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How Long Have You Lived Functional With Dysautonomia?


kim5204
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by functional I mean do house work, cook, clean a bit, grocery shop once a week . I just recently been diagnosed and would like to be real about whats comming.

I have a nanny that helps with bathing the kids, mowing lawn, , cleans bathroms, can no longer do that.

how do your symptoms progress, stay stable years etcc. I cant seem to find much and would like to before able to plan my husbands work he currently works away often and may need to look for something closer.

would love to hear how people cope dysautonomia, gastroparesis, tachyardia, breathing issues how they change? as time goes by. thanks kim

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I am functional but, with many limitations. I have had dysautonomia many years but, in 2006 things began to worsen. So, it is a decline but, seems to be a rather slow decline in the scheme of things. I think we probably have periods of rapid decline, then stabilization, then more decline. I still work full-time but, at a desk job. I don't do much housework - have a housekeeper for most. No heavy lifting, no exercise, occasional walk around block leaves me exhausted, not digesting food very well anymore - I expect to continue to decline over the next few years but, I have come to terms with my disease and try to accept whatever is thrown my way. It would be very easy to become depressed but, that is a dangerous door to open - try to stay positive - enjoy your kids - find the fun in life you can participate in and do it! Don't dwell on the "what if's" and "what might be" - just deal with everything on a day-to-day basis.

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I think this varies greatly from person to person. My first year and a half of POTS was so difficult. Every time I tried to push myself and be functional, I would crash hard. I ended up out of work for almost 4 months last summer. Thankfully, about a year ago, I started mestinon and it really helped me a lot. For about 10 months now, I have been working full time. I also have been exercising somewhat regularly. I've been running again, and my daughter and I are testing for our yellow belts in karate in a week and a half. I also cook and clean and am even working on starting a cake decorating business on the side. I definitely don't feel exactly like I did before got sick, but I would say I am very functional. However, I also now know my limits. When I'm having an off day or start to feel dizzy, I know it's time to take a break and lay down with my feet elevated. I've learned to say no to things when I'm out of "spoons" and how to take care of my own needs. I have had some issues with EDS-related stuff and I developed small fiber neuropathy about 6 months ago, but compared to the constant dizziness/tachycardia/fainting....I'll take it!

I do worry that I'll run into a major flare again sometimes...but for now I'm just enjoying life. I definitely won't take being able to stand up or walk around for granted ever again! I agree that taking life a day at a time is very important.

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I had to stop working 2 1/2 yrs ago but have been sick for 6 yrs. For the few months leading up to and after quitting my job I was much worse which I attribute to not being able to rest as much as my body requires. In fact, once I quit, I ended up having to live at my mom's for a while and I slept almost 20 hours a day for the first 2 months....my body was fried. I've had a few set backs that have all turned out to be caused by reactions to medications, but I am better than when I quit my job. It's because I've learned my daily physical limits and my requirements for rest. So, I'm not well enough to go back to work but I am back at my own house. I get my indoor housework done. I am seriously heat intolerant so my step dad mows my grass. I still occasionally need to ask my mom to run an errand for me. But I guess once we got some of the basics of my pots figured out, I have not gotten much better or worse.

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It seems that many people live a full life without much progression, while others quickly progress. I guess it depends on the issues and possible complications faced.

I have had less serious issues for many years, but was able to stay 100% fully functional. Then one day I fainted, and that landed me in the hospital. The tests showed numerous issues, but once I got on proper medication I became mostly functional again. From that hospital stay, things slowly progressed, but I managed to stay functional. Then I recently had a episode with a seizure that landed me in the hospital in bad shape. I lost a lot of function that I dont think is easily regained. I am trying to go back to work after a month off, but I cant get much done and this seems to be quickly coming to a end.

The two times I had stays in the hospital, I left in drastically worse shape then I was before. First I developed mostly cardiac and neuro issues. My biggest issue being fainting. Then this recent stay, I had a worsening of my previous issues, and much worsening of GI and neuro issues. Currently I am really struggling with controlling pain, the GI problems, trying to avoid a feeding tube.

I was born with disabilities, and as a kid I always thought I had it so rough. Now looking back, those were just bumps in the road. I am really hopeful that with some treatment I can at least continue working.

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Seven years...Every day/month/year is different. Good days: exercise, walk or recumbent bike, cook, clean, drive carpools, work part time, yard work, enjoy family. Not so good days: cook or clean or exercise or work, can only do one. Bad days: me on the couch. More good days than bad.

Take good care of yourself, go at your own pace, plan ahead, find some kind of exercise you can do on a regular basis, learn to say no. Your story will not be like anyone else's so stay positive!!

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