I feel like my life has been stolen 🙃

kaijufae

New member
Joined
Jul 24, 2020
Messages
3
Reason
DX FIBRO
Diagnosis
06/2020
Country
UK
I've had fibro symptoms since February, a diagnosis since May. I know it's relatively early days but I just feel so miserable, depressed and hopeless. I've had to suspend my course at university, and I don't think it's looking likely I can finish it. It's a costume course, so but I can't sit hunched over a drafting table or a sewing machine for half my days anymore, since I'm in bed for most of them.
For a few years I've dreamed of being a costume designer and it feels like fibro has just ripped that away from me. There's no treatment at all available to me, no painkillers that help, I'm still half a year away from therapy. I've found some skincare that helps a little, and yoga helps take the edge off for a couple of hours but it's never enough.
I'm living with my boyfriend and he's mor supportive and helpful than I could ever ask for, but I feel like such a burden on him, as he's already got plenty on his own plate.
I dont really know what I'm hoping to get out of posting this, i think I'm more just screaming into the void at this point.
Im just so tired 😞
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,060
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
Hello kaijufae..................
Boy, do I ever sympathize with you and understand what you are saying. I also felt as if my life had been stolen from me, so I am right there with you.

There is no known cure for FM, but there are a lot of things you can do to help yourself, so take heart! This is not a death sentence, and it doesn't have to take your life away from you. It changes your life, but you can learn to cope with it and do to the things that help you to manage it with the least amount of disruption in your life that you can manage. It's different for all of us, but there are some things that are pretty globally helpful to everyone.

Please read my post on Advice, which is a "sticky" at the very top of the General forum. I list many things there that, if followed, will help. You have to experiment a lot and be willing to give things a really good try before deciding they don't work. It's worth the time and energy you will spend, because results can be remarkable. Not a cure, but a big help.

Count yourself very lucky that your partner is helpful to you. Many of us don't have that, and even had to rid ourselves of unsupportive partners. About the fear of being a burden -- maybe you could sit down with him and have a long, in-depth talk about it. Explain your concerns about burdening him, and work out a system with him so that he doesn't feel that way. You might even want to have a regular check-in with him once a week, just to air any concerns and so that you can ask for help in some area, perhaps, or he could let you know he needs something from you. This can all be worked out.

You may have to put your dreams on hold for a little while, but please don't think it's permanent because it doesn't need to be. Once you are managing this thing better you will very likely be able to go back to work. We are here to support and help you in whatever way we can, so please don't think you are screaming into the void. We will be here for you, even though it's at a distance. Hang in there. And, really, read my post and start doing those things.
Wishing you the best.
 

kaijufae

New member
Joined
Jul 24, 2020
Messages
3
Reason
DX FIBRO
Diagnosis
06/2020
Country
UK
thank you so much for listening and taking the time to reply ☺️ it really helped and made me feel better and I did read your post, I definitely have some areas to improve there haha. My diet is pretty awful.

I know how lucky I am with having someone there for me, I've had chronically ill friends with noone close by for them and saw how hard it was for them. I'm always going to be thankful for having that going for me ☺️
Thank you again for replying, and I'll make sure to look over your wonderful post again and really try to apply some of that advice!
 

sunkacola

Very helpful member
Joined
Dec 2, 2016
Messages
1,060
Reason
DX FIBRO
Diagnosis
00/0000
Country
Uni
State
Somewhere
You are very welcome. Your diet is a very good place to start, because no one can be truly healthy if their diet is not healthy. Plus, with experimentation, you may find that certain foods exacerbate some of your symptoms, and you can avoid them with good effect. Best of luck, and come back any time with questions. We are all here to help.
 

JayCS

Senior member
Joined
Sep 5, 2020
Messages
305
Reason
DX FIBRO
Diagnosis
02/2020
Country
GE
Hi kaijufae, we all need to scream sometimes, that's a good start...
And start is the word - it's the end of our old life but the beginning of a new one. I hope you're prepared / in the right frame of mind for me to share my experience: I made my job to my dream job in the last 10 years. And now I have to see that I may not manage to work again at all. And in trying I have to change a lot of things I took for granted. But I see it as a new start, a new life, slower, self-caring, a new chance. I know my body wants this and needs this and accept my body as an important part of me, which seems to overrule my dreams - but that is fair. Maybe I will only have time & energy for my body, my wife, a bit of music and my family (granddaughter). But then that's it and I'm not letting anything steal my inner happiness.
 

Sbowman23

New member
Joined
Nov 27, 2020
Messages
5
Reason
DX FIBRO
Diagnosis
08/2016
Country
US
State
MA
I feel you honestly I do, I’ve had fibro and cfs for 4/5 years now, the first year was a nightmare, I was so scared and tired. I also have chronic knee issues which makes this so much more fun. I’m also an artist, I understand that pain of not being able to pursue things. I had a life of art and work before this and I had passion. About a year of really finding answers for my self and I came to a manageable place where I could do more and make more. But then things happen and they set you back and they knock you down and you are back in that space, so scared and tired. This is not a linear journey it is bumpy and rough and so difficult but when you find the things that work for you there can be hope. I have pockets of time where I can create, it’s hard but I can do it and then that it can go away.

You have to be patient with yourself, Learn how to learn how to use meditative techniques to calm yourself down. Learn how to release tension in your body, learn about healthy diet and supplements, walking is some thing that helps even when you feel so painful seriously it does. I understand that you feel like a burden, Always be honest and open. You will find a path for yourself. Feel free to private message if you need someone to speak to.
 

NahSG

New member
Joined
Feb 10, 2021
Messages
9
Reason
DX FIBRO
Diagnosis
08/2003
Country
US
State
UT
Scream away my friend, hope it helps in any way.
 
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