 911 from my worst episode yet.

Told 2 EMT's, 2 Paramedics, 2 Triage Nurses, 3 Techs, 4 Nurses, and 3 Doctors what POTS/Dysautonomia was and that the episode started with my blood sugar dropping to 39, and then afterward I started passing out, 3 times in about 5 minutes.

Unless I was lying flat on my side my vision was going completely black and my hands and feet were totally gone. I was disoriented and my Mom couldn't get me up so she called.

In the ER my oxygen was low, a first for me. After 12 hours and 3 bags of saline, labs and xrays........after going through all those people I was deemed as having a Virus and dehydration and discharged home.

Never heard a virus starting with low blood sugar followed by passing out...... but ok whatever, could have educated a lot of people but they all chose not to listen.

I missed a biopsy and CT that were scheduled too and now I'm having the flare of all flares I think from the meds they gave with the saline..... Zofran, Phenergan, and Morphine.

That puts me squarely back in my zone of "denial" or "illusion" or "this can't be real".

[Frugalmama]

I think coming to terms with chronic illness involves going through the stages of grief - over and over again. I have been ill for 15 years now, and although I'm usually good with it, it sneaks up on me every once in a while and I need to take a few minutes to mourn what was and what now isn't. One thing I find especially difficult is folks always telling me to keep hoping that this will one day go away. I don't mean this at all in a defeatist way (I am a super positive, cheerful person), but I need to be able to accept that this is how life is. If I constantly lived in a state of hopefulness of waking up tomorrow as "me" again, it would be extremely discouraging. But coming to grips with how my life is now is what keeps me sane...and if I were to be miraculous healed tomorrow, it would be a wonderful and very welcomed surprise

[blueskies]

often ask my Mother that after a particularly bad day or appointment. She reminds me that not only does she watch me be ill on a daily basis but I've also had a Psych Eval and they would have found something if this was all a hallucination )

In the ER my oxygen was low, a first for me. After 12 hours and 3 bags of saline, labs and xrays........after going through all those people I was deemed as having a Virus and dehydration and discharged home.

Hi Charmed Liz,

Sorry to hear you had such a bad experience on Thursday. And yes, you make a great point about how the medical people had a chance to learn from you but chose not to listen. I"ve had that happen to me too. Once, when in emergency, I was actually told that what is happening to me was not possible, while it was happening in front of their eyes??? An hour or two later a specialist who had attended me just after I was told this could be heard telling off the person that spoke to me like that. Some doctors and nurses can just seem to be sore losers when they get it wrong. A weird atttitude to have if you are in the medical profession.

I see a psychiatrist to help me deal with depression and the struggle of having pots. When I was going through another period of questioning whether I really had pots I rang my pscyhiatrist and asked him could I have a somatoform disorder instead? (Hypochrondria is one sort, there are a number of others). He told me that he really thought not but to give him a few days to review his files on me. He rang me back and said that what I had was not 'in my head' but very much physical. And still I question it all at times?

BTW, phenergen sets off tachycardia for me. Not at first, for an hour after I take it I'll feel quite calm and relaxed and then I have the opposite reaction -- lots of rapid heart beat and agitation.

[blueskies]

I think coming to terms with chronic illness involves going through the stages of grief - over and over again. I have been ill for 15 years now, and although I'm usually good with it, it sneaks up on me every once in a while and I need to take a few minutes to mourn what was and what now isn't. One thing I find especially difficult is folks always telling me to keep hoping that this will one day go away. I don't mean this at all in a defeatist way (I am a super positive, cheerful person), but I need to be able to accept that this is how life is. If I constantly lived in a state of hopefulness of waking up tomorrow as "me" again, it would be extremely discouraging. But coming to grips with how my life is now is what keeps me sane...and if I were to be miraculous healed tomorrow, it would be a wonderful and very welcomed surprise

Very well put, frugalmama. I like your take on this and am going to give it much more thought.

[blueskies]

KayJay, I've rebelled often and eaten foods that I know will cause me problems. I always regret doing it but still, occasionally I want to feel as 'normal' as possible. And sometimes that means eating the same food as those I'm eating with. Although, the last time I ate some food that I pay for later I paid for it so badly I think it's just cured me of the 'rebelling.' At least for now. I actually didn't eat anything at my daughter's wedding. Hopefully no one noticed. Actually, i was at the point I didn't care whether anyone noticed or not. I was just managing to hang in there, and just BE THERE, at the ceremony and reception. That no one in my immediate circle (except on pots/dys forums) understands the extent to which my life is limited most of the time is a drag, that's for sure.

[blueskies]

Thanks everyone for your replies. I can relate to all of them.

blue

[ramakentesh]

Absolutely. How else do you stop it from ruining your life? Only problem with denial is that you do stupid things from over confidence My advice - try and be as happy as you can.

[blueskies]

Good advice ramakentesh. I used to wonder how to be happy but then I worked out it's by doing things that make me happy. There's lots of things I can't now but I can do things like sitting talking to someone, reading a book, watching a decent movie, or talking with my kids or little grandkids are things that make me happy. Especially the grandkids. Because as we all know, kids say the best things.

[ramakentesh]

Exactly it is hard. POTS for me at least is hard to ignore, harder than say a leg pain or something like that.

[freelemons]

We ask so much of ourselves and the line between acceptance and surrender can feel so thin. Frugalmama is right about grieving and I think the unpredictability makes us ride the emotional rollercoaster over and over. I've had this for 9 years and have been really blessed in that I was able to complete school and work full time. Every improvement makes me think maybe I'm finally "fine" and every setback makes me panic that everything I've worked so hard for is about to fall apart. I don't usually realize how deeply in denial I am until I have a doctors appointment - I usually come in with different symptoms or new ideas and every time I think maybe THIS is the time we will figure it all out, so when I leave I just fall apart. That said, I appreciate the small things more than I ever would have without this.

Hang in there.

"Life is a shipwreck, but we must not forget to sing in the lifeboats." --Voltaire

[puppylove]

I guess I do. I didn't think I did, because I was so relieved when I was diagnosed, but practically everyday I worry I'm just lazy and it's all in my head. Then I have to reassure myself by looking at my purple legs lol.