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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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my first blog..after so many years...

this is my first blog...ive been on another support group and joined this one after hearing about it...truth is i tried to join awhile back and was too overwhelmed with trying to figure everything out that i had to stop and come back and im glad i did.

i dont really understand blogs...i like that on the other support group {maybe this one too but havent figured it out yet} that i can go back for all the years ive been on it and look up old post and advice and that helps..since i have so much memory loss....so i guess to me post and threads are like blogs in a way also..

forgive the typos..youd never know it now but i use to be very good at typing at my job and now with the memory loss, blurry vision and stiff fingers lots of typos...

i got sick in 2005 and like alot it took awhile for doctors to figure out what was wrong...i looked fine and healthy and all the test come back normal but still i felt so sick...it was unusal for me...i had depression but took medications and that was about it..i worked long hours..gave over 110% at work...took care of home and kids exercised was thin and active..had an active life...then got very ill and no one knew what was wrong...i thgouht i was crazy..i lost pretty much all friends...no one understood what fibro/cfs was...even family members thought since i looked fine that i should act fine...i was very hurt by remarks..very hurt by people turning their backs on me..very hurt that the job id worked at for years and years that i came into work when i was sick and worked over time and worked for others to help them when they needed they treated me very badly just because i was ill...and the illness was invisible and alot did not believe in fibro/cfs...it has destroyed my life...

along with the fibro and cfs the depression i once felt i had somewhat in control of was magnified...everythign was magnified it seems....social phobias, anxiety attacks panic attacks migranes fear of everything...memory loss...too many things to list...i miss working the most...i love my kids more than anything ive never been rich but i loved to save up and give them things to make them happy....i miss feeling productive and important...i now feel like a loser...im afraid to go anywehre....i was also a victim of a stalker...and had what i think was a nervous breakdown..but i try very hard to hide things from family and when i had friends..always try to be strong...now all the fears and anxiety from that is magnified....ive been told i have ptsd..and im trying hard to deal with it all...with doctor, psych doctor and conselour....but it all gets so overwhelming..

i can only drive to areas i feel safe...i no longer can drive on highways my nerves cant take it... i worry constantly...i hate the noise the lights traffic and crowds... i try to hang onto what little i can do..because i feel like im a burden and have let my family down...i try to go get grocerys when i can by myslef...its very hard...i pray and worry constantly i always tell myself not to over do it and get as little as i can but i always panic and load the buggy full so i dont have to make another trip anytime soon...so i end up overdoing it...and run like a rabbit through the store throwing things on checkout and in car and racing to get home to take medications...and i hate what my life has become...its nothing like it use to be...its not normal to have to run home and take xanax and pain medicatons just because you had to get grocerys...

i try to do waht the doctors suggest...the counserlor tells me to go shopping or garage sales which i use to love...i try but end up feeling anxiety...im embarassed of all the wieght gain from medicatoins and not being able to exercise like i use to...im fat and ugly...and of no use to anyone...these illness have taken so much from me...

my husband understands more than he use to and helps so much..but i feel like a huge burden on him and the kids when i have to ask for their help...my extended family doesnt understand alot...they think i look fat and healhty and should be able to do everyting like i use to...ive tried at first when diagnosed to tell them about fibro/cfs but they just dont get it...i no longer try to tell them...my inlaws are of no support but they never have been...they are the types that have stolen from us...lied etc...they will try to hurt anyone and eachother i worry because they are the kind that would call congress and say that your ploting to take over the world or anytihng...i have no support really from friends beause they all pretty much stopped talking to me when i had to quit job and was ill...so thats where i am..no one really in my life and no life...

dont mean to be such a bummer but im tired of being sick..tired of living like this...

Comments

hi :) congrats for your first blog here.

Sorry to hear you've had so much trouble with people other this illness. Ive found that to and lost friends and boyfriends in the past over it.

Most at the site dont reply to blog posts but many some times read them so be aware even if people dont reply, they are listening.
 
You sound like me. Same relatives, too. No one understands. Even my one close real life friend still doesn't get it. Not fully. She still tells me I should volunteer at a senior center, even though the last time I tried it, it almost killed me. I can barely go out or function in the real world anymore. Not well enough.

There are alot of people here who are in the same leaky boat. You are not alone.
 

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hurtingallthetimet
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