A Mom's Story re Raising a Family with FMS CFS

Discussion in 'Fibromyalgia Main Forum' started by JLH, Jun 4, 2006.

  1. JLH

    JLH New Member

    Fibromyalgia/CFS and Raising a Family

    by Marnie Schallert

    I am an almost 40 year old, happily married wife, and mother of two young energetic boys! I fight daily to overcome the numerous health challenges I face having fibromyalgia (FMS) and chronic fatigue syndrome (CFS). These two “syndromes” have been responsible for numerous health problems that I have struggled with my entire life. If there is a symptom of FMS or CFS out there, I have had it. Rather than go into detail explaining all of the things wrong with me, I will sum up my health like this: I hurt all the time, I am always exhausted, my brain doesn’t work well, my body doesn’t work the way it is supposed to either, and I have been in a really bad mood for 39 years (to steal a line from one of my favorite movies, “Steel Magnolias”)!!

    As a result of my numerous health problems, I took many courses in nutrition and fitness. I figured if I ate healthy, exercised, and got in good shape my body would finally work right. I started my health career with a marketing job for a nutritional supplements company. I began having repetitive strain type injuries (carpal tunnel, tendonitis, bursitis, etc) from working on the computer all day. I then went on to become a certified nutritionist, personal trainer, and aerobics instructor thinking if I got a more physically demanding job my health would improve. I even managed a women’s gym! Unfortunately being in good physical condition didn’t stop my FMS. I kept having spinal injuries which always set me back (pardon the pun). Finally, I had to give up the intense exercise regimen. Physical therapy helped temporarily, yet the problems got worse when I resumed “normal” activity.

    My FMS got really bad after I had my first child! The months of sleepless nights, stressors of “new mommy hood”, hormonal swings, the strain of carrying my baby around constantly, etc. brought my FMS symptoms to a level that I was often bedridden. In a time that was supposed to be one of the happiest of my life it became all about survival. I fought to ignore the pain and function through the fatigue well enough to care for my baby. I had to give up many of my parenting ideals just to make it through each day. Take out, frozen dinners, and yes, even junk food, became staples to our family meal plan as I could rarely cook. The TV was often my son’s baby sitter as I dozed on the couch. Laundry piled up and the house became so messy I was ashamed. I gave up on having a social life altogether – no energy for it!

    While other moms in my neighborhood took their kids to the park, zoo, or museum I sat in the lawn chair and watched my son play in the backyard. I gave up my “medications are evil” stand and gladly accepted the sleeping pills, pain meds, muscle relaxers, etc. that numerous doctors offered. Then 3 years later, my little Lucas came along. I was not planning for another child due to my health problems, so let’s just say these things happen! Again, my FMS became even worse to where I was very disabled. Things like taking a shower were so difficult I had to stay in bed several hours to recover. I had to sit down in order to brush my teeth as leaning over the sink made me dizzy and nauseous. I could not drive, as I didn’t have the energy or strength to put the kids in their car seats. I feared falling asleep at the wheel or getting lost in a fibro fog! With my bladder and bowel problems I knew I would have to use the bathroom as soon as we left the house! Boy am I blessed to have a husband who cares and understands. He did 90 percent of the housework, all the shopping, and took the kids every weekend while I stayed in bed.

    Now my youngest is two years old and I think I have stopped the downward spiral and am making a slow recovery in some areas! I can drive my oldest son to and from school each day. I can get through some days without an afternoon nap. I even manage to get some kind of a homemade nutritious meal on the table more often than not. I am able to participate more in activities with my children. One of the most valuable lessons I have learned through my illness is to enjoy the simple things in life and be grateful for each moment I can spend with my family. I can be standing in line at the grocery store and be overwhelmed with joy that I am even able to be there! Every moment I can care for my children is a blessing, even if it’s just changing diapers.

    As a mom with FMS, I am especially interested in sharing any information I can that will help other parents, which is why I offered to be a newsletter contributor. I know firsthand how challenging it can be to raise children when you are tired, in pain, depressed, and irritable. I am excited to have an opportunity to share some “coping tips for parents with FMS/CFS” that have improved the quality of life for me and my family. Mostly I want to offer hope to anyone out there suffering with these conditions! There is joy to be found even in suffering. Our limitations can be strengths for our children as we do our best to love and care for them each day in the midst of our battles with Fibromyalgia and Chronic Fatigue.

    *End*
  2. dleaning

    dleaning New Member

    post. I can relate totally to everything!!!! I'd say I started to feel like crap (pardon the word!). I had post partum depression along with taking care of my mom who was battling cancer. Trying to care for a newborn, a 6 1/2 year old, my house, and my mom and making sure her bills were paid. I didn't get a good nights sleep as I was the one who had to get up with the baby. I did manage to function until mom died 6 months later and then I "crashed" so to speak.

