Anyone working with CFIDS?

Discussion in 'Fibromyalgia Main Forum' started by SoxFan, Aug 24, 2005.

  1. SoxFan

    SoxFan New Member

    I have been ill with CFIDS for more than 2 yrs now, and I continue to work at my job as a software deveoper.

    Although I feel fortunate to have a low pressure job with good hours (8 - 2:30 mon-fri), (and my symptoms are not as bad as many of you who post here), I often have a tough time making it through the day. I also have 3 kids and a husband who usually doesn't get home before 7, so I have a lot of "kid" responsibilities when I get out of here. I do my best to schedule a nap in when I get home from work, but it isn't always possible.

    Anyone else in a similar situation? Any tips on making it through the "bad" days?

    - Susan
  2. SoxFan

    SoxFan New Member

    Thanks, Cat. It's just nice to know that there are people out there with this who are still able to keep a job.

    It's discouraging to hear how many people have had it for SO many years, though!
  3. BxGirl

    BxGirl New Member

    I have fibro and a host of other problems. I am now working full-time (7 a.m. to 4 p.m.). I'm a Legal Assistant.

    I have had fibro for almost 10 years and have been working non-stop. I also volunteer, take care of my house, shop, cook, clean, etc. etc.

    I am going to be tested for Narcolepsy, I have colitis, IBS, liver and pancreas problems (not major) and of course the pain and fatigue.

    I refuse to stop my life because of this DD disease. I just work around it. There have been times when I've falled asleep at my desk.

    Of course, my son is grown and I dont' have those "kid responsibilities". I don't know how I would have done it if I had fibro back then.

    On bad days I just work through things and move slower than usual. I try as hard as I can to focus and then make my way home and rest. Maybe I'm getting used to it, I don't know.

    I hope some moms will be able to give you some better advice!

    Love,
    BxGirl
  4. Meekah

    Meekah New Member

    I've had CFIDS for about 10 yrs now but was only officially dx. in April of this year. The fibro has been around for a couple of yrs, but again was only dx. this past April.

    I work full time as a teacher. I have two kids, ages 9 and 4 and most of the kid responsabilities. ( my husband owns his own company and is very busy so can't help out much with the kids)

    These past two yrs have been the worse for me as the CFIDS has been at it's all time high.Last fall after being tired of watching my kids grow up from my bed or couch I went through a whole bunch of tests and it took until April and a whole bunch of "normal" tests results for the endo to dx. me.

    After the diagnoses, I was pretty much on my own, as far as treatment. I'm now seeing a naturaupath and can honestly say that I'm feeling better. I don't know if it has to do with being off for the summer...But, the last 3 summers I had spent them in bed, so hopefully I will still continue to do better in the fall when school starts.

    I had been travelling to diffrent doctors for the last 10 yrs, (off and on) and they all told me to "get some rest". Well the last one that said that to me got all my frustration out. I just looked at him and sternly said,"If I rest anymore I will be in a coma!!!"

    I've just always had that type of attitude with the doctors I've seen. This is why I ended up trying a naturaupath. She is doing NAET treatments and accupuncture with me and so far it's really helping.


    I'm not being of much help, here, but just wanted you to know that you are not alone.

    Hugs and Prayers
    Meekah
  5. elsa

    elsa New Member



    Hi, Susan,

    I have kind of an unique schedule at work. It is a very physical, high energy job where I have to be "on" for the length of time I'm working, however, I don't work everyday.

    Work days can be anywhere from 6hrs to 11hrs. I refuse to give up what I do .... I love it and it's a part of who I am .... unfortunately, so is CFIDS.

    I have learned to plan ahead. My form of "pacing" is planning to have about 2 "stop" days to heal after a long work day. My schedule varies ... depending on what type of day I am scheduled to work. I might work three days in a row, or I might work 1 day on, then 2 days off.

    Since I won't give this up, my treatment plan revolves heavily around this goal. I take alot of supplements, not to different from the supplement routine a bodybuilder would follow.

