What Has Pots Stopped You From Doing?

[persephone]

I'm angry with POTS today. It has robbed me of so much. It is always there, like a big black cloud on the horizon.

I ended up in the ER/A&E on Friday night due to a pleuritic chest infection and an allergic reaction to Erythromycin which felt to me exactly like the beginnings of a Stevens Johnson reaction. When the paramedics took me in, I was screaming in pain and vomiting with the gut pain. They lied to me and told me all they had was paracetamol (tylenol). I know for a fact that carry morphine in all ambulances. They told me they couldn't carry me down the stairs to the ambulance because, and I quote, "It's 2 am and we're tired." Worse still, when I arrived at the hospital, the doctor on call saw me puking into a bowl, saw that I was crying and dishevelled, and asked my mum if I was ANOTHER FRIDAY NIGHT BINGE DRINKER?? Such ignorance, such prejudice. I hate it.

But hey, we should be thick skinned to experiences like this by now, right? well, why has it upset me so much? I've put up with this nonsense for almost ten years, after all. But it's got me thinking about the way POTs stops me from living my life:

I haven't been able to:

**get a driver's license

**finish any of my degrees on time

**have a single academic year where I haven't had to take time out from college

**get health insurance

I had to get that out today. I've had ENOUGH OF YOU, POTS.

Anyone else want to talk about what POTS has robbed them of, feel free.

I figure it's important to be positive, but sometimes we need to let off steam and vent. I had to do this today or I might EXPLODE.

[pat57]

well,

I "felt" your post, I hope it was carthartic for you.

[lieze]

Holy cow-I feel guilty writing it but I'd like to go to the zoo.

Sorry that you're having such a rough time.

[lissy]

POTS is that unwanted house guest that is her for the long haul....

It has taken my confidence-------to speak with confidence and a good thought pattern

my weight---------------------------can not gain

my spontaneous nature-------------doing anything without planning for it

my memories I could be sharing with my children

A tan---------------------------------Loved to lay out

My clean house I would have if I had a choice

The ability to work-----------------who knows where I'd be if I could have had a choice

My love to travel long distances and see the world

My free mind -----------------------without brain fog and fatigue

Energy-------------------------------It pretty much stops everything

Well thats about enough to stop anything.....

[Angelika_23]

I used to be a dancer. POTS took that away from me. I am still grieving that loss.

[houswoea]

I used to dance too

The saddest thing I lost was my roommate. She was my best friend but couldn't handle my sickness, so she kicked me out. I love her still and things worked out, but it still makes me very sad :'(

I have gotten the "you must be on drugs or hungover, go away" from the ER and clinics too... frustrating. I'm sorry that happened to you.

[Troy]

I used to be a dancer. POTS took that away from me. I am still grieving that loss.

I too used to be a dancer, although I never did it as a career it was still my biggest passion in life, every weekend I would go to rave party and dance my *** off

It was very fast style of dancing called "shuffling" alot of tricky moves, slides, kicks, the sort of intesity and tricks break dancers do. Oh god I miss that the most.

The other things Ive lost due to POTS:

-Friends

-Social Life

-Goals

-Job

-Sun Bathing

-Independence

-Sexual activity

-Alcohol and drugs

[sugartwin]

I'll commiserate with you, persephone.

I'm angry that my body hurts all the time. That I can't get my Ph.D. That I can't teach, which was my dream. I feel I've lost all sense of purpose and direction in life. I was an adult, not yet married, but out of my parents' household. My illness intimidates my friends and I often feel that there is no one 'there' for me. I'm very, very lonely. And bankrupt. Can't forget those medical bills....

Before I got sick, I thought that I could accomplish anything I wanted with will and intellect. Nothing seemed off-limits or too difficult for me. But now I know that all the will and intellect in the world can't make a doctor give a **** about me. I can't even pay them to care.

