What do you do when you can't read, use computers, watch TV, listen to anything, go out and you live alone? I often end up doing trigger stuff anyway because I get bored. I find it extra hard to stay away from books, and although I am knitting A LOT, that gets a bit boring without audio input. And I can only do yoga for so long.
I often cook a lot, but right now I am having a bad flare up and am not motivated. other suggestions?
Do you have a pussy cat? Mine always make me feel better :)
I know that's not helpful, but I will try to list a few suggestions...
-light gardening - I do a lot of succulents and my partner does most of the vegie side of things - you can do the succulents in small pots if you want to avoid hard labour or leaning into the garden...you could also do them inside on a scale if outside is a trigger
-writing - I'm sure we all have lots on our minds...sometimes it's good to get it down on paper and look at it in a tangible fashion...or just do some creative writing or brainstorming, or write someone a letter, or attempt to write good songs, like I do! :)
-solo card games or puzzles?
-amateur photography (at home if outside is a trigger) ...might be fun to play around with innate objects and nature and explore some of those settings you always ignored
-arts and crafts (aside from knitting) - if you're not really an artist, then you can create simple, practical stuff like handmade cards, gift bags, calendars, carry bags or safe keeping bags
I always find that if I have a purpose for things then I am always more excited and motivated to do them! For example, if you had a friend with an upcoming b'day, or a niece to make a safe keeping/trinket bag or box, etc
I know I haven't exactly broken any records for wonderful suggestions, but I hope I have at least got you thinking.
I hope you're feeling better soon and that you find SOME WAY to relieve your boredom!
Peace, Tree x
Tineline, tree had many good suggestions, are you able to. talk to a friend on the phone even if you have to do like I doput it on speaker.I should of went back and read someof your story, I will this afternoon,sorry! Chewing bothers me, talking not for the biggest part.My friends will even call when they know I’m having a rough time,they know I’m right their so they have a one way conversation with me on my answering machine. I just love it.You really get to use your imagination when you have TN! (lol) Sure hope you find your help for tn,I had lost all hope untill this past nov. 27th (very short version of my story)I tried a cream, I thought, yeah right! OH MY GOODNESS WHAT A BLESSING!!put GALLIXA in the search bar for more info if your interested. Wishing you the best dawn
Tree, those are all really good suggestions! Especially the writing and photography is spot on. I can't do much digital photos anymore, but I have an old analogue SLR and I have been missing it now. Think I might teach myself some dark room stuff.
Today, though, I got another idea. I don't think this eye thing will get any better, so Imight as well learn braille. You can read books in braille, right? I , not always fit to listen to audio books. But I love books, and don't know what I would do without them...
Dawn, I ring people on speaker, too, when I am in shape. I am getting quite good at using the dictaphone on my phone (no backlit screens for me), but the stupid woman does not always write what I tell her. I am really glad I can still see, because I am getting a tiny taste of the problematic life of the blind they must all be very patient.
Sounds great! What interesting projects to embark on!
I hope it all goes well and that your camera gives me a quiet thank you when you dust her off :) :)
Hi Tineline,
Sorry to hear you are having a rough time. I was just having a similar conversation with my husband after yesterday (Level 8 pain) spent under the covers, lights off, no sound, doubling up on meds, trying to escape the knife being stabbed in my ear. I know this may sound odd to some, but my kitty always knows when I'm struggling and she curls up right beside my ear and purrs-oddly comforting.
We looked back at my pain journal this morning (actually a spreadsheet as I'm a bit of a computer nerd) and I'd had 35 days of 0-3 pain in a row. I'd gradually started adding in some of the things I love: traveling, biking, sewing, cooking, attending biweekly yoga classes, lunch with friends......honestly, I don't think any of us know for sure what triggers the 'bad' days. Like you, I hate giving up the things I love because of this awful TN.
I can almost always read, and being a readaholic, I love to read, BUT....I don't want to think that's all I have left in my life, sitting here in my chair reading.
I've tried with my spreadsheet to pinpoint what causes the 'flare-ups', but nothing jumps out. It's all guesswork. I'm sorry that I don't have any suggestions for you except....when you are feeling OK, go ahead and do what gives you joy. When the bad days come, lie low.
Wishing you good days,
Rissmal
Thanks, Rissmal.
The problem is, I hate lying low. I physically cannot do it, it bores me silly. That's why I am trying to keep entertained. Distraction therapy has been my savior for the last 16 years, but sadly, most distractions I am familiar with and have used in the past are starting to be bothersome. However, when I am bored out of my wits, I do them anyway, which is of course not helping at all. That's why I wanted to ask for new ideas.
