Old 09-06-2017, 08:05 AM #1
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Default So bad for so long

Has anyones fibro /CFS got so bad for so long that they feel like there is no hope and depression and anxiety set in.

I have been house bound for over 2 years and the stress of being like it makes me feel so unhappy and anxious like i have no control over my life at all.

I have done the' finding pleasure in small things' but underneath being unproductive...so much pain and weakness and the guilt of the impact on my partner means i just feel life is totally pointless.

Just to add ive had this illness for a decade and managed it well for over 7 years and kept pretty active despite daily pain...so its not that i am a wimp who hasnt tried or just gave in.

Thanks to all you fibro folk and hoping you are doing better.
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Old 09-06-2017, 10:23 AM #2
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Default Re: So bad for so long

Sorry you're feeling like that just now diamond. I'm not at the point where I'm housebound, I still work & do what I can around the house but I already feel down at the thought of feeling like this or worse in the future.

I hope you're feeling a wee bit better now, fibro sucks!
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Old 09-06-2017, 01:42 PM #3
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Default Re: So bad for so long

I'm so sorry it's so difficult for you. I don't have advice for you, other than keep checking in with various communities on here. There's a facebook page Medical Musings with friends that has some people who are living with very advanced chronic illnesses - many like you who are housebound. You might find understanding and support there. In the meantime, hugs from me.
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Old 09-07-2017, 12:04 PM #4
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Default Re: So bad for so long

You are not alone...I know that does not automatically make your problems disappear, but it does make one realize (at least it did me, when I read your post) that in those dark moments we are not the only ones going through it.

Just when I feel like I have been over the 'mourning' phase, just a simple thing can shake up my life.

For example, this morning at 5am. We had to go to the ER because my mom was not feeling well. Stressful situation, and that early in the morning with no meds, I am also at my worst, mentally & physically. There was a lot of waiting for the meds to work, blood work to return, but the situation was calm, under control, so I was sitting outside in the sun at 7:30 am, this bus full of hospital employees stopped and all these people stepped out to start their day at work. I was struck with an intense feeling of loss. I loved working, I loved being useful, making a living, spending that money carefully, saving most of it. And not to sound arrogant but I was also such a good, hard worker. I always wanted to excel, educate myself, I always smiled, tried to make other people happy...I was so good at all of that. When I especially worked part-time, I was at my happiest. Now, I am stuck at home since 2014 and for almost 7 months have no income. I could not even work one day in the week because my days can be up and down, constantly, all day long. It hurt so so so bad.

So I wish I knew the secret to full acceptance. Mostly I suppose it is down to appreciating your little abilities and light/pain-free moments, focus on the positives as they'd call it. But with so much loss - work/income, independency, ego, health, mind, basic life skills, self esteem, passion, love, probably worst loss of HOPE....it is really really really hard to keep your head up high, find happiness, find positive vibes....

And please do not even for a second think you are a wimp. You fought this evil disease for so so long, you are such a strong person. A person worthy of the best. Having recently re-watched the movie The Help, I shall repeat what I have been telling those worthy of these words -

YOU IS KIND. YOU IS SMART. YOU IS IMPORTANT.

And you are not alone! Gentle hugs.....
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Old 09-07-2017, 03:05 PM #5
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Default Re: So bad for so long

You're such a sweetheart vickythecat..we sound so alike in character...i have thought that right from your first few posts when you joined the forum...you know when you feel that little connection of someone with similar character interests values and experiences.

Thanks for the reply.
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Old 09-11-2017, 01:05 AM #6
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Default Re: So bad for so long

XOXO Diamond, I have to confess I was too arrogant to say that I was semi-cure of agoraphobia cause this passed month I found my self stuck in the house ( the place i'm currently staying) and can't go outside do to temperture up and down , allergies, and photophobia making my head , face, eyes swollen up and feeling very weak , not to mention Non-24. I guess being pushed around outside for a month staying from hotel to hotels , walking outside because I had no where to be was thrilling but could hardly call it cured. I'm have tried and still trying over and over while watching life drifting away from me and fully altered the way I see things changed the way I'm thinking over and over while struggling trying to adapting it times after times. There's no security in life as much as I trying to fooling my self in to thinking so. The only thing I can do is to find anything to make me feel less wasteful and anything to make me feel useful no matter how little it is. Strong will is harder than any physical strengths combine. I know that now but the how still look like mirages that still eluding me. I guess I can try turning my self in to Buddha like but I having a hard time letting all my earthly desires goes or picturing me staying that still. I spent times mapping all my illnesses from the very beginning since I've learded how to crawl , I watch lots of new discorvering tv shows videos in all life aspect in hope to see the future. I imagine that my fibro is like my ipad auto correct problem in keyboard setting. It's super annoying and it doesn't just correcting my vocabularies it's rearranging every phrases I ever types against my will!!! . When I tried to turn it off there were so many options, and the one that annoying me the most it's turns out to be the option call "prediction" option. OMG!!! My ipad keyboard is far more evil than I've ever imagine
I can't help but beliving in the same analogies that all the predicaments that my fobro-brain putting me through it's simply just the same as my brain learned from my history of traumas / physical traumas and reacts as over alerting like the non-stop security alarms and putting me through hell over the years , one day I will find the buttons to turn it all off ! one way or another someday. Someday. That is my hope. Meanwhile whether I'm cooking , crocheting my recycling trashes which I'm practicing and simply hope to be good enough so I can sell them on ebay , singing, yelling, screaming , or posting about it . I'm simply just living ..till that day. Faith is weird , I don't want to foolishly believing in it but I do believe I can do it. Just have to hang on till then.
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