The answer to the question. what has POTS stopped me from doing, seems to be 'everything.' Or at least, everything I really enjoyed or wanted to do. This sounds awful and depressing, but it's nice to be able to rant it all out.

[Justpots]

POTS has taken away some of my confidence.

Takes away freedom and spontaneous outings.

Playing outdoor games with my children.

Recently bowling and ice skating with them too...

My ability to be the type of police officer I loved being.

Confidence in Dr's...

Going for a run

The list could go on...

POTS does not take away love, hope, family and treasured memories.

Each year I go on a small manageable holiday with my family and look forward to the next one. It gives me something to look forward to. Dared a 10 night cruise this year and survived without too many issues.

I fully understand the next to vent...

Keep smiling

[Birdlady]

Thank you! I needed this thread too. I Just had one of the worst experiences at a local urgent care tonight. I went there because I had been experiencing an increasing number of PVC's, but it wasn't ER level yet so I just thought I'd get it checked out. The doctor was downright patronizing. Telling me that I needed to get over "POTS" and find a job that I can do so I can be "part of a team". /sigh This guy has no idea what POTS even was...He kept saying Paroxysmal tachycardia syndrome and I had to correct him each time.

Things POTS has stopped:

-Having a family. I really don't think it's going to happen at this rate. How could I ever take care of a child?!

-Having a job. Once again most jobs are simply too demanding on me. Standing/lifting and bending down is just too much for me and to have to be somewhere on a schedule isn't possible most days.

-Having friends/social life. Most people don't understand your limitations so you just stop getting invites to events or outings.

Thank God my husband is understanding with all of this which is invaluable though.

[MomtoGiuliana]

having another child. This has been at times very painful for me.

Sure I COULD attempt another pregnancy (or could have). But based on my first experience and the unknowns and my family's reliance on my income, couldn't do it.

Used to sing in choirs and not sure I could now.

Fearful to attempt international travel due to possibility of relapse.

I also try to focus on what I have and can do, but the can't's and fears do get to me at times and I definitely understand the need to rage and vent.

So sorry Persephone for your experience with the ER, and your losses.

[mountain girl]

My husband, who is wonderful by the way, remind me to focus on what I can do, and that's a good reminder for me, but like you all there are things I miss. Just little things, like singing, cleaning my house, just feeling normal would do. I am fortunate that I have periods where I feel normal, but they don't last long, some times a few hours, sometimes a day. I still work, but on a limited basis, and I do not enjoy it as much as I used to because I just do not feel well, so it is so hard to get thru the day. I feel old before my time.

[Guest tearose]

I am so sorry pers, it was awful for you to have to go through that. I hope you are able to remember that there are many uneducated docs and they are unable to accept learning.

So many have shared their painful stories which also echo the seemingly never ending incorrect assumptions many make about people like us. We can look well one day and the next be unable to move...others want to "fix" us and don't understand how we daily continue to do our best.

As we all know, many doctors, friends, family, fellow workers are not all enlightened and when we are weak we are more prone to let the hurtful words and wrong assumptions bother us.

I nearly died trying to please others. Please don't go there! I do know it is very hard because you want better for yourself.

Personally, I have seen you nearly crawl to make it through university and your youthful life. I have been here six years and in that time you have managed to do your best all the time. Do hold onto all the forward progress you have made. Let these painful snipits of time move into the background. Learn to be strong in your personal advocacy and conviction and keep speaking up for yourself.

As for what I have lost...to truly list all would bring me to tears. I save this list to share only with God. I offer it up and receive grace and strength in return.

Instead of my losses, I want to share what I have gained:

I accept the human fact that although I have learned all the following, I must continue to work at practicing it all.

A live/growing love of all that is good, holy and vow to do all for the love of God/Divine.

Zen meditation ability.

Mediumship Skills.

Appreciation for the little things.

Sensitivity to those who suffer and dedication to community service.

