1. My dancing , choreography , career . 2. Being alone and not understood , 3. feeling like a ghost and living in the darkend bedroom . 4. Not being able to help others in this world gone mad . 23 years now.
I'm Kavita I used to be a Tap Dancer I really miss that. I Loved the Ocean and body Surfing. I miss that I used to be in great shape tall and lean. Now I am 307 lbs I miss when I was in great shape. Thanks Johnny😢
I miss the simple things… earning an income (which affects my self worth as well as my ability to seek medical care) having a clean home and baking (I used to love to bake and would bake more if I had the energy)
I miss the ability to access the knowledge I have/ had to have an intelligent conversation. I miss being able to have social interactions. I miss working out and having muscle tone. I miss being able to look forward to an event instead of worrying if I will be able to do it /stressing on the how to prepare for the best outcome. I miss having a career. And so much more ! Julia 34 yrs of ME/ CFS
1. Socialising (family/friends). 2. My job (job satisfaction and financial independence and security). 3. The feeling of waking up refreshed physically mentally and emotionally.
In no particular order... Being able to go to social gatherings without getting exhausted Taking long hikes in the mountains Being able to listen to the music I like whenever I want
Things I miss - 1. I sit on the sideline and watch my children grow up without me 2. Being able to cook for my family 3. Being able to leave my house for longer than an hour a week Most importantly I miss not feeling guilty and useless all the time
1. My ability to rock climb (all my muscle I spent 6 years building up). 2. Being able to connect with others on a basic level. They never get how sick I am and it makes me feel alone and not really human. 3.Experiences that come with being a young adult. Going to college, making new friends, getting a job etc. 4. Loss of my mind. Thinking makes me feel like I’m wading through a swampy marsh in a fog. -Ruby
I miss being part of a team, I miss my paddling, being out on the water…. Even though I’m an introvert, I miss being able to socialize….I can usually handle a conversation with one or two people, but add one more, or a crowd in the background and I’m done. I miss being able to drive - to just hop in the car and go visit my daughter, or my mom, my friends, run errands….. But I am grateful for a few things that have come out of being sick… I’m grateful for my ever increasing ability to let go… to let go of my competitive side, to let go of my drive for perfection. I’m also grateful for my increasing ability to accept help, to accept my limitations, to learn to live in the moment as I never know how I’ll be feeling in a hour, a day, etc… And I’m grateful for the love and support from my husband, my family, friends 🥰
Family functions birthdays wedding .holidays. walking my dog on long walks .friends going to pub listening to I've groups and getting up dancing .going to garden centre. Trips out to the beach with daughter with the dogs and many more things hugs to all xx.
A few of the many, many, things I miss: My morning walk around the lake Going out for dinner with my friends My nursing career and interacting with colleagues, patients and their families Having a shower every day Swimming at the beach 🏖️ Andrea (Australia).
1) Friends/social activity 2) The ability to commit to anything, i.e. involvement at church, social groups, etc because I never know whether I'll be up to going 3) Running around Mach 5 with my hair on fire lol - I used to be the person who never stopped, did it all.... and I miss that so much 😢 Thanks Johnny for trying to bring awareness to this terrible monster so many of us live with!
1) Friendship and Social Development (from the age of 15) 2) Reading Books 3) Exploring new places (the furthest away from home I've ever been is hospital)
Hey, y’all! 1. Spontaneity. Just getting up and going somewhere, or if someone needs something, I can do it right then. 2. Ability to get what needs to get done when I want to do it. 3. My brain working at full capacity, being cognitively sharp, not having to try to remember words when attempting to communicate. Love to all!❤Wendy
Socializing and the fast pace of life would be my #1. My family owns a restaurant and I used to run the front of the house. Loved chatting with customers, being in that action packed environment . I haven’t been there in almost 3 years. Working from home now and even that is hard. Gardening and other more intense outdoor activities. Driving. I have the hardest time driving even the shortest distances. It just wipes me out, plus I constantly forget where I am or where I was going. I’ll throw in traveling, even though I still travel for the sake of my husband and kids. Used to get so excited planning and waiting for that family trip. Now it’s daunting and it devastates me mentally and physically. Used to go on spontaneous last minute trips, now it takes so much pre planning to set my self up for the best possible outcome . Amy
You nailed my top three. I would just add landscape and travel photography. I've learned to change my subject matter to what I can occasionally target from my car window, when I'm up to it, but it isn't the same as hiking to magnificent places and capturing the moments and memories. We all make do with what we have. Hopefully some day...
