Aa
3 years and I'm still down
Only 35, male. Successful attorney. Health declined and my way of life is now based on day to day, how I feel. I feel so tired and exhausted right now. I have no energy. I feel like I live in my own world. I just used the bathroom and I am out of breath. typing this is exhausting. I used to have good days, I no longer have them. just contemplating how long this is going to last. how much can i take. my lifestyle would be gone if i stop fighting. in a way, my situation is good for me. i just need to deal. stop the pain. when i move, my joints feel like they are separating. this is all i can manage today. how do you explain this to your 6 year old boy. how can you not feel guilty when looking at your wife.
Educate yourself on supplements (i.e., D-Ribose, magnesium, selenium) and other treatments, get treated for depression (it makes a big difference and you'll be better able to deal with things), try (and don't give up too fast) one of the fibromyalgia drugs (Lyrica has changed my life), get some light exercise even though you don't feel like it (you will get more energy), and experiment with your diet (some people find that sugar, dairy &/or gluten can cause issues - sugar is really bad for me). Never overdo it. It will get better.
hey we're almost twins. except the attorney part. i am 3 years 1 month into this - i agree it's hell.you should be resting enough to gradually improve. if you've gotten worse - stop doing whatever it is that's exhausting you - probably simply doing too much. some people say 'but i have to 'work'' etc - well i thought that too til i got to the point i could barely brush my teeth, and other personal hygiene practices. i really had to stop. like a car running on axles. it's gone too far.
you say you have to keep fighting; this is radical but can i suggest: stop fighting for life. there is so much stigma attached to the notion of giving up. which is what makes it so hard. but kind of relaxed, and things improved. it was more a case of accepting things rather than resisting them.
this illness carries so much shame and guilt because it's hard to accept - by ourselves and others - so we present as weak, lazy, depressed - which in wellness, we are not!! we are sick and need to do what's necessary to get well; be proud as possible; be permitted to be in sickness. (i'm exhausted! take care everyone)
you say you have to keep fighting; this is radical but can i suggest: stop fighting for life. there is so much stigma attached to the notion of giving up. which is what makes it so hard. but kind of relaxed, and things improved. it was more a case of accepting things rather than resisting them.
this illness carries so much shame and guilt because it's hard to accept - by ourselves and others - so we present as weak, lazy, depressed - which in wellness, we are not!! we are sick and need to do what's necessary to get well; be proud as possible; be permitted to be in sickness. (i'm exhausted! take care everyone)
Hi, come on, I don't know anyone who wrote to 1a, Heaven and asked for this. In the uk we are told that for some reason this blight hits professional high achievers although a vast cross section of the world population suffers the same condition so they have got this a bit wrong.
From hearing all the people on this site and others, the one thing it doesn't do is to hit lazy people.
Yet, comments are always made by friends and family which infer that if only you tried a bit you'd get better.
I can hear exactly how you feel and we've all been there. Frustrated, angry, scared, want your life back, want to get up tomorrow and go to work, which you love, get back on the fast track, don't want to upset your family, feel rubbish at not being in control.
Nil self image as your profession, your ability to provide for and protect your family is a large part of who you are.
I'm a woman but I've been there.
Practical suggestion: It sounds like you're depressed - v.v. common re. symptoms and circumstances of the condition. I had to swallow my pride and get a visiting counsellor + start on a course of anti-depressants. You need someone who is familiar with the condition, preferably recommended by the specialist doctor who I hope you see.
if not, get one.
Even though you have no energy, the above will renew your belief in yourself so that you can be assertive in order to get help, and also to tell all disbelievers to either read up on the condition and come back with a bit of kindness and empathy or get lost - you have enough problems.
Children are very adaptable and, even though I know you're desperate to do dad and son things with your boy, you have to explain to him that even though you would love to run and play with him, at the moment you're a bit poorly with a condition which makes you very tired. You can still read with him, draw, paint, make models, play board games etc. when you are feeling well enough. He will appreciate this time with you and you'll always be his dad. When my girls started any rubbish I told them that standing up or laying down, i was still their mother, the only one they'll have, and show a bit of respect, stop arguing etc. they were very ashamed and we all ended up having a big cuddle.
As for your wife, she would be horrified to hear you say that you can't look her in the eye, I'm sure. How would you feel if it was the other way round and she was the one who became ill? you don't sound li,ke the kind of man who would blame her, desert her or be unkind.
this condition does take it's toll on the family but once you feel less guilty and depressed, talk to her and Tell her how you've been feeling.
Once the family has adapted to the change in circumstances there are still magic moments to be had - probably stuff you wouldn't think twice about being anything special when you were well.
