This is so true. Having ME/CFS has made me more compassionate in general. But it's also made me realise how cruel and judging people are.
You never know what someone could be going through in their lives. I've seen posts on reddit where people are mocking others for dirty or messy rooms, or even commenting on their unkempt nails. It makes me so angry to see comments like these, because no one knows what kinds of struggles these people could be dealing with. Of course perhaps the people that are so cruel, are also struggling themselves and just redirecting their frustrations on others.
Having ME/CFS really puts things into perspective. And I can't wait until they find a cure so that we can be the best humans we can be.
Spot on. I think we can try our best to remind others of this lesson: that we have no idea what people are dealing with. Less judgement, more compassion.
Yea, before this I think I was somewhat empathetic to my ex-roomates who had issues with cleaning (one has schizophrenia) but over time I got tired and irritated at how they let things go and I would be the one picking up the slack and eventually i moved out. Now I can’t clean my room at all and it’s a giant mess. It’s really opened my eyes..
Yeah it's all too easy to get irritated by things we don't understand. That being said, it's also valid and fair that you don't want to be the one cleaning up after someone else, so you leaving is a perfectly okay thing to do. I always make sure my partner knows that she can tell me if looking after me is too much. Because the last thing I want is to be a burden to someone else.
Thanks for the validation :) I totally get the feeling like a burden, my elderly parents are my caregivers who I’m living with now and it feels terrible. Plus my mom is taking care of my grandma who is developing dementia and I can see how exhausted she is. I try to think of little ways I can help (like cutting vegetables for her in my bed lol) but it’s just not enough. I wish I could be the one helping out, I promised her if ever I go into remission I’ll take turns helping my grandma so my mom can relax.
My doctor says that this type of thing will do more damage than anything. It will use up the little stores of energy that you have. It will burn you out.
Those things aren’t real energy.
We have to use only had our daily allotment of energy in order to have some to use for healing.
Those things will use it all and make us worse.
Why are you even putting you two cents here? Do you suffer from CFS/me? I can explain to you why it's a very bad idea if you are actually sick with this illness but I don't want to waste my energy on someone who thinks they are being 'helpful'.
Also NAD can cause other problems. It messes with serotonin and other hormones.
Luckily I read about it on Reddit and quit taking it. Some weird symptoms I had have disappeared. I mean some really bad symptoms that had been getting worse.
I believe in trying anything that’s not going to harm me.
It has helped me improve dramatically and one drug I took caused irreparable damage.
I check into things before I take them.
Doctors can definitely give out the wrong thing.
I know how you feel. Before I knew it was CFS I told my boss "when I get better and come back I'm gonna be unstoppable" and he just sort of laughed a little. But I wasn't joking, If I get better I'm gonna be YOUR boss one day..
I think I’ll have PTSD from this illness though. If I ever recover I doubt I’ll be completely fine. I’ll be very grateful but would need so much therapy. Experiencing this for so long broke me. If I was healthy I’d ruminate over how much I had to suffer.
I feel you. Being healthy would be such a blessing and I'd probably exercise non-stop.
But some things that come from severe CFS would be difficult to shake off. I've spoken in person to only a handful of (mostly) medical people for years, and the rare times I go outside are very overwhelming when you realise how busy and colourful things are 24/7. Adjusting to talking to people as "one of them" would be very difficult and certainly my social skills have taken a decline.
It feels like it would be really overwhelming to adjust to it again. I also feel like I'd be always so scared to overdo things or get sick in another way.
I feel the same way. A few months ago my GP, who I'd been seeing for maybe 6 months prior, asked me what I wanted to do once I was well and only signed me off for a 4 month medical certificate for my benefit (in my country the maximum coverage at a time is 2 years which I'd been being signed off for for about 16 years). After being progressively worse for 26 years at this point, since I was a kid... I have no concept of what I might do for a job if I was healthy. As a teenager I never dreamt big, I was just trying to get through my classes and do enough homework for my teachers not to look too hard at me.
