Recovery

[EarthMother]

You know I've been thinking about this issue of recovery for some time now as I see more and more YouTube videos with young women documenting their onset of POTS and how they are facing life with a "chronic illness".

When I was 20 years old one of my Docs told me I had "tachycardia on mild "exertion" ... I never had a label of POTS until about half dozen years ago. So in the near 20 years prior I simply had times when I was very ill and could not function, sprinkled with times when I was very functional. I never believed I had a chronic illness, I thought I just had "frequent" illnesses. I didn't even relate one episode to another since they each had some subtle differences (though always the orthostatic intolerance ... but heck sick people lie around alot right? ... or so I thought.)

I wonder, what life would have been like if I had a "diagnosis" at age 20. If someone looked into a crystal ball and said "You have a permanent and life long dysfunction of your autonomic system. You will have years, sometimes only months of feeling relatively normal followed by months (occasionally years -- yikes!) of times when you can barely walk at all."

How would I have changed my life's plans? Well I would have made sure I had better disability insurance for one thing! But what about my decision to have three children? Take on a challenging and stress filled career? Marry a man whose own life would be forever changed because of the burden living with a chronically ill wife? And what decision would HE have made if he knew then what he knows now?

Ultimately there is no crystal ball. We can believe what we want to believe. But in the end we must face THIS MOMENT just as it is .... and if we are brave enough ... we face that there is NO KNOWING of what the next moment may bring.

Salubrious.

~EM

[Kitsakatsa]

I just know what Dr. Low told me. I have non-viral but unknown cause POTS. He said that most rapid improvement is seen within the 3-5 year range. He said they thought that they were seeing that everyone was recovered at year 5, but soon realized that the patients they were following had simply just periods of remission and then symptomatic periods again.

I have had POTS for 5 years with the big bang anniversary Dec 27th. I am and have always been symptomatic everyday. I think sometimes I am psycho and I probably am. I have to talk myself through every daily task, even now. I think my period for improvement is over and I am left with the way I am feeling now for ever and ever.

I am exhausted most of the time and nauseated all of the time. I have a deep envy for stay at home moms and I struggle with my feelings to trip them in Target, where they all seem to congregate. I probably will never have children and never be able to stay home. All of these things seem very unfair.

But,

I made gingerbread cookies tonight and it was hard, but I did it. I stood too long and they turned out just perfect. I may not recover or have the life that I want, but who can ever say they are so proud of themselves for pounding out a tribe of gingerbreads? Our bodies may not be perfect, our lives may be far from perfect, but there are simply perfect moments that we can all be proud of because we are up to bat, and we are trying.

[calypso]

I have no idea what the future will hold for you, but I found that I at least felt emotionally better when I hit the acceptance phase (following a couple years of anger, grief and denial). I am still somewhat impaired but do most of the things healthy people do (exercise, work, have children, etc.).

I might feel normal again someday, but I am not going to hold my breath. Try to focus on the positives of your current condition, and hope for better.

[ramakentesh]

I think one of the most predictable things about POTS is that it is unpredictable. So sure any one of us could wake up tomorrow completely recovered forever. It happens in other diseases with somewhat similar presentations to POTS - 20% of patients with M.gravis go into complete and spontanious remission.

I experienced definate improvement, and I do get bad boutes still after 5 years, but im better equiped to manage them now I know what it is.

I just dont really think the docs can make generalised statements about the prognosis when there arent any proper studies examining it yet. Most in Australia would suggest that its not progressive but it may hang around indefinately.

[mattsmum]

actually, I was told my POTS would get WORSE at menopause.

NOOOOOOOOOOOO say it isn't so!

[runningshoe]

Hi

It is a fine balance - hope and acceptance. You need to remain hopeful for better health while still accepting where you are now. This is the challange with a chronic illness.

I am two years in with pots. I am much better but still have symptoms from time to time. I would say my illness is managed, not gone. Since pots can be caused by so many different things it is hard for us to compare to each other. My dr said originally maybe 18 months. Recently he told me that he is seeing pots patients able to come off meds after 3 years.

I can live with where I am now. I ache to run again but so far that doesn't seem possible.

Remain open to the prospect of healing....

Happy holidays!

[Katja]

NOOOOOOOOOOOO say it isn't so!

actually, my grandmother suddenly got a lot better at menopause. I guess it varies with every person.

[ramakentesh]

As a word of hope - the research bodies studying POTS are pretty close to understanding the primary causes of the condition (Dr J Stewart in NY, the Baker Institute in melbourne, Australia, and Dr Grubb) - so with that will come better treatments and possibly even a cure.

I just hope they find that each subgroup of primary POTS has one particular cause so that it will be easier to treat, rather than the current balancing act: (increasing blood volume to compensate, but trying not to overly do it so that it also increase sympathetic activity, while trying to reduce sympathetic overactivity without overly doing it so that it decreases blood pressure).

[Guest tearose]

humbly, I am the definition of hope!!! As are many others.

I have had POTS since 1991, I have gone through surgical menopause and still I hope for a cure, lasting improvement, something better...it has been many years.

Like a recent post by Lina, those of us who have had to live with this a long time, have learned to, "... live where we are now," have hope for better but accept what is and live as fully as possible.

I should have moved out of this syndrome a long time ago, according to some of the literature. We are all different and I think it is because I have fought to hold onto as much strength as possible that I have have not become/ slipped into an MSA or PAF or PD diagnosis. I keep trying everything to keep my body balanced and my brain cells alive. It has been a constant, constant, constant job since 1991. Taking care of my ADL's with hyperadrenergic POTS and unilaterial lymphedema with grace, dignity and compassion has been a lot to do. EVERYTHING else has been an additional unexpected blessing. The only constant has been the fact that they still don't understand this syndrome... I have been waiting since 1991 and will continue to hope for the specialists to figure this out.

Recovery has not happened for me. I have times of remission and times of relapse. I continue to have hope for a complete recovery.