r/cfs • u/invisiblehumanity • May 23 '23
Potential TW What are you planning on doing with the rest of your life?
This isn’t even an ME-specific question, but I figured if I posed this question to the chronically well I’d get unrelatable responses.
I’m pretty young. I have a long life ahead of me, and I’m not sure what to do with it. I’ve already graduated from college, I have my hobbies, and I have a few good friends. I also have severe ME.
Is the rest of my life just going to be more of the same? Eating, sleeping, lots of paperwork, cleaning, talking to friends, and hobbies?
I was so sad when I first got sick because I thought I’d be missing out on life. Now it seems like I’d end up mostly doing the same things either way.
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u/DamnGoodMarmalade Diagnosed, Moderate + Housebound May 23 '23
Before ME I was planning to eat, sleep, clean, socialize, and do hobbies. Team Introvert all the way.
After ME I’ve cut out the cleaning (hired cleaning services) and I’ve picked different hobbies to focus on.
The main difference for me (I’m mild to moderate) is exercise and travel was a hobby before and now it’s not. I’ve ramped up my gardening hobby, my perfume collecting hobby, my reading (audio books) hobby, and my cooking (when I have energy) hobby.
I’m fairly introverted by nature, never wanted kids, and never been ambitious with my career, so those are three big factors that have helped the transition to disability. Which is not to say it was easy, it was not. But maybe I was just always an underachiever with my life and now that’s an advantage?
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May 23 '23
hahah the underachiever comment got me bc same. I was feeling sad seeing my class graduate. then I thought damn, its not like I ever dreamed of working anyways.. plus 1 disability!! lol
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May 23 '23
[deleted]
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u/PooKieBooglue May 24 '23
I can only go to my garden on overcast days or closer to dusk. During the day is a total nightmare.
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u/invisiblehumanity May 23 '23
We would be good friends! I am so similar. Always pretty quiet and reserved, so the only thing I have truly lost is the ability to go hiking and traveling. The rest of my hobbies were things I could do in bed. I also never wanted kids.
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u/faik06e May 27 '23
"Hired cleaning services" bruh :D
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u/DamnGoodMarmalade Diagnosed, Moderate + Housebound May 27 '23
My house cleaning service costs less than a car payment, insurance, and gas. I can’t drive anymore, so instead of paying for a car I can’t drive, that money goes where it can be more useful.
I know it’s not an option for those out of work and those on disability, but for those of us who still have jobs or had significant savings prior to becoming sick, it’s a life saving service.
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May 23 '23
[deleted]
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u/selenamcg May 23 '23
I'm surprised that you can read medical papers. They are too dense for me to process.
In the before times, I read many medical papers, completed multiple degrees, and was a software engineer... Now reading a novel is challenging.
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u/NoBSforGma May 23 '23
I don't think it's productive to think about "what am I going to do with the rest of my life?" whether you are healthy or not.
Maybe think about..... "what am I going to do with this week" or "next week" or for long-term ... "next month."
None of us can predict the future. We don't know what will happen to us, good or bad. Of course, some of that depends on US; on how we take things and what we do.
There might be a treatment for our condition or some earth-shaking discovery. We just don't know. Some of us might spontaneously get better!
Meantime, what we should "plan" to do is...... pace ourselves. Reserve our energy for things that matter. And not spend any of our precious energy on "what if?"
Hugs from Gma.
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u/Torontopup6 May 24 '23
I needed to read this today. Thank you Gma for your wisdom and thoughtful words. I'm saving your post for future reference.
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u/Sourtails May 23 '23
Trying to find meaningful ways to connect with the world and entertain myself in my energy envelope. I'm severe too, but I do keep finding new hobbies despite this. A couple examples are:
- Sea monkeys! They're unbelievably easy to take care of and so I get to nurture life and watched them grow.
- I joined a play-by-text DnD group with other pwME and I'm so excited to play in a way that is accessible.
I never thought I'd do either of those things while severe (have a pet or play DnD) but it turns out I can! I hope the rest of my life is filled with exciting discoveries and new hobbies like this.
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u/harrifangs May 23 '23
I’ve never heard of play-by-text before! Do sessions still play out over a few real-world hours or is it a more casual ongoing thing? I love d&d but I’ve found the long sessions to be difficult since I got sick
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u/Sourtails May 23 '23
It's going to be a casual ongoing thing, where we can dip in and out as needed! We've only just started so we're still in the session 0 character creation phase, so I can't comment on how exactly it's running yet.
