Things to look forward to


  • Global Moderator

    ...ME/CFS is all sorts of tough to live with, and this goes even for people with the "mild" version, let alone moderate and severe. Being exhausted and in discomfort at best, and usually pain, almost all the time, isn't the most enjoyable thing in the world. There will be varying capacities of people with ME/CFS to do this, but for me I've found that 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 (while not pretending that I'm not in pain/exhausted/etc.,)

    I'm a mild-to-moderate (depends on the day, and the scale!), and have a 'sliding scale' of things to look forward to, from listening to some gentle music (low end), to playing Playstation (nothing too fast - my Gran Turismo days are well behind me - but there's a good range of slow-to-moderate stuff)/reading a book (high end). Then only rule I have (and this is just for me) is that it shouldn't trigger PEM, and preferably should allow for recovery while it's being enjoyed. For me, being able to have whatever-it-is to focus on helps balance the inevitable 'ugh' from the day-to-day.

    If people are interested in sharing, what sort of things do other people find helps them have some "nice things" during the day that works well with their underlying capacity levels?



  • @Daffy_Dave I love the synchronicity of this post as I've just in the past week started a practice of writing down one thing I'm looking forward to, and one thing I'm grateful for every day. I'm finding it very helpful, although it remains to be seen how the practice holds up in future as the last week has been an uncharacteristically low-symptom one!

    Unfortunately a lot of the things on my "looking forward to" list require major investments of energy (e.g. day trip to a forest, learning to play a new song on the piano) but I'm trying to find smaller things to look forward to as well. For example, properly trialling a medication that I've only taken casually in the past...I know that's a very chronic illness-y thing but I'm genuinely excited about it. 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.

    Speaking of sliding scales, a while back I made a spreadsheet with columns for things I could do on good, bad and OK days, with the intention of having something to look forward to regardless of my symptom level. I should probably look at that again, I'd kinda forgotten about it.


  • Global Moderator

    Nice one @river - you sound like you're very well organised, and I like the sound of your looking-forward-to spreadsheet 😎 You've very much got my sympathy that some of the things you're keen on are not "ME/CFS-friendly". I've found with this illness I've had to do a lot of accepting in terms of what works for a "enjoyable but relaxing activity" (I never really watched much TV before getting ill, but now it's one of my lower-energy activities, and I find that I still have to be a little picky with what I watch - I tend to go for things that aren't too "heavy"). If you're comfortable sharing, what books and podcasts do you enjoy?

    And looking forward to trying a new treatment is a very reasonable thing to look forward to - best of luck with your next set of trials 🙂



  • @Daffy_Dave I've been binge reading all of John Bellairs' stories. I read a lot of them as a kid but there were still some I didn't have (they were very hard to get hold of before ebooks became a thing). I've run out of Bellairs so I need to find a new series to binge read. I love a good detective/adventure story but I've already read all of Sherlock Holmes a billion times over so I'm thinking of trying the Nancy Drew or Enola Holmes series.

    I like fiction podcasts that have a great narrative and some mystery/suspense, I especially enjoy ghost stories or anything magical. I listen to all my podcasts on spotify and last year my favorites were "On a Dark, Cold Night", "The Tower", "Glasgow Ghost Stories", "The McIlwraith Statements" and "The Antique Shop" (this last one I can't seem to find on Spotify anymore).

    Like you I have to be a bit careful with the content I consume. It's unfortunate that my favorite genres are mystery, suspense and crime because these are also the most likely to contain something traumatic that easily unsettles my already fragile nervous system 😞 That combined with finding moving imagery overwhelming to my senses means I can't watch TV very much anymore.


  • Global Moderator

    @river said in Things to look forward to:

    I've been binge reading all of John Bellairs' stories. I read a lot of them as a kid but there were still some I didn't have (they were very hard to get hold of before ebooks became a thing). I've run out of Bellairs so I need to find a new series to binge read. I love a good detective/adventure story but I've already read all of Sherlock Holmes a billion times over so I'm thinking of trying the Nancy Drew or Enola Holmes series.

    Detective stories are great 🙂 I've read all the Sherlock Holmes as well (but only twice - I'm much less-well read and it's been a long time - a decade and a half maybe - since I read a detective story) and enjoy detective stories on TV/streaming (but, like you, need to be a bit careful about what I watch, although I suspect I've got a bit more capacity for watching that kind of thing). I'm pretty sure I read a Nancy Drew back in the day and enjoyed it, and an Agatha Christie as well. While Le Carre is more 'spy' stuff, there tends to be a lot of mystery in his writing as well (but instead of "who did it?", it's "who's the spy?").

    I like fiction podcasts that have a great narrative and some mystery/suspense, I especially enjoy ghost stories or anything magical. I listen to all my podcasts on spotify and last year my favorites were "On a Dark, Cold Night", "The Tower", "Glasgow Ghost Stories", "The McIlwraith Statements" and "The Antique Shop" (this last one I can't seem to find on Spotify anymore).

    Very cool 😎 Spotify is great, and it's all sorts of amazing how easy it is to listen/see/read quality content these days. I hope there are lots more quality stories on Spotify in 2021 🔈



  • @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



  • Hi. Team.
    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.
    Good luck



  • 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.



  • Hello all,
    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.

    Paul.



  • > 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.



  • @river said in Things to look forward to:

    @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?

    A good plan.



  • 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 🤗



  • @Tess said in Things to look forward to:

    One other thing I love to do is drift off to a guided mediation and I usually fall asleep and that’s nice too.

    Drifting off to guided meditation - a very beautiful thing!



  • 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



  • @PaulB said in Things to look forward to:

    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.

    @PaulB said in Things to look forward to:

    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.


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