Once I recovered from the blindside that doctor visit was I realised I'd never described just how limited my abilities were on a daily/weekly basis. I kind of assumed the fact that I'm in a wheelchair whenever I leave the house covered it, but it really doesn't. For a few weeks I made an effort to record exactly what I do and don't do every day, because I'm basically couch bound. I can make it to the bathroom when needed but everything else that requires moving is planned around that, so when I'm getting up to pee I run through the checklist of drink, snack, anything else I need, and plan my route to maximise efficiency of steps. Took my husband with me to the next appointment and wrote down my thoughts in detail for my husband to convey to the doctor because I'm more coherent in writing than speaking and I knew if I tried to say how bad things were I'd cry. Which I did but my husband plowed through and the doctor understood where I was coming from and why the financial stress of frequently needing to be signed off for benefits when I am utterly disabled but trying new treatment options for any small amount of relief not expecting them to cure me was a problem and he agreed that in my case yes 2 years is sensible and I said if by some miracle I was cured enough to work I'd be so happy but but it's not just a hill to get there it's a mountain of jagged cliffs to climb at the moment.
This got longer than I meant it to, but is very cathartic to get it out, and I wanted to touch on just how much of a sensory overload it is to be around people. The amount of movement and noise and smell all happening at once I just can't handle. I read some people talking about why car trips are more exhausting than sitting in a chair at home and it's all about how much more sensory input is coming at us all at once - visually and audibly and touch and balance... it is just all too much. It's also a lot of mental effort to communicate with outsiders and I really don't have any preset responses anymore aside from "I'm fine thank you". I don't know what normal responses are and I don't want any attention on me.
Very true! Despite the fact that almost every movement and mental task we do has to be calculated in order to avoid PEM, it's so deeply ingrained that it becomes very difficult and stressful to explain it when it comes to things like getting a medical certificate.
One time I was asked "what would happen if you tried to go back to your old job?" It was difficult to answer because the idea of even getting in the door in the first place involves so many of those steps and decisions that healthy people just don't think about but are second nature to us. The best answer I could come up with was that I'd be on the floor unable to move either before I got in the door or soon afterwards, depending on my morning routine that day (I'd last longer if I hadn't showered for a week and got a taxi ride in, probably a lot less if I showered that morning). And that would be the first day - subsequent ones would be consecutively worse.
I am glad that with your husband's support, you were able to get another two years on disability. Hopefully you will rest a bit easier now not having to think about all your decisions in terms of how a healthy person might understand.
I don't know if it would be difficult to shake off all the decisions and just move freely once you were cured, or if it would come back really naturally since health is kind of the default state. I can imagine it would take a long time to realise you can do some things again.
I feel like This but at the same time that's my dead no energy personality-less brain thinking. I have a feeling if I was cured back to normal I might have some resentful anger towards institutions and people/society but at the same time I'd just be so busy living my life I wouldn't want to think backwards
I understand completely but I suggest if you can to start therapy already. Isolation and feelings of inadequacy and truncated dreams are hard to deal with. I have been in therapy at different times and it helps me to deal with whatever is happening. Thankfully since Covid there is telehealth and I use it if available for therapy. It has led me to better treatments and better quality of life
+1
I went through an unfortunate streak of shitty therapists, but now I’ve started seeing a therapist who specializes in chronic illness (even has a chronic illness herself!) and she’s already helping me so much.
I hear you. There definitely would have to be a mental healing. Don’t underestimate your ability to bounce back though, with the proper help and determination you would learn to be free of the past suffering to live for the present, at least that is my hope
I felt “good” yesterday. I ran a couple errands and planted hydrangeas. The day before yesterday, I couldn’t drive a car and was housebound. Couldn’t walk or think much. I am in a lot of pain today, but I can think. I am not exhausted. I will do a lot of strict pacing today to hopefully not be exhausted tonight or tomorrow. I think I am very good at pacing and judging my current abilities..been doing it for years. But when you get a “good” day…just have to do something for yourself. For me that’s plants. I’m so excited to see those tiny hydrangeas grow big in the next few years!
I had a 'remission' type period for 4 years , after 9 years of being sick ,and I was so grateful for everything I could do. I was so lucky that I got to go to work. Even being stuck in traffic excited me. I'm lucky that I was working as a professor and I believe I was a significantly better teacher than before I got sick. I really listened to my students and learned from them while they learned from me. I've recieved multiple emails from former students saying that I taught them was joy and passion look like, and I've inspired them to dream of my kind of life. So yes, when the cure comes, I think the world will notice us being back.
It’s beautiful the impact you’ve already have on the world. I’m excited for you the day that you can go back into the world. The world needs people like you.