Good question. I miss.... 1. Long walks/hikes with my hubby 2. More time with my Grandchildren 3. Being Spontaneous 4. Not knowing what tomorrow will be like. 5. Friends
1. Hard work...Sounds dumb, but I loved hard work. Roof tiling, building, concreting, landscaping etc. I suppose it's similar to what you said about working out. Hard work was my workout, and I loved it. 2. Good restful sleep at the right times. I tend to sleep all over the shop, and it's never refreshing. 3. Being happy to be alive. Sorry it sounds very melodramatic, but it's how I used to be. I'd wake up from a goodnight sleep and be so stoked to be alive and be so excited for what the day holds for me. EDIT: You can list this in your live if you wish, but I'd prefer to be anonymous. Thank you.
I've had ME since 2000. Bedridden for about the last 10 years. 1. Any family get together 2. Being present in my children's lives 3. Leaving the house or even my room
I missed the opportunity to get a degree, to have a career and to have the lifestyle of someone with an income. I did gain a totally different perspective on life though. Even at 15 (when I got sick) I was driven, I had big plans for studying, travelling and a huge academic career. I learned that a degree is not the be all and end all and that it is much more important *who* you are than what career you have. I learned to just “be” rather than “do”. I still miss lots of things, particularly now I’m in a nasty flare up. I miss doing things with my kids, cooking for my family, camping… But I’m grateful I managed to *have* a family!
I miss sport and the great joy and exhilaration I got from it. I miss walking, hiking, camping etc in the countryside, the joy that comes from being in nature. I miss travelling and experiencing other cultures. I miss not being able to travel to other countries to stay with friends and family. I miss spontaneity. I miss dancing. I miss going out with friends. I miss having friends. I miss meeting people. I miss working in a team. I miss being able to help my family. I miss seeing my nephew grow up. I miss seeing my brothers and sister whenever I want. I miss being able to grow my own food and look after my garden. I miss being able to bake and eat bread. I miss cooking up a storm. I miss so many foods that I now cant eat. I miss having a dog. I miss looking for 'gems' in charity shops (thrift) and car boot sales. I miss being full of life and energy. I miss going to parties. I miss driving. I miss painting. I miss being independent with house repairs and creative decorating. I miss being able to get creative in whatever way I chose. I miss being able to go to knit night. I miss being able to have a sexual relationship. I think I should probably stop there.
Joy A sense of purpose My ability to make plans and be counted on to follow through. Travelling Hosting holiday dinners Visiting family Doing music and crafts
Socialising/relationships, miss being able to go places without worrying I'll have to cancel because I'm too unwell. Dashing about how I used to, going to work Having a morning/day where I wake feeling rested and without pain Miss being a healthy me...
I know I'm adding this comment really late, but here goes: I miss my vibrancy, my get up and go and being involved in everything. I miss standing up straight. I miss getting up in the mornings. Strong and pain-free. I miss long walks in the park, activities with my family and friends like going out to dinner. Now, except for going to the bathroom and the refrigerator, I am in my lazy boy recliner for virtually the entire day with no energy.
WHEN ARE YOU COMING BACK LIVE? THANK YOU FOR DOING THIS!!! 1. I miss popping out of bed in the morning and feeling physically well, joyful, light-footed, and ready to leap into the day. 2. I miss spending time with people, going to church in person, going on picnics or biking or climbing or fly-fishing. I miss playing in a bagpipe band and going to the Highland Games. I miss the vibrancy of interaction with others who spontaneously share my interests. 3. I miss being able to go to work and do the job I was trained for which is helping other people. It is hard to remember that this is a new phase of life for now but my hope is always that God has a plan and a purpose and that this time of life is purposeful in some way. What I have gained -- WHICH IS MORE IMPORTANT TO ME: 1. I am more dependent on God's grace out of necessity and when I was well, I frittered away time and energy as if I had an endless supply. Now I know how precious it all is. I value life more. 2. I am constantly inspired by people who are overcoming great odds. They are loving, humble, contributing to my life in many ways but always encouraging me in hope and patience. 3. I am very aware that I am a more compassionate and better person because I don't respond quickly but measure my thoughts, words, and energy so it contributes to the those around me instead of dragging them down. The gain side weighs heavier and I am grateful for that. I had to process the shock of no living the kind of life I thought everyone had. I had to accept the thwarted expectations about how my life would unfold. I had to get over what I planned and learn to revel in what is. The more I can become submerged in reality, the more engaged I am in my own life, and the more grateful I am for my altered perspective. It has been a very big adjustment -- no doubt about that -- but I have no doubt that my life is terrific although it's not how I thought it would unfold. Don't judge the quality of the ride on a rollercoaster at the beginning. Don't get off at the top. Stay seated and wait until the ride is over and has come to a complete stop. Ride it a couple of times. There is a thrill for me every time.