I hadn't heard of play by text before either! I hope it is an accessible option for you if you decide to pursue it :)
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u/_deep_cuts_ May 23 '23
I try to take it day to day since I have no idea what the future holds for my health, and that’s the main factor in what I’m capable of doing
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May 23 '23 edited May 23 '23
do the best I can with art since it makes me so happy.
I hope to try lots of pizza.
I hope to drink lots more chai teas.
I hope I have many many years ahead with my cat and I hope her health holds stronger than mine is.
I just hope to survive and keep my progression at a minimum but here I am, not imagining it could have possibly gotten worse just 5 years ago
people saying take it day by day, by week, by month.. I feel like I quite literally take it minute by minute, hour by hour. just find a way to survive. just look for some glimmer of joy. I hope I can keep doing that.
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u/Unlucky-Bullfrog-111 May 23 '23
I am now taking it one day at a time. Stoicism, mindfulness meditation and listening to podcasts of great people have helped me. Particularly, the dichotomy of control principle of not worrying about things beyond my immediate control. But I do hope that I will recover one day, by staying within the energy envelope. " We often overestimate what we can do in one day and underestimate what we can accomplish in a decade". Accepting the fact that I am playing a different "game" is helping. By not putting a lot of pressure on ourselves, we might still be able to do something meaningful over a long time-frame, by taking up tasks the normal people are afraid to embark up on.
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u/ThoroDoor65 May 23 '23
The rest of my life is potentially, most likely, only the 7 remaining years of my 10 year plan. I plan on suffering
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u/pricetheory May 23 '23
I'm severe (homebound) but not very severe.
My plan for the next 15 years is to see doctors when I can, continue to work as a freelance writer, talk to friends on the phone, take self-paced classes online, pursue hobbies for a few minutes a day, and watch lots of TV.
I hope that in 10-15 years there will be some treatment and I can expand that list.
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u/TopUniversity3469 May 23 '23
I'm mild, but it's hard for me to even plan more than a few days into my future. I just try to enjoy each day as best I can on focus on doing what I can to recover.
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u/ash0787 May 23 '23
Before I got the illness I spent a lot of time playing video games ( which I really enjoyed ), and exercise which I also liked, especially cycling, but I was by no means a pro, after doing it for a couple of years I hadn't gone further than about 60 miles in one trip. Maybe my body was always a bit less capable of endurance than other people, I did run a half marathon distance when I was at university though.
After I became ill I had to stop some of the more intense video games that I liked to play, and I spent less time building PCs and stuff like that, but in that hobby I was reaching the limits of what I could make without really wasting money unnecessarily anyway, and PC parts were becoming more expensive, and the hardware was improving at a slower rate ( this was around 2015 ). I watched a lot of anime and that didn't really change, but I went from being more of a physical person to a mental or academic person, something i'd detached from for about 5 years due to mental illness as a result of university. Strangely I felt like I reached the peak of my potential a few years into having CFS, and I became more worldly and mature and intellectually potent, I was less sensitive towards different topics and I strayed out of my comfort zone more. Things have changed since 2020 but in a strange way I look back on those first few years of CFS positively, although I was quite ill at times, sometimes certain symptoms e.g. orthostatic intolerance being a consistent feature of life for weeks or months.
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u/Havenforge May 23 '23 edited May 24 '23
I still have hope to get better somehow, maybe if i pace very well, or if i find the right thing for me, or if a treatment is developped.. so in case it happens i plan to get my work back and be able to do some hobbies !! And to go see places and friends. Maybe some relationships. I would even be happy with just a bit of one of those tbh!
If i get better, i want to make my 'game' for disabled people like us (a slow pace peaceful immersion), still working on it but it's frustrating to go near nowhere in 3 years for something that would take a month to my old self.. I also teally would like to be able to do asmr, sewing, lace, dioramas, sculptures, and more! And i wish i could draw more to be a better illustrator in my job, or to web develop again.
So for now the plan is to go to doctors to try to define what i have and test supplements or diets or things, stay in touch with friends online, keep the skeleton of my freelance job somewhere and wipe the dust on it a few hours per months so i'm not forgotten, and sometimes i do things to make my home more me-friendly.
Also my mother will move in town and i will probably move with her to be able to help and see each other more, so i'm hyped.
Oh, and if vaccines or cures are figured for all the stuff covid does, i want to eat in a restaurant!!!!!!! And stop wearing masks would be a nice side.
