What Stage Of Grief Are You In Re: Pots

[spinner]

Ive found the stages of grief interesting and helpful to study when dealing with an ongoing illness that has no immediate cure.

Im aware of the denial, bargaining, depression, despondency, anger, and acceptance phases.

Im pretty sure im in the acceptance phase, but mainly because I realized after my cpap sleep therapy didnt solve my other issues, that i had an underlying problem and it wasnt going away miraculously.

I was once told i possibly had ms or als long before this so i was prepared.

If I ever get "over" POTS it will be considered like "gravy" to me, an unexpected bonus, but I think it took me a couple years to get to the acceptance stage.

[Mytwogirlsrox]

Goodness.. I've felt such a array of feelings since my diagnosis. Today I feel like I'm rejecting it

[bellgirl]

Since it took me 13 years to receive a diagnosis, I can not only say acceptance, but relief to have treatment . I've been diagnosed over a year now...Had lots of years knowing I was sick . Just glad that I have meds, supplements, Cpap, and exercise to make me the best I can be

[spinner]

i can relate to that, just before I was diagnosed as negative for MS, i'd say "i hope its positive".......just to have an explanation for being so healthy then suddenly had trouble moving and breathing. And I knew others with MS who were managing it.

That non-diagnosis sent me into a frustrating tailspin, and I was to the next (after first heart, and then second thyroid, and then third MS): sleep apnea. This was confirmed, but i quickly learned the cpap therapy can take a solid year to pay off. Ive been on that for awhile now, and it helps my breathing and night episodes but Im still weak obviously, and have all the rest of the POTS problems.

I guess all that prepared me for coming to acceptance. But Im sure I'll go right back into the other stages if it get worse suddenly or if I get weaker and less functional. I dont remember going though the anger phase, but maybe im just not there yet or maybe its because im over 50. I think of myself as being 25 like most people but theres something you need to be warned about in turning 50 as all kindso of health issues can suddenly pop up right around that age.

[hippychic258]

I think it depends on the severity of your illness me being bedridden I have went through these stages: Denial meaning I thought I was going to wake up and be right back to my old self and old life, When I realized that wasn't going to happen I went into mourning, I felt like I had basically died or should i say life as I knew it died , then the depression, then the anger, now I have accepted it but I still have the anger and depression along with acceptance.

[HopeSprings]

For me this is not a linear process. I bounce from feeling to feeling depending on the day. Today I am just plain DEPRESSED.

[westernmass]

I am similar to Naomi. I can feel all of these in one day! Or have days of negotiating days of anger days of grief.

[Birdlady]

I feel all of those emotions every single day....My biggest one is frustration. I don't want to upset anyone here because we are all at different points in our illness. However I know for a fact, I will never accept the idea of suffering with a chronic illness for the rest of my life...Another 40-50 years of this is soo depressing, I can't even think about it.

[spinner]

Yes, Id agree with that, I may be in acceptance, but if I wake up and can tell its going to be one of those nasty days and i cant do anything about it, its FRUSTRATION.

Theres the feeling of having to endure the symptoms, but then theres the feeling of wasting time and being unproductive.

Its almost like "ok, i get it, Ive got a disease that isnt going away, but does it have to wipe out entire days that i'll never get back"??

[hippychic258]

Or wipe out entire months!!!

[issie]

I can so relate to this and every emotion that has been expressed. When I was in my 20's, newly married and just starting what should have been the beginning of a beautiful life - health tragedy hit me harder then anything I'd dealt with health wise - as a kid. Thankfully, I married a wonderful, supportive man, who loves me despite my health issues. But, the life that I thought of and dreamed of - was not going to be. So, with time you learn to change what you 'EXPECT' out of life and be thankful for what you 'GET' out of life. Every single day is a day that we awaken and can find something good about being alive - if nothing else to just see the sun rise and see the sun set. We have to learn to see the beauty and appreciate the little things that others take forgranted. It really changes what you feel is important in life. I'm also in my 50's and it's true what time and experience hands to you. I too feel that I'm still a young person and want to do what I did when I was younger. We don't age in our minds - just our bodies start to let us down. We all, no matter, what our age - want to enjoy life. We have "LIFE" - so we have to find ways to enjoy it - in whatever capacity we can. It's all our perception as to what reality is.There's two things that I have on my desk - that I remind myself of:

We Don't See things as THEY are,

We See things as WE are.

by Anais Nin

And:

Don't think about how it was before- that was yesterday.

