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need some cfs buddies  
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Posted 6/1/2007 6:25 PM (GMT -7)
so i've had CFS for 3 years with periods of remission and periods of relapse. the relapses havent been horrible...until now. i can hardly hold conversations, shower in the morning or even get out of bed. this is the part that i start losing interest in life...it just seems so pointless when i'm this sick. i can't work like i could and i have no idea how to explain it to my boss. imean, the second i say chronic fatigue syndrome ppl look at me like i'm joking...just b/c the name sounds so ridiculous and underestimated. it makes me sound like i'm just tired and like it's some made up name for something. i was in remission for almost 6 months...until a month ago. i've hit an all time low and feel totally alone and isolated. i only have one friend left and she doesnt understand this either. how could anyone who doesnt have it? my boyfriend knows about it but doesnt realize how hard it is and how horrible i feel all the time. i really need to start talking to ppl that understand. when i think about how sick i feel and how frustrated i am i get so down. i can hardly eat anymore...and i love food... and i refuse to cook because it takes too much out of me. this is the weakest and sickest i've ever felt. and no one seems to understand how awful it is...and how incredibly lonely. i dont even talk about it with ppl anymore b/c i get so frustrated when they just can't understand.
Posted 6/2/2007 12:33 PM (GMT -7)
hey i know exactly how u feel i've had cfs/m.e for 5 years now and its so upsetting when people dont understand if u ever wana talk i'm here xxx
Posted 6/2/2007 5:29 PM (GMT -7)
Hi chelly, I'm sorry things are so bad for you right now. I think it's especially hard to crash after you've been doing pretty well for a while. You are right that cfs is so hard for others to understand and so many people think it is not a "real" disease. This can make a person feel very lonely and alone. Has your doctor been able to help at all? That's another frustrating thing about cfs is that there doens't seem to be a lot docs can do for it. Hang in there and know that we can relate to what you are going through. Take care Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985 Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg ; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops   Clickable:   LUPUS INFORMATION & LUPUS RESOURCES . Please allow HealingWell to continue helping others by donating: https://www.healingwell.com/donate/   Co-Moderator: Lupus and CFS Forums
Posted 6/2/2007 9:37 PM (GMT -7)
I think I know how you feel, though I also know that everyone is different and everyone can react differently to illness, so I won't presume to say that I know your personal experience.

I've had CFS for over 20 years, and over the years it has gradually gotten worse. I can't work at all. I can barely run errands or take care of myself. Taking a shower is a major accomplishment, and I only do it about once a week. And of course it depresses me, but because it's been this way for so long, I have a different outlook on life. I don't have any expectations of being able to do normal things.

So I spend my time just thinking or puttering on the computer, or reading. I have some great online friends who I talk to by instant messenger, which I find less taxing than talking on the phone, where I can easily lose my train of thought. I also chat on online forums that are funny and silly, espcially a fan site for a band that I love.

This may not sound ideal, but it's my life, and it's not that bad.
Posted 6/3/2007 1:51 AM (GMT -7)

  I'm kind of in the same boat as you are with CFS and you can email me if you wish to talk about it as my email is posted on my sig as I have had it for 13 yrs now an still trying to make things easier on me to suit my way of life as I live in Alaska and hunt and fish for most of the food we eat, just make sure you put in HW in your post k

  Cowboy up

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  Happiness is sitting around a warm campfire with no worries or cares as day turns to night.
 
