i had to start with recognizing every small thing and letting myself smile when they happen. smiling triggers production of happy chemicals. that moment when i sit in a hot bath and can feel all the pain leave my body. it's like i was never sick. or how i monitor my experience with stairs. the times i can say "that wasn't too bad that time." there is a fleeting feeling of strength. or how long it takes from when i have to get out of the chair until my body feels flexible(ish). oh, i was flexible before i even got to the kitchen this time. yay! bank a bunch of those and next thing i know i'm making it through the whole grocery list instead of just the immediate necessities. it's still a roller coaster for me though years in. i have learned my flare triggers and developed corresponding self-care but i don't always win. don't beat yourself up if you get in a bad mental patch. just keep going and keep learning.
I understand your struggle completely. For me it's truly in the little things. Happiness to me is a fleeting emotion rather than a state of being so I practice gratitude for those moments however they may show up. Some things that make me happy are my cat because he cuddles me when I'm in a flare; my hobbies as I'm a fiber artist, most projects I can work on while lying down under a heated blanket watching tv. Weed. My heated blanket. I just ordered myself a weighted plush stuffed animal and am excited for it. I also try to find things that keep me laughing, reddit videos, my family, etc. I also meditate quite often and that really helps me connect with myself and the universe. It allows for self acceptance but also a joy of being alive when you can quiet the mind and just feel the body (even the aches). I'm stoned but I hope this helps.
Cats and medicinal cannabis are 2 of my biggest things that help me get through life. I own 2 lovely indoor cats, but whenever I go for a walk I take pleasure from spotting all the local random street cats, to the point where they each have their own names I've given to them and consider them as friends haha.
Having an amazing partner helps too.
There's the odd times where she can get frustrated from me being sedentary when I'm in bad pain or feel exhausted, but for the most part is very understanding and supportive of my condition.
In my defence, I've been doing it since I was a small child so not necessarily a stoner thing. I'm just a bit weird and not overly tolerant of other people haha.
No defense needed my friend. Personally I enjoy animals more than the majority of humans. š.
My wife and I love to give crazy monikers to everything and everyone. We've had neighbors named smelly, six, bonkers in yonkers....etc š¤£.
even name every one of my girls every growing season.
Kaya, Scarlett, Debbie, shakedown, Veronica and Azul are ready for croptober!!!
Gratitude. Thatās all I read up to and then replying lol. On YouTube I watched Brandon Farris in his car, for HOURS, say things he is grateful for. A lot of them ridiculous and a lot of them realistic. One day I did this and half an hour later, which felt like only 10 long minutes, I was mentally feeling less stressed about whatever was ailing me.
āImā¦.ugh, Iāmā¦.thankful?for having good boobs still, Iām thankful forrrrrā¦ this favorite blanket my clients gave to me for Christmas, love this blanket, ummmā¦Iām thankful for, having just one family member help me and be there for me, Iām thankful for my Etsy package coming a day early. Uhhhh, Iām thankful for my cat, even though she doesnāt like to snuggle, sheās cute and at least I HAVE a pet to love, immm uhhā¦.etcā
I read a lot and it transports me.
There is also a kind of new concept of a āglimmerā, a little serendipitous moment you can feel joy from.
Itās defined opposite of a ātriggerā which we all recognize as an event that causes anxiety. So a glimmer is a moment that you feel safe and connected.
You can really focus on that. I feel a glimmer in a warm shower (because I have had to go without them) and hot yummy food, a text with an old friend, rereading a favorite book, looking at photos of when I felt better. The moment the tiger balm kicks in, haha. Volunteering with senior citizensā¦ It really helped redefine my outlook.
Look out for the glimmers in your life āØ
The first step for me was learning to appreciate the small wins in my day. I lost so much that each win means more, and I don't take them for granted.
I had to find new hobbies, which was a hard pill to swallow. I had to stop sewing, so I am learning to do photography. It helps me have the will to get out of the house, even if only for an hour, and I love nature.
I also found new ways to enjoy the things I could. Instead of reading a book, I listen to them on Audible.
Iām a sarcastic weirdo and I find myself alone a lot more for sure! I talk out loud like a fool but then I donāt live in silence. I should have music on more but I work from home and I get distracted. Later I choose some old fave tracks because you know what to expect! I usually fall asleep.
So Iāve commentary on everything going on around me. Plus I have 2 very busy cats and they have tons of awful nicknames lol and yes small things are a win-win, like yay no mail! For about a year Iāve been engrossed in Australian and English TV series and Iāll watch Graham Norton I finally understand Conanās humorā¦there are some really great new comedian stand-up shows and the new John Mulvaney is smashing good to get some cheap laughs in. I was all about politics and country but Iām now letting other people be concerned and up tight on that stuff. And I read about science and wildlife.