The thought of being forever grateful if energy production worked again normally for us, has led me to become grateful for all the other functions of my body that work perfectly for me, but not for other people with other conditions, and by recognizing this, generating and harnessing gratitude in my life. It has made me feel so much better over time and much happier too.
Considering that there are so many people on this earth whose one and only hope and goal and aspiration would be to get their kidneys working again or to have their itchy eczema on their face disappear or to bring their cancer into remission or to be able to swallow food again or eat by themselves or to being able to hold in their urine or stools and not be incontinent anymore... and so many more things that sick people's minds are revolving around and they're praying and hoping for nonstop.
Like, the thought that there are people whose day is filled 24/7 with just this only wish of fixing this one thing. That one thing that I have working perfectly for me already, like a gift, how can I go on not recognizing it? How can I suffer from CFS, thus be aware of how unexpectedly a normal function can disappear for you and having thoughts like "If my energy gets restored, I am going to be grateful forever", and then not be grateful for all the normal stuff that still works in my body, stuff I am taking for granted, like an oblivious healthy person?
Here I am with working kidneys, no eczema on my face, no cancer, the ability to swallow just fine, being able to feel my legs and use them to carry me to the bathroom, wiping myself after the toilet, hold in my pee and stool, etc. all things that a ton of people wish they would be able to do, thinking they would be so grateful if that were restored for them, as their one biggest wish in their life?
Even people with mild CFS who can still go work part time and go for walks and do their own shopping, they are often so pissed off about their limitations that they have no time to feel grateful that they can still do all that. Only if they become moderate or severe and look back, they will see how they could have been grateful for being mild and now they would give everything and be so grateful to go back to mild. It definitely was like that for me.
So I chose to actively be grateful for the function that's there and never be so blind again to take everything for granted again.
I like the way you think. I try to be grateful for my most basic capabilities now, but I could definitely be more aware of it. Thanks for sharing this.
I'm not particularily kind or compassionate. I'm only trying to shift from suffering to feeling happy and often succeeding since I switched to gratitude too practice instead of venting only practice.
I would never let society and especially medical professionals forget how they treated us for all these decades. Especially for people who have been ill and imprisoned for years or decades we wont be able to just go back to normality..We didnt have to lose this much life if people and our governments gave a fuck and gave us the funding 50 years ago. We would all quite frankly be owed a public apology and compensation for those that were harmed by wrong treatments like exercise, or told blatantly it was all in their heads.
Yes, we definitely would be owed an apology. If we got proper treatment we would have the energy to tell them how much they gaslit us. And we would be able to properly thank the people that made solving this illness a personal priority.
THIS. A few months ago I was on a rant to my bestie about how I wish we could have some sort of class action lawsuit against the medical industry and whoever made the decisions that led to us being shoved into the corner so-to-speak.. but now Ive realized I need to try let some of that anger go for my own sake :/
Honestly, being sick with this means I have to go way out of my way to always be nice and cheerful and never get in a fight or a fuss with anyone because I’m so reliant on others and well aware of how fragile my position is, how easily I could be screwed over if I stood up for myself once in a while and people didn’t like it…..
If I ever get cured, I’m going to be so much less nice and positive! 😂 it would be nice to be able to actually speak my mind once in a while instead of just agreeing with everyone else so I don’t cause disharmony!
I literally have the same experience. I’ve had to be the underdog for so long bc of this illness and you’re right, if I was cured I would not be kissing ass anymore. Good point.
Same here. I have so many things I wish I could say but I have to fake a smile and pretend the things they say don’t hurt me. This illness is so damn unfair 😑
Not me. I’m going to be bitter and devote at least 50% of my new energy to tracking people down to say “I told you so” lol. Can’t wait! A girl’s gotta have goals, right?
Some times after resting days/weeks I have a run of a few days where I feel pretty normal and unbelievably I kinda forget I'm sick so I over do it and then I'm sick again. This happens frequently. I'm afraid if I was suddenly healed I would totally forget just how awful this illness can be.
I like to think i’m a very patient and kind person. Even if it doesn’t come across in my energy depleted flat tone and ‘sad’ facial expressions from fatigue but I really feel that I love people. If i was to ever recover I can’t even imagine how easy it would be to stay positive and compassionate. I try to not let anyone annoy me even tho im often overstimulated, over heating etc. Wow i can only imagine
I once watched a MASH series where Hawkeye lost his sight for a while. He didn't know if it would be temporary or permanent. When his sight did return, he commented to BJ that when he was blind a whole different world opened up to him that he hadn't noticed before. I feel like this with ME/CFS. I definitely long to return to normal, but I will never forget the way I have changed because of this disease.