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  Anxiety/Panic, CFS, CNS damage, MCS and Diabetes type 2
 
 

Posted 6/4/2007 4:03 PM (GMT -7)
hi chelly,

i am, more or less, in the same boat as you! while we are in this boat we should connect. :) i'd be happy to be your pen pal, if you're interested my email is in my profile. until then, many (((((((HUGS))))))),

Ra Ra
Posted 7/10/2007 7:40 PM (GMT -7)
confused  dear chellybelly, i totally understand;i have had cfs since i got a virus after surgery for crohns disease in 1979......was tested for allergies & referred to a dr in denver who was seeing patients with weird symptoms....like low grade fever of unknown origin, muscle weakness that is beyond belief & would come & go, swelling of mucous membranes , confusion, forgetfulness...depression....& after everything else was ruled out, all i knew for certain was that i have an autoimmune disease of unknown origin:my mother has it also as do a couple of friends;mom also has had crohns.....boy, believe me me, i know how you feel....since i have been living with this so long;i am an artist who paints during a "good" period(which means i CAN do it).
    i am a lousy typist....but a good friend if you need me. i am here. have you had anything like crohns or allergies even? there seem to be a link to epstein barr virus;my titers are always high....my body is attacking itself.....chicken pox, shingles...i have so many symptoms i can't even list them all right now.i really hear you loud & clear....i know it hurts how people react...i have been thru he whole "well, you look  ok" thing, etc....they don't see me on days when i can't get out of bed;i understand. artpainter 44(i am female, by the way...seems like more women than men get this, but no one knows much about it);i have been to so many doctors it is incredible;the frustration....i know how alone u feel. i do understand. :-) hang in there, please.....have hope;i know how hard this is.do what you can when you can....& do ask for help  with things like nutrition, etc....this doesn't kill you(there are lots of days u wish it would....i know). i am a friend if u want one.take care, painter
i am a freelane artist with too any interests to list here;i believe in kindnes and compassion towards others...and towards animals and all living things...i will respect you if you wil respect me;we are in the same boat, really, we humans..sick or well. if we do not treat one another well, then why are we here?please, please, be kind & & listen....& "walk a mile in my shoes". wewill all be happs

Posted 7/11/2007 9:01 PM (GMT -7)
Hi Artpainter,

I hope you don't mind me posting, I don't have CFS, I have Addison's disease, which causes some extreme fatigue. So far my adrenals aren't doing anything according to the tests yikes, and the steroids aren't giving me the energy I'd somehow dreamed they would. This causes extreme fatigue and I have horrible episodes where lifting my arms is just like running a marathon.

I wanted to post as I noticed you were an artist and I really felt for you when you mentioned about not being able to paint and your "good periods" where you could.

Taking away our love and also our emotional release when we need it the most is so horrible, but thats what these diseases seem to do :(

Are you able at all to hold a brush? I've been doing something that is very hard but so far I'm finding some peace in it and a little less depression. I do paint some, but mostly I love to figure draw... but when its bad my arms and mind do not relate and they shake.. what comes out is some shakey mess! It frustrated me to tears and depression. And one day I said that I was going to draw even if I had to tape the pencil to my hands (Which I did, it didn't really work to well, maybe should of used ducktape).

At first it was hard and embarrassing really, why did I want to keep this up when it just made me more depressed? But after a while I gave into it and my art evolved into something different, I went with the shaking and the looseness, stopped trying to do what I'd been doing before. (just during the episodes)

It is still hard to fight through that depression but I look back at my sketchbooks and some of the art I created during bad periods and smile. Its different all right, yet makes me happy, well some if it makes me cringe and laugh in spite of myself. I hope to put them up soon for viewing with a "normal" gallery and another gallery for drawing/painting during episodes.

I don't know if this is possible for you or if you want to do it, in any case I'd be happy to listen when you need to talk and are feeling very down. And sharing helps so much.