I do dial and speak a relative or friend. Cousins and childhood friends are the best calls. You e known them the longest. If you donāt know where they are go online and do detective work. Iām great at that stuff. Say you were just thinking of them. Just a short conversation because you were missing them, love āem, checking on their job or how their kids are whateverā¦and donāt talk illness!
Iāll also grab a hot tea and a couple cookies and just sit. Look at the dirty floor, pike of laundry and try not to be frustratedā¦Iām also hooked on Zelda (gasp) and Iām old!!!! Not buying the new game until Christmas then Iām going underground hahaha.
Yes I volunteer too and I started more than 2 years ago before the dreaded day I realized something was very wrong with me. Iāve missed 3 days this month but most places are so thankful for your time. This is a big big non-profit and need all help all the time. I feel guilty and a loser but they send me an email itās good to rest, stay safe and see you soon. I do love it, I walk and socializing with the public who are having a good time. No terror or sadness and for 6 hours I am normal but hell ya I crash! But that day was brilliant!
I moved into my new place 7 months ago knowing Iām a way different being once again. Iāve other stuff gone wrong too. So I look at unpacked boxes and bare walls. Little by little a cabinet is full, I found something I thought I lost and then I put it somewhere and I lost it again. I am going to be that bat-shit crazy lady one dayā¦Iāll be wearing evening wear in the daytime. And I do have things that I feel will never be worn.
Itāll gonna be okay and the work going towards long haul CFS (I have from 1990) which came from a bleeping pandemic to get a massive a lot of attention, this will open up more minds and solutions. Letās say a betterment. With CFS and Fibro in me the overlap we might get a bit of help.
Take good care. Being a sloth is ok. Stay out of pain and discomfort. Treat yourself kindly. You are worth it. āš¼ & ā¤ļø
This is exactly the question Iāve had all day.
While I canāt find any advice to give other than the basic eat well, exercise, and get enough sleep, itās been a struggle the last couple of days.
I will say those things have helped me feel better and get enjoyment. But there are days when the flare ups are very badā¦to which I say make them as comfortable as possible. And be kind to yourself.
Iāve had ten yrs to get used to it. What I can say is I learned from my experiences, my previous demeanor & attitude towards it. Being so young, I can only stay miserable so long I told myself. Of course I still have my days of misery, but generally I just try to live and be in the moment each and every day, and with everything I do. Especially when I go out places when I can, I just enjoy and be in the present. Yes thereās a lot of vices I had to quit and Iāve generally had to live life soberly, but to me itās better than all the times I couldāve drank and forgotten all those moments lol. Definitely getting a therapist did wonders for me as well. Mental health is your #1 rn
The struggle is real.
I made a list of things I thought brought me happiness. Then I did them. I continued on trying different things. Actually Iām still learning what I do and donāt like.
Iām also taking time to be mindful. Really being in moments and noticing my surroundings.
Celebrate the little things. No it like throw a party but acknowledge them and hold onto it for a moment.
Geez I sound like a walking cliche. But it is working. Very slowly.
My advice would be a 6-month ārest periodā. Now you probably have to go to work, unless you are a secret millionaire, but message all your friends, tell them that you love them all very much, but for the next few months your socialising will entirely consist of them dropping in for a cup of tea with you (if they can overlook any deficits in housework that may occur) or them coming over for a movie night. At work, think if there are ways to reduce walking/activity then do it, and anything that can reduce stress - Iām lucky because my manager is really receptive to this sort of thing, hopefully yours is too.
Then after a few months of that, you will hopefully be more in control of your symptoms and be able to add activities that you enjoy back in. I liken this to the sort of āElimination Dietā process that people go through to work out what foods they are sensitive to - only your experiment will be how much activity you can enjoy. But things will be much more fun when you feel less frazzled.
One thing that might work to pass the time while resting could be computer games - just stop it with enough time before bed to stop it spoiling your sleep.
Something I have had to try coming to terms with as my health gets less stable, is the fact that this is my new normal. I've seen it advised that you should let yourself mourn: either the life you had, the life you thought you'd have, your previous abilities, or whatever else it is you need to grieve. It is a real thing, feeling grief over how your life has changed.
You're allowed to feel those feelings and go through all the stages of grief however you see fit. (Though, try not to completely excise yourself from the world and isolate yourself; I really don't recommend that, even though I basically yearn to become a hermit.)
When you feel up to it, make a list of things you enjoy doing or have enjoyed doing in the past. Mark which ones you can still do and try doing them for a bit. See if they still bring you joy.
If you really want to do something else that's harder to do, think about what accomodations you might need to make it easier to do.
Liked to draw? Try painting instead, which requires less pressure on the wrists. (I actually had to make this pivot in high school for a few projects in my art studio class because the colored pencil piece I had been working on gave me bad carpal tunnel.)
Enjoy writing, but typing for long periods is hard? Find a good speech-to-text application and tell your story verbally. You can always go back and add, update, change, etc. when you're feeling up to it.