Basically looking for anything that does not involve backlit screens, high, medium or constant noise, drafts and repetitive eye movement. :-)
I saw something else today: how to make paper or fibre beads. That looks fun, and I can make a real set for my niece. And I might go and get some coloured pencils so I can try out drawing. (Loved doing it as a kid, so why not!)
Hi Tineline,
I get it about not wanting to lie around doing nothing.....are you able to hike, bike, or kayak?
There is a crazy bunch of women where I live who are always dyeing fabrics, quilting in artistic and unusual ways, and inventing new sewing/art projects. Even if you can't participate in group activities on a regular basis, sometimes hanging out with others is a great way to get new ideas.
Your idea for making beads sounds interesting and distracting, for sure.
I'll be thinking of you and looking for other ideas.
rissmal
Tineline said:
Thanks, Rissmal.
The problem is, I hate lying low. I physically cannot do it, it bores me silly. That's why I am trying to keep entertained. Distraction therapy has been my savior for the last 16 years, but sadly, most distractions I am familiar with and have used in the past are starting to be bothersome. However, when I am bored out of my wits, I do them anyway, which is of course not helping at all. That's why I wanted to ask for new ideas.Basically looking for anything that does not involve backlit screens, high, medium or constant noise, drafts and repetitive eye movement. :-)
I saw something else today: how to make paper or fibre beads. That looks fun, and I can make a real set for my niece. And I might go and get some coloured pencils so I can try out drawing. (Loved doing it as a kid, so why not!)
Playing piano is the best distraction therapy for me. Try learning a musical instrument (by ear if looking at sheet music is a problem).
Hey, Toothache. Thanks. I already do play piano, but right now I live away from mine. I do sing in a choir, and I love it. You are right, music is a great soother. Sadly it sometimes trggers me, too.
Started drawing a little, and listening to podcasts. Neither of which were in my normal repertoir before.:-) this really is so life changing. At least it forces you to be creative.
Hey Toothache,
Working on sewing place-mats to match the colors in my daughter's new house. I always liked to sew, but never quilted before-I sort of thought it was for old ladies (lol, I am an old lady, but I don't think of myself as one). That was before my first quilting project was a pattern called 'A Trip Around the World'.....made by request for my oldest granddaughter. It was incredibly complicated and sort of like working a 3,000 piece puzzle. These place-mats I'm making now are like mini-quilts. So, working on them satisfies my creative urges.
I don't know if you watch TV; I never did before TN, never had time, not interested. But now.....I have time and I have Netflix....the best invention ever. Last week, I watched the entire 1st season of Grace and Frankie.
BTW, how are you feeling?
Rissmal
Hi Tineline,
I’m sorry to hear about music triggering you sometimes. I’m fortunate that I can still enjoy it. What kind of piano do you play? Classical, jazz, boogie woogie… I enjoy drawing sometimes too.
Hi Rissmal,
I’ve never tried sewing before but I used to bead and make jewelry. I made a bracelet for my best friend when I was in high school. Her dad is a dentist and kept hounding me to be a dentist after that since he said I had nimble hands. I’m glad I didn’t! Dentistry is the last thing I’d want to do now. I’m doing OK but having trouble with the stupid air conditioner at work.
I’m still playing piano as a hobby. Right now, I’m on a Chopin and Debussy kick. I’m on Chopin’s Ballade no. 1 and Debussy Claire de lune. I’m thinking of picking up violin again as well, but my violin’s strings are probably rusty.
Hi Toothache,
I worked in a building where my colleagues kept thermometers on their desks....when the temp in their offices fell below 65, they would turn on their space heaters. One woman also duct-taped the vents closed so the air would not blow on her. Killing the environment on step at a time (lol).
I would not want to be a dentist either, but my dentist is the one who saved me. He's the one who does the research right along with me and he's the one who prescribed (when I showed him the research and asked him if I could try it) the drug combo that is working for me. Since me, he's had two new patients that he has been able to help because he now knows what TN is.
You must be talented if you can play Chopin and Debussy. I'm a guitar player, but only for my own personal fun. Ugh to violin for me. I was forced to study violin when I really wanted to play the trumpet.......
Hu Rissmal,
Nah, I’m not talented, but I had many years of private lessons. Chopin and Debussy wrote plenty of easier pieces as well. My dentist was very concerned and sympathetic, but he said he’d never encountered anything like this. He’s scared to do any dental work on me. He said I needed some but we should wait until this resolves. I do see some dentists who specialize in non-tooth related facial pain and they are very helpful. They’re more helpful than my neuro. LOL about the duct tape! After 8 hours of searing pain, that’s what I feel like doing, haha.