Incredible friends, and family, a few who are true "spiritual soul family"

Once-in-a-lifetime teachers who showed me the way and let me walk, fall down, get up on my own and keep walking.

A deep appreciation for those who try to help me and others who have dysautonomia.

Unconditional love.

I'm working on my newest challenge "Acceptance" at this point in my life.

Sending tons of support and hugs to you and all here as this thread reminds us of our painful losses.

We are fortunate to have soul family here!

hugs,

tearose

[persephone]

Tea that was beautiful. Thank you. I am crying now. You are amazing. I'm so glad you're in my life.

[wibbleway]

I just logged in and was going to vent and I saw this thread so here goes:

Pots has taken away exercise... I was an exercise instructor now I have to use a walker with a seat.

It has taken away my independency....I can't drive

It has taken away time with friends...we make plans and then a bad day hits and I have to cancel plus I am in bed by 7:30 each night.

It has taken away my fun time with my hubby...we like to dance, travel, etc.

It has taken away my mind...it really can't remember much

It has taken away my running and playing with my grandchildren (I am 57 years old)

One more thing that grips me is hearing people say how good I look and how can I be sick. I push myself to do certain things and don't want to look outside like I feel inside. This disease is hard to explain to others...Hard for them to understand...People aren't aware of it...and you have to explain it constantly.

I could go on and on. This is the 2nd week of a horrible flare-up and I am so frustrated. Rest doesn't help energize me but I have to stay down right now. I get so tired of looking out the window and watching people coming and going but I have to lie here.

But....I try to remember that there are so many others who have it worse. God has blessed me with so much sometimes though you just need to grip. Thank you for the opportunity.

[stacdliw]

Dyautonomia has been life-altering in more ways that I ever thought possible:

It has adversely affected my critical thinking skills.

It has robbed me of my once rich vocabulary and replaced it with non-specific vocabulary words like "that thing"

I now have a memory of a 4-year old.

I don't remember how it feels to be healthy-- to have something not hurting!

I've lost friends who I thought who really cared for me, but who tired of my health problems. That really hurt!

I long for the day that I can wake up and feel rested!

I want to walk more than one block without getting out of breath.

I want to take a hot bath without exasperating symptoms.

I want to make plans without worrying that I'll be sick.

I hate that I have to force myself to do everything ( clean, laundry, cook) because I feel so bad

BUT THE ONE THING DYSAUTONOMIA HAS NOT STOPPED ME FROM DOING IS HAVING A POSITIVE ATTITUDE! I refuse to give in to this disorder and I continue to find little things to laugh at ( even at myself) and to appreciate life itself. It's not easy, but my life, my health could be much worse and I'm grateful for what I do have!

[dianne.fraser]

I'm with you Persephone. What do I miss most?

- exercise: I used to love power-walking around the lake, then going to the gym and slipping straight into my squats - ahhhh.

- being in shape

- having a career

- a social life

- knowing my family: I don't see anyone much anymore

- the normal milestones of adulthood, like marriage and children

- the endless possibilities of wellness

[Simmy]

Pee... standing up.

[abetterjulie]

I am so grateful for this thread. I have been grieving this week for things lost due to my illness. I came here to see if I was alone, and found that I am in good company.

I overcame and conquered so much to become a nurse. I am proud of the nurse that I was. I am so sad for the nurse that I can no longer be.

I miss the intimacy of an assessment.

I miss drawing up meds and knowing what they were all for and why I was giving them.

I miss chatting with my patients about ways they could improve their health and their lives.

I miss measuring things.

I miss being organized for something important, not just organizing to make sure I don't have to climb the stairs more than twice a day.

I miss confidence.

I miss being the nurse the new person turned to for help.

I miss my brain.

I am tired of doing word puzzles.

I am tired of trying to feel cheery that I ran the dishwasher today or that I cleaned the bathroom.

I miss taking walks.

I miss orgasms.

I miss that good feeling at the end of the day that I filled every moment as full as possible of doing stuff with real results. I am tired of being exhausted from four hours of sitting and doing things that are dull.