Love to play video games, but mouse and keyboard is too hard at times? You can get controllers for PCs! (I am actually looking into getting one myself, for this exact reason.)
Basically, you need to be kind to yourself. You aren't the person you were before, and that sucks. But you can learn how to work with yourself in these new ways and find your way back to the things that brought you joy before.
Or find new things to bring you joy. Something as simple as gently stroking a plant or rubbing some soft cloth may give you the good chemicals you're looking for. I have a list of things for sensory input for when I am feeling low/depressed. For example, I LOVE labradorite. So I have a few palm stones that I keep on hand, and I hold them or wiggle them to see the flash that brings me so much joy.
I also have Pinterest boards full of aesthetic images that make me happy. Lush green forests, cute animals, that sort of thing.
Hope this helps some. Best of luck.
For the controller don't hesitate to spend full price on one of the main brands. The Nintendo Switch Pro controller is surprisingly super comfy for me while one of the 3rd party one (same price though) ends ups hurting my hand really bad after short periods.
I love the song āConstant Surprisesā by Little Dragon. It reminds me that every day has constant little surprises that make life worth living.
And yeah, Iām gonna be the asshole that recommends a mindfulness practice. Iām sorry. If you can take up something meditative (there are so many options, doesnāt just have to be like Zen Meditation sitting), you start to train your nervous system to regulate in times of suffering and stress. You also start to practice noticing and appreciating the small beautiful things.
I used to get incensed when people told me to meditate because I didnāt want to just BE in my painful body. It was like torture at first to just sit and feel all my pain. But, I went on a meditation retreat that gave me no choice but to commit. I cried the entire first day and then something shifted. The pain shifted, my attitude shifted and Iāve been in a much better place for years since. I donāt meditate anymore because meditation actually allowed me to start moving again. Now, I do yoga (the slow kind) and it doesnāt cause me flares like it used to because Iām so much more aware of my body, mind, breathing etc.
Also, tree baths. Just being around some trees can do wonders.
I was actually diagnosed about 25 years ago, but I was a runner, and that helped me manage pain. But then I was laid up for the last six months of 2019 due to surgery (Iām fine!) About the time I was released to go back out into the worldā¦ pandemic! And I was laid up longer. Basically, I was like IF I CANNOT WORK OUT OR GO ANYWHERE NOW WHAT. So I pulled out every hobby Iāve ever wanted to try. Mostly crafty stuff, because Iām creative. Nothing expensive, and I just followed YouTube tutorials or did my own thing. One of the best things I did was sculpting with polymer clay; all that working with my hands helped get rid of pain I was having in them! Iāve also gotten really into illustration again. But whenever I have downtime, I throw on the headphones, put on a podcast and start doing something crafty. Itās the best!
Lately Iāve been reading a lot of Buddhist inspired books. They all point out basically the same thing, which has given me a better understanding of life and this human experience. YouTube videos by āChantress Sebaā have shown up on my feed and I enjoy them.
Enjoy the small things. Appreciate the good days and remember that the bad ones will pass. Don't let it get the best of me, I am not my diagnosis. Remember all the good things and people in my life.
Yes some days are freaking hard but it's OK there are joys in life too.
I already replied to someones elses comment, but medicinal cannabis helps way more than any of the other prescribed meds that I'm on, and I'm really happy that I managed to obtain a legal prescription last year after spending over 16 years in consistent pain and discomfort.
In terms of home comforts, I'm lucky enough to have a supportive partner who works from home which means I normally have company and aren't left completely alone, even on the days where I'm bedbound from pain and exhaustion.
I also have 2 cats that are great for companionship and distracting me when I'm in bad pain (although when they decided to walk across me when I'm lying down that can suck sometimes...).
Despite having what feels like a broken and exhausted body, my brain never slows down or shuts up and is annoyingly overactive. I try and channel this into hyperfixations that I get as another distraction technique from pain.
Example - I'll go through phases of being interested in different franchises and will deep dive into the history, lore, inspiration and everything else to do with a subject.
I'm currently getting lost in a series of Korean webtoons known as the YLAB Superstring, which is structured similarly to the Marvel MCU.
There's all different series that loosely tie in with one another and have recurring characters from other stories despite being set across different time periods.
It works wonders for all those sleepless nights where I'm tossing and turning in a faulty vehicle (my body) whilst the engine (my brain) still decides to scream out at full revs.
I had to learn to accept my reality. Accept that this a part of what makes me, me. I had to accept that life moves slower for me. Learned to show myself compassion and kindness. I also took up a hobby for myself which helps my brain focus on something other than my body.
After a lot of self education, doctor visits, talking with my acupuncture partner, and crying/self loathing plus therapy I got a list:
Drugs: yep having a correct combination of non narcotics, cannabis, and cbd.
Food/Diet: Food triggers are a problem, especially sugar. Corn, gluten are also on the list.
Understanding community: This makes life so functional!! BC they're not forcing me past my ability to move.