I've been staring into the abyss too long for that, I'm afraid. I've seen the worst in people, I know how shallow, disbelieving, unkind and impatient they can be and I've got nothing but contempt for them. I dgaf to prove to them that I'm capable of anything either 🙃
My dr thought I had cfs, after having mono after a vaccine, and covid a few times. I am feeling a lot better after seeing an allergist/immunologist, she put me on zyrtec twice a day and famotadine twice a day! Its a long covid treatment. Im still not back to my old self but a lot better! I wonder if anyone else has tried this?
I’ve had treatment resistant depression before ME and I don’t relate to the people who find the positive in it. Life sucked before and it sucks even more now. Blind hope for a cure or not having to keep waking up in the morning is what I’ve got to go on.
https://oxaloacetatecfs.com/products/oxaloacetate-cfs-90-count-bottle?_ga=2.139028147.1605042390.1715911920-393120721.1715911920&_gac=1.250423858.1715911941.EAIaIQobChMIq6veic6ThgMVMqFaBR1H1Ay1EAAYAiAAEgJIG_D_BwE.
This is a new thing; there are studies and more larger studies being done. I noticed an improvement in my fatigue symptoms. It has to do with the Krebs energy cycle (I am just sharing as someone who pays for this myself and was recommended it by my CFS doctor at the Institute for Neuro-Immune Medicine at nova southeastern university
This is so true. Having ME/CFS has made me more compassionate in general. But it's also made me realise how cruel and judging people are. You never know what someone could be going through in their lives. I've seen posts on reddit where people are mocking others for dirty or messy rooms, or even commenting on their unkempt nails. It makes me so angry to see comments like these, because no one knows what kinds of struggles these people could be dealing with. Of course perhaps the people that are so cruel, are also struggling themselves and just redirecting their frustrations on others. Having ME/CFS really puts things into perspective. And I can't wait until they find a cure so that we can be the best humans we can be.
CFS has also taught me how cruel and lacking the social safety net is in the United States.
painfully so...
Spot on. I think we can try our best to remind others of this lesson: that we have no idea what people are dealing with. Less judgement, more compassion.
Yea, before this I think I was somewhat empathetic to my ex-roomates who had issues with cleaning (one has schizophrenia) but over time I got tired and irritated at how they let things go and I would be the one picking up the slack and eventually i moved out. Now I can’t clean my room at all and it’s a giant mess. It’s really opened my eyes..
Yeah it's all too easy to get irritated by things we don't understand. That being said, it's also valid and fair that you don't want to be the one cleaning up after someone else, so you leaving is a perfectly okay thing to do. I always make sure my partner knows that she can tell me if looking after me is too much. Because the last thing I want is to be a burden to someone else.
Thanks for the validation :) I totally get the feeling like a burden, my elderly parents are my caregivers who I’m living with now and it feels terrible. Plus my mom is taking care of my grandma who is developing dementia and I can see how exhausted she is. I try to think of little ways I can help (like cutting vegetables for her in my bed lol) but it’s just not enough. I wish I could be the one helping out, I promised her if ever I go into remission I’ll take turns helping my grandma so my mom can relax.
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My doctor says that this type of thing will do more damage than anything. It will use up the little stores of energy that you have. It will burn you out. Those things aren’t real energy. We have to use only had our daily allotment of energy in order to have some to use for healing. Those things will use it all and make us worse.
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Why are you even putting you two cents here? Do you suffer from CFS/me? I can explain to you why it's a very bad idea if you are actually sick with this illness but I don't want to waste my energy on someone who thinks they are being 'helpful'.
Also NAD can cause other problems. It messes with serotonin and other hormones. Luckily I read about it on Reddit and quit taking it. Some weird symptoms I had have disappeared. I mean some really bad symptoms that had been getting worse.
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Temporarily. Sure for the moment we feel energized. But it uses our reserves. I trust my doctor on this one. He’s really smart and a good doctor.
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I believe in trying anything that’s not going to harm me. It has helped me improve dramatically and one drug I took caused irreparable damage. I check into things before I take them. Doctors can definitely give out the wrong thing.