Look forward to tomorrow and think about what you can do 'GREAT' today.

We can't undo or redo yesterday,

We can LIVE today,

and we can DREAM for tomorrow.

by Issie

[bellgirl]

Wonderful attitude and poem, Issie...

Yes, we all have those hard yucky days, but dwelling on those will not allow us to enjoy the good ones; it is so much better to dwell on God's gift of life, we have been given, and enjoy the small moments, like when I saw a ruby throated hummingbird, who paused just a second to look at me the other day!! All the birds at my fountain and feeder, or the doe and fawn, I was able to pause, and see in my backyard, because my day was slower than usual, that I might have missed, otherwise. I call these miracles in the moments that we are given!! Not to say there aren't days that I am down, throw a pity-party, even cry on occasion, or get frustrated, too, getting a taste of some normalcy in life one day, and then POTS rares it's ugly head, because I have days like this, too!! We have a choice everyday on how to act or react to it. You also need to be proactive in your treatment, too, with your doctors. This disorder can be very humbling at times, and we need to accept help from others, too, at times, so we can do things we do enjoy!! Certainly, for those that are clinically depressed, you should talk with your doctor....that's a whole other issue, and needs to be addressed.

[peregrine]

I go back and forth between acceptance and depression; it depends on the day and how well I'm doing. It helps that pre-POTS I already had some serious body issues (constant joint pain, fatigue, bipolar), so I was used to moderating my activities, saying "no" when I needed to, etc. The difficult thing with the POTS is that it's harder to (1) predict at the start of the day how bad things will get and (2) I go from okay to nonfunctional with very little warning sometimes. Those days are the ones where I typically get depressed because I just don't have the ability to plan ahead when things go from okay to bad so fast.

[issie]

Thanks Kim - glad you liked it.

Issie

[spinner]

yeah, I dont think i'll ever get used to waking up and trying to ascertain what kind of day it will be just because i have a syndrome.

To those that are healthy, its not something they can comprehend.

I also enjoy the little things in life, but i think my favorite is that evening walk/swim where i forget everything. If I feel too

weak or dizzy to do my 1 hour slow walk, its VERY depressing because it makes me feel like im going backward.

Ive learned to cheat and bring a bicycle along, and always walk uphill, so that if i get in trouble i can coast back.

Sometimes when i get out there and get the blood going i get my second wind and everything works out. About every

tenth time out i just cant do it, and have to head back, those are the worst days.

[puppylove]

I'm always switching too. Sometimes it's different everyday, sometimes every hour.

[Angela]

my last neuro appt. my doc asked me what my most dehabilatating symptom and I told him at this point it is the adrenal surges and more importantly feeling depressed/angry/sad that I have pots. He said I should go to a psychologist....yeah right, another copay to talk to someone who doesn't even understand what we experience! I mean, I'm not going to kill myself over this, I am just sad and a psychologist can't fix pots. I'd rather just talk to someone who is like me and maybe we can have laughs, brainstorm and cheer eachother up.

[lifeless]

grief. fetal position grief for many gigantic reasons.

1 is the biggest in my life. so out POTS is worse too.

I have to say a re-hello on a new thread as have not been able to sign on for months.

IT WAS EXPLORER. Firefox let me.

Grief? Loss? nothing left TO lose.

Someone here thinks my problems, ( i like 'journey') may be too big for this site BUT I still have had POTS since birth and though my rd. may be vastly different and good at reaching to any of you while finally getting tips I can use.

I love Angela's post here. How true---people who can not comprehend this or so many invisible handicaps.