Love, love, love the list of things you've gained! I, too, have gained alot of the same things and know beyond any shadow of a doubt that I would not have gained such things had I not become ill.....
@@penneymcnutt4413 I have been so blessed by illness! I have to go back to Stanford for surgery follow-up and to meet a new ME/CFS doc. While I'm, my Siberian, Stella, is having a new dog sitter and she came over today with her long-haired doxy so we could all get acquainted and she is fabulous! I can't wait to get home and get to know her more. She travels a lot and has converted her car to a car-sleeper-camper. I get to live through her experience and travels. It makes me be a good listener because I don't get to travel much now, and especially not for the pure fun of it.
@@penneymcnutt4413 I added some at the bottom of my GAIN list. And thank you for your encouraging comment. You made my day! And I love that smiley picture of you!
I'm 60 and got back together with my first boyfriend and lifetime best friend, of 40 years, and I was the happiest I thought I could ever be. He left me because he said, repeatedly, that he couldn't deal with my illness, which is relatively moderate, in that I am self-sufficient and can still go to some events occasionally, so it would not have had to curtail his life much at all. So I lost everything to ME/CFS. I'm not going to build a new life with someone else now. I am looking at being alone because of this illness, and I don't even have access to the distractions that one might use to get over such a blow, like making plans with friends I don't have or signing up for a class I'll rarely be able to attend, and so on.
I miss playing 9 holes of golf, carrying my bag on my shoulders and watching the sunset as I finish my round. I miss being able to play piano for an hour or more at a time. I'm a piano teacher who doesn't practice....not very good. I miss being able to do prison ministry and reaching out to the inmates with the Good News of the Lord Jesus Christ. I miss a lot of things for about the last 6 years. With the Plandemic it's even worse. That took away my income. I essentially have been poor since March 28, 2017 when I first got a shot that I didn't want, that lead to the MECFS. So, yes life is tough, but God is Gracious and Merciful and He is always there when we need Him. Thank you for your channel and may God Bless you and your family. Miss Monique 🙂🌷🙏🎶🎉🎆🕊️
@@Stak1776 My doctor at that time wanted me to get a tetanus shot. Though I said NO three times, the nurse came in and jabbed me with a tetanus shot anyway. So that started the CFS. On May 14, 2021 I got my second Moderna shot which gave me Myalgic Encephalomyolitis. Therefore, MECFS of which now I am about 70 to 80 percent improved. It's been difficult, but God is in control!! Miss Monique 🙂🌷🙏
Interesting quote from Diane Keaton about missing things in life: " “...life is haunting! You have an idea in your mind of what it is, or what it should be, or what it could be. But it’s not that at all! It’s just things going up and down!”
My muscle tone, strength and flexibility. I used to practice yoga for similar reasons. It helped with anxiety and anorexia. I'm weaker now than when I was at my lowest weight. Eating something without fear of digestion problems and bloating. Sleeping like a log. Doing art. Brushing my hair without fear of it all falling out. I sure miss being able to just WALK places. I used to walk everywhere, loved effortless country ambles with my family. This leads to the last thing that breaks me up the most, and that's being a parent to my kids. They don't understand why mummy "can't do fun things anymore", it breaks my heart that I won't be there for my grandkids like my grandparents were for me. My heart goes out to all those suffering - Zoe Question:- Has anyone TRIED traveling anywhere? What was your experience? I ask because some have said they felt better when going somewhere else, somewhere warm and dry or altitude. I noticed that a bit. Certain places definitely make me feel better/worse. I thought of maybe going somewhere that has clean air, low pollution, but the thought of being ill while away from home terrifies me.
