I’m curious as to what hobbies and pastimes you all have and if you’ve been able to keep doing them. When the dizzies first hit hard last fall I wasn’t able to do much for a few weeks but then decided I would teach myself to knit. Well guess what, after 25 years of trying I finally can knit!! It was incredibly hard at first with the neck and shoulder troubles as well as eyes doing funny things but I did it and it was quite therapeutic.
I also love to make stained glass lamps and am hoping over the next couple of weeks to get better at standing so I can get back at that, need to be careful with this one though glass is very sharp.
So what do you do?
My main hobby the last few (MAV) years, that isn’t computer related (huge geek here) was to play the guitar, which I can’t any more due to this crap.
Right now I don’t have much of any hobby. I do some “volunteer work” by testing/debugging and stuff on a http://en.wikipedia.org/wiki/FreeBSD; no actual coding though. I am a programmer, but not at the level it takes for stuff like OS’s.
Other than that, and browsing the web, chatting with friends… um, not much.
I have been able to watch TV now and then the last month or two, but it’s very random. One day recently I watched 7 or 8 42 minute episodes (in a small window on my computer screen, closing my eyes during much camera action - but still) - that’s almost 5 hours worth of video in a day… And I wasn’t much more than more tired afterwards.
Today, I’ve watched about 5 minutes total and feel sick. There’s almost no telling… I can sometimes feel pretty good, and go crap very quickly from a few minutes of video. OR, I can feel pretty crap to start with, but stil endure 1-2 hours without anything except getting a bit tired. :?
Random, I tell you!
Edit: Oh, and I guess you could consider listening to music kind of a hobby, at the level of music obsession I have.
I never really had time for many hobbies before this illness, as i was in graduate school for a long time which took up most of my time, and then I began working which was also time consuming. now that I’m not working or studying for the first time in my life, I am not well enough for hobbies. I have to say, though, during the first year of this I watched food channels non stop. I still try to cook, but it’s so very difficult. And, I have great difficulty watching tv now.
Photography is the main one right now for me and one of the main reasons I wanted to go to New York on the trip home was to buy some new gear at B&H Photo in Manhattan (next week! Yoohoo). I want to start shooting some weddings but have to say I’m just not stable enough right now. Looking through the lens and the pressure associated with a wedding shoot for hours on end makes me too symptomatic right now.
I also play acoustic and classical guitar but have great trouble. It has caused dizziness and disorientation for me since I first got VN 6 years ago. I know I can get around it with practise (like I got over the ipod problem) but haven’t had time to stay at it consistently.
I was into cooking too once upon a time but so many foods set me off that it sort of killed the fun – especially as I loved making Thai foods. I’ve had to readjust the ingredients in many things but it’s tough when you want to add something like parmesan cheese to a pesto.
Scott - I completely relate to what you’re saying. Isn’t cooking less fun when there are millions of fabulous recipes that we are not allowed. And, of course, less fun when the room is constantly rocking, It’s hard to alter ingredients. And, pesto without cheese and pine nuts, is basically just basil and garlic - not too tasty.
I’m so glad to hear that I’m not the only one who can no longer play guitar. I had been taking lessons for 2 1/2 years and I had to stop 9 months ago when the dizziness first started. I just can’t turn my head side to side that quickly anymore.
I was also a couples and line dancer and had to give up both. I still work out regularly, but have modified everything I do…Running is okay and fast walking…in fact, it alleviates the symptoms until I stop the movement. But in my step class I can’t do the variations or the shuffling. And in my muscle classes, I find in difficult to do squats…the up and down motion kills me.
So, I went from being very active 9 months ago, to giving up my favourite hobbies. Luckily I can still read.
I can play guitar! It’s my passion in life and was my goal careerwise, but I developed mousearm-like injuries from overplaying, so that went down the drain. Oh well I can still play a bit but could never do it professionally with the pain and all.
It sucks that you guys can’t do the things you love; I’m happy I can do a lot of those things at least. We seem to have a lot in common hobbywise scott. I love photography as well, and take a lot of pictures, or well took I should say. Cooking has never been a favorite of mine, altough I love to eat
I used to play the guitar too (is there a connection here!) but now find bending my head makes me dizzy, anyway the pads on my fingers have gone soft now!
I have written a book and now I have taken up painting.