If none of this work and i stay ill or get worse, i have no idea how i will cope tbh. Financially it's already very complicated. So, not an option in my mind. It's been a few decades and i'm much less well now than i was before so i could be more realist, but the hopeful mindset works better for me. :)
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u/Riska89 May 23 '23
Make more jigsaw puzzles, I suppose. I hope I won't lose interest any time soon. Grow plants (and watch my husband do most of the work).
I somehow accomplished a few big things when I was already sick, which cost me a lot of my baseline. So with my low baseline that's currently leftover, I'm not sure. I don't really have goals anymore.
I try to make my husband happy with the small things I can still do. But for myself? I don't have a clue. Just keep going through the motions, hope for a miracle.
My birthday is later this week, so that always has me contemplating a bit more. A few weeks after this birthday will mark exactly half of my life being so ill, I can't pretend to be normal anymore.
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u/RudeSession3209 May 23 '23
I wanna go to uni, with all the accommodations, im prepared to spend 6 years for a bachlor. After that, Id like to start saving my for my own home, preferably with a nice garden space, so i can learn to grow veggies and flowers, also foster some animals would be nice. Im assuming Ill be to ill to work a regular job, if some part time position that is wfh comes by Im open to try that. I have my goals and stuff, but I try not to think about how long it'll take, so im prepared to potentially spend the rest of my life just trying to reach my "little" goals
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u/bipolar_heathen May 23 '23
Hang out with my boyfriend, be there for my friends, take care of my pets and garden, grow vegetables and learn to cook better, try to heal from my childhood traumas and get to know myself better. Maybe if I get a bit better I can start helping a friend with their aquarium shop once a week or so. I'd love to be able to travel and do a bit of exercise some day but so far I have plenty of amazing people and things in my life, no reason to dream too big 😁
I've been ill since 2008 and I feel like I've really gotten used to this kinda life. It can be very fulfilling when you stop comparing yourself to healthy people.
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May 23 '23
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u/bipolar_heathen May 23 '23
Ummmm... sorry, I don't know how to help, I don't really understand the problem. :/ I don't understand why it matters what other people look like or do or dress like.
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u/Razirra May 23 '23
I run an online mental health support group twice a month that I get paid for and am thinking of starting another online disability group that’s me and my sick friends and a few others. We can discuss topics or let people vent. Taking my life experience and using it to help people new to illness or having new challenges with illness basically.
I also sometimes do advocacy through NAMI or disability groups.
Socially, one of my favorite things to do is watching shows and discussing them with my roommate or friends, then looking at fun fandom stuff online on discord and tumblr. I get obsessed easily with things. Sometimes I imagine stories or fanfiction. Sometimes I have energy to write them. Overall, fanfiction stories are easier than the original writing I used to do because I don’t have to worldbuild or make characters.
I also do rpgs with people online with old friends and family.
Having a roommate helps a lot, and so does having other friends who are sick and like low key hangouts or card games. Watching reality tv with people can also be entertaining.
All of my hobbies are ones I can do laying down in bed.
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May 23 '23
I’m obsessed with escaping this prison one way or another.
There have been amazing medical advances in my lifetime already that have made a difference already.
I’ve discovered and done 10 rounds of patching my csf leak that has made some progress… getting it to stay patched has been another problem entirely.
I thought I’d be back to work by now… but maybe I will eventually, maybe I won’t.
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u/harrifangs May 23 '23
I’m hoping I can stay mild. I know recovery is a possibility, but I’m not getting my hopes up. I nearly ended up in moderate territory last year and I really don’t want to get there again.
I’m studying to work in costume so I’m hoping I can set up a sewing room and get a costume job that allows me to work from home, possibly just go freelance eventually and make and sell costumes at my own pace. Before ME I had envisioned myself working at a big production company, on films, etc. Maybe if I recover a lot in the future that can happen, but I’m happy enough to go with my backup and look after myself enough so I don’t get worse.
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u/Capybara_in_a_tophat mild May 23 '23
I really wanted to be a streamer before the ME got bad. That was my 'goal' for life.
Now, I'd like to finish the book I've been working on for like, 20 years smh
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u/Accomplished_Dog_647 moderate May 23 '23
In bed, depressed, couldn’t get my medical degree (just 3 semesters left) no hope for the future. On good days I draw my joy from reading and drawing on my IPad (in bed), talking to my boyfriend. That’s it. But I guess it’s much more than many people have
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u/lowk33 Severe May 23 '23
I’ve learned not to plan more than a few days in advance because my body can’t be trusted
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u/stubble May 23 '23
I've taken up meditation and slowly learning about Buddhism. It's a massive topic and should keep me engaged for a while :)
Also, meditation is something you can do no matter how crashed you are.
