Things to look forward to
@river Hi River. I really love your spreadsheet idea too! It sounds like a great way of prioritising what your goals are. I find writing helps me get clarity on what is going on in my head. I think I might use your spreadsheet method.
@river I'm going to check out those podcasts on Spotify! I've been able to handle audio more in the last six months or so and I'm finding it means I rest more because I actually lie down and shut my eyes.
@KateH_Em_Aus yes, me too! anything that forces me to lie down and shut my eyes is helpful
My approach has now moved to looking forward to doing just one “thing”/activity per day.
Today I could have done 2 things but knowing that I can’t handle it in a couple of days time (PEM) I restricted myself to one thing.
It was great and I had a sleep this afternoon to recover.
Feel okay and have at least managed to do something.
I look forward to catching up with a friend. It doesn’t happen often, maybe once every two months. I’ll usually do a lunch, which I usually end after an hour. I have some good friends who are very understanding and will proactively schedule a lunch with me. That really makes me feel appreciated and is something I very much look forward too.
We also have a good community of families connected to our kids’ school. They are very social, particularly the mothers. There is always a bbq in the calendar, sometimes I go and sometimes not. Plus the mums go out for dinner all the time. At the end of last year, after not having much social life for a few months, I organised a dinner for the dads. (It really surprised a few mums). The dads were appreciative and said we should do it more often, and now with COVID easing we can. I just need to plan some quiet time before and afterwards.
With regards to media to look forward too, I pace myself by watching tv everyday. I also spend lots of time playing low impact games on my iPad, generally card games.
I can’t read books, which is depressing. I loved reading and have also written many stories, but I can’t write anymore either. I find that after 15-20 minutes I start getting headaches, which leads to mood swings and insomnia.
A few months ago I tried reading again. But alas after twenty minutes the headaches kicked in and I felt like I needed and big glass of whiskey (ironically the book was on how to give up alcohol).
I used to be very good at multi tasking. I would listen to music or sport on the radio while gardening or doing some jobs around the house. Now I can’t do that. If I listened to a pod cast while trying to do anything else, I would suffer mental fatigue. I can occasionally listen to music, it even writing this post while my family is having breakfast and talking is giving me a headache.
Thankfully I love tv. It interesting to hear that others cannot watch anything too dramatic. I love that stuff. I’m currently watching The Sopranos on DVD. I look forward to Mondays, when my kids are back at school and I can sit down and watch a few episodes of something gritty.
I love looking forward now and planning, as being mostly housebound for a long time ... I found that if I don’t have something to look forward to, life can get pretty tough.
I love going out for lunches, so I look forward to that and now...I also look forward to the days after lunch, when I have planned to come home and put my pjs on and completely rest and binge watch my favourite shows.
Reading is a huge passion of mine, although I only do a small amount of it at the moment. I find myself reading for 10 mins then dozing for 10 mins ect... it’s frustrating, except we gotta do whatever we can do to keep the things we enjoy sometimes. With keeping pacing in mind of course.
I am off now as I have just completely contradicted everything I just said right now as I have spent way to much time on here today trying to catch up on things and I need to go rest.
Take care everyone
An excellent conversation starter @Daffy_Dave
> ...having something 'to look forward to' has been (and continues to be) a helpful 'pick-me-up', so that there's always something I can turn my mind to, that gives me a positive focus
I went through a period of specific chronic pain a few years back. Through the management of that a psychologist suggested a version of what you have chatted about there. She called them "endorphin-lifters".
Often, but especially in tougher times, I will look gently for endorphin-lifters. As discussed in this thread, it's good to have these be any kind of thing, of any suitable scale. Small things are great. Like everyone has said, listening to a good podcast is a very very good option. Watching TV and reading books, if possible, more good options.
Something nice for me can be just going outside and looking at plants, breathing in fresh air, looking at the sky. In the past for me, and I know for other people, getting outside has not been possible. Not taking small things like that for granted is important to me. Hopefully there are similar things for people who are bedroom-bound.
Having broad things to look forward to is also something that really works well for me.
Sometimes I do a thing with my kids ahead of dinner time (a kind of Ignatian examen, if anyone knows about them) -
- What's something that has gone well?
- What's something you've learned?
- What's something you're looking forward to?
Like people have said, special things looked forward to can be near or further out, small or bigger.
I, too, like @river's thing of a good ME/CFS management trial as something special to look forward to. haha.
> On a really bad day, I look forward to reading a short book (teenage fiction is good) or listening to an episode of my favorite podcast. Reading can be too much cognitive effort sometimes, but listening to podcasts is something I can do almost any time, unless I'm experiencing sound sensitivity.
I, too, often find reading - and recently some TV watching even - too much cognitive effort. I wonder now if I've got a double dose of challenge there with ASD challenges.
