How do you amuse yourself during the day?

[Tulip]

How about setting up a local support group for people with ME and similar illnesses (don't worry too much about being exclusive to ME - there are other similar illnesses where people find the limitations frustrating)? Nothing grand, just meet up once a month (or even twice) somewhere pleasant for coffee (we go to garden centres). The big advantages are that everyone gets the good days/bad days episodes, no-one expects too much from you, and if you can't make it, well people understand. It can get a bit ME symptom-centric, but it is always possible to work on that. We have around 15 in our group, which means that we average 4 or 5 at a coffee meeting - just about right. I think one of the big bonuses is that it gets me mixing with people that I wouldn't have otherwise met, and keeps my world wider. Plus, when one person is going through an "ordeal" (such as moving house), the others can be very helpful.

I did that few years ago and it was lot's of fun. I couldn't do it now though I would just sit there with a "huh" look on my face when someone spoke to me. Even other ME sufferers can mistake a fellow sufferer as being "simple".

Your group sounds great! :Retro smile:

 

[Graham]

Sorry to hear that, Tulip. I hit a gormless patch over the last 9 months, but thankfully am out of it now. It's not so bad online where you can type and edit slowly (and even then make stupid mistakes), but it is just so tiring in conversation. My friends in the group have been very understanding though. It's a shame you can't join us - simple or not, you would fit in a treat.

Have you thought about taking up some form of musical instrument? I have always wanted to play the sax, but have no musical talent at all. But now with all the different electronic stuff around you can play an instrument and only you can hear it on the headphones. So that's what I have been doing over the last 5 years or so. I don't expect great progress - I'm only just up to playing around a dozen tunes more or less correctly with no twiddly bits - but it doesn't matter because I enjoy it. There are all sorts of easy play-along-to-CDs around that make it all sound better, where you just add the odd toot here and there. I'd put my standard at Dave Lister of Red Dwarf (a UK reference to someone who thought he was ace at the guitar, and was utterly useless).

 

[Tulip]

Thanks Graham. No, musical instruments aren't my style. Glad to hear you are having fun with learning though!. We got Red Dwarf here in OZ, so I know who you are talking about.

 

[heapsreal]

i have been entertaining my self utubing some good old music and whats also helpful is they recommend a few other songs of that era. I cant really remember most of the artists or names of songs but some how my memory rcognises them. i reckon i get a better endorphin release from these golden oldies then someone on LDN. I think if i was in my 20s in the 1970's i would have had an afro, flares and shaking it in the discos, lol.

 

[Graham]

I was in my twenties in the 1970s, but as you can tell from my cartoon, an afro was never an option - I was losing hair even then. But I've got to agree about the music giving me a better endorphin release.

 

[Tulip]

[video=youtube;SKdVq_vNAAI]http://www.youtube.com/watch?v=SKdVq_vNAAI&feature=related[/video]

 

[heapsreal]

http://www.youtube.com/watch?v=MnqkaH_EP_o
http://www.youtube.com/watch?v=2IrDz-urxVw
http://www.youtube.com/watch?v=ry4ngf766N0
Graham, im in the same boat, afro is a distant dream, lol.

 

[heapsreal]

i have to put this tom jones link/clip up, his dancing makes me laugh but very raunchy for its time.
http://www.youtube.com/watch?v=gvmyTZEqlo8

 

[heapsreal]

[video=youtube;SKdVq_vNAAI]http://www.youtube.com/watch?v=SKdVq_vNAAI&feature=related[/video]

endorphins are going with the bee gees, lol, hard to sit still lol, makes guys feel like atallion when they hear this music, lol.

 

[maddietod]

I was in my 20s in the 70s, but I didn't go in the disco direction. Bob Marley, Jackson Brown, The Band, The Beatles, Buffy St. Marie, Joni Mitchell.... No afro, but bell bottoms for sure! I agree about music creating profound shifts......no side effects!

Madie

 

[Tristen]

Music is always good. It's one of the most amazing links between us humans. Universal language I guess you could say. I listen to new age classical in my home, but classic rock in the car. I was just watching an old video (another good idea) of Heart from the early 70's. Takes me back, teenager having fun. Never cared for Disco.
One of my top 3 things to do when I get well is, to go out dancing.

 

[Graham]

No, twitching rhythmically to music never appealed much to me. I did try once, at home (in the 70s). My wife fell about laughing so much she was gasping for breath and going scarlet in the face. I have the build of a gazelle and the grace of a hippo.

If you like something clever, here's a reminder about Bob Dylan's original http://www.youtube.com/watch?v=d_ujAXxNxU0 and here's a clever version using nothing but palindromes http://www.youtube.com/watch?v=Nej4xJe4Tdg&feature=related e.g. "was it a car or a cat I saw?"

Is your brain hurting yet?

 

[Tristen]

No, twitching rhythmically to music never appealed much to me. I did try once, at home (in the 70s). My wife fell about laughing so much she was gasping for breath and going scarlet in the face. I have the build of a gazelle and the grace of a hippo.