I miss my dreams of travel and exploration during my retirement.

I miss "me". I don't know who this new and fragile person is or what to do with her. She gets in the way, she is needy and insecure. She is fearful and doubtful. This is not the woman I knew. She is angry.

I sat in my bathroom last night from 2 am to 3 am just sobbing.

I am grateful for my husband and my children. If it weren't for my daughter, I don't think I would have the will to survive this. It just wouldn't seem worth it.

Thanks for listening.

[mieux7]

The ability to even respond to this thread in a meaningful way - even though I could vent for hours and the list would be endless. There's a guy next door to me, got to be 85 yrs old, who's painted the outside of his condo in 110 degree heat, without even looking tired. I marvel at people who can take their dogs for a walk or go on a picnic. I used to dance too.

Michael J. Fox called Parkinson's the "gift that keeps on taking" - I love that as a description of chronic illness. You get the gifts of compassion, letting go of control (what choice do you have?), learning who your real friends are, never judging anybody till you've walked 15 mins. in their shoes. But the takings...oh boy they hurt at every level - how can using your brain (or what's left of it) for more than 15 mins. make your body feel like you've got the flu?

My "plan" (HA!) has been to work through a great book called Chronic Illness and the 12 Steps - like AA but to help folks like us come to some "serenity" with our lot in life and appreciate the here and now. Haven't had the energy to start working on it yet.

Still, for me, I wouldn't trade this journey for anything. There's a great song, the chorus goes "God bless the broken road that led me straight to You." I'll let each of you interpret or name who that "You" is in your life. For me, it's been a total healing and renewal of my devotion to God. Or in the words of another song, a "broken hallelujah."

Hey, guess I did pretty good being coherent. Bless you all for being here and thanks so much for this thread. MStarr.

P.S. I had to give up on the PhD. All of you still working, studying, having a family ... wow.

[nmorgen]

Wow! I am so grateful for this thread. I have been feeling horribly depressed today. I am glad that I am not alone. I thank God for this forum and everyone of you. What have I lost- my future. It makes me so sad. I'll have to write more when I'm in a better frame of mind and not sobbing.

[Lizzegrl]

I love this thread. Thank you persephone.

POTS F*ing *****.

I lose my job officially next week and am waiting/praying for disability. It has robbed me of my confidence, job, looks, support of my only family, and my nephew. It may rob me of my house and independence if disability doesn't come through.

I hate POTS. Deeply deeply hate it.

My sis won't let me watch my nephew because I am not healthy enough. She won't talk to me much because she said she is done dealing with everyone's health issues. Mom had cancer, and sis says it ruined 10 years of her life and I'm not going to ruin more of it. She is my only family, really. My sister ***** too.

[Christy_D]

For my 15 year old son, he has lost:

His childhood.

He has not been to school in 1.5 years.

He can't play soccer anymore

He can't play baseball anymore(his true love).

He lost all of his friends, except 1.

No more girlfriends.

No longer athletically fit.

Everything a kid should be doing, he isn't and can't.

[erik]

Dreaming. I know I'm inconsistent and can't promise or endeavor to do much overall... so as I contemplate some ambition or envision the future, rather than feeling hope or excitement, I feel fear & loss. It is an odd "mourning"... not for something lost, but something that will never be. (This is a "bad attitude" thing on my part, I know, but you did invite "venting", right?)

[Kitsakatsa]

I applied for the FBI before POTS and a year later was granted an interview for Quantico, Va. I had to turn the interview down. I couldn't leave my support system and I had just been dx. This was an interview for my dream job.

What POTS has given me in return I cannot even describe. I have the full knowledge that I have a specific guardian angel. I have made connections with friends, who are also sick, on a profound level. My doctor and I are now friends. I am strong now and I used to be weak. I can say that I now have hope, faith and charity in my heart.

Kits