As far away from a City and EMF ( Wi-fi ). For me a Secluded Health Spa works and helps 100%. Unfortunately I can not support myself in such a remote area and have to return to the City which in a way makes it worse! Is like having knowledge of a cure but you just can't afford it full time!!!😒
Having a job, going out to playgrounds with my kid, being oblivious to my bodily needs, being able to finish a train of thought (I edited to add this, sadly...)
I miss working! I was Happy at the age of 58-59! Finally had a job that fulfilled me with income & with new friends! Now both are gone! Mostly I Miss out on going & seeing things with my grandkids!!! That hurts 💯
I just found this channel, so I'm a little late to the party in making my comment. These are the things I miss the most: 1. I lost touch with friends during the pandemic, and it killed my church. Now I have to watch church services online. I miss being at church and interacting with people. 2. Driving. I am so dizzy and my reflexes are so slow, I don't dare drive. I have to rely on my husband, son, and paratransit in order to go anywhere. 3. Doing my job well. I'm a freelance editor. I have slowly lost the ability to do bigger jobs and then the smaller jobs as well. It's stressful to try to do anything, which doesn't help my health.
Fond memories of: Spontaneity. Exuberance. Being unbridled. Exhilaration. Exhaustion from physical labor in the garden. Grateful for: Greater self-control. Satisfaction from new places and circumstances. Increased gratefulness. Kindness of friends.
Hi Y'all! Here is the top 3 things I miss most, in order. 1st: Active life - just being Active at all. (Especially with my kids) 2nd: Social life - any and all things Social. (Again, also with my kids) 3rd: Career - further studies/pursuing the career I LOVE and had to give up, due to ME. Loved to be able to teach my kids.
In a nut shell I miss being alive I feel that cfs is a form a death a long and slow dying process it takes away everything I hate this monster God how I wish that it would go away please can't someone help us its been too long to let us continue to suffer this way.
I don't mean to split hairs but what I have gained is so great compared to what is no longer an active part of my life. I can use the word "missed" as long as it's "to fail to comprehend, sense, or experience as in missed the point of the speech". I don't fall into melancholy or the agony of despair. I'm not so that attached to any part of my life other than what is before now. I have to trust God and know that no matter what I'm doing, he gives my life meaning and purpose. I try to focus on what is happening now. I used to have really amazing muscles in my arms, my body, my legs. They come and they go depending upon how ill I have been at various times. I did get to have a season where I got to dance: ballet, tap, and hula. I had the opportunity to travel with the USO. But that season passed and I spent time resting and being bedfast. I had time to be contemplative. I got better and spent time building muscles and honing my skills as a technical climber. That season passed and I spent time in contemplation while my body became an unfamiliar lump and the muscles went away. In another attack of wellness, I took up Scottish drumming and again had ripping muscles from carrying a double-snare Scottish drum (twice as heavy as drum corps) and my arms, hands, upper body, and legs again had incredible strength. But not now. I have really great memories of all of those adventurous and would like to do them again but my body isn't cooperative right now in those areas. But I am waiting to find out what is open to me next time I have an attack of wellness and I get to participate in and interact with a new and unknown part of this great Creation. If I hunt for things to "miss", I might miss out on a blessing that is staring me in the face. If I look for disappointment, I will find it. Also, if I look for joys, I will find those.
I miss running, I miss the freedom of having a normal body, I miss the use of my mind
1. My dancing , choreography , career . 2. Being alone and not understood , 3. feeling like a ghost and living in the darkend bedroom . 4. Not being able to help others in this world gone mad . 23 years now.
friends, family, freedom
I'm Kavita
I used to be a Tap Dancer
I really miss that.
I Loved the Ocean and body Surfing.
I miss that
I used to be in great shape tall and lean.
Now I am 307 lbs
I miss when I was in great shape.
Thanks Johnny😢
I miss the simple things… earning an income (which affects my self worth as well as my ability to seek medical care) having a clean home and baking (I used to love to bake and would bake more if I had the energy)
Things I miss: exercise, career, travel. -Matt
I miss the ability to access the knowledge I have/ had to have an intelligent conversation. I miss being able to have social interactions. I miss working out and having muscle tone. I miss being able to look forward to an event instead of worrying if I will be able to do it /stressing on the how to prepare for the best outcome. I miss having a career. And so much more ! Julia 34 yrs of ME/ CFS
Myself, the person I used to be. Still in grief.
1. Socialising (family/friends). 2. My job (job satisfaction and financial independence and security). 3. The feeling of waking up refreshed physically mentally and emotionally.
ability to work, meet friends, travelling, freedom to do everything whenever I want to do it and not to wait for energy
Social Life and Family Gatherings/Events.