If you like something clever, here's a reminder about Bob Dylan's original http://www.youtube.com/watch?v=d_ujAXxNxU0 and here's a clever version using nothing but palindromes http://www.youtube.com/watch?v=Nej4xJe4Tdg&feature=related e.g. "was it a car or a cat I saw?"

Is your brain hurting yet?

I can't dance either, doesn't stop me, lol. On my bucket list is to learn to swing dance. I've wanted to do that ever since watching a latino couple in SF take up the sidewalk and part of the street dancing to music coming from a balcony band. I've never in my life seen anything that looked so fun. Everything stopped to watch them. I'll never dance like a Latino...it's in their genes, but I'm sure to have fun trying.

 

[SOC]

I'll never dance like a Latino...it's in their genes,...

Not mine. Okay, I'm not strictly Latina since my (partial) heritage is Spanish, not Latin American..... Maybe I got my (non-)dancing genes from the German/Brit side?

No, some gene didn't come through at all in me. I don't "get" music. Really. If I never heard music again, it wouldn't bother me in the least. I had to drop Music Appreciation in college because I couldn't even begin to understand what they were talking about. It was a huge humiliation (and a good lesson in humility) for an otherwise top student.

I know I'm missing something major, but the brain cells just aren't there, I guess.

 

[Sparrow]

I have found it helpful to try and get my mind out of myself as much as possible. That's next to impossible when the illness is severe, and maybe it shouldn't be possible then.

It's so nice to know that I'm not alone in that... I'm quite bad right now (bed bound), and to top it off only got my diagnosis a few months or so ago. So I'm fighting to learn everything I can with the limited energy I have. It often feels like the illness becomes all-consuming, though. It gets hard to keep it from creeping into anything else. I'm trying, but it's tough. Feels good just to know that other people have that when they're really bad too.

Right now I'm at the stage where I'm trying to force myself to read tiny amounts and such just so my brain doesn't forget how. Tried audio books, but they seemed to really tax me. TV sometimes, but it's taxing too. I was still trying to be more active online for a while, but wasn't able to keep up anymore and finally had to make the decision to put the laptop aside for most of the day. It's very easy to get sucked in to searching for treatment, or just reaching for any kind of social contact, but I'm not really well enough to handle long stretches and don't seem to have the willpower to stop after a reasonable time. Sometimes I try self-hypnosis or medication CD's. Do a lot of lying with the cat or staring out the window. Now and then, I'll spend some time imagining that I'm dancing, or jogging or something (they say visualization is enough to help people get better at basketball, so I figure it can't hurt. Maybe it'll keep me more in shape. ). Sometimes my husband lays me outside on a lawn chair, and I think out there (that's really nice for a change of pace). If I'm up to it now and then we'll take a walk with me in the reclining wheelchair.

And spend time thinking of all the great things I'll be able to do when I'm just a little better. I do a lot of that.

 

[Graham]

Hi sickofcfs - I'm still in my jeans, but it doesn't help with the dancing. I came bottom in all the music exams at school, and when I was 14 we were all put in a big hall to sing as a choir. Eventually the music teacher couldn't stand it any more, and had us singing to him in small groups - then out of the hundred or so students, just six of us were banned from singing a note, and had to sit at the back and follow the score! I couldn't believe that it would have happened to anyone else, but then discovered that the same thing had happened to a colleague (the deputy head where I taught).

Sparrow, you have my greatest sympathies. I am nothing like as badly affected as you, but I must admit that I still find listening to audio tapes or talking on the telephone much more tiring than reading or watching TV. Odd, isn't it? When I had a bad patch early on in my illness, I fitted up a bird table outside the window and watched that for ages, but I guess with your cat that is out of the question. I'm guessing that you haven't had ME for long. Well if it helps, it took me a while to get the pacing right, to not get sucked into things, and to enjoy what I could when I could, but once I had got that sorted (and my son has had ME for a lot longer than me, so it was easier to learn), I did improve. Rather than force yourself to read, why not do what I did and lower the quality of what you read? Children's books are great for that - not too many characters and nice and light. Roald Dahl is ideal!

And if I am getting bossy - sorry! It's 40 years of being a teacher - it is now so much a part of my life and character that I can't stop interfering! All the best though.

 

[heapsreal]

I was a great dancer before cfs but now with alcohol intolerence my dancing isnt as good

 

[Nielk]

If all else fails, there is always this to fall back to;


Subject: kaleidoscope... too cool



How amazing that someone could not only create this, but make it change when you move your mouse/cursor...or you can just sit back and let it change by itself. Either way it is awesome!!! Very nice.........and pure genius! ALSO, IF YOU PUT YOUR CURSOR RIGHT IN THE MIDDLE, IT IS TRULY AMAZING.

Be sure to run your mouse over the screen slowly

Click here: http://inoyan.narod.ru/kaleidoskop.swf

Enjoy,
Nielk

 

[Tulip]

That's one trippy kaleidoscope!.

 

[Tristen]

I was a great dancer before cfs but now with alcohol intolerence my dancing isnt as good

Lol, I gotta admit to that one too.