Harriet and Rebekah posted comments to my blog about having a chat group. I think that is a wonderful idea! I have no idea how to set one up but Harriet said she would be happy to do it so I will let her take the lead on it. I think it will be a great place for us to talk and help each other cope!
Harriet, let us know if you need any help and give us the directions to join the chat when you have it started. I look forward to chatting with you all!
I will continue to blog so I hope you all will continue to visit here!
Kristy
12 comments:
What an amazing experience coming to this blog for the first time tonight!! Thank you to each and every one of you for the transparency of your sharing. So many of the stories and feelings were like people had been reading my mind, picking out all of those deep, difficult emotions and changes that I have walked with. I have been journeying through the effects of CFS for the last two years, which came on the heels of three major back surgeries in less than 2 years, followed six months later by an agressive form of breast cancer w/ chemo and radiation tx, and then a fight w/ Epstein Barr. During these last five years I have experienced major losses and worked through a lot of grief issues (had to close my business, was on disability multiple times, we almost lost our home, and the highly traumatizing experience of loss of personal identity--who is this woman, I no longer knew who I was). As many others have already written, it has been a life changing experience that still brings days here and there when I would rather isolate than struggle through the fog of just trying to get dressed and feed myself.
Having said all of that (there is certainly so much more that I could write, however I will leave that to my journal for now which has become one of my places for healing), I too would like to begin to dialogue with others who are striving to grab a hold of a semblance of a rich life despite the effects of CFS.
I believe today that I am blessed in so many ways and have a sense of serenity that I never thought I would ever experience again. However, I also know I still have a long way to go as I move on in this battle against the effects of CFS and there are some days when I find it difficult to keep up the hard work. I am not sure how the chat would work, but it would be wonderful to be involved. I will just keep checking this blog site for further information, and look forward to having the opportunity to get to know these strong, brave fellow human beings who are journeying similar pathways to mine. God Bless All of You, Linda from Oregon
I am 58 and have lived with CFS for 8 years this month (or at least this is when the first crash came). I have never read a blog before but I can relate to comments about how isolating this disease is. I happen to be doing fairly well right now but have had relapses so I always live in fear of going back to days where I couldn't get out of bed. I too was an outdoors person, riding my bike 20-30 miles a day after school. My life started to have some sense of normalcy when I started getting lidocaine infusions. This illness has totally changed my life and I too was determined not to give up and let this illness rule me. I think this past year I finally had to accept that in order to have any quality of life I needed to accept that my life has changed and it may be for good. I decided that we would take a chance financially by going to part time teaching so I could do aquatic therapy and still have some energy to get together with friends. I was always too afraid to make plans because I never knew how I would feel. I feel like now that I have stopped looking for a magic cure of different diagnosis I spend less time on doctors and more time on "living" what is left of my life.
There is no support group around here and not having anyone understand this has been the hardest. I have been blessed with a supportive husband and children who may not understand but love me in spite of what I can't do when I travel to visit them.
I have been in the pits of despair and hopelessness and back again. Bedridden and completely unproductive. Unable to do anything but get up. Eat a little something and go back to bed.
Eeeh Gads that sounds so heavy! I didn't intend it that way. I wanted to reply to your post and let you know that there is every reason to have hope you'll get better. Maybe not as fast as you'd like and maybe not to the degree you can return to superathleticculturevulture status but certainly to a life of meaning and contribution.
When I was feeling most hopeless I would ask my friend/doctor "am I ever going to feel better" and he would always encourage me and hold out hope for my recovery. Always after these conversations I would improve a degree. And so I think it is important to have people around us who can remind us to have hope.
In addition to hope I wanted to share my experience of getting and feeling much better.
I've been dealing with CFS since 1998 and while I know you've had lots of suggestions and referrals I'll just quickly mention seems to work for me.
1) zilcho stress. I've eliminated as much business, financial and emotional stress as possible and it's helped a great deal.
2) Diet. I'm religous about eating well. What that means for you you'll have to work out with your healing advisors. For me it's zero sugar or processed foods. Mostly fresh meats and veggies. And no blood sugar stress, frequent meals.
3) Clymer Healing Center. I have been working with them for over a year and they have put me over the fence from existing to having a full life. I take their saliva tests via mail and consult with a Dr. Neville and take a small regimen of natural supplements that make me feel good.
I'm really grateful for my life today i've come so far and healed so much. I was bed-ridden for a year and in a mental fog for several. unable to work.
Now most days are heavenly! What most people would consider a morbidly mundane day for me is a triumph, a joy and a reason for celebration. I work 7 HOURS a day!! Unbelievable! Inconceivable! 7 continous hours without having to lay on the floor once!
Some days I work 7 hours and THEN I GO TO THE MOVIES!!!! Or a PLAY!!! JOY!!!
I feel relatively vital and can think clearly. I work 10am-5pm M-F and by the end of this year I should be making a decent living again.
I have tasted the sweet, forbidden fruit of full nights sound sleep. And although fickle and fleeting it is seems more likely than ever in the past 8 years.
This disease has forced me to make hard decisions for myself. To create work that serves and supports me (the me with CFS not the me I remember).
Did I say I think clearly, oh well, all good things must come to an end. I'm starting to fog up here, my life is good but after all I am a dude with CFS and that has its limits.
