I was wondering if there are fellow ATRL members who suffer from fibro or a chronic illness and have their life turned upside down by it?

I was diagnosed with fibromyalgia last year after years of pain and fatigue, but it has taken such a grave turn that I'm feeling very down in the dumps right now. I'm having a flare up at this moment and have basically been unable to get out of bed for the past week. Complete exhaustion and dizziness as if I am wasted (without any of the pleasant feelings.) My head feels like it weighs a thousand pounds and my body aches all over. I can barely do anything that I usually enjoy (such as reading and listening to music). Moreover it hit me that this is most likely my entire future so I will have to accept this situation and mourn the life I had before this.

Does anybody have a similar story and how do you (or don't) manage?

Heya! Fellow life patient here, not fibro though.

It's very weird to have to grasp that your life depends on medicine and/or machines. But my way of managing (for now) is thinking that

When I complained for the 3 days per week I would spend in a hospital would cost me the other 4. So I'd just get out of my bed and do whatever **** I could afford (financially, bodily, mentally).

Oh and I implore you people, GO TO ******* THERAPY

5 minutes ago, Démodé said:

Heya! Fellow life patient here, not fibro though.

It's very weird to have to grasp that your life depends on medicine and/or machines. But my way of managing (for now) is thinking that

When I complained for the 3 days per week I would spend in a hospital would cost me the other 4. So I'd just get out of my bed and do whatever **** I could afford (financially, bodily, mentally).

I cannot really relate to having to spend all that time in a hospital, but that sounds tough indeed. I do see what you mean, all energy spent in anger/frustration/self-pity etc. is ultimately energy you won't get back and you have little to spare anyway. I do have trouble with the acceptance, since in my case there's no physical cause exactly, so I sometimes feel like I'm making everything up? Even though I rationally know that's not the case. There's a lot of guilt in not being 'a productive member of society' when I'm ill that I still have to unlearn ...

@LadyGaga

Just now, SmittenCake said:

@LadyGaga

You just know she has her paws up because her hand is cramped

Edited May 17May 17 by Haze

10 minutes ago, Haze said:

I cannot really relate to having to spend all that time in a hospital, but that sounds tough indeed. I do see what you mean, all energy spent in anger/frustration/self-pity etc. is ultimately energy you won't get back and you have little to spare anyway. I do have trouble with the acceptance, since in my case there's no physical cause exactly, so I sometimes feel like I'm making everything up? Even though I rationally know that's not the case. There's a lot of guilt in not being 'a productive member of society' when I'm ill that I still have to unlearn ...

Uff, the acceptance part is extremely tricky. I was born with it/have had it since 6 months old so it felt extremely unfair growing up and even more so when I saw everybody healthy around me.

The physical cause does not comfort at all, trust me. You would've found something else in your mind to pivot to and blame that for your condition.

been sick with ME for years, don't get out much - not bedbound in the way that i used to be, i can get out for walks - but i can't work (one of the ATRL jobless i fear) or really do anything in public spaces cos of the difficult to manage symptoms and so i'm just...warehoused tbh.

things like ME and fibro are doubly vicious cos you'll get a lot of, at best, well meaning but patronising interventions even from health services, at worst people "reckoning" that you'd just get better if you'd do this one neat trick which yr refusing to acknowledge

how do i cope? a few years ago i'd have said pop music but tbh my mental health has taken a real beating over the last year or two, tbh i'd just say if you can see a time when it's going to be better than it is then hang onto that, the period when i was recovering a bit was probably the time i felt most positive. but yeah, it sucks, hope it comes good for you x

only got diagnosed this year and I am still a bit in shock and processing it. On the one hand, it feels reassuring to know all this pain and suffering wasn't in my head and that I am not a hypochondriac. My dad still doesn't believe this diagnosis and thinks I am making it up to portray myself as the victim.

On the other hand, there is not much I can do when I get a flare up. Life is hell already for someone autistic working in the corporate environment, I am constantly exposed to stressors.

The rheumatologist did not prescribe me any pain medication because she was of the opinion that my current combination of psychiatric meds is sufficient (Antidepressant and Antipsychotic).

10 minutes ago, Mads Trier said:

only got diagnosed this year and I am still a bit in shock and processing it. On the one hand, it feels reassuring to know all this pain and suffering wasn't in my head and that I am not a hypochondriac. My dad still doesn't believe this diagnosis and thinks I am making it up to portray myself as the victim.

On the other hand, there is not much I can do when I get a flare up. Life is hell already for someone autistic working in the corporate environment, I am constantly exposed to stressors.

The rheumatologist did not prescribe me any pain medication because she was of the opinion that my current combination of psychiatric meds is sufficient (Antidepressant and Antipsychotic).

A flare up just stops you in your tracks, doesn't it. Like there's nothing to be done, you just have to wait to maybe feel a little bit better so you can do some things to ease your mind. I'm sorry your dad isn't understanding, invisible illnesses suck that way. Hope you have some people around you who do understand

I'm also not under medication except antidepressants. None of them seem to work anyway.

14 minutes ago, makeawish said:

been sick with ME for years, don't get out much - not bedbound in the way that i used to be, i can get out for walks - but i can't work (one of the ATRL jobless i fear) or really do anything in public spaces cos of the difficult to manage symptoms and so i'm just...warehoused tbh.

things like ME and fibro are doubly vicious cos you'll get a lot of, at best, well meaning but patronising interventions even from health services, at worst people "reckoning" that you'd just get better if you'd do this one neat trick which yr refusing to acknowledge

how do i cope? a few years ago i'd have said pop music but tbh my mental health has taken a real beating over the last year or two, tbh i'd just say if you can see a time when it's going to be better than it is then hang onto that, the period when i was recovering a bit was probably the time i felt most positive. but yeah, it sucks, hope it comes good for you x

Yes, this really sucks. Somehow all their good-intended advice comes down to the fact that you're not doing enough of this or that, when getting out of bed already consumes almost al your energy.

I also hope you find some more relief. But I understand how hard it is to keep going when change is incremental at best.

Thank you for sharing!

Thanks for opening up about it. I know I'm just another user on the forum, but I wish you all the best and hope you stay strong. I have a friend who has it, and botox in specific areas really helps her a lot, along with what you could call antistress routines.

Oh and by the way

Whenever someone says something in the vein of:

"hang in there"

"be patient"

"everything happens for a reason"

"X/Y/Z event didn't happen now for the better, your time will come"

you're entitled and heavily encouraged to ***** slap them the hardest you can

1 minute ago, Démodé said:

Oh and by the way

Whenever someone says something in the vein of:

"hang in there"

"be patient"

"everything happens for a reason"

"X/Y/Z event didn't happen now for the better, your time will come"

you're entitled and heavily encouraged to ***** slap them the hardest you can

I can assure you I'd end up with more pain than them

But yas at the sentiment!

1 minute ago, Haze said:

I can assure you I'd end up with more pain than them

But yas at the sentiment!

Moral satisfaction over physical pain for me

but then again, we're both Tori and Bjork stans, we're not very ok either.