Jump to content

What Are People's Main Goals This Year Re: Pots?


Recommended Posts

Hi Guys

I would be interested to know if people have set any goals for themselves this year. It could be anything from excercise more, change diet, be able to walk a certian distance or participate in an activity, work etc And what are people doing to achieve these goals?

Aussie

Link to comment
Share on other sites

My biggest goal would be to get my old life back. Of course, that probably is pretty unrealistic LOL. :blink: Sooo...I'm thinking baby steps. Definitely more exersize, I'm giving a new diet a go (actually starting yesterday, so we'll see how this goes!), and I'm trying to keep a more positive outlook. I had been making progess over the past year, but feel like I suddenly hit a brick wall and then went backwards over the past month or so. I think this is because I overdid it. Whatever I am doing isn't working so well anymore, so my plan for this year is to go back and start again. This time, I am going to ease into exersize rather than charge into it like before; and the biggie is that I am telling my friends that they may see a lot less of me and I am going to make it my goal to not feel guilty for not participating because right now I just need to focus on me. This is not so easy for me, because I have always been one to say "yes" no matter what, even if I feel terrible. But I'm realizing this hasn't been healthy or helpful in my recovery, so I'm going to just focus on doing little things to try and get better, so maybe one of these days I can go do all those things again.

Link to comment
Share on other sites

To have more good days than bad and continue on this path of identifying triggers that cause my crashes.

Right now I'm only functioning 50% of the time and most of that 50% is feeling really lousy. So if I could get to 60% and feeling a little better, that would be good. I've already had improvement on my functioning days with the addition of high dose antihistamines and adderrall. So I feel good about the progress made thus far.

In my case I'm not too hopeful that I'll ever be back to my old self so I'm ok with one day at a time slow progress. Hopefully over the long term I will get better slowly, but if not, I'll learn new ways to cope and function.

Eventually (but not this year) I'd like to be more involved in promoting Dysautonomia awareness in my area.

Link to comment
Share on other sites

Oh goodness,i have many. First is to wait patiently for my specialist appointment while increasing my upright endurance, then hopefully get my stamina back enough to return to work. If i could just stop the arthymias and stabalize bp i could get there. It sounds so overwhelming since ive been housebound since october but one step at a time...literally. =) i would love to get well and do the local mud run for charity in two years.

Link to comment
Share on other sites

My goal is to not say "huh, what the heck does that mean?" when I read some of the posts, articles and studies on here about Pots and all things related. ;)

I'm currently taking on-line university courses in Nutrition and Physiology to hopefully have a better understanding of what is going on and where I can improve. I've already made a few dietary changes and my plan is to try to create an 'optimal' diet based on my current circumstances. I don't expect any quick fixes, but I'm hoping that over time it will make a difference. I would love to actually feel well enough to want to do things again.

Exercise has been an "epic fail" (as my son would say) so far, but I'm still slowly working on it and hoping for improvements there too.

What are your goals, Aussie? :)

Link to comment
Share on other sites

These are all really good goals guys!

My main goal is to try to get to a point where I am largely asympomatic from day to day and can walk comfortably for an hour.

What I am currently doing is keeping a diary of my symptoms on a daily (not in an obsessive way) but trying to identify if there are any patterns betwen what I eat, how I sleep, what excercise I do, what supplements I take. I must say I am yet to identify any patterns!

That's what can be so bizarre about this business in that in my experience you can be fine for months, then the symptoms come back for months, from day to day I can feel very different and even within a day I can feel normal for hours then suddenly quite lightheaded and strange and feel like I really need to lie down.

I can identify some obvious triggers such as hot weather but often there doesnt seem to be any logical explanation.

Link to comment
Share on other sites

my goals are to function enuf for work, take loving care of my son, and be happy, need to start yoga again (i've slacked for a minute). anyway, i think that your diary is going to be so helpful, may even determine food allergies for you. for me, i am starting to believe that my pots flares are stress related on top of something else, which i thought was bs in the beginning. idk, tho. i know there is another element mixed in. waiting for 23&me, if my brainfog can't figure it out maybe someone else's good day will!