    My brother and I were executors to her estate and of course with him living out of state I was left to do the running around. Then 7 months after mom died, I found out I was pregnant again, only to lose a little girl. I had a 2nd trimester miscarriage and the doctor induced me. After 22 1/2 hours of labor she was born....then the dr couldn't get the placenta out. They did a d&c to get it out except, they never got it. Came out 2 days later.

    That is when the pain and real fatigue started. I did most of what you did, easy meals, TV shows...etc. I can relate to you and to this day, I still feel like a failure as a mother.

    This was a great post. I am so glad that I wasn't alone!!

    Dawn
    [This Message was Edited on 06/04/2006]
  3. kriskwon

    kriskwon New Member

    I have no children, I don't work, and I have a very supportive husband. I always wonder how someone who has children, or works, or both handles FM or CFS.

    I just want to say that I believe you both and everyone else that has these DD are the strongest people in the entire world, and you have my strongest admiration.
  4. kriskwon

    kriskwon New Member

    Bump, please
  5. dleaning

    dleaning New Member

  6. Robynbg

    Robynbg New Member

    Thank you...I am a FT working mother of a 4 and 2 year old little boys. Yes, I too have a wonderful husband who understands and helps me. My "problems" started one month before my last little boy was born. I've been to 3 Orthopedics, One Nuerologist, Chiropractor, and then back to my Family doctor. Still no resolution. She does not want to diagnos me with Fibro. but stated if she sent me to a Rheumatolist they would diagnosis it as that. I am just at the "tired" point in all of this. Not too mention just "tired" of even listening to myself complain...I can only imagine how my husband should feel. It's nice to find this site...Thanks again for your side of the story!
  7. dleaning

    dleaning New Member

  8. JewelRA

    JewelRA New Member

    Wow. What an excellent article. That really sounds almost identical to my life!! Glad to know I am not the only one out there trying to raise little ones in this condition.

    Thanks for sharing.
  9. JLH

    JLH New Member

    I don't know how I raised all three of my children while being sick as well as working full-time. It's like a nightmare--I still remember it, but just can't believe that I survived!!

    Janet
  10. j39jones

    j39jones New Member

    I am a 45 year old mother with still 3 kids at home. I have been diagnosed now for over 6 years, but unable to work for 7 years. I just won my 5 year battle with SSA earlier this year, but unfortunately they will only pay my back disability for about 10 months. Which means they have to pay me a lot less, considering I was a nurse for 16 years and my disability should have been well over a 1000$/month.
    Anyway, I know exactly how you feel. I have pain, pain and more pain. On the wall in my doctor's office is one of those pain charts ranging from 1 to 10. I am usually about a 18 to 20.
    My doctor is the greatest though. She is a fantastic rheumatologist and has taken great care of me. She has been my rock and my friend through some of the worst times.
    My family is finally beginning to understand what FMS/CFS can really do to me. Sometimes I get the feeling they are not exactly sure about whether I truly hurt or am just saying.
    I have loads of stress. My children are the main source. My 15 year old is a lazy boy who I couldn't move away from a computer or game system even with a nuclear bomb under his butt.
    My 9 (almost 10) is a very immature boy who whines constantly if he doesn't get what he wants immediately
    My husband is not a real big help either. He comes home and then disappears downstairs for pretty much rest of the night.
    I am so tired of hurting 24 hours a day, tired of the fibro fog I get and tired of having this syndrome.
    Somewhere I have a letter that is titled "A letter to Normals" and it expresses everything so perfectly that a person with FMS/CFS feels regarding how people react to you.
    Just because I say I am having a good day, does not mean I am pain free. It means it is a tolerable day and I never know when I am going to have a massive flare up and end up crawling up the stairs to my bed.
    2 years ago I was also diagnosed with radical degenerative disc disease in my lower spine. I am already feeling the numbness and weakness in my left leg. So I have started exercising at my YMCA in hopes of keeping out of a wheelchair for a while longer.
    My only stress relief is my cross stitch. I do a lot of that now. It is my lifeline into reality and out of depression.
    Hope everyone out there with FMS/CFS has a better life ahead of them and keep up the good fight.

  11. j39jones

    j39jones New Member

    Go to a Rheumatologist and you will literally get down on your knees and think she/he is a god. My Rheumy ( that's what I call her after 4 1/2 years with her) has really helped me so much. She only took about 10 minutes to diagnose with SEVERE FMS. There are levels to this problem. I did not know that. I had all 18 points plus a few more that the ARA didn't state. There are some on your calf muscles and on the shins and on the tops of your feet. The ARA actually contacted me about these additional points after my dr contacted them and told them about me.
    She promptly put me on narcotics for pain and then we had to go through some different meds for sleeping, then I started having anxiety issues and she put me on medication for that and then with the radical DDD she put me on Neurontin for the phantome pains.
    She is a wonderful doctor. Please find a Rheumatologist as soon as possible!

    Jean