Nursing Career
Travelling
Walking
Much Love. Rachel UK 🇬🇧
In no particular order...
Being able to go to social gatherings without getting exhausted
Taking long hikes in the mountains
Being able to listen to the music I like whenever I want
Things I miss -
1. I sit on the sideline and watch my children grow up without me
2. Being able to cook for my family
3. Being able to leave my house for longer than an hour a week
Most importantly I miss not feeling guilty and useless all the time
My independence.
Seeing friends.
Going to concerts.
Being able to read a book.
Going for walks.
Waking up feeling rested and not hurting.
1. My ability to rock climb (all my muscle I spent 6 years building up).
2. Being able to connect with others on a basic level. They never get how sick I am and it makes me feel alone and not really human.
3.Experiences that come with being a young adult. Going to college, making new friends, getting a job etc.
4. Loss of my mind. Thinking makes me feel like I’m wading through a swampy marsh in a fog.
-Ruby
Listening to music for hours, seeing friends, various mental health qualities
I miss being part of a team, I miss my paddling, being out on the water….
Even though I’m an introvert, I miss being able to socialize….I can usually handle a conversation with one or two people, but add one more, or a crowd in the background and I’m done.
I miss being able to drive - to just hop in the car and go visit my daughter, or my mom, my friends, run errands…..
But I am grateful for a few things that have come out of being sick… I’m grateful for my ever increasing ability to let go… to let go of my competitive side, to let go of my drive for perfection. I’m also grateful for my increasing ability to accept help, to accept my limitations, to learn to live in the moment as I never know how I’ll be feeling in a hour, a day, etc…
And I’m grateful for the love and support from my husband, my family, friends 🥰
Myself
Family functions birthdays wedding .holidays. walking my dog on long walks .friends going to pub listening to I've groups and getting up dancing .going to garden centre. Trips out to the beach with daughter with the dogs and many more things hugs to all xx.
A few of the many, many, things I miss:
My morning walk around the lake
Going out for dinner with my friends
My nursing career and interacting with colleagues, patients and their families
Having a shower every day
Swimming at the beach 🏖️
Andrea (Australia).
Have you got muscle pain everyday.from.your me
1. Planning.
2. My community
3. A social life
1) Friends/social activity
2) The ability to commit to anything, i.e. involvement at church, social groups, etc because I never know whether I'll be up to going
3) Running around Mach 5 with my hair on fire lol - I used to be the person who never stopped, did it all.... and I miss that so much 😢
Thanks Johnny for trying to bring awareness to this terrible monster so many of us live with!
1) Friendship and Social Development (from the age of 15)
2) Reading Books
3) Exploring new places (the furthest away from home I've ever been is hospital)
Hey, y’all! 1. Spontaneity. Just getting up and going somewhere, or if someone needs something, I can do it right then. 2. Ability to get what needs to get done when I want to do it. 3. My brain working at full capacity, being cognitively sharp, not having to try to remember words when attempting to communicate. Love to all!❤Wendy
Socializing and the fast pace of life would be my #1. My family owns a restaurant and I used to run the front of the house. Loved chatting with customers, being in that action packed environment . I haven’t been there in almost 3 years. Working from home now and even that is hard.
Gardening and other more intense outdoor activities.
Driving. I have the hardest time driving even the shortest distances. It just wipes me out, plus I constantly forget where I am or where I was going.
I’ll throw in traveling, even though I still travel for the sake of my husband and kids. Used to get so excited planning and waiting for that family trip. Now it’s daunting and it devastates me mentally and physically. Used to go on spontaneous last minute trips, now it takes so much pre planning to set my self up for the best possible outcome .
Amy
You nailed my top three. I would just add landscape and travel photography. I've learned to change my subject matter to what I can occasionally target from my car window, when I'm up to it, but it isn't the same as hiking to magnificent places and capturing the moments and memories. We all make do with what we have. Hopefully some day...
Good question. I miss....
1. Long walks/hikes with my hubby
2. More time with my Grandchildren
3. Being Spontaneous
4. Not knowing what tomorrow will be like.
5. Friends
1. Hard work...Sounds dumb, but I loved hard work. Roof tiling, building, concreting, landscaping etc. I suppose it's similar to what you said about working out. Hard work was my workout, and I loved it.