The other day I was hanging on to the kitchen sink trying to make a cup of tea. I looked out of the window and saw a bluebird on a silver birch tree in the garden with the sun lighting it. I'm not an avid nature lover but it just looked so beautiful. Had I been chasing around in previously fast track life-style I wouldn't have noticed.
I think I've written you a book! You take care and always know that there are people who care very much for you. Until the next time.
From hearing all the people on this site and others, the one thing it doesn't do is to hit lazy people.
Yet, comments are always made by friends and family which infer that if only you tried a bit you'd get better.
I can hear exactly how you feel and we've all been there. Frustrated, angry, scared, want your life back, want to get up tomorrow and go to work, which you love, get back on the fast track, don't want to upset your family, feel rubbish at not being in control.
Nil self image as your profession, your ability to provide for and protect your family is a large part of who you are.
I'm a woman but I've been there.
Practical suggestion: It sounds like you're depressed - v.v. common re. symptoms and circumstances of the condition. I had to swallow my pride and get a visiting counsellor + start on a course of anti-depressants. You need someone who is familiar with the condition, preferably recommended by the specialist doctor who I hope you see.
if not, get one.
Even though you have no energy, the above will renew your belief in yourself so that you can be assertive in order to get help, and also to tell all disbelievers to either read up on the condition and come back with a bit of kindness and empathy or get lost - you have enough problems.
Children are very adaptable and, even though I know you're desperate to do dad and son things with your boy, you have to explain to him that even though you would love to run and play with him, at the moment you're a bit poorly with a condition which makes you very tired. You can still read with him, draw, paint, make models, play board games etc. when you are feeling well enough. He will appreciate this time with you and you'll always be his dad. When my girls started any rubbish I told them that standing up or laying down, i was still their mother, the only one they'll have, and show a bit of respect, stop arguing etc. they were very ashamed and we all ended up having a big cuddle.
As for your wife, she would be horrified to hear you say that you can't look her in the eye, I'm sure. How would you feel if it was the other way round and she was the one who became ill? you don't sound li,ke the kind of man who would blame her, desert her or be unkind.
this condition does take it's toll on the family but once you feel less guilty and depressed, talk to her and Tell her how you've been feeling.
Once the family has adapted to the change in circumstances there are still magic moments to be had - probably stuff you wouldn't think twice about being anything special when you were well.
The other day I was hanging on to the kitchen sink trying to make a cup of tea. I looked out of the window and saw a bluebird on a silver birch tree in the garden with the sun lighting it. I'm not an avid nature lover but it just looked so beautiful. Had I been chasing around in previously fast track life-style I wouldn't have noticed.
I think I've written you a book! You take care and always know that there are people who care very much for you. Until the next time.
There is nothing to feel guilty about so look your wife in the eye! You didn't ask for this to happen, did you?
As for your son, tell him your arms & legs got sick and you're trying to make them better but it takes a long time. Don't tell him you're sick all over, that will only lead to feelings of insecurity and him blaming himself when you can't do something with him.
I've been in your shoes and I handled it all wrong...I'm still sick and now know what to say to my grandchildren.
Be grateful for the parts that still work, for the fact that you have a brain and a degree. Most people who are just as ill as you aren't educated nearly enough and still must do physical work. Imagine how tired they feel! Try to get out more and don't focus on your health (or lack thereof). Even if you go sit in your yard or a park, it will get you out of the house and into nature. The sun and nature itself can do wonders.
I know all of this because I've been there and done that as the saying goes. I've been down since 1989 and the only way to go is up. Am I less ill? No...In fact, I just got more bad news yesterday. I live day to day just like you and a lot of other people here. But as long as I have the strength to fight it all, I will. Try praying, that works wonders, too-that's where my strength comes from.
Good luck to you and I hope things go as well for you as they have for me.
As for your son, tell him your arms & legs got sick and you're trying to make them better but it takes a long time. Don't tell him you're sick all over, that will only lead to feelings of insecurity and him blaming himself when you can't do something with him.
I've been in your shoes and I handled it all wrong...I'm still sick and now know what to say to my grandchildren.
Be grateful for the parts that still work, for the fact that you have a brain and a degree. Most people who are just as ill as you aren't educated nearly enough and still must do physical work. Imagine how tired they feel! Try to get out more and don't focus on your health (or lack thereof). Even if you go sit in your yard or a park, it will get you out of the house and into nature. The sun and nature itself can do wonders.
I know all of this because I've been there and done that as the saying goes. I've been down since 1989 and the only way to go is up. Am I less ill? No...In fact, I just got more bad news yesterday. I live day to day just like you and a lot of other people here. But as long as I have the strength to fight it all, I will. Try praying, that works wonders, too-that's where my strength comes from.
Good luck to you and I hope things go as well for you as they have for me.
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