Health knowledge made personal
Dear Hopeful,
I truly feel for you and wish someone had an answer. I can only share my own experience. I ended up getting laid-off because of my sick days and inability to work at the pace I previously worked. Looking back, I wish I had taken advantage of my short and long term disability benefits. I have not been able to return to work because each time I try to complete tasks or chores at a normal pace, I end up in the ditch. Everyone is different and everyone must learn to keep journals with specific information to guide them as they have their ups and downs. My journals have enabled me to figure out what works for me and the only commond thing I find with everyone is "PACING."
Try to pace yourself and keep a journal of all activities, food and thoughts. It will help you decide what is best for you.
I hope and pray you feel better each day.
Viv
Hi Hopeful,
I am sorry to hear that you are going through so much. I'm 30 years old and have had CFS for my entire adult life. I was too sick to work from ages 24-26, and spent most of my life in bed during those two years sleeping 16 to 20 hours a day. Thanks to a wonderful doctor who specializes in CFS (and some alternative treatments), I am now able to work full time. Let me be clear, I have NOT recovered from CFS. It is still quite present and controls my life; however, it is not as bad as it was those two years. I do not have a social life, and I have had to give up many things I enjoy (including international travel, martial arts, attending social events or religious services, and other physically exhausting activities).
I agree with Fibro Viv that pacing is extraordinarily important; however, when I was at my sickest, even pacing did not help. What eventually saved me was my current doctor who I found through Co-Cure's Good Doctor website ( http://www.co-cure.org/Good-Doc.htm).
In the end, you'll have to listen to your body. Only it can tell you whether your are fit enough to work or if you are making yourself worse by "pushing through" the fatigue and other symptoms.
I wish you the best.
Alyson
Dear hopeful You bring a tear to my eye since I too have been going through the same thing. All I have to say is you HAVE TO KEEP THE HOPE & start with a wellness plan of action to see if it can help you improve your energy level at all & be willing to change the wellness plan when the plan U hoped would work doesn't seem to. Their are no quick fixes what works for someone else might not be what your body needs to repair itself. As for putting a time limit we all heal at different speeds so I truly believe that its unrealistic to compare yourself with anyone elses progress they have or have not made DON'T LISTEN TO ANY DR. UNLESS THEY SPECIALIZE IN C.F.S.
This WILL MAKE YOU STRONGER!!! And when U are finally ale to get over this Just think, YOU WILL BE ABLE TO MOVE MOUNTIANS!
If u would like to hear about the way & which I have been able to juggle this illness, make a living, try to clean my house Ha! home-school my 2 kids because I can't get them to school on time in the A.M.etc...etc...I have 13yrs . to tell.
Please email me I want to help you with this terrible thing that has completely taken over your life!
clt_endurance@yahoo.com
Lets hook up on facebook too if U don't have an account It's easy to make yourself one. You can look up my name 'Lori Thacker'
By sweetie,
**Lori**
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Posted by Hopeful
I have been an RN for 22 years with CFS for about 2yrs ,prominent s/s were debilitating fatigue and concentration and memory,I am now not doing clinical and serve as Infection Preventionist at the hospital,much more sedentary, just recently diagnosed 3/1 even though struggling with syptoms for 2 years. After diagnosis went out of work for 4 months.Since back to work after two 6 hr days where I felt I paced myself, I crashed and woke up with sorethroat ,joint pain ,H/A and have now persited 16 days.I have to make a decision by within about a wk now whether to stay and pace and work minimum of 5 six hr days or pull out .I can't get in with my MD before I have to make the decsion.One MD said 90% get better in 5 yrs another said he sees only about 50% recover.The symptoms have been minimized with rest for periods but have not completely subsided.I need opinions on whether I am hurting myself despite pacing on the trying to reach the 5 yr goal or whether my body will eventually adjust.I need to work for finances but not at the cost of chronic pain.Just please give me your thoughts, I know everyone with CFS varies but what do you see as the trend? I am so tired and overwhelmed I can't seem to reason out a choice and it hard for family to help because they don't feel and understand the symptoms plus the financial impact is going to be huge with us probably having to downsize.Please give me your opinion on if I continue to push forward will my body adjust or am I probably decreasing chnace of 5 yr recovery.Feel as if I have no quality of life right now.