I hope all is well and you are feeling ok.

micky
Posted 7/12/2007 4:28 PM (GMT -7)
:-)  hi, micky...thanks so much for your post;i am so sorry things are so difficult for you...i love your attitude & outlook..yes, i have done some painting during "bad periods" & am now learning from others that some of it is really good abstract art;i am an emotional painter so abstract art really suits me...usually there are people in my work. if you would like to see some of it, & would trust me with your e-mail address, i can attach some for you to see. i would love to see some of your work if possible...i am at caat-humane@comcast.net(my computer has been doing some weird things but i can try to send pictures of paintings...i was able to yesterday but it would not attach a couple of days ago. you seem like someone i would like as a friend;if you want a friend, i am here, painter :-)
i am a freelane artist with too any interests to list here;i believe in kindnes and compassion towards others...and towards animals and all living things...i will respect you if you wil respect me;we are in the same boat, really, we humans..sick or well. if we do not treat one another well, then why are we here?please, please, be kind & & listen....& "walk a mile in my shoes". wewill all be happs

Posted 11/11/2007 8:20 PM (GMT -7)
I am so thankful you and others suffering with CFS share at this message board.  I was diagnosed with CFS after 'crashing' so bad i thought i was going to be laid off.  While suffering from what we now know is CFS i have basically inadvertently isolated myself as well.  I over the years turned into the 'flakey friend', you know the one who ALWAYS calls to cancel.  My head would want to do it and my body just wouldn't let it happen, and then the invitations stop coming, and then the phone calls stop coming and the next thing you know...you're by yourself.  My relationship suffered as well, i'm sure all of us have experienced the frustrations that go along with being in a relationship and unable to have relations because you're so tired all of the time.  You are not alone even if it feels that way, keep on reaching out and do what you can when you can, little steps. 
 
I'm still adjusting to my diagnosis, i was very angry for a while but am improving my attitude and outlook slowly.  I do agree with those who mentioned trying to find a creative outlet, poetry, journaling, crocheting, music...you don't have to be great at it, just let go and give it a try.  I am musician and one of the hardest things to cope with was being so exhausted i didn't even have the energy to pick up an instrument, but i could pick up a pen and i just kept writing.  On days i'm better, i do what i can, on bad days, i just let them be bad and find other ways to keep my mind active while my body is having its temper tantrums.  I figure i had 2 choices, find ways to cope, or jump off a bridge...i didn't have enough energy to jump. (that was my attempt at CFS humor).  Yeah, i know i should keep my dayjob but their is a serious truth to it, if you look hard enough, their is good in everything, i'm just happy i wake up every morning...everything else that may occur is an added bonus and having that frame of my mind keeps me going.
Posted 5/12/2008 1:35 PM (GMT -7)
Hey there!

I have been working in Sweden a couple of years ago in the swedish board for the so called Me/Cfs foundation. Believe it or not but the swedish term for chronic fatigue syndrome sounds even more lame, sounds a bit like "a little bit of tiredness syndome". We were having discussions on trying to change the name somehow, but we couldn´t go as far at the time for political reasons to change the name completely. We finally agreed on Me/Cfs which is short for myalgic encephalitis and chronic fatigue syndrome. Some of us in the board wanted to delete the Cfs completely. If you would like you could always say that you have Me to people you meet, cause they wont know the difference anyways.

I have an Me/Cfs friend that tells people that wonders that it feels like you have the flu constantly, and how would they feel if they had that. He says healthy people can relate to that.

Maria
Posted 6/3/2008 4:24 PM (GMT -7)

Hello chellybelly, (As only we can say - I KNOW)

    Sorry to hear you're suffering at the moment - i have had cfs/me and fibro for seven years. I found when this happened to me, all i saw of my friends was a cloud of dust! An to think, up until recently i didn't even have the internet so i lost myself in writing silly poems and mystery stories. At least when i have the wherewithall to do it. eyes As i have only recently found this place - i'm kind of in the same boat as yourelf. If you ever want to chat, rant or whatever - i'm here.

Take care treehugginhippy cool

Posted 7/18/2008 9:10 AM (GMT -7)
Hi Chellybelly: I visit over here, and on the Chronic Pain forum, from the Lupus forum. The fatigue can cause a lot of isolation and people don't seem to understand. I'm feeling very isolated too. E-mail anytime you would like someone to talk to. My email is in my profile.