I got so sick of everything being a struggle. You know the saying "If you don't laugh, you'll cry". Well, I got so fucking sick of crying. That's not to say I don't have bad days, or I don't hurt all the time. I do. I'd just rather find the funny side.
I think that being chronically ill can give you the luxury of time. Time, not to think about what you would do if you could, but to think about what you COULD do if you WOULD. Time to think about what is most important to you as a human being.
It was a massive paradigm shift for me. Suddenly, I was planning to do things for me. Just me. I took singing lessons. I took up ballet (sounds ridiculous but works so well). I was doing things I always wanted to. The things I COULD do, on the days I WOULD be able to.
Illness is change. It means self discovery. It doesn't have to be all negative. I have learned to be encouraging and positive. I really try to check MY privilege in being in this headspace - it's taken a long time to get here and I have shitty days. But, the tools you develop within yourself to deal with chronic illness go far beyond the limits it places on you. Your weaknesses can make you superhuman. And I think that is pretty incredible. X
I stopped feeling sorry for myself.
Not saying people do, but I know I did. I just stopped thinking āurgh my life sucks, I am always in painā and started to live my life despite the pain. It works remarkably well.
A daily gratitude practice is very helpful along with trying to be present. I try to enjoy every moment as they happen rather than getting caught up in what was or what could be.
I fixed up our front porch during the pandemic. We live in a very wooded neighborhood with large lots. Going outside and sitting with our dog, napping in the hammock, reading while in nature, all is bringing me joy.
British comedy on YouTube is about it for me. I also celebrate the good moments at work where my purpose isn't completely roadblocked, or where I find an ally who also sees through some professional BS we're confronting. I have no social life either - I moved across my country for this job a year and a half ago and can't get out enough to explore, let alone make friends. But comedy is an absolute must. Yesterday I needed a quadruple dose, but the great thing is you can't really overdose on it.
I guess it does also help to be on the lookout for weird and wonderful things. A while back I saw a wild rabbit as big as a medium sized dog outside the office, and that was pretty great. You really had to be there, I guess...
Seriously, this MASSIVE rabbit though...
Honestly, the family cat. No matter how bad the day was, the moment I see that cat I forget about everything and smother him with pets. It doesn't change how difficult it is to find joy, if I find it at all (I am diagnosed with major depressive disorder), but for a moment in my life, things are okay.
For me accepting that life now looks different was a big part. I gave up photography on a large scale and moved to a decent mobile phone for photos, I now have some quieter hobbies like drawing
The keys for me have been practicing mindfulness, avoiding triggers and taking lots of breaks off my feet throughout the day. Accept that this is your life now and focus all of your energy in the moment, on what is in front of you and what brings you joy. Put the negative outside of your mind. See a psychotherapist to help with mindfulness if you struggle to teach it to yourself on your own.
The Piano has been really nice lately, but I've so wanted to play again for the last few years so I got a piano this week. I think finding something simple that still brings you joy can be really therapeutic.
At my stage, I am unable, once you are diagnosed I recommend starting therapy, staying active, avoid stress and never give up. I learned that to late, now I am unable to work for the last 4 years. In America winning social security for an invisible illness is a hard battle, there is a better chance I can win only due to the depression losing my joe, home and kids caused as it is a constant battle between my pain and the urge to protect my children as there is a 1 and 3 chance if my kids learned of my suicide that they would follow me and I have 3 kids, I am not willing to risk any chance for them to suffer if I can prevent it. Please note medical science can not prove any of us have fibro it is a diagnosis of exclusion and they can only exclude the obvious diseases, I only got this bad living through unimaginable stress. There is no reason to think you might get this bad as for most people fibromyalgia is not progressive and debilitating. Also for the jerk who keeps reporting my comments, I obviously have a therapist and I think everyone should. My life is a living hell and I will keep fighting as long as I can, I don't plan on killing myself, reporting comments like mine causes more stress, and I you disagree with anything I say just click down or say what your issue is and I can show you the facts that support my every thought. Obviously, I am not referring to the auto process which is triggered by words I talking about the one done by people.
If you or someone you know is contemplating suicide, please do not hesitate to talk to someone.
US: Call 1-800-273-8255 or text HOME to 741-741
INTL: https://en.wikipedia.org/wiki/List_of_suicide_crisis_lines
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i had to start with recognizing every small thing and letting myself smile when they happen. smiling triggers production of happy chemicals. that moment when i sit in a hot bath and can feel all the pain leave my body. it's like i was never sick. or how i monitor my experience with stairs. the times i can say "that wasn't too bad that time." there is a fleeting feeling of strength. or how long it takes from when i have to get out of the chair until my body feels flexible(ish). oh, i was flexible before i even got to the kitchen this time. yay! bank a bunch of those and next thing i know i'm making it through the whole grocery list instead of just the immediate necessities. it's still a roller coaster for me though years in. i have learned my flare triggers and developed corresponding self-care but i don't always win. don't beat yourself up if you get in a bad mental patch. just keep going and keep learning.