    I also take tramadol/ibuprofen every six hours while I'm working ... whether I hurt enough to take it or not. The theory is "getting ahead of the pain", ... just because I don't hurt at 10am on a work day, you can bet I'll hurt big time by 10pm of the same day. By staying on my dosing schedule, I'm able to stay ahead of my CFIDS pain.

    I have provigil to help with my fatigue. I am so pleased to say at this time, I am using it less and less , BUT ... I am very glad I have it.

    I try ( try being a big word, LOL ) to go to bed at same time every night , whether I'm scheduled to work or not. Idea, trying to keep as much as possible on an even keal (SP?) Lunesta has been a hugh help in my sleep disorder. I am getting the healing sleep that has been missing in my life since CFIDS. ... Lunesta makes it possible to get up and do it again ...

    A while back, when I was trying to come to terms with what it means to have CFIDS, I made a list of goals. That list was what I wanted for my life and things that I did not want to give up. My work was one of those things, as was my involvement with competitive show horses.

    I realize I may not be able to do the same complete schedule that I had prior to CFIDS, but all the same components are there on some level.

    The rx medications are to help me attain my goals in the short term. The supplement routine will hopefully help my body get better (or heal) in the long run. I don't "mask" anything w/ my rx meds. Whew, I know what's going on with my body without them!! LOL

    If you could get some quiet time to yourself ... (tough with young children )... and make a list of what YOU would like out of your life, you might find life with CFIDS "doable". List the things that are important to you that you don't want to surrender to CFIDS ... and then make a pacing, medication/supplement, adjunctive treatments plan that could make your list a reality. Be sure to give yourself all the time in the world to accomplish you list.

    We didn't get sick overnight, and we're not going to get back what we need for a productive life overnight. There will also be set-backs ... but they are just challenges to our goals. One foot in front of the other ... to accomplish what it is YOU want, not what CFIDS will allow you to have.

    I'm not at my "end goal" yet where my work and horses are concerned, but I AM getting better little by little.

    For me .... I could make my list and strive to attain it , or , I could sit in my rocking chair looking out my window and cave to CFIDS. ( That's not an euphemism... I really was doing that at first diagnosis. )

    If you love your work, try doing that quiet time and see if you can make it happen as healthily as possible. If spending more time with your children is higher on your list, then try to make that a reality.

    I'm not Polyanna ... I know this is a lifetime illness. For my sanity, I had to map out a path that led (leads) to a happy, productive life that suits Elsa, that also happens to include CFIDS/FM.

    I may have given you way more then you requested with your "work with CFIDS" post. LOL Sorry about that. I have continued to work through all of this and I didn't know how to answer you without some explanation as to how I got there.

    I hope this helps you some. Good for you for trying to work it all out. Sometimes it is soooo easy to throw your hands up and say "this is tooo hard". That's where this wonderful board comes in !!

    Take care ... ,

    Elsa

    P.S. Please forgive me if I came across as a mix between a cheerleader / preacher. I'm passionate about acknowledging my CFIDS/FM, but not passionate about allowing it to rob me of what makes Elsa ... well ... Elsa.


  6. KMD90603

    KMD90603 New Member

    I also have CFIDS and I am currently in nursing school and I work mon-fri 5pm to 10pm. I am married with a 4 year old son as well. My symptoms vary from day to day. Some days I'm bedridden with a fever and the range of symptoms. Other days I can get all the housework accomplished on top of everything else. Most days, though, I HAVE to take a nap otherwise there is no way I can make it through work. And it's not just a 20 minute nap, it's anywhere from 2 to 3 hours. I often feel guilty because my son ends up sitting and watching tv or playing computer games. But, he's so good about it and he understands that mommy is sick.

    Unfortunately, I have no good advice. If you need a nap in order to get you through the day, then try to take one. When you are feeling sick from the CFIDS, it is important to get as much rest as possible. Even though I never feel refreshed waking up from a nap (or anytime for that matter), I still try to rest as much as possible in order to function.

    Hope this helps,
    Kim
  7. elsa

    elsa New Member



    Back to the top ....

    E.