2. Good restful sleep at the right times. I tend to sleep all over the shop, and it's never refreshing.
3. Being happy to be alive. Sorry it sounds very melodramatic, but it's how I used to be. I'd wake up from a goodnight sleep and be so stoked to be alive and be so excited for what the day holds for me.
EDIT: You can list this in your live if you wish, but I'd prefer to be anonymous. Thank you.
I've had ME since 2000. Bedridden for about the last 10 years.
1. Any family get together
2. Being present in my children's lives
3. Leaving the house or even my room
❤ ich fühle mit dir Gruß aus Deutschland 😌
Relationships
Career
Events
Travel
Exercise
My life, purpose, friends, having a family, it literally steals everything.
Walking my dog
Days out with my family
Shopping
I missed the opportunity to get a degree, to have a career and to have the lifestyle of someone with an income.
I did gain a totally different perspective on life though. Even at 15 (when I got sick) I was driven, I had big plans for studying, travelling and a huge academic career.
I learned that a degree is not the be all and end all and that it is much more important *who* you are than what career you have. I learned to just “be” rather than “do”.
I still miss lots of things, particularly now I’m in a nasty flare up. I miss doing things with my kids, cooking for my family, camping…
But I’m grateful I managed to *have* a family!
I miss sport and the great joy and exhilaration I got from it. I miss walking, hiking, camping etc in the countryside, the joy that comes from being in nature. I miss travelling and experiencing other cultures. I miss not being able to travel to other countries to stay with friends and family. I miss spontaneity. I miss dancing. I miss going out with friends. I miss having friends. I miss meeting people. I miss working in a team. I miss being able to help my family. I miss seeing my nephew grow up. I miss seeing my brothers and sister whenever I want. I miss being able to grow my own food and look after my garden. I miss being able to bake and eat bread. I miss cooking up a storm. I miss so many foods that I now cant eat. I miss having a dog. I miss looking for 'gems' in charity shops (thrift) and car boot sales. I miss being full of life and energy. I miss going to parties. I miss driving. I miss painting. I miss being independent with house repairs and creative decorating. I miss being able to get creative in whatever way I chose. I miss being able to go to knit night. I miss being able to have a sexual relationship.
I think I should probably stop there.
Joy
A sense of purpose
My ability to make plans and be counted on to follow through.
Travelling
Hosting holiday dinners
Visiting family
Doing music and crafts
Weight Training and exercise in general
Having a Career/Social Life
Walking out in nature with my Dog
Socialising/relationships, miss being able to go places without worrying I'll have to cancel because I'm too unwell.
Dashing about how I used to, going to work
Having a morning/day where I wake feeling rested and without pain
Miss being a healthy me...
I know I'm adding this comment really late, but here goes:
I miss my vibrancy, my get up and go and being involved in everything.
I miss standing up straight.
I miss getting up in the mornings. Strong and pain-free.
I miss long walks in the park, activities with my family and friends like going out to dinner.
Now, except for going to the bathroom and the refrigerator, I am in my lazy boy recliner for virtually the entire day with no energy.
I miss being normal around my children. When I was pain free I could be spontaneous now I sit throughout their visit and am exhausted when they go.
Schön, dass ich diese Seite gefunden habe. ❤
Man fühlt sich hier verstanden. 😊
WHEN ARE YOU COMING BACK LIVE? THANK YOU FOR DOING THIS!!!
1. I miss popping out of bed in the morning and feeling physically well, joyful, light-footed, and ready to leap into the day.
2. I miss spending time with people, going to church in person, going on picnics or biking or climbing or fly-fishing. I miss playing in a bagpipe band and going to the Highland Games. I miss the vibrancy of interaction with others who spontaneously share my interests.
3. I miss being able to go to work and do the job I was trained for which is helping other people. It is hard to remember that this is a new phase of life for now but my hope is always that God has a plan and a purpose and that this time of life is purposeful in some way.
What I have gained -- WHICH IS MORE IMPORTANT TO ME:
1. I am more dependent on God's grace out of necessity and when I was well, I frittered away time and energy as if I had an endless supply. Now I know how precious it all is. I value life more.
2. I am constantly inspired by people who are overcoming great odds. They are loving, humble, contributing to my life in many ways but always encouraging me in hope and patience.
3. I am very aware that I am a more compassionate and better person because I don't respond quickly but measure my thoughts, words, and energy so it contributes to the those around me instead of dragging them down.