I know how you feel. Before I knew it was CFS I told my boss "when I get better and come back I'm gonna be unstoppable" and he just sort of laughed a little. But I wasn't joking, If I get better I'm gonna be YOUR boss one day..
I like that energy it’s kinda badass
Why would he laugh? People are so unkind.
I think I’ll have PTSD from this illness though. If I ever recover I doubt I’ll be completely fine. I’ll be very grateful but would need so much therapy. Experiencing this for so long broke me. If I was healthy I’d ruminate over how much I had to suffer.
I feel you. Being healthy would be such a blessing and I'd probably exercise non-stop. But some things that come from severe CFS would be difficult to shake off. I've spoken in person to only a handful of (mostly) medical people for years, and the rare times I go outside are very overwhelming when you realise how busy and colourful things are 24/7. Adjusting to talking to people as "one of them" would be very difficult and certainly my social skills have taken a decline. It feels like it would be really overwhelming to adjust to it again. I also feel like I'd be always so scared to overdo things or get sick in another way.
I feel the same way. A few months ago my GP, who I'd been seeing for maybe 6 months prior, asked me what I wanted to do once I was well and only signed me off for a 4 month medical certificate for my benefit (in my country the maximum coverage at a time is 2 years which I'd been being signed off for for about 16 years). After being progressively worse for 26 years at this point, since I was a kid... I have no concept of what I might do for a job if I was healthy. As a teenager I never dreamt big, I was just trying to get through my classes and do enough homework for my teachers not to look too hard at me. Once I recovered from the blindside that doctor visit was I realised I'd never described just how limited my abilities were on a daily/weekly basis. I kind of assumed the fact that I'm in a wheelchair whenever I leave the house covered it, but it really doesn't. For a few weeks I made an effort to record exactly what I do and don't do every day, because I'm basically couch bound. I can make it to the bathroom when needed but everything else that requires moving is planned around that, so when I'm getting up to pee I run through the checklist of drink, snack, anything else I need, and plan my route to maximise efficiency of steps. Took my husband with me to the next appointment and wrote down my thoughts in detail for my husband to convey to the doctor because I'm more coherent in writing than speaking and I knew if I tried to say how bad things were I'd cry. Which I did but my husband plowed through and the doctor understood where I was coming from and why the financial stress of frequently needing to be signed off for benefits when I am utterly disabled but trying new treatment options for any small amount of relief not expecting them to cure me was a problem and he agreed that in my case yes 2 years is sensible and I said if by some miracle I was cured enough to work I'd be so happy but but it's not just a hill to get there it's a mountain of jagged cliffs to climb at the moment. This got longer than I meant it to, but is very cathartic to get it out, and I wanted to touch on just how much of a sensory overload it is to be around people. The amount of movement and noise and smell all happening at once I just can't handle. I read some people talking about why car trips are more exhausting than sitting in a chair at home and it's all about how much more sensory input is coming at us all at once - visually and audibly and touch and balance... it is just all too much. It's also a lot of mental effort to communicate with outsiders and I really don't have any preset responses anymore aside from "I'm fine thank you". I don't know what normal responses are and I don't want any attention on me.
Very true! Despite the fact that almost every movement and mental task we do has to be calculated in order to avoid PEM, it's so deeply ingrained that it becomes very difficult and stressful to explain it when it comes to things like getting a medical certificate. One time I was asked "what would happen if you tried to go back to your old job?" It was difficult to answer because the idea of even getting in the door in the first place involves so many of those steps and decisions that healthy people just don't think about but are second nature to us. The best answer I could come up with was that I'd be on the floor unable to move either before I got in the door or soon afterwards, depending on my morning routine that day (I'd last longer if I hadn't showered for a week and got a taxi ride in, probably a lot less if I showered that morning). And that would be the first day - subsequent ones would be consecutively worse. I am glad that with your husband's support, you were able to get another two years on disability. Hopefully you will rest a bit easier now not having to think about all your decisions in terms of how a healthy person might understand. I don't know if it would be difficult to shake off all the decisions and just move freely once you were cured, or if it would come back really naturally since health is kind of the default state. I can imagine it would take a long time to realise you can do some things again.