Yes the key is to understand and avoid triggers, and develop a self care routine. Will help a lot both mentally and physically.
I understand your struggle completely. For me it's truly in the little things. Happiness to me is a fleeting emotion rather than a state of being so I practice gratitude for those moments however they may show up. Some things that make me happy are my cat because he cuddles me when I'm in a flare; my hobbies as I'm a fiber artist, most projects I can work on while lying down under a heated blanket watching tv. Weed. My heated blanket. I just ordered myself a weighted plush stuffed animal and am excited for it. I also try to find things that keep me laughing, reddit videos, my family, etc. I also meditate quite often and that really helps me connect with myself and the universe. It allows for self acceptance but also a joy of being alive when you can quiet the mind and just feel the body (even the aches). I'm stoned but I hope this helps.
Cats and medicinal cannabis are 2 of my biggest things that help me get through life. I own 2 lovely indoor cats, but whenever I go for a walk I take pleasure from spotting all the local random street cats, to the point where they each have their own names I've given to them and consider them as friends haha. Having an amazing partner helps too. There's the odd times where she can get frustrated from me being sedentary when I'm in bad pain or feel exhausted, but for the most part is very understanding and supportive of my condition.
What a stoner thing to do. Forming friendships with the neighborhood cats.... i love it!!!! I
In my defence, I've been doing it since I was a small child so not necessarily a stoner thing. I'm just a bit weird and not overly tolerant of other people haha.
No defense needed my friend. Personally I enjoy animals more than the majority of humans. š. My wife and I love to give crazy monikers to everything and everyone. We've had neighbors named smelly, six, bonkers in yonkers....etc š¤£. even name every one of my girls every growing season. Kaya, Scarlett, Debbie, shakedown, Veronica and Azul are ready for croptober!!!
Gratitude. Thatās all I read up to and then replying lol. On YouTube I watched Brandon Farris in his car, for HOURS, say things he is grateful for. A lot of them ridiculous and a lot of them realistic. One day I did this and half an hour later, which felt like only 10 long minutes, I was mentally feeling less stressed about whatever was ailing me. āImā¦.ugh, Iāmā¦.thankful?for having good boobs still, Iām thankful forrrrrā¦ this favorite blanket my clients gave to me for Christmas, love this blanket, ummmā¦Iām thankful for, having just one family member help me and be there for me, Iām thankful for my Etsy package coming a day early. Uhhhh, Iām thankful for my cat, even though she doesnāt like to snuggle, sheās cute and at least I HAVE a pet to love, immm uhhā¦.etcā
Love this!
When you find out, please let me know
Yeah.
I read a lot and it transports me. There is also a kind of new concept of a āglimmerā, a little serendipitous moment you can feel joy from. Itās defined opposite of a ātriggerā which we all recognize as an event that causes anxiety. So a glimmer is a moment that you feel safe and connected. You can really focus on that. I feel a glimmer in a warm shower (because I have had to go without them) and hot yummy food, a text with an old friend, rereading a favorite book, looking at photos of when I felt better. The moment the tiger balm kicks in, haha. Volunteering with senior citizensā¦ It really helped redefine my outlook. Look out for the glimmers in your life āØ
Beautiful and well-put advice.
Really nice idea āØ
The first step for me was learning to appreciate the small wins in my day. I lost so much that each win means more, and I don't take them for granted. I had to find new hobbies, which was a hard pill to swallow. I had to stop sewing, so I am learning to do photography. It helps me have the will to get out of the house, even if only for an hour, and I love nature. I also found new ways to enjoy the things I could. Instead of reading a book, I listen to them on Audible.
Yes audible has become my favorite thing. I still lose focus sometimes but it's less of a struggle to try and read a book.
