Old 01-16-2018, 05:49 PM #1 (permalink)
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Default Feeling Hopelessly Adrift

Hi all.

I'm a 21 year old single mother, and was diagnosed with fibromyalgia almost 6 years ago. At first things were okay still. I could function through the pain and still live a normal life. However, in the past 6 months or so, everything has started spiraling out of control. The flare ups that used to come about 2-4 times a year are now happening about once a month. When I'm not having a flare the exhaustion and fibro fog are almost too much to bear. Oh, and let's not forget the fact that I just found out I'm developing arthrits now, too. For almost 2 months I've been unable to work, and chasing after my toddler is almost more than I can handle most days. My body has betrayed me, and I feel like a prisoner in my own life. I really don't know what to do. Nothing I've tried seems to help with any of the symptoms, and I'm at my wits end. I had so many plans, so many things I wanted to do. Now it's a battle just to get off the couch. My mother keeps telling me it's time to stop trying to live a "normal" life and just file for disability already. She thinks I'm just prolonging the inevitable and hurting myself even more. I feel like I'm letting everyone down - my daughter, my mother, myself. I don't really even know why writing this. I guess I just needed to vent or whatever. Thanks for reading.
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Old 01-21-2018, 02:37 PM #2 (permalink)
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Default Re: Feeling Hopelessly Adrift

Hay hun.as a mum of 3teensand as an older mum of a 6 year old,I no how hard life it.fibro tends to ebb and flow.some days are ok. Some days are rotten,most of us hurt everyday.and it really is a battle against your own body.and most importantly your own mind.
The thing to remember is,this is your life weather we like it or not.getting disability is a long road,so there is no harm starting .your life is NOT over it’s just different.mums are built strong,you will cope .and learn how to reset your day.
Tell me what drugs have you been on,and for how long x
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Old 01-23-2018, 12:20 PM #3 (permalink)
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Default Re: Feeling Hopelessly Adrift

I was 19 when I first was unofficially diagnosed with fibro. I thought the pain and fatigue that I had been having for many many years a child and teenager were all normal, that everyone had them. But I did not want to accept a serious diagnosis like that so I went on and on and on - until I crashed and became mentally ill. (and real bad mentally ill).

I can't imagine what my life would've looked like if I had a child at your age....so for you it is so very important to put yourself first, so that you can be the best mother for your child. You and your child, first. For that, you need to learn your limits. You need to know what works, and what does not.

For me, working part time was the best time of my life. I had a great boss who was very understanding, so I could switch days if necessary or if I was having a bad hour/afternoon, she knew I had to take it easy. (she'd even bring me cups of tea, help me out with my work, allow me to lay down in her office - what an amazing woman!) Those kinds of bosses are rare but they are out there. It is also important to surround yourself with positive people, genuine people, the good people. Everyone and anyone who makes you feel bad about life, your life, your disabilities - get rid of them asap.

The same goes for your primary care taker. Someone who tells you 'we are going to make you feel better together'. It is their job, it is what they are trained to do, so they should be working hard for you too. (incl. doing research, be patient with medication/therapy options, be open minded etc).

And have a good conversation with your mom. Talk to her about how your body feels and how that makes you feel inside. Talk about the sadness, the mourning, but also about your dreams, your goals in life. Maybe you dreamt of becoming a doctor, maybe you still can be, but maybe your new reality living with fibro will allow you to be a nurse, or an assistant in a health care position. Or a volunteer in the health care sector. Find your passion, and see, realistically, what you can do with that.

My passion, for example, is animals, my dream of working actively for an animal charity is still there, but so far I am busy talking care of stray cats and dogs, and doing volunteer work from home for animal charities. Every time life becomes too much, I turn back to my passion and it is often the one thing that keeps me going, keeps me hopeful.

wishing you lots of strength....
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Old 02-06-2018, 09:17 PM #4 (permalink)
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Default Re: Feeling Hopelessly Adrift

Realy inspiring your words and i too suffering from cfs for last 15 years.pls provide some more updates about the decease.
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Old 02-07-2018, 08:15 AM #5 (permalink)
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Default Re: Feeling Hopelessly Adrift

My heart really goes out to you. I don't have children (due to a childhood cancer) but I have a nephew and I don't know how he runs around so much and never gets tired. I hope that you're not doing this all on your own - it's so difficult. And don't think you're letting anyone down (easier said than done). I usually think about it like this - no one gets mad with me for having diabetes. No one gets mad at someone for developing cancer or heart disease. Even though they can't see fibro, it's very real and the effects can be completely disabling. I hope you have a good support group, and I hope that venting here helps!

There are days where I feel as you do, though. So I understand what it's like to feel like you're letting people down. My partner of many years has noticed a decline in my health and we are not able to do all the things we love to do together - even playing video games. And when I'm tired, when I need to sleep, I get so ANGRY at myself for it because I want to be a part of the world. I feel like I'm letting down my family by sleeping away their lives. So I really can empathize, I just have to remind myself that I am doing the best that I can and I am not weak. You're not weak. Your body is revolting against you. You're so much stronger than you realize. x
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Old 02-07-2018, 09:42 AM #6 (permalink)
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Red face Re: Feeling Hopelessly Adrift

I'm also a single mom, I'm a bit older (almost 38, blah) with a beautiful 4.5 year old daughter.

I was diagnosed with fibro in Sept 2017 but "officially" in January 2018.
I've had it for many years now and they finally gave "my mystery issue" a name.
Years and years of testing, poking, prodding and not knowing where the pain is coming from is stressful and feeling hopeless.

I'm completely on my own. My daughter does see her dad 40% of the time, but otherwise I have no no else to help me. (and honestly I wish I had full custody so the stress of her father wouldn't get to me, but that's a whole story by itself)

If it wasn't for my daughter, I probably would have given up a long time ago. She keeps me going, and I push through whatever pain/emotions I have for her.

The last 3 years of my life have completely have me falling apart.
I'd vent away but I'd just look like some crazy person with 'mental' issues


But the stress of these past 3 years has triggered my fibro something crazy.

My fibro is now at the point where its really starting to affect my day to day everything(work, home life, etc)

I think everyone that has lived with fibro this for as long as they have are my heros and you guys keep fighting and moving foward!
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