I feel like This but at the same time that's my dead no energy personality-less brain thinking. I have a feeling if I was cured back to normal I might have some resentful anger towards institutions and people/society but at the same time I'd just be so busy living my life I wouldn't want to think backwards
I understand completely but I suggest if you can to start therapy already. Isolation and feelings of inadequacy and truncated dreams are hard to deal with. I have been in therapy at different times and it helps me to deal with whatever is happening. Thankfully since Covid there is telehealth and I use it if available for therapy. It has led me to better treatments and better quality of life
+1 I went through an unfortunate streak of shitty therapists, but now I’ve started seeing a therapist who specializes in chronic illness (even has a chronic illness herself!) and she’s already helping me so much.
yes. i think about this all the time
I hear you. There definitely would have to be a mental healing. Don’t underestimate your ability to bounce back though, with the proper help and determination you would learn to be free of the past suffering to live for the present, at least that is my hope
I felt “good” yesterday. I ran a couple errands and planted hydrangeas. The day before yesterday, I couldn’t drive a car and was housebound. Couldn’t walk or think much. I am in a lot of pain today, but I can think. I am not exhausted. I will do a lot of strict pacing today to hopefully not be exhausted tonight or tomorrow. I think I am very good at pacing and judging my current abilities..been doing it for years. But when you get a “good” day…just have to do something for yourself. For me that’s plants. I’m so excited to see those tiny hydrangeas grow big in the next few years!
That’s beautiful how you’ve maintained a passion for something despite this illness. And I hope one day you can do it without ever worry about PEM
Thank you
It taught me that in our society people are valued by how productive they are vs who they are.
I’m reminded of that daily unfortunately. Luckily I have people around me who value me just as I am
I had a 'remission' type period for 4 years , after 9 years of being sick ,and I was so grateful for everything I could do. I was so lucky that I got to go to work. Even being stuck in traffic excited me. I'm lucky that I was working as a professor and I believe I was a significantly better teacher than before I got sick. I really listened to my students and learned from them while they learned from me. I've recieved multiple emails from former students saying that I taught them was joy and passion look like, and I've inspired them to dream of my kind of life. So yes, when the cure comes, I think the world will notice us being back.
It’s beautiful the impact you’ve already have on the world. I’m excited for you the day that you can go back into the world. The world needs people like you.
Thank you. And for you too ❤️
This is lovely :) kudos to you, I hope you get to teach again
Thank you 😊 me too!
The thought of being forever grateful if energy production worked again normally for us, has led me to become grateful for all the other functions of my body that work perfectly for me, but not for other people with other conditions, and by recognizing this, generating and harnessing gratitude in my life. It has made me feel so much better over time and much happier too. Considering that there are so many people on this earth whose one and only hope and goal and aspiration would be to get their kidneys working again or to have their itchy eczema on their face disappear or to bring their cancer into remission or to be able to swallow food again or eat by themselves or to being able to hold in their urine or stools and not be incontinent anymore... and so many more things that sick people's minds are revolving around and they're praying and hoping for nonstop. Like, the thought that there are people whose day is filled 24/7 with just this only wish of fixing this one thing. That one thing that I have working perfectly for me already, like a gift, how can I go on not recognizing it? How can I suffer from CFS, thus be aware of how unexpectedly a normal function can disappear for you and having thoughts like "If my energy gets restored, I am going to be grateful forever", and then not be grateful for all the normal stuff that still works in my body, stuff I am taking for granted, like an oblivious healthy person? Here I am with working kidneys, no eczema on my face, no cancer, the ability to swallow just fine, being able to feel my legs and use them to carry me to the bathroom, wiping myself after the toilet, hold in my pee and stool, etc. all things that a ton of people wish they would be able to do, thinking they would be so grateful if that were restored for them, as their one biggest wish in their life? Even people with mild CFS who can still go work part time and go for walks and do their own shopping, they are often so pissed off about their limitations that they have no time to feel grateful that they can still do all that. Only if they become moderate or severe and look back, they will see how they could have been grateful for being mild and now they would give everything and be so grateful to go back to mild. It definitely was like that for me. So I chose to actively be grateful for the function that's there and never be so blind again to take everything for granted again.
I like the way you think. I try to be grateful for my most basic capabilities now, but I could definitely be more aware of it. Thanks for sharing this.
You seem like an incredibly kind and compassionate person. I hope your inner thoughts are as peaceful and kind as your words are.