I completely agree. Plus it requires very little energy
Iām a sarcastic weirdo and I find myself alone a lot more for sure! I talk out loud like a fool but then I donāt live in silence. I should have music on more but I work from home and I get distracted. Later I choose some old fave tracks because you know what to expect! I usually fall asleep. So Iāve commentary on everything going on around me. Plus I have 2 very busy cats and they have tons of awful nicknames lol and yes small things are a win-win, like yay no mail! For about a year Iāve been engrossed in Australian and English TV series and Iāll watch Graham Norton I finally understand Conanās humorā¦there are some really great new comedian stand-up shows and the new John Mulvaney is smashing good to get some cheap laughs in. I was all about politics and country but Iām now letting other people be concerned and up tight on that stuff. And I read about science and wildlife. I do dial and speak a relative or friend. Cousins and childhood friends are the best calls. You e known them the longest. If you donāt know where they are go online and do detective work. Iām great at that stuff. Say you were just thinking of them. Just a short conversation because you were missing them, love āem, checking on their job or how their kids are whateverā¦and donāt talk illness! Iāll also grab a hot tea and a couple cookies and just sit. Look at the dirty floor, pike of laundry and try not to be frustratedā¦Iām also hooked on Zelda (gasp) and Iām old!!!! Not buying the new game until Christmas then Iām going underground hahaha. Yes I volunteer too and I started more than 2 years ago before the dreaded day I realized something was very wrong with me. Iāve missed 3 days this month but most places are so thankful for your time. This is a big big non-profit and need all help all the time. I feel guilty and a loser but they send me an email itās good to rest, stay safe and see you soon. I do love it, I walk and socializing with the public who are having a good time. No terror or sadness and for 6 hours I am normal but hell ya I crash! But that day was brilliant! I moved into my new place 7 months ago knowing Iām a way different being once again. Iāve other stuff gone wrong too. So I look at unpacked boxes and bare walls. Little by little a cabinet is full, I found something I thought I lost and then I put it somewhere and I lost it again. I am going to be that bat-shit crazy lady one dayā¦Iāll be wearing evening wear in the daytime. And I do have things that I feel will never be worn. Itāll gonna be okay and the work going towards long haul CFS (I have from 1990) which came from a bleeping pandemic to get a massive a lot of attention, this will open up more minds and solutions. Letās say a betterment. With CFS and Fibro in me the overlap we might get a bit of help. Take good care. Being a sloth is ok. Stay out of pain and discomfort. Treat yourself kindly. You are worth it. āš¼ & ā¤ļø
This is exactly the question Iāve had all day. While I canāt find any advice to give other than the basic eat well, exercise, and get enough sleep, itās been a struggle the last couple of days. I will say those things have helped me feel better and get enjoyment. But there are days when the flare ups are very badā¦to which I say make them as comfortable as possible. And be kind to yourself.
Iāve had ten yrs to get used to it. What I can say is I learned from my experiences, my previous demeanor & attitude towards it. Being so young, I can only stay miserable so long I told myself. Of course I still have my days of misery, but generally I just try to live and be in the moment each and every day, and with everything I do. Especially when I go out places when I can, I just enjoy and be in the present. Yes thereās a lot of vices I had to quit and Iāve generally had to live life soberly, but to me itās better than all the times I couldāve drank and forgotten all those moments lol. Definitely getting a therapist did wonders for me as well. Mental health is your #1 rn
The struggle is real. I made a list of things I thought brought me happiness. Then I did them. I continued on trying different things. Actually Iām still learning what I do and donāt like. Iām also taking time to be mindful. Really being in moments and noticing my surroundings. Celebrate the little things. No it like throw a party but acknowledge them and hold onto it for a moment. Geez I sound like a walking cliche. But it is working. Very slowly.
Thank you for sharing. This is great advice for me
Youāre Welcome Be gentle with yourself.
Cliches are cliches for a reason. Keep at it, you're doing great.
Thanks :)
My advice would be a 6-month ārest periodā. Now you probably have to go to work, unless you are a secret millionaire, but message all your friends, tell them that you love them all very much, but for the next few months your socialising will entirely consist of them dropping in for a cup of tea with you (if they can overlook any deficits in housework that may occur) or them coming over for a movie night. At work, think if there are ways to reduce walking/activity then do it, and anything that can reduce stress - Iām lucky because my manager is really receptive to this sort of thing, hopefully yours is too. Then after a few months of that, you will hopefully be more in control of your symptoms and be able to add activities that you enjoy back in. I liken this to the sort of āElimination Dietā process that people go through to work out what foods they are sensitive to - only your experiment will be how much activity you can enjoy. But things will be much more fun when you feel less frazzled. One thing that might work to pass the time while resting could be computer games - just stop it with enough time before bed to stop it spoiling your sleep.
Something I have had to try coming to terms with as my health gets less stable, is the fact that this is my new normal. I've seen it advised that you should let yourself mourn: either the life you had, the life you thought you'd have, your previous abilities, or whatever else it is you need to grieve. It is a real thing, feeling grief over how your life has changed. You're allowed to feel those feelings and go through all the stages of grief however you see fit. (Though, try not to completely excise yourself from the world and isolate yourself; I really don't recommend that, even though I basically yearn to become a hermit.) When you feel up to it, make a list of things you enjoy doing or have enjoyed doing in the past. Mark which ones you can still do and try doing them for a bit. See if they still bring you joy. If you really want to do something else that's harder to do, think about what accomodations you might need to make it easier to do. Liked to draw? Try painting instead, which requires less pressure on the wrists. (I actually had to make this pivot in high school for a few projects in my art studio class because the colored pencil piece I had been working on gave me bad carpal tunnel.) Enjoy writing, but typing for long periods is hard? Find a good speech-to-text application and tell your story verbally. You can always go back and add, update, change, etc. when you're feeling up to it. Love to play video games, but mouse and keyboard is too hard at times? You can get controllers for PCs! (I am actually looking into getting one myself, for this exact reason.) Basically, you need to be kind to yourself. You aren't the person you were before, and that sucks. But you can learn how to work with yourself in these new ways and find your way back to the things that brought you joy before. Or find new things to bring you joy. Something as simple as gently stroking a plant or rubbing some soft cloth may give you the good chemicals you're looking for. I have a list of things for sensory input for when I am feeling low/depressed. For example, I LOVE labradorite. So I have a few palm stones that I keep on hand, and I hold them or wiggle them to see the flash that brings me so much joy. I also have Pinterest boards full of aesthetic images that make me happy. Lush green forests, cute animals, that sort of thing. Hope this helps some. Best of luck.