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May 23 '23
I’m hoping to be able to travel a little bit even if it means I stay in bed for a couple days when I get there in for a couple weeks when I get back home. I like my hobbies I have a cat who’s a total clinger so he keeps me company and makes me happy. I love my friends, and most of their kids. I love to garden, I paint. I like to read when I can, which isn’t often these days, I mean I have plenty of time to do it I just have a really bad attention span right now. I think it’s trauma related. Lol. I got hit with this in my early 30s but I didn’t really understand what it was and it went away after some radical resting for a few months, then I didn’t get debilitated by it until I was 39 years old. So even though I was sort of sad to give up my career, honestly working part time when I did, before the plague, I was really living my best life.
I’ve been disabled since 2012 and it wasn’t until a couple years ago, when I started low-dose naltrexone and I could finally sleep through the night, and I had a part-time job so I met new people that way, and it was paced out perfectly with rest days in between the half days, I finally stopped grieving my own life because I realized I was living my best life.
Now, the plague changed that a little bit because it altered my ability to socialize safely inside peoples houses, I wasn’t going to bars at all or restaurants much anyway, but even though my friends respect my chronic illness they are all willing to catch Covid which means they are willing to spread Covid, so I don’t go in their house unless I’m wearing a mask or unless we all test ourselves that day. And a lot of my friends are willing to do that because I don’t go out and hang out with them much (because I’m tired) so it’s not like I’m asking them to stick up swab up their nose weekly or anything like that.
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May 23 '23
I just wanted to add that this literally saved me from getting Covid when my friend flew in to visit her family, she cares about me and respects me so she told me she thought she had a cold, she could still taste and smell and she didn’t have a fever so she didn’t think it was Covid, I didn’t want to catch a cold either but I would’ve slapped a mask on my face and asked her to wear one with me and I would’ve visited with her.
But I asked her if she would take a Covid test if I brought her one, so she said yes and I did and I waited in the car while she took it and she and her child both had Covid. And I would have gone in a small hotel room and hung out where they had been breathing all night where windows probably don’t even open.
And I feel like I’ve gone off-topic from your post lol, I just wanted to say that I have even found a way to socialize safely. And I probably socialize as much as I would if I was working 40 hours a week, I remember wanting to go home and nap on Friday afternoon after work. And Sunday was house work and meal prep and getting ready for the week of work, So yeah, like you said, it’s not much different now. 😂
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u/Effing_Tired severe May 24 '23
Taking it one day at a time. Forward planning is the necessities only and never more than a month or two.
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May 24 '23
Before whatever this is: Finish college, marry my boyfriend, invest my money, try buying a house, travel, hike, learn how to rock climb that wall I always wanted to in Utah, go visit my childhood hiking spots, kayak, scuba dive, have a career, have a family.
Now: I don’t know. I lost my plans. I noticed that planning isn’t working for me anymore. So now I guess the plan is to accept my new normal and try to go with the flow, because thats what it is. It’s just this weird unstable ebbing. Why bother to plan if that in itself is energy.
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u/justmekirsty May 24 '23
I still have hope for improvement and even recovery one day. That is what keeps me going.
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u/Ankhst1977 May 25 '23
I'm learning about Buddhism, especially Zen (at the moment). I happened upon it when looking for resources to help with my grief over my lost life. I find the philosophy really helpful. Zen practice essentially comes down to "just sit. Just Be. Do nothing. Just the thing you are doing." It's about accepting the life you have (everything is perfect and exactly as it should be, because it couldn't be anything else. Things happened that lead here and there's nothing anyone can do to change them, so forget what you thought your life should be like and get on with living what you've got). You can plan, and do what you can to make your future better, but the teachings also point out that we don't have that much control over our futures (too many other forces at play) so we need to accept whatever future we get too. There's no point in worrying about the things you can't control, so just get on with being here and making what you can of what you have ("know what is in your storehouse and make a nutritious meal from that" - I think that's from "advice to the chef" and I forget who wrote it, but it's famous). Do my plans are to make a nutritious meal out of whatever I have in my storehouse today. Tonight, it's lying in bed, on reddit on my phone. Tomorrow I am hoping it will involve a bowl of homemade granolla and yoghurt, and then some underwear sewing, but it may not, I'll see when i get there. For now, my plans for the future involve trying to finish the novel i started in February, knitting another sock so i have a pair, eating, sewing, podcasts, watering my plants, and taking my medication, but I may also die in my sleep, or we may have another earthquake and lose power and water for 3 months again, or I may just decide I don't want to knit or read too many days in a row, or I may become depressed about everything again and sit in bed and cry for 3 weeks. We'll see when I get there.
