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Talk about erratic? I'm up and down like a yoyo!


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Persephone, I'm going out on a limb here, but do you have a therapist? It just sounds like you are not coping well at all. This is a disease that's completely unpredictible, just by it's very nature. It's very important to learn some type of coping skills, other than, I must stay here and hoping everyday is going to be like a good one. If sheer will power could get us all through, we'd all be healthy.

I've had a therapist for many years, as have many on this board and I think most would agree they are life savers when you find a good one. I realize that you are having problems with the disabilities people, but most people do. My son struggles continually and he just goes to a modest junior college. He does not aspire to your heights, but suffers from the same forms of apathy and non response from these people. He just perseveres (sp) until it gets done.

We all get frustrated and down, it's impossible not to with this illness, and we've probably all been embarrassed about stuff that's happened in public. Imagine having kids and what they have to deal with when mom faints in public. It's very difficult for all of us.

The difference is how we deal with these stresses, and how we cope with the indifference, the oddball symptoms, the psych diagnoses, all of it. That's where the therapist comes in. They are objective and can help you sort out what you are going to stress over, and what isn't worth stressing over.

I in no way mean to down play what you are going through at all. I find many of your posts to be full of frustation and pain. We all feel this way. Some cope and some don't cope as well. We all have pressures, some monetary, some kids, some loss of work, homes, some school. We all have suffered losses due to this disabling disease and it doesn't really matter what our stressors are, the result is the same.

As my doctor says, I am not crazy, but this disease is making me crazy. So I choose to try and find someone to help me with coping mechanisms. This is a wonderful site and I enjoy coming here, chatting, discussing things we all have in common and trying to support people. But at some point, for most of us, something more intimate and personal is needed.

We all feel badly that you are struggling, and know your struggle is big, but maybe at this point it's too big for just this site.

I say this with a caring heart and as someone who's been there, trust me. You would be amazed at what a one on one discussion can do for you from a very objective standpoint. I hope you are not offended, this is not meant to be cruel. It just is what it is. A suggestion....acaringmorgan

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I apologize in advance because I know that you don't want to read what I am writing but since you are talking about the same problem over and over again I feel that you need to know it.

You need to accept your limits, mourn your losses and find professional help to get you through it. Then you will have a better quality of life.

I was there before and I know what I am talking about.

You alone can make the decision


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I just started seeing a therapist over the summer and I have found it to be really helpful. I previously had a very hard time accepting the ups and downs of POTS. Like many, some days I feel like I am almost fine, and then other days things come crashing down. I would freak out after each crash and rfrantically call my doctors, who didn't know how to help me further. My therapist has helped me to cope and to realize that the ups and downs are part of the package. I am better able to handle the bad days because I have realized that there will be good days again ahead.

The other thing that I wanted to say is that I have had to put my career on hold because of POTS. Like you, I attendeed top schools. I had a prestigious job, but I could not handle it and had to switch to working part time. Although this was a difficult decision, it turned out to be a very wise one for me. Overextending myself last year made me worse. Scaling back on work has enabled me to focus on my health and my POTS has improved.

I know we each have to deal with this in our own way, but just wanted to add my two cents.


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Its kind of hard sometimes as you feel like you cant win ... one side tells you to be sensible and acknowledge your limits (or to just face the situation and stop whinging) ... the other side tells you that you can do anything you want to you just have to try hard enough (and to get on with it and stop whinging).

Its hard when both sides have good points and all it does is make you want to whinge :)

I admire the fact that you have gotten as far as you have ... you are living many a persons dream (apart from the illness side) and i admire your perserverence. Just remember its not a race and you can take your time (i really hate it when people say that to me .. so i will slap myself for you)

Glad you are feeling a bit better now than when you wrote your initial comment (i am unsure of what it said .. hope my response is kind of in the ball park and as i am unsure of what it said please dont think i am accusing you of whingeing .. im just saying i think its a common reaction to events)

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I know that I could not handle a lot of things without my therapist. She is teaching me different relaxation techniques, and I can say anything to her. I let my hair down to her so to speak. I try to stay upbeat for my family and friends even though sometimes I want to scream. She helps me just by listening sometimes. I am so glad that my family insisted on me going. Even before I knew that anything was seriously wrong with me. I wasnt coping just being sick. You need to try it. I can not go without my life coach as I call her. She is great! There is no shame in talking to someone that can help you with words or just a big shoulder.

Hang in there, Find your Peace, Try Meditation. Sometimes it works for me sometimes it does not.

Hope you start feeling better real soon . Sending you a great biiiig bear hug. From me to you.

Vanessa (theycallmemrsglass)

sorry- I felt too sad earlier today. I'm better now so I've taken my rant down!

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Hi Persephone - I also did not get to read your original post but just wanted to add that my thoughts are with you and I have also sensed your frustration. You are a very determined person, and I admire you for all you have accomplished despite your illness.

I know for myself I have had to make some pretty major life changes in order to get well. It took a while to "accept" that I could not do the things I had planned in my early 20's to do.

For myself, at 34, I have realized that I do NOT do well under pressure and stress. To the point my health deteriorates rapidly.... So I have had to cut out a lot of the daily stressors that a fully healthy person is able to handle....

For example Instead of going back to a traditional full time school to finish my degree I have chosen to pursue my degree online with only a week residency on campus......

I make sure that if I have a lot of upcomming events that I plan accordingly and take a day "off" in between to veg out a bit. Or take the day after to do so.

These are the things for me that have slowly but surely given me better health and a much better quality of life...and in the process I have found that I physically feel better and then can just naturally do more...... .... and when I have set backs I have to try and accept them and rest and not fight it. Its not easy believe me I know.

Please do not think I am preacing to you..... I just wanted to share what has worked for me so far...

and I agree with the others that having a couselor to talk to can do wonders to help .

Take Care of yourself and I am senidng good thoughts your way! :)

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Sorry I'm a little late in responding. I've been seeing a therapist since I fell ill and I can't imagine facing this horrible condition without her. You may want to look into the councelling services on campus so you can find someone who may help you deal with the stresses of being sick and in school.

Good luck and I hope you start feeling better.

- lauren

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