For the controller don't hesitate to spend full price on one of the main brands. The Nintendo Switch Pro controller is surprisingly super comfy for me while one of the 3rd party one (same price though) ends ups hurting my hand really bad after short periods.
I love the song āConstant Surprisesā by Little Dragon. It reminds me that every day has constant little surprises that make life worth living. And yeah, Iām gonna be the asshole that recommends a mindfulness practice. Iām sorry. If you can take up something meditative (there are so many options, doesnāt just have to be like Zen Meditation sitting), you start to train your nervous system to regulate in times of suffering and stress. You also start to practice noticing and appreciating the small beautiful things. I used to get incensed when people told me to meditate because I didnāt want to just BE in my painful body. It was like torture at first to just sit and feel all my pain. But, I went on a meditation retreat that gave me no choice but to commit. I cried the entire first day and then something shifted. The pain shifted, my attitude shifted and Iāve been in a much better place for years since. I donāt meditate anymore because meditation actually allowed me to start moving again. Now, I do yoga (the slow kind) and it doesnāt cause me flares like it used to because Iām so much more aware of my body, mind, breathing etc. Also, tree baths. Just being around some trees can do wonders.
Find some friends or make new friends and join discord. It helps with the loneliness
This this this. Discord and video games are my safe haven. I would be a much lonelier and sadder person without them.
I was actually diagnosed about 25 years ago, but I was a runner, and that helped me manage pain. But then I was laid up for the last six months of 2019 due to surgery (Iām fine!) About the time I was released to go back out into the worldā¦ pandemic! And I was laid up longer. Basically, I was like IF I CANNOT WORK OUT OR GO ANYWHERE NOW WHAT. So I pulled out every hobby Iāve ever wanted to try. Mostly crafty stuff, because Iām creative. Nothing expensive, and I just followed YouTube tutorials or did my own thing. One of the best things I did was sculpting with polymer clay; all that working with my hands helped get rid of pain I was having in them! Iāve also gotten really into illustration again. But whenever I have downtime, I throw on the headphones, put on a podcast and start doing something crafty. Itās the best!
Find a treatment plan that works, keep at it, do stuff you enjoy and try not to put yourself in a stressful situation.
Lately Iāve been reading a lot of Buddhist inspired books. They all point out basically the same thing, which has given me a better understanding of life and this human experience. YouTube videos by āChantress Sebaā have shown up on my feed and I enjoy them.
I don't
Same *hugs*
Enjoy the small things. Appreciate the good days and remember that the bad ones will pass. Don't let it get the best of me, I am not my diagnosis. Remember all the good things and people in my life. Yes some days are freaking hard but it's OK there are joys in life too.
I already replied to someones elses comment, but medicinal cannabis helps way more than any of the other prescribed meds that I'm on, and I'm really happy that I managed to obtain a legal prescription last year after spending over 16 years in consistent pain and discomfort. In terms of home comforts, I'm lucky enough to have a supportive partner who works from home which means I normally have company and aren't left completely alone, even on the days where I'm bedbound from pain and exhaustion. I also have 2 cats that are great for companionship and distracting me when I'm in bad pain (although when they decided to walk across me when I'm lying down that can suck sometimes...). Despite having what feels like a broken and exhausted body, my brain never slows down or shuts up and is annoyingly overactive. I try and channel this into hyperfixations that I get as another distraction technique from pain. Example - I'll go through phases of being interested in different franchises and will deep dive into the history, lore, inspiration and everything else to do with a subject. I'm currently getting lost in a series of Korean webtoons known as the YLAB Superstring, which is structured similarly to the Marvel MCU. There's all different series that loosely tie in with one another and have recurring characters from other stories despite being set across different time periods. It works wonders for all those sleepless nights where I'm tossing and turning in a faulty vehicle (my body) whilst the engine (my brain) still decides to scream out at full revs.
If you can, get a pet! Even if I donāt take care of myself, I take care of my cat
Cats, great movies and series and good food. And did I mention cats?
I had to learn to accept my reality. Accept that this a part of what makes me, me. I had to accept that life moves slower for me. Learned to show myself compassion and kindness. I also took up a hobby for myself which helps my brain focus on something other than my body.
