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Worried about taking on too much....


ethansmom
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Recently, I have determined that I am regaining 75% of my normal functions back that POTS has taken away from my life. While I am hesitant to make this determination, I think after 2.5 years with no relapses I can safely assume that things are at least on the uphill slide for now. I've had a few bad days but generally bounce back pretty quickly.

That said, I am thinking about working on getting my life back, a little at a time. But I am so nervous that if I try to do too much, something bad will happen. We just moved and there are so many oppurtunities here in the city...and our e-Bay business is really doing great. We've decided to put Ethan in child care part time so I can have time to work at home and maximize the potential. That way I can still feel siuccessful and have my time with him in the afternoons (and yes, my nap, lol). I also have an appointment with a college advisor this week to see about registering for classes next semester. I am excited to start my undergrad, and am probably looking at majoring in Child & Family studies or Child Development. AND I am working on my IBCLC (lactation consultant certification), in addition to our always active social life.

I don't always feel great, but I really feel that my POTS symptoms are under control for the most part (either thanks to the meds or a slow recovery)- my most plaguing problem is always fatigue. I am seeing a new cardiologist at the end of the month and a doc who specializes in CFS/CFIDS and fibromylgia in 2 months. I guess they can assess my progress at that time, but in the meantime I am just so nervous about taking on all these obiligations- although eternally grateful that I've come this far from being bedridden. Any thoughts? I just wanted to share my feelings with those who can relate =)

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Jessica,

I am so glad you feel as though you have substantially improved and are getting your life back! I would also be worried, but I know my chronic worrying only gets me into trouble and makes me feel even sicker. So my advice is: Don't think before you do. This is, of course, the exact opposite of what we are taught in kindergarten. But I think if you don't just get out there and try to do what you want, you will just be limiting yourself.

The worst that happens is you take a step backward. If you never try to move forward, though, is that the kind of life you want to live? I wake up every day and even though I feel like I am about to drop, I keep exercising, taking care of my baby, working, etc. I frankly have come to the point that I refuse to give in to illness, and if this means having to walk around with POTS, so be it. I am not going to lie in bed all day because that feels better. That would be no life for someone my age.

I feel like I think way too much now about what could happen and catastrophize. Like what if I pass out? What if I exercise too hard and drop dead? What if I don't get better by next year? and so on. Sometimes we need to stop thinking so much.

Of course, this is just my opinion. Again, I can understand how you would be hesitant to go back to feeling awful, but the chance of you being just fine is much greater. Just proceed slowly and be reasonable in your expectations and what you can handle.

Good luck!

Amy

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jessica, i guess all i can say is, you will find out soon enough if you are doing too much. i am so glad you are feeling so much better, but i would caution you not to try to do everything... you may pay the price and there's no worse feeling than a relapse when you've thought you were all over it. i would just add things gradually. kind of like titrating a medicine. do a little more each week and see how it goes, then when you reach your threshold, stop. i wish you the best with this, you sound very happy despite that little worried tone! lol. good luck, morgan

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Woohoo! Go for it!!!

I was almost housebound and not far from bedridden 3 years ago. (POTS is not my primary diagnosis, although I have many symptoms of it along with many, many more that come with the dysautonomia condition.)

I am now working full-time-plus at my office job, teaching 5 hours (straight, no break) one evening a week from home, and playing piano for weekly rehearsals of our community chorus plus the shows 3 times a year, 5 performances each time. Sometimes it is a little rough, but I've been able to go so far this year with only using 1 sick day - and that was because I had gotten into some smoke, which I'm extremely allergic to.

The office job is certainly easier than being a school teacher, which I had to give up 11 years ago. I still don't feel that I could go back to the classroom setting, but knowing my limits makes a huge difference in my approach to everything. I make sure to take advantage of my down time now instead of jumping into the next errand or social engagement. My priorities & planning have changed to benefit my health, but I'm leading a full life again. What a joy it is! You can do it, too. Yippee!

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Jessica,

I'm very happy for you things are working out this way. I think you have to enjoy this time as much as you can and you should go for it (although you shouldn't overdo) but I think it's very important to feel succesful in your work as much as it is to enjoy being a mother and maybe even get a social life again :D . Try not to worry too much and yes when things would get worse (which doesn't necessarily has to happen) you will feel awful but hey your life is NOW and you just have to enjoy it and do the things YOU want to. Hope you understand what I'm trying to say it's just that brain fog that keeps me from putting every word in the right place. Wish you all the best Jessica,

Corina

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Jessica I am so proud and excited for you. What an inspiration you are to all of us. If you are thinking about it you are half way there. Just go for it with all you have. Everyday will teach you what you can and what you cannot do. I work full time, study, socialize and run a home at nighttime. Plus my two black spaniels... real babies. You are the only one that will know when you can do what and when you cant. I hide allot from my work. Days when I am bad I sit and work behind the computer. On good days I try to do physical things. But I must be honest I sometimes over do it and then I have to remember that I am sick and recuperate for a few days. Basically go for it and give it all. I don’t try and explain anything to colleges as they just don’t get it. When you do get sick and they notice just explain simply and hope they get something. David should keep an eye on you. Mario often has to remind me that I can’t take on the world and that I am sick.

Get a dishwasher! If you start working it is a must. :P

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Jessica:

I just wanted to wish you well in your upcoming endeavors! I don't blame you for wanting to 'go for the gusto" now that you're much improved from where you were when first diagnosed. As for the worry, I think all of us that have experienced significant waxing and waning of symptoms (as I suspect most do, as this seems to be a hallmark of many forms of autonomic dysfunction) always fear we'll relapse just as we take a bold step to reclaim our lives. My vote is this: don't let this fear hold you back! Make the very most of the good days!

Best to you! Keep us posted, OK?!

RunnerGirl

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