Fibro and Chronic Fatigue Support Group

Overview of health issues:

Overview of my health diary:

Hi, I'm new to this group, but I am so glad it's here. I have visited many different chat/ forums and I like this one the best.

I was diagnosed with crohns back in 95, but I could still work and continued to have a full life. Then, the degenerative sinus disease kicked in, but in the 10 yrs I have had that, and the connective tissue damage, along with 7 surgeries, I was put on opiates (which I titrated up to) and STILL continued to teach, camp, be social and well, live a normal life. I had bouts of meniers disease, but I was able to control it via diet and diarrhetics. Even after being diagnosed with bi polar, needing to be medicated for my ADHD and even my DID (which both docs agreed that menopause and the amount of stress I was in at that time "pushed my chemicals off balance", back in 2009, I was able to live a full life and had never been depressed.

I started having the pain in my joints back in 2006, so I was put on Lyrica because we thought it was Arthritus from the crohns. I had throat surgery (a benign tumor) nov, 2010, but somehow, I have never recovered. My body aches became horribly worsened, I would sleep WAY too much, and it got to the point that I didn't even want to live in my body anymore. After numerous tests, I was diagnosed with fibro and cfs. My meniers disease kicked back up again to the point where I was "dropping" 3-4 times a week

Out of all the illnesses, which one "hurts" the worst? How long did it take for you to get used to your condition?

Fibro and CFS, plus a deeper round of meniers disease has taken me into complete disability. I have been approved (THANK YOU, GOD!), and I gave up my two bedroom apt (I bought a beautiful 5th wheel that my son and I both live in) to decrease my "overhead", but most days I just feel like a slug. In my mind, I know that I am doing the best I can dealing with these diseases, I know that I need to slow way down and just be happy with what I can get done THIS DAY ONLY, my friends are getting tired of hearing about it, and even reaching out to this forum takes effort. I was just wondering how long it took for you to get used to "being sick" all the time and adjusting to a different lifestyle.

Thanx again, and I feel like I am home here!

Hi Beci,

It took me years to adjust mentally to accepting the changes to my lifestyle. I had emotional pain at letting go of the 'past' me. I had incredible sadness and was constantly telling myself things I should be able to do. Of course, I almost always fell short of those mock goals. It was a vicious cycle. I wanted so badly to live a normal life that I devalued myself as a human being, as a mother and wife and professional. I don't think I had an 'aha!' moment. Coming here on the fibro forums have helped me to begin to think in terms of the positives in my life. Being able to share the day to day with other warriors has helped me feel part of a larger group and not so alone in my fight. Yes, there is the physical adjustment of limitations, but for me the larger change was the mental challenge.

You have so much going on in your life, and it sounds overwhelming. Do the best you can do and let that be ok, really ok.

hugs, heather

Hi Beci. I have had FM for 5 years. Im just now getting used to the fact that this is the way my life is going to be. Sadly enough,I dont really even remember what I used to feel like. Ive learned that I need to live life differently,do things differently,even think a different way. Days now need to be planned around meds,rests,and Drs. visits. I have 2 beautiful little girls though,and they keep me going. Welcome to the group! I hope you find the support and friendships you need!

Thank you heather and sunnydays. I do still put ALOT of expectations on myself and feel guilty if I just lay down and watch tv. I guess I'm just gonna have to learn how to be sick everyday, and then those days where I feel better, just enjoy them to the most! it's still pretty lonely as I am a single mom of a 17 yr old and I hate so much for him to have to help mom so much. But at least I'm not totally alone and for that, I am truly grateful and thank God every day.

I belong to a couple (NA and AA groups, I have almost 25 yrs clean!), so my friends call and chat with me, but even chatting on the phone is tiring. Thanx for being there so I don't feel so alone.

Beci,

It is so hard to lay the guilt by the wayside. That's part of the acceptance process. It's wonderful that your son is able to help you. You're teaching him compassion and empathy and those are wonderful qualities in a human being. Having this condition can be isolating. For me the fibro boards have been wonderful. I have learned so much, but also I have felt part of a community that I belong to and am able to reach out to others that are going through the same type of challenges.

Hope to see you around and welcome.

heather

Much thanx, heather