I will start a new/new thread soon.

love love love to ALL of you and thanks to mods for all the help in resetting me over these months.

[lifeless]

All your replies are relevant and important. darn--if we wanted a roller coaster, why couldn't we just go to a fair!.

[bellgirl]

I just wrote "roller coaster ride" in a personal message; it's like you were right there Lifeless, but I wasn't talking to you; That describes it very well. At least you are still holding on!! Hand in there, and when you can't hold on any longer, there is always someone here to give you a ((hug)).♥ We are here for you!! I used to love roller coasters, but I need something a little kinder to my body these days. How about swimming...there you go

[StandUpSitDown]

For me, I am in the VERY ANNOYED phase right now. For six 1/2 years, from 2005 until 2012 (early), I was slowly regaining capability. I was driving my wife 100+ miles in the car, going out to dinners, enjoying a movie. It was a 'quiet' life compared to life-before-POTS, but it had fun in it and looked to be slowly improving. Then, I did too much May of this year (flew to a relative's wedding, outside in 95 degree heat for hours - did great, but the next morning I paid for it with a huge POTS crash into a big setback, so it's like 2007 again. I hope it doesn't take *four years* to get to where I was before!

I'm 51. I think we are making great strides in understanding POTS, but I fear they won't be for my generation.

[looneymom]

My husband and I will never forget the day when we were told that our 11 year old son had POTS. At first, we thought no problem, it will be ok. But little did we know how much it would change our life style. My son became very frustrated because he can't understand why the doctors can't fix this problem. He wonders if he will ever be able to play basketball or football again. His older brother hopes that POTS will not come visit him any time soon. Our family takes one day at a time. We have realized that POTS is unpredicable. You take the good days with the bads but we all look forword to the day when he will outgrow POTS. So overall, my family has accepted this rare disorder and is trying to move on.

[NaomiSpellman]

I was told by a GP in 1990 when I was 26 that I “might have POTS”, but at the time there was little knowledge re: the adult manifestation of POTS. I had been having neurologic disorders since age 4, including surgeries, medications. But the orthostatic intolerance manifested in my twenties. I could not get medical help through my HMO - “Just salt your food and drink more coffee” this was the only help my GP offered. He laughed when I asked him to get diagnosed and treated by a specialist for this condition. I guess it was pretty funny, in retrospect, because I have never been able to get help through an HMO or through insurance. 25 years since that assessment I am happy to be getting help from a Cardiologist who has POTS patients. I did go through a very low phase before I was able to find medical help. I was depressed at lack of concern from various doctors – I was told by one ENT I had caused my vertigo/nausea problems by myself (“Q-tip trauma” is what she wrote on my Medical Record that day). I had become very sick with a range of neurologic symptoms, and stopped taking care of myself – stopped caring about myself entirely. I was actually going to work without brushing my hair or teeth, because I couldn’t stand long enough to complete all the tasks associated with getting everyone out the house each morning. I stuffed my matted hair into a clip, then under a hat which I wore all day. Everything left undone. Horrible time. I still struggle to care for my son on a day to day basis, but thank goodness he is growing up and self-sufficient.

I am in a better frame of mind now that I understand why I struggled so much. I have only recently begun to forgive myself for all the difficulties I have had at work, with relationships, etc. Since having a discussion with the Cardiologist about POTS last week, I am considering anew why things happened the way they did. It is like pulling off a pair of rose-tinted glasses, and seeing the world with naked eyes for the first time. The glasses were broken anyway. I am in a daze – the same way I felt after getting hit in a car accident. I did not realize how much the symptoms were affecting me. For example the Cardiologist described why POTSies have cognitive difficulty. And it makes so much sense now. When there is no oxygen in your brain you can’t really think. Duh! But of course you cannot explain this to a normal person. I often feel frustrated at the huge chasm between my own perception, and the normal persons’ way of going through their day. Some days I feel like I am living on a different planet than the people around me.

As others describe: symptoms up and down all day long, like on a seesaw, or a catapult – some symptoms are physical, some emotional, others cognitive.