Treehugginhippy: I had to LOL when you wrote "all I saw of my friends was a cloud of dust!" I can relate! People just can seem to get their minds around it. It's amazing the comments some people make!
Posted 7/18/2008 4:33 PM (GMT -7)
After reading everyones posts

and we seem to all be " facing the same daily issues"
one mentioned us all in the same boat

i think we maybe are little boats all sailing on the same CF sea
or harbor

One of the things that does give me strength is to know
im not facing this alone, there are others who face the same issues every day...

Thank you all for sharing your story,

each story is like a piece on a patch work quilt; unique, yet sorta the same,..
all bought together by the threads of Healing Well

:)
Peace to your sea
They that wait upon the Lord shall renew their Strength, they shall mount up on wings as eagles, they shall run & not grow weary, they shall walk & not faint..."  Ish   40 v. 31 
~
Sjrogrens Syndrome, Asthema, Chronic Fatigue, Chronic Pain, Head aches, Migraines, Gastro Intestinal Problems , Esophegial Spasms;   Fibro Myalgia , Kidney Stones,  & CP (SI joint,   low mechanical back pain..L4 & L5 Vertebrae Misaligned,  Spinal Stenosis and Degenerative Disc Disease, Bulging Disc, anterolisthesis L4 L5 ,  L4 -- S1 pain  caused by osteoarthristis ,bone spurs, causing pinching or pressure on spinal chord)

Posted 7/30/2008 11:27 AM (GMT -7)
I think posting your message is a step in the right direction.! My husband has also reached this point in his illness, he feels there is no one that understands and he is right, I will never feel what he feels but it is also hard for the people on the outside of you as well. I pray for you and wish you well

confused and dazed
Posted 8/5/2008 2:41 PM (GMT -7)
Hi chellybelly and all the others here!!! I'm normally hangin' over at the fibromyalgia forum and have totally neglected all my cfs buds. I have cfs, fibro and cebv......if there was a cebv forum, I guess I could hang there too and not get a stitch of any work done around here all day! (LOL) I guess I'm a cfs bud, a fibro bud and a cebv loner. Please see my replies to "New here - looking for some friends that can relate" and "Help, trouble getting diagnosis.....there may be some info there that can help you in your cfs journey!

Gentlest of hugs,
John
*****************
John (53)
*****************
Dx'd June 2008 with Fibromyalgia & CFS  possibly caused by chronic Epstein-Barr virus (many years of ongoing symptoms.....recently worsening)......also, previously dx'd sleep apnea, high blood pressure, hypothyroid, low testosterone, high cholesterol, heart arrythmia & headaches (all types)
 
*****************
Several meds too numerous to list or remember!

Posted 8/14/2008 12:24 AM (GMT -7)
treatment is there for CFS..go get it...at least give it a go.....the treatment s called Marshall Protocol..for god's sake get it...you will be cured..if you have CFS/Fibro/MS.....many people have benefitted from it....plz get it...curing rate is above 95%....get a Vitamine D metaboilitise test 25-d,1-25d....and there you go...:)this life is yours....dont ruin it.
Posted 8/24/2008 11:44 AM (GMT -7)
hey chellybelly! I have onily one friend left and slowly losing ground. I have cfs and fibromyalgia. Seems like Everything is too much to do. I'm a mom and wife with more to accomplish than my body will let me. I just started on the internet today looking for friends who understand seems like everyone posting is in the same boat. I don't want to try to make friends off the computer because they will think I'm lazy or full of it. Everything is a mess around me I can't keep up no energy. Today I decided to start a new life making friends on the computer, just someone to chat with must help it beats total isolation. Everyones life goes on around them while I exhustedly sit on the side lines crying because I can,t keep up with the mess they all make. There has to be a way to have some socializtion in isolation. So lets chat soon genniefstr
Posted 9/25/2008 1:04 PM (GMT -7)
Hi chellybelly,i would love it if we could be email buddies all my love agnes 41
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