Wishing you health and happiness,
Colin
Thank you for sharing your thoughts and feelings with us, Kristy. I found your blog through the CFIDS Chronicle newsletter. I've had CFIDS for 14 years, and am now 29. I'm too wiped out to write much now, but I will be back to read more of your blog and would be interested in a chat room.
Thanks for sharing, and thanks for putting your story on the CFIDS newsletter. I have it, too, and I'm 38 and from Missouri. The key for me is to "live within my envelope." I can do things, but when I get tired I have to sit down, otherwise my symptoms will get worse.
I would love to do a chat group. I tried just now to access it but it didn't work. Have other people had luck?
Lela, Pennsylvania, mother of one 3 year old boy
Never been on a Blog site before. But this is great. I am stricken with what I beleive is CFS. I have not been diagnosed with it yet. Lupus& PMR are what they say I have. Going to Stanford next month and hope to get it clearly diagnosed.
I relate to the isolation and loneliness as I am no longer the active RN I used to be. I miss my life.
Family is very loving and supportive but am losing touch with the outside world. Hard to stay connected when you feel like crap..
I have done some volunteer work with the elderly- It really was therapeutic to give to someone else even though I felt so bad myself.
Wish you all well. Will be back often.
Dear One,
Please go to my blog and read, read, read. My story begins in 1998 with migraine headaches 24 hours 7 days a week. And then after a time of stablization, Sept. of 2005 hit with mild narcolepsy and then Sept. of 2006 with ulcers in my mouth, on my tongue, in my nose and outside my mouth on my face, open sores at first the size of dimes. Sores were swabbed, no infection, since I have allergies we believe that I am reacting to something. But what? I've gone off the two newest medications, and it still has not left. And I am homebound. Please come visit my blog and sign my guestbook. Thanks so much~~(c)†Beauty†
I would love to have a chat group to interact with. I'm a very frustrated CFS sufferer - at least I think it is CFS. Everything seems to fit, and my psychiatrist even believes CFS is what I suffer from. Unfortunately, my primary care doctor refused to flat out state that CFS exists, much less that I have it.
At 47, I've had this for the last six years, starting right after a really nasty breakout of Herpes zoster that left me in pain for about six months. I haven't been the same since. Some days I'm bedridden. Getting up to take a shower sends me right back to the bed in exhaustion. Other days, I do pretty well. I'm fortunate that I can work part time, but work and sleep seem to be the majority of what I do these days.
It is so helpful to hear other's stories and know that, even without an absolute diagnosis, I am not alone in this fight.
Hi Christina. I just found your blog through the e-newsletter. Thanks so much--I am so glad you posted it! :-) When I read it I was amazed because many things you wrote were as if you were telling me about my life!I have CFIDS, fibromyalgia and Multiple Chemical Sensitivities. I have had all three since 1991, at age 21, after having a severe case of Chicken Pox! I have been basically confined to my home for the past two years after being rear ended by a work truck which did not stop at a red light severely exacerbated my earler symptoms.That car accident ended my 10 year teaching career, my ability to support and take care of myself, and many hopes and dreams that I had for my life. However, at least I still have a life! My dad's friend came down with Chicken Pox at age 39, around the same time I did, and died from complications. And one of my friend's sisters was killed in a car wreck from a teenager who was racing about 6 months before my accident occurred. He says he is sure she would have loved to trade places with me! Anyway, before I came down with Chicken Pox,which resulted in CFS/FM/MCS I had been a serious overachiever since 5th grade and was in college barely eating and sleeping, pulling all nighters so I could keep my perfect GPA. I lived with my parents in a highly stressful situation and was in a toxic relationship trying to save someone from himself. With God's help I got out of the toxic relationship, only to get sick within a few months time.I spent about 6 months in bed after Chicken Pox and began my trip from dr. to dr. for the next 7 years before I finally got a diagnosis!!! I thought I was dying from something, but as typical drs said "you look fine", "you're too young to be sick", "you are just depressed", etc. By the time I got the diagnosis I had taught for 5 years--just teaching, resting at lunch time, no social life, and sleep after work. I had to be off work over 2 months at age 28, during which I saw a dr. from Whitaker Wellness Institute. I got so much better and regained much of my health after finding out about my food allergies, low thyroid, beginning Methylcobalomin B12 injections, vitamins/minerals/supplements, and IV vitamin drips. Did well for 3-4 years. Fibro went into remission over a year (I thought I had gotten over it)....Then the car accident. I struggled over a year to keep my job and hold on but my body rebelled. I have become one of the people I used to read about who can barely leave the house--and when I do, it sets me back for at least a week. I have spent 10s of thousands of dollars trying to recover again, but now without my old income and with only disability income I have no more money to try to chase the best doctors and treatments, and am personally tired of being a guinea pig. I am ending my long letter to you advising you to REALLY RESEARCH any treatment you get yourself into. When I first got a diagnosis I would have eaten cow poop like another reader said if someone told me it would bring relief so I could keep working---but some treatments cost so much money and may even be dangerous for you! Many supplements like Feverfew, NADH, Magnesium/Malic Aid that I get from immunesupport.com (they have a newsletter, too) and e-tyh.com help make life more bearable for me.They may or may not help you--and if at all possible only take the supplements under the care of a knowledgeable physician and only add one new item at a time. I highly recommend those web sites because the are channelled specifically for the CFIDS/Fibro. group. Please post another blog soon and I will write again later since this is already so lengthy!You are in my thoughts and prayers!
Well written article.
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