The gain side weighs heavier and I am grateful for that. I had to process the shock of no living the kind of life I thought everyone had. I had to accept the thwarted expectations about how my life would unfold. I had to get over what I planned and learn to revel in what is. The more I can become submerged in reality, the more engaged I am in my own life, and the more grateful I am for my altered perspective. It has been a very big adjustment -- no doubt about that -- but I have no doubt that my life is terrific although it's not how I thought it would unfold.
Don't judge the quality of the ride on a rollercoaster at the beginning. Don't get off at the top. Stay seated and wait until the ride is over and has come to a complete stop. Ride it a couple of times. There is a thrill for me every time.
Hey there, not sure yet. Maybe this weekend. Click on the Bell below the videos to be notified if you are interested. 😀
Love, love, love the list of things you've gained! I, too, have gained alot of the same things and know beyond any shadow of a doubt that I would not have gained such things had I not become ill.....
@@fight4me747 Already clicked on the bell. I didn't know that it would poke me every time you posted. Thanks! I'm updating my skills on social media.
@@penneymcnutt4413 I have been so blessed by illness! I have to go back to Stanford for surgery follow-up and to meet a new ME/CFS doc. While I'm, my Siberian, Stella, is having a new dog sitter and she came over today with her long-haired doxy so we could all get acquainted and she is fabulous! I can't wait to get home and get to know her more. She travels a lot and has converted her car to a car-sleeper-camper. I get to live through her experience and travels. It makes me be a good listener because I don't get to travel much now, and especially not for the pure fun of it.
@@penneymcnutt4413 I added some at the bottom of my GAIN list. And thank you for your encouraging comment. You made my day! And I love that smiley picture of you!
getting my blackbelt, had to sell my horses, going on adventures with my family , my life
Finishing college, hiking, being able to think clearly and articulate thoughts....
I'm 60 and got back together with my first boyfriend and lifetime best friend, of 40 years, and I was the happiest I thought I could ever be. He left me because he said, repeatedly, that he couldn't deal with my illness, which is relatively moderate, in that I am self-sufficient and can still go to some events occasionally, so it would not have had to curtail his life much at all. So I lost everything to ME/CFS. I'm not going to build a new life with someone else now. I am looking at being alone because of this illness, and I don't even have access to the distractions that one might use to get over such a blow, like making plans with friends I don't have or signing up for a class I'll rarely be able to attend, and so on.
❤ das kenne ich alles… 😢ich werde nächstes Jahr auch 60 .😌
I hope your coping ok I have had CFS 26 years though it's more now fybromyalgia very hard
I miss playing 9 holes of golf, carrying my bag on my shoulders and watching the sunset as I finish my round.
I miss being able to play piano for an hour or more at a time. I'm a piano teacher who doesn't practice....not very good.
I miss being able to do prison ministry and reaching out to the inmates with the Good News of the Lord Jesus Christ.
I miss a lot of things for about the last 6 years. With the Plandemic it's even worse. That took away my income. I essentially have been poor since March 28, 2017 when I first got a shot that I didn't want, that lead to the MECFS.
So, yes life is tough, but God is Gracious and Merciful and He is always there when we need Him.
Thank you for your channel and may God Bless you and your family.
Miss Monique 🙂🌷🙏🎶🎉🎆🕊️
If I may ask; Which shot?
@@Stak1776 My doctor at that time wanted me to get a tetanus shot. Though I said NO three times, the nurse came in and jabbed me with a tetanus shot anyway. So that started the CFS. On May 14, 2021 I got my second Moderna shot which gave me Myalgic Encephalomyolitis. Therefore, MECFS of which now I am about 70 to 80 percent improved. It's been difficult, but God is in control!!
Miss Monique 🙂🌷🙏
Interesting quote from Diane Keaton about missing things in life: " “...life is haunting! You have an idea in your mind of what it is, or what it should be, or what it could be. But it’s not that at all! It’s just things going up and down!”
My muscle tone, strength and flexibility. I used to practice yoga for similar reasons. It helped with anxiety and anorexia. I'm weaker now than when I was at my lowest weight.
Eating something without fear of digestion problems and bloating.
Sleeping like a log.
Doing art.
Brushing my hair without fear of it all falling out.
I sure miss being able to just WALK places. I used to walk everywhere, loved effortless country ambles with my family.
