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Hobbies for people with Dysautonomia


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Hey Guys-

    Lately I have been really down because I don't ever really do anything. Pretty much I come home from school and I watch TV and practice cello, and maybe do some homework. But that is all I really do. I am always too tired and always have a headache so I never really want to to anything. I like reading, but it takes a lot out of me, and I can usually only read for about thirty minutes before I fall asleep. Do you guys do any like low-key things that keep you busy? I am really tired of being a couch potato all the time, and I am willing to do something I just need ideas. Thank you guys so much for your help! I really, truly appreciate it!

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@Knellie - I feel you! When I first got sick it took 8 years for me to even feel interested in anything! But now I found my niche: all year I have been making Christmas presents: home made jewelry from discount beads and other supplies ( I saw a huge sale online and bought a lot of great beads and just started to do it and quickly fell in love with it, it's addicting like a puzzle !) I also have been knitting presents: scarfs. pillows, sweaters, place mats ... it is easy to learn how and keeps you occupied while creating something! 

If you have a hard time reading, like many here do, audio books are great. It's much less triggering than music and you get to be at the edge of your seat while lying down ... 😂

Another thing I find fun to do is candle making - but It takes being by a stove for long periods of time, so a bar stool is needed. And it is easy - you can use up old candle stumps or buy wax online ( I make my own wax ) and there are tutorials on how to pour candles. I make pillars, that is really super easy and I can personalize them by adding color or other things like herbs or other wax pieces as well as scents. Sooooo many possibilities .... you can buy supplies for any of these hobbies online and instructions as well. 

Another good thing about these hobbies is that you can do only as much as you can at a time. Being creative really helps your mood! And I take 'exercise breaks", meaning I get up and do a chore or so in between projects to stay active enough. On good days I use my rowing machine ( a perfect exercise for POTS, IMO ). 

And then there are always puzzles ....

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I love reading but I have had to change the books I read - no more literary fiction or historical biographies for me, I now read much easier stuff! I've found card making or scrap booking to be good POTS hobbies, but a top tip is to have a cupboard or shelf where you keep work in progress so you don't waste time and energy putting it all away and getting it back out again.  I like to cross stitch and I taught myself to crochet watching YouTube videos and I love it (I've made some lovely baby presents for friends).  I find socialising difficult (I can only cope with one person at a time and if I laugh or talk a lot my HR rockets) so I enjoy doing all these things on my own but I've joined online groups where I can talk about them with others.

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I learned to crochet. I do cross stitch. It takes a long time and sometimes I have to put it up for months. I'm working on a huge project and it is taking years. I haven't had it out in a while but hope to pick it back up soon. I also picked up playing hidden object games on my Kindle Fire. It seems to be helping with my memory and my attention span. 

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Hi, @Knellie,

I do "puttering" things that are nonetheless useful. Things I can do slowly if I need to. I like being outdoors but I can't do the heat any more so, when it's not too hot and humid out, I go out with my "stick grabber" - one of those hand-held stick things that has pincers on the end that pick something up when you squeeze the handle - walk about the property and pick up sticks and limbs that have fallen from trees (we live on ten acres, so there's almost always something to pick up). I place them in a small wheelbarrow and wheel them to a pile that my husband will eventually burn when the pile gets big enough. The "grabber" is helpful not only as a back saver, but also because the POTS doc told me not to bend down and get up too fast, which is exactly what I would otherwise do when picking up the sticks (and what I was actually doing when my more alarming symptoms first appeared and I landed in the ER).  On a nice, cool, breezy day, it's a very pleasant and relaxing thing to do (did it today, in fact) and there is no rush or pressure involved; I can stop whenever I feel I need to; plus, I get exercise! Maybe not intense, aerobic exercise, but I am on my feet and moving about, and breathing fresh air.

I also like to play the guitar and sing, and walk our dogs. And I have a favorite newspaper from my home state that gets delivered daily; I like to read that and it also has some fun word games I like to do. 

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My grandmother who had H-EDS and in her 40's had today what we call POTS had a hobby of genealogy, though I believe it was started by her mother.  There were 4 large card board boxes known as egg crates full of her family history, and she even had many news paper articles and the most important item and that was the medical and or death certificates of many and known issues.  I really do believe it was started with her mother.  She gave the 4 boxes to me in 1980 and I have continued the tradition though it is now completely computerized.  With the medical history I have developed many medical histories and it clearly shows many trends especially the H-EDS.  I have traced it back in to the 1820's.  Our family and cousins can be forever grateful for their work.  By putting it in charts I have been able to statistically prove the ancestors where this problem came from. (Prussia) and can answer many family members concerns and questions on why they have problems, both severe and minor.  Thank you grandma! She had it as a hobby but had no idea that the data could be so important to those who have symptoms of H-EDS

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I particularly like to do things that I don't have to get off the couch for, like crochet or needle felting or beading. But I also paint and craft and sculpt and do macrame and occasionally bake when I feel like getting off the couch. Writing is a good hobby, too, and drawing. I suggest looking on Pinterest to see if there's anything you'd be interesting in learning how to make.

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Well I'm too tired to read or do my music, but I take photos when I can then I spend time editing on my computer and adding to groups and Flickr and instagram. 

Also, I've been watching reaction videos to music and it's quite entertaining. Listening to music as well. 

I would suggest something creative. That's been the most therapeutic for me. 

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I think learning a new language by audio tape or learning a new instrument is easy and doable for us. I think when i get bored with my current projects I will start learning spanish or pick up my daughters Ukulele. Her boyfriend is a musician - he might be able to teach me .... 

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