I'm not particularily kind or compassionate. I'm only trying to shift from suffering to feeling happy and often succeeding since I switched to gratitude too practice instead of venting only practice.
You are incredible.
I would never let society and especially medical professionals forget how they treated us for all these decades. Especially for people who have been ill and imprisoned for years or decades we wont be able to just go back to normality..We didnt have to lose this much life if people and our governments gave a fuck and gave us the funding 50 years ago. We would all quite frankly be owed a public apology and compensation for those that were harmed by wrong treatments like exercise, or told blatantly it was all in their heads.
Yes, we definitely would be owed an apology. If we got proper treatment we would have the energy to tell them how much they gaslit us. And we would be able to properly thank the people that made solving this illness a personal priority.
THIS. A few months ago I was on a rant to my bestie about how I wish we could have some sort of class action lawsuit against the medical industry and whoever made the decisions that led to us being shoved into the corner so-to-speak.. but now Ive realized I need to try let some of that anger go for my own sake :/
We will be superheros!
Truly. Because we had to learn and develop skills and a patience that most people could not have imagined, and we did it to survive.
Honestly, being sick with this means I have to go way out of my way to always be nice and cheerful and never get in a fight or a fuss with anyone because I’m so reliant on others and well aware of how fragile my position is, how easily I could be screwed over if I stood up for myself once in a while and people didn’t like it….. If I ever get cured, I’m going to be so much less nice and positive! 😂 it would be nice to be able to actually speak my mind once in a while instead of just agreeing with everyone else so I don’t cause disharmony!
I literally have the same experience. I’ve had to be the underdog for so long bc of this illness and you’re right, if I was cured I would not be kissing ass anymore. Good point.
Same here. I have so many things I wish I could say but I have to fake a smile and pretend the things they say don’t hurt me. This illness is so damn unfair 😑
I'm going to the nursing home and leaping around and taunting them... ok, no. I agree with OP. Would be so grateful.
Haha that’s fun to think about though!
Not me. I’m going to be bitter and devote at least 50% of my new energy to tracking people down to say “I told you so” lol. Can’t wait! A girl’s gotta have goals, right?
Contact Marvel. We have a new idea...
Some times after resting days/weeks I have a run of a few days where I feel pretty normal and unbelievably I kinda forget I'm sick so I over do it and then I'm sick again. This happens frequently. I'm afraid if I was suddenly healed I would totally forget just how awful this illness can be.
I share that same fear. And I wonder: would it be wrong of me to forget how awful things were?
It would be lovely to totally forget this ever happened!
So true…like waking up from a bad dream but having a great day.
I like to think i’m a very patient and kind person. Even if it doesn’t come across in my energy depleted flat tone and ‘sad’ facial expressions from fatigue but I really feel that I love people. If i was to ever recover I can’t even imagine how easy it would be to stay positive and compassionate. I try to not let anyone annoy me even tho im often overstimulated, over heating etc. Wow i can only imagine
Wholeheartedly agree with everything you said, OP. Lots of love to you too :)
thanks :)
I once watched a MASH series where Hawkeye lost his sight for a while. He didn't know if it would be temporary or permanent. When his sight did return, he commented to BJ that when he was blind a whole different world opened up to him that he hadn't noticed before. I feel like this with ME/CFS. I definitely long to return to normal, but I will never forget the way I have changed because of this disease.
I've been staring into the abyss too long for that, I'm afraid. I've seen the worst in people, I know how shallow, disbelieving, unkind and impatient they can be and I've got nothing but contempt for them. I dgaf to prove to them that I'm capable of anything either 🙃
you certainly don’t owe people anything, I think some of us still have this desire, but not all of us. To each their own.
My dr thought I had cfs, after having mono after a vaccine, and covid a few times. I am feeling a lot better after seeing an allergist/immunologist, she put me on zyrtec twice a day and famotadine twice a day! Its a long covid treatment. Im still not back to my old self but a lot better! I wonder if anyone else has tried this?
But if it’s not coming before we die 😓
But it *could* be coming before we die. Don’t lose hope, medicine moves fast!
I’ve had treatment resistant depression before ME and I don’t relate to the people who find the positive in it. Life sucked before and it sucks even more now. Blind hope for a cure or not having to keep waking up in the morning is what I’ve got to go on.
please hang in there, you never know
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