Speaking of ASD challenges overlapping with ME/CFS ones, ooooh, sound sensitivities. My goodness
I'm interested in hearing about peoples' experiences with that. Probably in a different thread area though ay.
Back to my response to you @Daffy_Dave, if I am able to have a read of a book, teenage fiction is perfect. A little less confusing in those crucial first 10 pages, and so more likely for me to successfully get into it. I do love the idea of reading. I can rarely do it. When I do get into a book, even one every few years - magnificent! One of the great joys of life
@PaulB I don't have an official diagnosis yet but I almost certainly have ASD.. Maybe one of us should start a thread for it?
I've had sound sensitivity (and other sensory processing issues) all my life. It actually had been getting better before I got sick. Then CFS set me back a bit.
Hi all I’ve noticed a few of you love reading as I do and unfortunately cannot do it very much or at all .. this is one thing I miss so much and I have so much writing in me too,I would love to get out .....
I had a book going for a couple of years and I was determined to finish it!
While I did over do it and I paid for it ... I kinda read for 10 mins and rested/slept for 10 or so mins and then went back to it.
I just did it for to long.
So now what I am trying to do, so I don’t still have this book going in 2 or 3 or more years .... is to only read just for 10 mins on a good day and then put it away ....I’m hoping this will help me and others be still able to read without to much of a crash.
Although @Jop I know you said you cannot do any reading at all.... would on a “good” day just reading for 5 or 10 mins be better than going to long?
The trick for all of us is to be disciplined enough to stop!
Obviously if you are not up to it at all, hopefully with time, you will be able to do some light reading on a good day.
One other thing I love to do is drift off to a guided mediation and I usually fall asleep and that’s nice too.
The honest guys have some nice ones out there, that are different and nice little journeys if anyone wants to try those.
Hopefully whoever is reading this, has been able to achieve something nice today
Hi @Tess Some things are worth waiting for: it makes for a sweeter ending. Hope you're enjoying the read. Love books as well as mentioned in another post … just like the printing, the artwork illustrations etc... and yes I have been guilty of cutting out the images and illustrations I like, pages etc... I do read books ; usually non-fiction
RatsAreFluffy last edited by RatsAreFluffy
What's something you've learned?
Ah, I didn’t see this here. Just made a thread for this specific question. I guess because with large blocks of text, I have a tendency to skim them if I can’t focus . No harm in having this question repeated I guess, and in having somewhere else that it could perhaps be a bit more concise and easier to read.
What's something you’re looking forward to?
I guess at one point I decided to stop setting specific goals, and I had to stop being so concrete in the things I was looking forward to. Because so, so many times I had to cancel or I failed to achieve something that at the time, I thought was a very real achievable goal. And the damage that did wasn’t worth it. It’s hard, to balance hope with the potential for disappointment. My ASD and the desire for structure is a very real challenge, when I can’t maintain this needed structure.
All the same, I am looking forward to getting my new loom on Saturday. (I was supposed to get it tomorrow, but that had to be cancelled because of the weather - typical) I’m also looking forward to good snuggle with my rats before I go to sleep. Or attempt to.
... with large blocks of text, I have a tendency to skim them if I can’t focus .
Yep, you and me both.
Here is a wide broadcast apology to all past, present and future times I haven't read a long post well, and might only respond to part of it, missing important bits, etc. etc.
I guess at one point I decided to stop setting specific goals, and I had to stop being so concrete in the things I was looking forward to. Because so, so many times I had to cancel or I failed to achieve something that at the time, I thought was a very real achievable goal. And the damage that did wasn’t worth it. It’s hard, to balance hope with the potential for disappointment.
I think having non-tangible goals can work really well. e.g. looking forward to sometime in the next week feeling relief (if that is achievable, timetly, etc. - all the SMART goal thingys). And then if it happens, acknowledging it. And if it doesn't, acknowledging that you had a shot at it - and there is something good in the pursuit.
Very humble but significant goals are great too, even if they're tangible. e.g. your snuggling with rats. Nice!
I'm reminded of the line: if you want a friend in politics, get a dog.
A nicer version - if you've got CFS+ASD, one good way to get some connection is with a pet (if having a pet is doable).
A nice reflection from Leunig:
@PaulB Love the Leunig . Exactly what I needed to see today. Thankyou for the blissful moment
@Daffy_Dave I still look forward to receiving an actual letter in the mail. Sadly this is slowly disappearing. There is nothing better than a personal letter that you open with your hands and read. I manage to write letters to my granddaughter. I make them fun with lots of pictures and even little stories. I sneak in some advice . She's nearly 2 and hopefully she will read them back to me in a few years and write back. I find that writing is an easy task to get going on. It doesn't have to be done fast.
@crashdummy ooooh maybe we could start a penpal club for people who like sending/receiving physical letters?