For seven years I was a volunteer at a local rescue centre, walking the dogs. I used to start off feeling really dizzy then by the time I had walked slowly for a while, I sometimes noticed the dizzies had lifted. Circulation I guess. I got exhausted quickly though. I stopped 2 years ago (back trouble, found I was fighting too much physical stuff) but I miss the boost it used to give me (used to feel I was in the normal world for a while).
Well it seems like we are a fairly artistic bunch. It’s a shame though that we all seem to have given up a little part of ourselves to this awful illness! I think I might get back to my glass work a little sooner than I planned maybe it can work like VRT or PT. The hard part is going to be accepting my limitations and not getting worked up over them. I’m a little OCD to begin with and the limitations frustrate me to no end so I haven’t bothered to try. Do you all do that?
I have had some successes though, during round 1 of this I knit about a dozen pairs of socks and during round 2 I sewed a wedding dress for my sons fiance. That dress was probably one of the biggest emotional and physical challenges of my life which is so weird because sewing is so easy for me. I also managed to do the bridal parties flowers (bouquets and boutonierres).
So is anyone else challenging themself into doing something they don’t think they can do anymore? I dare you, within reason of course!!
Tammy - wow - good for you! I cooked a pretty big meal last night, but was sad and frustrated the whole time. It is so miserable walking back and forth to get things while cooking. I try to be as organized as possible, but it still involves walking. I also lean on kitchen chairs. I cannot just stand freely. I ended up having a migraine with aura after
(most probably unrelated - I get them often) and was crying a lot in the evening. It is just so frustrating that something that should be so very effortless (i.e., cooking) becomes torture. But, my husband and I need to eat. My husband helps out a lot when he is home but he oftentimes gets home VERY late when I’m already in bed.
Tammy, I also started knitting, and I really enjoy it, although sometimes I can start to feel bad if I do it for too long. Right now I am working on a blanket, which I hope to complete before it gets cold outside!
I have also discovered my love of cooking during these past couple MAV years. Always being stuck inside the house all day, cooking gave me something to do. My husband and I have a CSA farm share, where we pick up a box of local organic produce every week. It’s a surprise what we get every week, so I have to come up with our meals based on what we get. I started the migraine diet this week, though, so it’s becoming increasingly frustrating to find recipes I can use. I’m trying to be positive and look at it like a fun challenge, but it’s hard! I do think that eating organic and nonprocessed food has helped me at least a little bit, though.
I used to be quite the traveler, before I got ill. I studied abroad in Australia in college a few years ago, and loved every minute. Sadly, I haven’t flown in 3 years, because I am too scared to get on a plane again, fearful that I will get too dizzy. My husband travels all the time (he’s an astronomer), so he gets to travel to places like Hawaii and Chile, and I can’t go with him. However, I do enjoy doing local weekend trips with my husband every once in a while. At least that way, it is not for too long and we are only a few hours drive from home if I feel too bad.
Have you heard of the website Ravelry.com? It’s an on line community for knitters and crocheters. Lots of free patterns, information, and useful tidbits. I too like the knitting, but like you said sitting too long doing it can make me feel yucky but it also can help, our own version of VRT. I make sure now that I stop and stretch my neck often. I think Lisa should join us with the knitting, we could start our own little group of dizzy knitters!
I seem to be one of the few on here that doesn’t play guitar I do like dancing however that’s gone by the wayside a bit over the last few months as even the thought of it makes me dizzy.
I really like photography, purely as an amateur hobby though, I don’t have any cool equipment. I just like to take photos and to admire the photos of others. I also enjoy film, reading (sporadically in a reading group), Scrabble, walking, travelling and learning new things/questioning the things I think I know. Keeping up the travel has been a challenge. Not so much the flying itself (although I’m terrified of flying) but the jet lag. I live in Australia so to go overseas usually takes a long time. The jet lag can leave me dizzy (to varying degrees) for days, exacerbate existing MAV (when I’m symptomatic) or set off a new episode. But, I refuse to let this stop me. I went to South America for five weeks last year, Cyprus for a few weeks later in 2008, NYC for 10 days in May this year and am currently in Europe. There’s been a few dramas but (other than this stomach bug which has set off some vertigo) nothing unmanagable.
I guess the next thing is to get back to the dancing. I do want to give Rockabilly another try but all the constant spinning could be a challenge!