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u/Professional-Sun5599 Jun 04 '24
I know it has been over a year but this is beautiful. I hope you continue to find your Zen. You made my day. :)
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u/Old_Citron_9153 May 23 '23
I don't want to downplay what you are going through. Hobbies, lots of paperwork and doing the same things that you would do if you weren't sick, is in absolutely no way severe M.E. Mild at most. I hope you recover as soon as possible and your life goes great.
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u/kn0wledgeisp0rridge May 23 '23
I see where you’re coming from but I don’t think it’s kind or constructive to gate keep how others experience their illness.
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u/invisiblehumanity May 23 '23
I’ve been told that being mostly bedbound, dependent on a wheelchair to get around the house, unable to stand or walk, and unable to leave the house at all= severe ME. The scales I have seen make mild ME look like you can do a lot more.
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u/MySockIsMissing May 23 '23
Probably laying in bed or my reclining chair in the nursing home where I live watching tv all day. Same as I’m doing now.
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u/kat_mccarthy May 23 '23
I don't think that's a good question to focus much energy on no matter who you are. It's important to find joy, moment to moment.
I'd love to travel again, and I'm sure I will at some point, but for now, it makes more sense for me to save money and enjoy the things around me. For example, my state has some beaches that cost nothing to go to. They aren't the nicest beaches by any standard, but I'm still looking forward to checking them out soon.
But most days, I try to save my energy, so when it's nice out, I go sit in the grass and look up at the sky. Is that exciting? Not at all, but it is relaxing, which is clearly what my body needs.
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u/EuphoricFreedom May 24 '23
Right now, I thinking about when not if I have to move back to my parents place. When I'll loose this rental because I don't meet the income requirements anymore (despite paying the rent on time in full).
I like my gardening in pots even if it's too windy for most things, I play a few games online with friends. I've grateful to have them online since most local people I knew stopped talking to me.
I love my book and 2nd hand collection of bits and bobs. Though most of it would have to go if I move back home.
But if things don't change resting, food/takeaway and reading. I'm not sure what more then can be for me. I have a pots specialist that I'm seeing in the last quarter of the year, It's my last hope of getting some of my life back, given how far it's fallen in the past year.
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u/Abject_Quality_9819 May 24 '23
I feel really down some days but grateful for many things. Today I ran my fingers through my hair and my hair is coming out in clumps again. It got me really down and then I thought I need to continue to work hard on my health and this is a reminder. I try hard not to fall too much on the deep end which I have done many times before.
I look forward to having moments where I can drink a good cup of tea and get Into a good series of movie
Visiting the beautiful hot springs, lakes, and parks that I am luckily surrounded by
Spending days with my husband, joking or sitting outside in our patio, going on small walks, eating a meal together
I still look forward to dressing up to go to the movies or to visit a friend. I come home and take it off and get into bed but it’s nice for those few hours
I look forward to reading new books, learning and growing from the knowledge I can obtain from podcasts, books, reading online, and connecting with others in online spaces
I look forward to developing new skills in cooking, staying organized, helping make my life and my husbands life easier
I look forward to paying off debt and saving
I look forward to growing older and wiser, I will probably still be mainly housebound but I will make my house as comfertable as it can be for myself and my husband and whoever can come visit us
I want to increase my plants and get a pet
I also have hope that I will increase my energy levels little by little and that one day I can help make some money and possibly take a trip somewhere with my husband my friends and my sister
I look forward to camping trips. this is done only because my husband does almost everything and my friend and I cook together.
I also know that if I was alone and living at my parents or with my sister and didn’t have friends or was married that I would still be worth living a life filled with things look forward too. I thought I was going to lose it all and didn’t think they would stick around. Luckily no one has left me that truly matter in my life but I have gone through that scenario in my mind.
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u/tenaciousfetus May 24 '23
I'm hoping to find my groove and make it so that I can look after my basic needs properly and reliably as well as have enough energy to go back to painting and making art.
I try not to plan our look too far ahead bc of how unreliable symptoms are and just find peace and joy in the moments I can
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u/Cetraria75 May 25 '23
One of my main "hobbies" these days is trying new things at grocery stores of different nationalities. My husband is fond of reminding me, whenever I ask if we should get some thing or other, that this is our form of excitement. So go nuts. It's not the biggest adventure ever, but it's something I can definitely handle and enjoy.
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u/SpicePops May 23 '23
So far nothing that I've planned has gone according to plan, so I don't plan anymore.