Link to comment
Share on other sites

Ha, just answered this another post. I have no idea, and I wish I knew! It just went away. Slowly, over 2 years it just got better. Almost like whatever was wrong in my body healed itself or repaired whatever was wrong. I didn't question it too much - I was just grateful that it was gone and I was back to normal!

Now that I'm in a relapse again, I have thought about what could have made it better, but I can't really think of anything.

Link to comment
Share on other sites

I would like to find out the cause of my dysautonomia. My appointment at Vanderbilt is in May, so hopefully they point me in the right direction. I had an appointment with my endo last week and he said we explored everything there and all the tests came back normal. Cardiologist says the same.

As to my daily life, my goal is to be able to drive, at least locally; be able to function at 75% of my old self and take a trip to Japan I had to cancel due to getting sick. I would like to feel well enough to reduce my medication, if not get off it. Right now medication allows me to improve. I am able to gradually increase my activity level and exercise. I still have bad days when I can't do much, but no really bad episodes for the last 2 months even though I do more. I used to get episodes that put me in bed for 2 days from just loading a dishwasher or walking outside. No more. I hope that I'll continue to improve.

Link to comment
Share on other sites

I have realized that most of my goals are more of wishes. Like most here to get better, find the cause, to get to my old self, to find a doctor that really connects with me and helps me.

But while I wish for them I guess my goals are to be more patient, and to learn to deal with this better emotionally, to try and live my life while dealing with this, to not allow this to take over my life as it has. To enjoy the little milestones, and maybe not push myself so much. I am so discouraged when I can't do the things I used to- like go up and down stairs, or work my normal hours, but I need to realize that I am maintaining myself at a higher level than a year ago.

And one other goal, to figure out a way to pay all my medical bills. Hopefully I will figure out a way to make money, creatively from home.

Link to comment
Share on other sites

I want to try the "exercise helps" approach and start building up my endurance again. Ultimately I want to be well enough to work, exercise, and drive long distances. I would like my life back. I know it doesn't happen easily, but I'm willing to exercise til the cows come home if it will help.

Link to comment
Share on other sites

YolainBlue - I would be interested to know what tests the doctors run to determine the cause of your POTS.

In Australia it seems that we are not as advanced as the US and so far my cardio feels that there isnt a lot of point in determining the cause of my POTS/NMH.

I would actually like to know whether there is any underlying condition causing it. I tend to suspect not however any feedback you have would be great!

Link to comment
Share on other sites

Mydoggielovesme2, I'm also giving the Paleo diet a go (today is day 3 for me). Hope this is at least partially successful for both of us!!!

Link to comment
Share on other sites

Will do, and you can do the same! :) It isn't going to be an easy change, but I'm starting slowly and working my way into the diet lol Wishing you the best as well! (Hey, I figure, it can't hurt, right? And at this point, I'm willing to try just about anything!)

Link to comment
Share on other sites

Number 1 goal: is to continue to keep looking at my disease from a positive perspective and a happy one. To be even more thankful and grateful, despite what we fight. This attitude alone has helped tremendous this past year as a goal. Im not perfect, so i have more work to do.

Also: I plan to start a hobby, woodworking. I have wanted to do this since i was a kid and now is the time to start.

I plan to try to wean off meds after 10 years of suffering.

I plan to continue to take control of the things i have control over, even if it's not my body. I can control my thoughts, outlook, attitude, diet, etc.

I plan to keep diving deeper in my meditations.

I plan to create a better me from inside out :)

I plan to love and support and share it.

I plan to find more inner peace :)

~tennille

Link to comment
Share on other sites

I would love to get back to where I was this time last year! I was also in a two year remission that came after I had my first baby. I don't know if it's related or not as I've always had ups and downs with my POTS, but I honestly felt the best I had in my life after I had her! My hubby jokes that we just need to have another baby! Ha! I'm going to strive to do yoga at least three times a week, eat mostly things that are beneficial to my health, and keep my mind calm. Basically, focus on controlling the things I can, since so many aspects of this are out of my control! I really have to work on the worrying aspect. I always worry about what my health will be like in the future, if it's already so crappy in my 20's. I also worry about my daughters having this, as we can see a bit of a genetic factor (I have it most severe). "Que sera, sera" will be my new motto! Whatever will be, will be! :-)

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...