This leads to the last thing that breaks me up the most, and that's being a parent to my kids. They don't understand why mummy "can't do fun things anymore", it breaks my heart that I won't be there for my grandkids like my grandparents were for me.
My heart goes out to all those suffering - Zoe
Question:- Has anyone TRIED traveling anywhere? What was your experience? I ask because some have said they felt better when going somewhere else, somewhere warm and dry or altitude. I noticed that a bit. Certain places definitely make me feel better/worse. I thought of maybe going somewhere that has clean air, low pollution, but the thought of being ill while away from home terrifies me.
As far away from a City and EMF ( Wi-fi ). For me a Secluded Health Spa works and helps 100%. Unfortunately I can not support myself in such a remote area and have to return to the City which in a way makes it worse! Is like having knowledge of a cure but you just can't afford it full time!!!😒
Having a job, going out to playgrounds with my kid, being oblivious to my bodily needs, being able to finish a train of thought (I edited to add this, sadly...)
I miss working! I was Happy at the age of 58-59! Finally had a job that fulfilled me with income & with new friends!
Now both are gone!
Mostly I Miss out on going & seeing things with my grandkids!!!
That hurts 💯
I just found this channel, so I'm a little late to the party in making my comment. These are the things I miss the most:
1. I lost touch with friends during the pandemic, and it killed my church. Now I have to watch church services online. I miss being at church and interacting with people.
2. Driving. I am so dizzy and my reflexes are so slow, I don't dare drive. I have to rely on my husband, son, and paratransit in order to go anywhere.
3. Doing my job well. I'm a freelance editor. I have slowly lost the ability to do bigger jobs and then the smaller jobs as well. It's stressful to try to do anything, which doesn't help my health.
Great post. Reminds me that I am not the only one
Working/socializing, Motorsport, creating due to brainfog
Fond memories of: Spontaneity. Exuberance. Being unbridled. Exhilaration. Exhaustion from physical labor in the garden. Grateful for: Greater self-control. Satisfaction from new places and circumstances. Increased gratefulness. Kindness of friends.
Sound much better my friend , take care
Hi Y'all!
Here is the top 3 things I miss most, in order.
1st: Active life - just being Active at all.
(Especially with my kids)
2nd: Social life - any and all things Social. (Again, also with my kids)
3rd: Career - further studies/pursuing the career I LOVE and had to give up, due to ME. Loved to be able to teach my kids.
I'm missing being a teacher, getting together with my students and create something together. That was my porpouse in life 😢.
living with ME/CFS/SEID from 1998.
Also have EDS, PoTS and most of the coexisting conditions.
Me……..I miss me…….socializing……I miss being with people…energy……I miss being able to be human….
In a nut shell I miss being alive I feel that cfs is a form a death a long and slow dying process it takes away everything I hate this monster God how I wish that it would go away please can't someone help us its been too long to let us continue to suffer this way.
I don't mean to split hairs but what I have gained is so great compared to what is no longer an active part of my life. I can use the word "missed" as long as it's "to fail to comprehend, sense, or experience as in
missed the point of the speech". I don't fall into melancholy or the agony of despair. I'm not so that attached to any part of my life other than what is before now. I have to trust God and know that no matter what I'm doing, he gives my life meaning and purpose. I try to focus on what is happening now.
I used to have really amazing muscles in my arms, my body, my legs. They come and they go depending upon how ill I have been at various times. I did get to have a season where I got to dance: ballet, tap, and hula. I had the opportunity to travel with the USO. But that season passed and I spent time resting and being bedfast. I had time to be contemplative. I got better and spent time building muscles and honing my skills as a technical climber. That season passed and I spent time in contemplation while my body became an unfamiliar lump and the muscles went away. In another attack of wellness, I took up Scottish drumming and again had ripping muscles from carrying a double-snare Scottish drum (twice as heavy as drum corps) and my arms, hands, upper body, and legs again had incredible strength. But not now.
I have really great memories of all of those adventurous and would like to do them again but my body isn't cooperative right now in those areas. But I am waiting to find out what is open to me next time I have an attack of wellness and I get to participate in and interact with a new and unknown part of this great Creation.
If I hunt for things to "miss", I might miss out on a blessing that is staring me in the face. If I look for disappointment, I will find it. Also, if I look for joys, I will find those.
How ya doing bud?
Hangin in there. You?
@@fight4me747 take care of yourself.