(no subject)
there are 2 major fucked up parts of my life that are so nightmarish i truly try and forget them.
the first being the 12 hours spent in the emergency room with a blocked right ureter.
the second being the first 6-8 months of my CFS onset. they say that the acute pain from a kidney stone is the worst pain known to man.
And the pain from CFS is not only hardly known, but is still debated whether it even exists.
Today i got to watch the CFS documentary entitled " i remember me".
it made me cry- because it really brought back memories of my days that i truly want to forget.
the first 3 years of my illness it was the sever fatigue and achyness that i have learned to endure in order to get by every day. but since this past September - i have entered a new phase of this mysterious illness where chronic pain is rivaling my fatigue.
i want to live the life i knew pre 04/01. but i have no energy to draw from, and to hurt all over with no relief has brought a new dimension to my depression. lately i've felt mostly anger- that no doctor can help me. ( me and the 100,000's of others)
i used to have the hope that i'll start to see some recovery in about 5 - 8 years.
that's what made me smile- that's what made me feel- "this is no big deal- you can do this"
But now i'm hearing that it's closer to 10 -15yrs with only a 12% chance of any recovery at all.
You can't die from CFS- but it is suicide that takes the lives from some "living" with CFS.
i'm not going to lie and say that i haven’t gotten to that low yet. but it's much more like i sometimes wish that God would take me in his arms and end things with just the whisper of His breath.
it's not that the pain that is so unbearable- it's the feeling of being completely worn out from the challenge of day in- day out of this illness never letting up- NEVER giving you a break. you just want to give up.
you can't live because you are so tired- and you can't sleep because you hurt all over.
it's in my nature to push myself. when i feel "ok" i push myself to walk up the stairs. or to put the dishes away. or go to the store no matter how much it hurts. doing a load of laundry makes me feel like a real person so it's worth the strain.
i'm lucky to be as functional as i am. most people i know aren’t able to work 3 days a week like i am. my 3 days are the biggest challenge for me. getting out of bed and getting myself in the car just is such an accomplishment that it's one of the things that helps me keep going.
i do have to come to terms that i will never be able to work full time again. this breaks my heart because ever since i was a little kid- i was very determined to be the best. i worked hard to succeed- and had nothing but dreams of always out-doing myself. i just wanted to be a successful artist.
now i just feel like an overweight obese piece of crap failure. i feel like i just didn't have what it takes to make it in the real world.
besides this all i can do is try and remain positive that i will remain strong enough to overcome this- and to be able to live and enjoy my beautiful life - and view this illness as a gift. there is a reason why God chooses a different path for you than the one you originally started out on.
the first being the 12 hours spent in the emergency room with a blocked right ureter.
the second being the first 6-8 months of my CFS onset. they say that the acute pain from a kidney stone is the worst pain known to man.
And the pain from CFS is not only hardly known, but is still debated whether it even exists.
Today i got to watch the CFS documentary entitled " i remember me".
it made me cry- because it really brought back memories of my days that i truly want to forget.
the first 3 years of my illness it was the sever fatigue and achyness that i have learned to endure in order to get by every day. but since this past September - i have entered a new phase of this mysterious illness where chronic pain is rivaling my fatigue.
i want to live the life i knew pre 04/01. but i have no energy to draw from, and to hurt all over with no relief has brought a new dimension to my depression. lately i've felt mostly anger- that no doctor can help me. ( me and the 100,000's of others)
i used to have the hope that i'll start to see some recovery in about 5 - 8 years.
that's what made me smile- that's what made me feel- "this is no big deal- you can do this"
But now i'm hearing that it's closer to 10 -15yrs with only a 12% chance of any recovery at all.
You can't die from CFS- but it is suicide that takes the lives from some "living" with CFS.
i'm not going to lie and say that i haven’t gotten to that low yet. but it's much more like i sometimes wish that God would take me in his arms and end things with just the whisper of His breath.
it's not that the pain that is so unbearable- it's the feeling of being completely worn out from the challenge of day in- day out of this illness never letting up- NEVER giving you a break. you just want to give up.
you can't live because you are so tired- and you can't sleep because you hurt all over.
it's in my nature to push myself. when i feel "ok" i push myself to walk up the stairs. or to put the dishes away. or go to the store no matter how much it hurts. doing a load of laundry makes me feel like a real person so it's worth the strain.
i'm lucky to be as functional as i am. most people i know aren’t able to work 3 days a week like i am. my 3 days are the biggest challenge for me. getting out of bed and getting myself in the car just is such an accomplishment that it's one of the things that helps me keep going.
i do have to come to terms that i will never be able to work full time again. this breaks my heart because ever since i was a little kid- i was very determined to be the best. i worked hard to succeed- and had nothing but dreams of always out-doing myself. i just wanted to be a successful artist.
now i just feel like an overweight obese piece of crap failure. i feel like i just didn't have what it takes to make it in the real world.
besides this all i can do is try and remain positive that i will remain strong enough to overcome this- and to be able to live and enjoy my beautiful life - and view this illness as a gift. there is a reason why God chooses a different path for you than the one you originally started out on.