I get what you mean about violin. I was forced as well, and dropped it as soon as I could. But playing it for fun might not be bad.
rissmal said:
Hi Toothache,
I worked in a building where my colleagues kept thermometers on their desks…when the temp in their offices fell below 65, they would turn on their space heaters. One woman also duct-taped the vents closed so the air would not blow on her. Killing the environment on step at a time (lol).
I would not want to be a dentist either, but my dentist is the one who saved me. He’s the one who does the research right along with me and he’s the one who prescribed (when I showed him the research and asked him if I could try it) the drug combo that is working for me. Since me, he’s had two new patients that he has been able to help because he now knows what TN is.
You must be talented if you can play Chopin and Debussy. I’m a guitar player, but only for my own personal fun. Ugh to violin for me. I was forced to study violin when I really wanted to play the trumpet…
Hi Tineline!
Sorry to hear you have been having a rough time with finding distraction :( distraction is my middle name so I know how much it can help with pain. There are some great suggestions here. TV shows are my absolute favorite and don't know what I would do without them. I was thinking is it possible to have a show on in another room and you can just listen to it while you are crafting or knitting? I know its not as fun watching but sometimes I like to have background noise.
A cat is also so nice if you like animals, especially kittens who love to play and will keep you entertained. They don't need as much work as a dog. Or maybe a hamster? I also love crossword puzzles and sudoku and have started a 1000 piece puzzle (which I have already lost about 100 pieces hehe). Crafting is great too, there are so many do it yourself projects that you can find online or on pinterest, and as you have a niece I'm sure she will be delighted if you create things for her. I like art therapy as well, you can find books that have drawings and patterns in them that you color (adult coloring books hehe) Maybe look into origami too. Its difficult because a lot of distraction comes from technology. I hope you find some of these ideas useful! xx
Thanks all! Tamzee - Origami - what a great idea! I saw those colouring books. They were actually what inspired me to start drawing. Although I prefer black and white, and so drawing patterns was more to my liking. Wish I was patient enough for
puzzles. Hope you didn't lose all the corners... that reminds me-I should break out my deck of cards for some solitaire. . Maybe learn some new ones.
Music thankfully does not always trigger me. I had the most enlivening choir practice today. :-)
Just want to thank you for a host of ideas. I have been ale to avoid most triggers these last few days andfeel much better, and might I add - not bored!
Glad to hear it, Tineline,
I'm still trying to figure out all my triggers.....I think one of them is doing too many things in one day. I've never really been able to 'sit around' much, but this condition is forcing my hand. So, back to my lesson of acceptance- very hard one for me.
Rissmal
the trigger thing is hard - sometimes it just sneaks up on you rather than poking you obviously. My reading and tv-watching may have been of those kinds. And then all of a sudden they are there with a vengeance and force you to stop, and you realise that you actually feel better stopping them altogether, than when you thought they didn't trigger you.... It also takes time to accept and be able to choose to disregard it as an identity. I am tineline, Norwegian wman, nature lover, hobby musician and researcher, not Tineline TN victim.
I think time is key. we have to accept, in which lie to disegard the future, which is perhaps more hard than anything. This is why I refuse to feel saddened by losing the tv and going to noisy parties, which I always loved. I have found podcasts and entertaining at home instead! I will miss the reading, though.
If you are struggling with acceptance, I suggest you consider a therapist.
I was not quite finished but got thrown out of my reply. Part of my new internet life using an e-reader.
As I said, I suggest to seek out a professional sooner rather than later. I have had tremendous help from a psychologist, who I coincidentally sought to help with something else, but who helped me resolve a lot of anxiety and so it seeped into my general being. As I got TN when I was 20 (am soon 36), it is important for me to embrace new ways of living rather than hang on to old. (Then again, since I had it all my adult life, maybe I grew used to it as just a part of it all)
Anyway - I am very happy to have seen the psychologist for a while. I came out on the oher side a happier and more content person.
Tineline said:
the trigger thing is hard - sometimes it just sneaks up on you rather than poking you obviously. My reading and tv-watching may have been of those kinds. And then all of a sudden they are there with a vengeance and force you to stop, and you realise that you actually feel better stopping them altogether, than when you thought they didn't trigger you.... It also takes time to accept and be able to choose to disregard it as an identity. I am tineline, Norwegian wman, nature lover, hobby musician and researcher, not Tineline TN victim.
I think time is key. we have to accept, in which lie to disegard the future, which is perhaps more hard than anything. This is why I refuse to feel saddened by losing the tv and going to noisy parties, which I always loved. I have found podcasts and entertaining at home instead! I will miss the reading, though.
If you are struggling with acceptance, I suggest you consider a therapist.