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How Have You Come To Terms With Having P.o.t.s?


Green48
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Thank you for this forum…

I am so angry about having P.O.T.S. I use to cycle 156 miles per week. I jogged, hiked, and worked in the yard and garden. I caught a virus 6 years ago and my life has never been the same. On a good day I am able to drive the car to the grocery store and do the shopping, but I am wiped out the rest of the day. On a bad day I’m not able to drive, much less get out of bed, or off the couch. The low blood pressure, dizziness, tachycardia, migraines, vertigo, and exhaustion are crippling. I never dreamed that in my 40’s I would be such a mess.

My husband has been great and I thank God every day for his strength and support, but this condition is a challenge to say the least. The doctor’s (Family Physician, Cardiologist, Neurologist), Physical Therapist, and Therapist all tell me I should be grateful for what I can do, but it is tough, for I want my old life back. When I push my limited physical boundaries, I end up incapacitated for 4+ days. I drink the fluids, ingest the salt, take the meds, rest, do the physical therapy, etc. but I am having a very hard time accepting this chapter of my life. How do others come to terms with this condition?

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You sound blessed to have such a great supportive husband. I find that it is far easier for me to come to terms with my AAG dysautonomia than it is for my friends and family. I have learned to live with my limitations and know what triggers a crash but, my family and friends...not so much. They want the old "me" to keep on trucking and often make demands that are unreasonable and dangerous for me. When I attempt to explain why I shouldn't do whatever it is they want, I get the rolling eye syndrome and the "yeah sure" answer. Of course, I want my old life back but, I don't live in the past - I take it one day at a time and count it a good day if I am able to go to bed comfortably at night. I just wish my family would attempt to understand and lift me up a teensy weensy bit. I'm a tough old bird and don't need a lot of touchy feely support on a daily basis but, there are times I sure could use a helping hand.......

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I know this is totally cliche but, I just make lemons out of lemonade. I will occassionally slip into anger or disgust or self-pity for a few hours but that's not doing me any good, so I choose to make the most of it. Granted the "most" might only be watching a movie in bed, but, what's the point of wallowing in it? It really is a life choice. I don't mean sit back and just let yourself waste away. I mean take what the reality of the situation is and make the most of it with grace and dignity. I think I have found a balance of accepting where my body is and advocating for myself to reach a healthier state.

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I think this is a great question that we all wrestle with in different ways.

I too am in my 40s. I have 4 kids and a wonderfully supportive husband also.

At first I dealt w it as a battle. Any energy I had went to proving to the doctors that I had something wrong- that it really wasn't anxiety disorder. That lasted 6 weeks. And then, the new battle. The much bigger and not so easy battle of figuring out how to live. I used to focus on the days. I would have some good days, and some bad days. And although now I still have some days that are good and some days that are bad I no longer talk about or think about things in terms of the day. I try my best to live each moment as it comes and really focus on making the most of the moment. Every plan is subject to change (at the last moment) and every moment I feel good I try my best to enjoy it. I don't think about what might have been if only and I am not angry at God for where I'm at. And although I allow myself to cry sometimes (actually think it helps my parasympathetic system) and at times I do feel sorry for myself, I don't let that mentality stay around long. Now, the energy I have is spent in this priority: God first, family second, and any energy I have left is spent researching this condition (POTS, MCAS, NMS, etc) and better ways to treat it.

In March I started exercising with cardiac rehab. It was pitiful- dark sunglasses, earplugs, could barely do 15 mins on recumbant bike. But, Yesterday I did an hour long circuit training workout w a trainer- almost all upright. So even though I've spent most of this day thinking about my severe flushing episode this morning where I had to sit on the floor and convince the clerks not to call 911, and even though I sat in the parking lot for 2 hours before my husband and his friend rescued me and brought me home, I still celebrate the accomplishment of getting out and trying, and having improvement in my exercise abilities, and I hope one day I will be on a treatment plan that helps me get back closer to my old normal. But until then, I am thankful that my real hope is not in medicine, and thankful that I have time to enjoy a slower way of life.

I should also give credit to so many of the participants on this forum who inspire me to keep moving forward- including E and Katy

above. :). I notice you are newer to the forum. I want to encourage you to join our discussions as much as you can. There are so many really neat people on here. I'm sure you'll be inspired too.

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Great question! I am not a person that has POTS but I am the parent of a daughter that has POTS. She has had it for 16 months and I have gone through many stages so far. Hope, fear, etc. Now I am in the anger stage. Angry that a 24 year old has to be basically bedridden. Angry that such a good child has something so bad happen to them. Angry that there is nothing I can do to cure this.

I'm sure this stage will pass and I will learn to deal with this better but right now I am just MAD!

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When you go from being "normal" to having a disabling chronic illness, it is a serious shock to the system. It's traumatizing and we all deal with it differently. Who wouldn't have strong emotions. I was never angry, but I was scared/paralyzed out of fear to do anything. I was so cautious and scared that when I did do things I was too worried to enjoy. It has taken me years to break out of this.

Like Kelly I have learned to live one moment at a time - not worry about the future or regret the past but rather focus on what I'm doing at the moment. The other thing that I did was stay busy - whether through Netflix and audio books when I was to tired to move, reading about POTS to yoga and work when I was able to be active.

Tonight I met a bunch of people I used to work with. One's daughter is mentally ill but refuses treatment, another lost his wife in a car accident, another's brother got shot in Iraq and has PTSD, another doesn't have a job. All these people were beside themselves for different reasons. I'm not sure POTS is any better or worse than this. Everyone has serious problems. I am sure that if I didn't have POTS it would be something else. When I was healthy, my job was eating me up and now I realize I really had no problems back then, but I didn't see it that way. Mentally I will never be the same as before POTS, but maybe I am actually stronger now than I was before. POTS has made me see the world in a different way.

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I fought so hard for so long to get a diagnosis that I haven't really had a chance to get mad about having dysautonomia. I've been plenty mad at some of my doctors though! The struggle changed me for sure. It made me focus on myself, care about myself, and fight for myself. After all that, I just can't see me getting mad at myself or the disorder that snuck up and became a part of me.

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Thank you all so much for all of your supportive comments. I printed them off and my husband also read thru them. He to has wrestled with his emotions as related to my illness. He received comfort in knowing he is not the only one who has had to drive some where to pick up his stranded/incapacitated wife. I continue to be conflicted on those days I feel stronger and more moblle. On these days, I tend to become very optimistic when it comes to what I think I am able to do as compared to what I can actually do. It has been very hard for me to ask for help from my husband, friends and family. I use to be so independent, but thru time, prayer, being referred to DINET and joining the forum, I am learning I am not alone. I am learning to ask for help and learning to let go of that person I was before, but it is hard....Thanks again to all of you!

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I don't have POTS myself but have a son that was diagnoised last December by the MAYO Clinic. My son is 12 and his symptoms got much worse this past summer. I had to quit my teaching job because my son was not able to attend public school. This was a big change for our whole family. As a parent, I want the best for my son but there are days I just wish I could have my normal life back.

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Living Whit cronic illnes has a mulittud of challengeses. From dealing Whit the stuff health wise, too How it criples on life unoter ways. Its not fun, but it is what it is. And living Whit This for soooo many years now, well Its Made me into the person i am to day.

For me it has been importen to enoy the things i have been Abel to at the time. Like a good movie or tv show. But also to grive When needed, gett the frustraition out.

Try to se the positive Whit out totaly ignoring the bad. Rigth now i am gratefull for the first improvment for years. Although Its still fare alway from heatly. And all my Energy is spent on my 11mth old boy. I never thought i would be a mum:)

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