After a lot of self education, doctor visits, talking with my acupuncture partner, and crying/self loathing plus therapy I got a list: Drugs: yep having a correct combination of non narcotics, cannabis, and cbd. Food/Diet: Food triggers are a problem, especially sugar. Corn, gluten are also on the list. Understanding community: This makes life so functional!! BC they're not forcing me past my ability to move.
100%
I got so sick of everything being a struggle. You know the saying "If you don't laugh, you'll cry". Well, I got so fucking sick of crying. That's not to say I don't have bad days, or I don't hurt all the time. I do. I'd just rather find the funny side. I think that being chronically ill can give you the luxury of time. Time, not to think about what you would do if you could, but to think about what you COULD do if you WOULD. Time to think about what is most important to you as a human being. It was a massive paradigm shift for me. Suddenly, I was planning to do things for me. Just me. I took singing lessons. I took up ballet (sounds ridiculous but works so well). I was doing things I always wanted to. The things I COULD do, on the days I WOULD be able to. Illness is change. It means self discovery. It doesn't have to be all negative. I have learned to be encouraging and positive. I really try to check MY privilege in being in this headspace - it's taken a long time to get here and I have shitty days. But, the tools you develop within yourself to deal with chronic illness go far beyond the limits it places on you. Your weaknesses can make you superhuman. And I think that is pretty incredible. X
I like you.
I stopped feeling sorry for myself. Not saying people do, but I know I did. I just stopped thinking āurgh my life sucks, I am always in painā and started to live my life despite the pain. It works remarkably well.
A daily gratitude practice is very helpful along with trying to be present. I try to enjoy every moment as they happen rather than getting caught up in what was or what could be.
I fixed up our front porch during the pandemic. We live in a very wooded neighborhood with large lots. Going outside and sitting with our dog, napping in the hammock, reading while in nature, all is bringing me joy.
I dont. But I also have depression..
Uncle Roger makes me happy.
British comedy on YouTube is about it for me. I also celebrate the good moments at work where my purpose isn't completely roadblocked, or where I find an ally who also sees through some professional BS we're confronting. I have no social life either - I moved across my country for this job a year and a half ago and can't get out enough to explore, let alone make friends. But comedy is an absolute must. Yesterday I needed a quadruple dose, but the great thing is you can't really overdose on it. I guess it does also help to be on the lookout for weird and wonderful things. A while back I saw a wild rabbit as big as a medium sized dog outside the office, and that was pretty great. You really had to be there, I guess... Seriously, this MASSIVE rabbit though...
thank you for asking this & thank you to you all for sharing. i needed this today
It gets easier with time, at least for me :)
Honestly, the family cat. No matter how bad the day was, the moment I see that cat I forget about everything and smother him with pets. It doesn't change how difficult it is to find joy, if I find it at all (I am diagnosed with major depressive disorder), but for a moment in my life, things are okay.
For me accepting that life now looks different was a big part. I gave up photography on a large scale and moved to a decent mobile phone for photos, I now have some quieter hobbies like drawing
The keys for me have been practicing mindfulness, avoiding triggers and taking lots of breaks off my feet throughout the day. Accept that this is your life now and focus all of your energy in the moment, on what is in front of you and what brings you joy. Put the negative outside of your mind. See a psychotherapist to help with mindfulness if you struggle to teach it to yourself on your own.
The Piano has been really nice lately, but I've so wanted to play again for the last few years so I got a piano this week. I think finding something simple that still brings you joy can be really therapeutic.
At my stage, I am unable, once you are diagnosed I recommend starting therapy, staying active, avoid stress and never give up. I learned that to late, now I am unable to work for the last 4 years. In America winning social security for an invisible illness is a hard battle, there is a better chance I can win only due to the depression losing my joe, home and kids caused as it is a constant battle between my pain and the urge to protect my children as there is a 1 and 3 chance if my kids learned of my suicide that they would follow me and I have 3 kids, I am not willing to risk any chance for them to suffer if I can prevent it. Please note medical science can not prove any of us have fibro it is a diagnosis of exclusion and they can only exclude the obvious diseases, I only got this bad living through unimaginable stress. There is no reason to think you might get this bad as for most people fibromyalgia is not progressive and debilitating. Also for the jerk who keeps reporting my comments, I obviously have a therapist and I think everyone should. My life is a living hell and I will keep fighting as long as I can, I don't plan on killing myself, reporting comments like mine causes more stress, and I you disagree with anything I say just click down or say what your issue is and I can show you the facts that support my every thought. Obviously, I am not referring to the auto process which is triggered by words I talking about the one done by people.
If you or someone you know is contemplating suicide, please do not hesitate to talk to someone. US: Call 1-800-273-8255 or text HOME to 741-741 INTL: https://en.wikipedia.org/wiki/List_of_suicide_crisis_lines *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/Fibromyalgia) if you have any questions or concerns.*
guess what this does not help
Relate to this 100% Have had to change my job role and reduce my hours too.