Dear katy,

i completely relate to you, & have the same situation, i also try over and over again day after day to convince myself that I can get up and get moving. I also wish my heart and soul could feel lighter.

i really liked your saying that in the world we have to "be", but here in DS we are who we are.

Actually, we are here thankful to have you among us.
& i'm also thank ful to everyone here who gave us support, help & comfort.

best wishes for all.

I have a lot of moments like that but try to focus on the good ones. You can do it. There are therapies that can help. (I don't believe that CFS is caused by one pathogen, I think it's many in a domino effect along with toxins and hormone imbalances). Have you seen a naturopath or doctor of Chinese medicine?

My friend had long-term infections after surgery and took calendula and oatseed/straw oil and got better. I haven't tried it yet but I might.

Anyway, good luck! Hope you feel better soon!

Lisa

Awww ((big hugs))

I think crying is good - a release mechanism. Sometimes I feel so frustrated and angry... I can't cry! At the moment, I feel all over the place. The M.E./CFS is like a rollercoaster ride - sometimes you have the ups and sometimes the downs. We are here for both! We understand.

x

I hope you have someone to support you going through this. I am helping my 13 year old son dealing with this. I am his advocate and I hope you can be your own. I have to do my own research and fight the doctors who just want to blame it all on a psychological issue. Keep pushing and find a biochemist, nutritionist, and counselor who understand and can help you. There are professionals who can help and you can feel better!

I wish I could cry from the pain this illness has caused me... but I cannot. I still can not accept that my life is over and will never get better. That right now right here is the best it will ever be, in pain and fatigued... but for the sake of my mental health I do need to accept this.

I would just like to say that I have been living with the limitations of CFS or ME or XMRV or whatever they are calling it this month for more than 35 years, since I was 23 years old. I spent almost the first half of that time expending a great deal of energy in fighting against the illness and mourning the idea that my life, as I knew it or dreamt it was gone and would never return as it was.

18 years ago, when I was 40, my daughter was born. She was a surprise. She was also born a natural healer. No, she did not cure me. But something about that child made me realize that it was time to stop fighting to be back to "normal." My life had changed. It was different and always would be. But it was not over. I am not saying it has been easy, or even always is easy. I am challenged by those limitations every day. I don't really know how to express this but in some odd way I have learned to make peace with it most of the time.

Oh, I miss the life I had wanted and if I could wake up tomorrow cured I would jump at the chance to be the "real" me again. But in the mean time I have found a way to live most days in a positive manner knowing that this is the hand I was dealt in life and I am working hard to make the best of that. And it could have been worse. It is a struggle to do that every day, but for me, it is not as draining a struggle as it was constantly fighting the idea of having this illness. That has just been my experience. Perhaps I wanted others to know that it may never really get better but it doesn't have to get the best of you. And you can lead a fulfilling and meaningful and happy life even with this burden.

I hope I don't sound preachy. I just got tired of feeling the loss and knew I had to go on. That was just my experience.

By the way, it is interesting that until the 1950s MS, another retrovirus illness, was considered a psychiatric disorder? I don't remember what they called it. Hysterical something, of course.

I am wishing all the very best for all my fellow strugglers.

I watched the video three or four times. And that part you mentioned, of the animation of the retrovirus attaching itself to our DNA was kind of a hard hit, wasn't it?

I think we are all so hopeful that we will just wake up one day and this nightmare will be gone...or at least lessened.

As unfortunate as it is that those of us who suffer from CFS had to have that reality check....I do believe that CFS is now going to become something to be recognized and dealt with, whether the government wants it, or not! Mentioning that the blood supply could be contaminated probably scared the poo outta everybody and many people will question their doctors now....and the words CFS will no longer mean a ticket to the shrinks office!!

Some good will come of this.....and possibly we will get some help!!

Never give up hope!!!

ditto

They used to call multiple sclerosis "hysterical paralysis"...also "faker's disease". The shrinks had all sorts of "therapy" they would inflict on people in wheelchairs in attempts to get them to walk normally.

Yes, Hysterical Paralysis - that's it. Thanks! Just goes to show you that we are still in the infancy of medical diagnosis and care.

Hi all, I agree with all your comments. I was watching and watching Dr Oz on that day, and somehow missed the section of animation. Does anyone have the utube url? Anyway, I just got off the phone with a friend from church. I was telling her about my doctor appt today. This year is the first year, except when I had the drug reactions and feet injury, in 2003 that I felt so bad, but (am trying to use positive thoughts, as they become chemicals too, so lets not forget that, ), anyway, I said I have never officially been told my diagnosis, and she said you have a severe case of cfids plus fibro, plus you are very complex as you have so many medical adverse reactions and on top of that, you have had a tough year. I had never met her before, and she was very nice, but said they were only just learning what cfs is and how to treat it. I told the church member that I want peace, Gods peace, but I also want either health restored, or I want the doctors to give me medicine to make me feel better. They CAN DO THAT. I would rather have 50 yrs of a good life than 80 yrs sick. Now God may have other plans but that is my honest wish. One of the worse is my feet. But I have to say, hearing all of you, I do not want you to suffer , not a single one of you. But thank you for your honesty, as I told this church friend, you have helped me by having me not feel so alone. The doctors should read and see how many of us there are and realize that they can give a quality of life. The fatigue actually causes so much of the pain I think all the way from the cells. I feel, yes , treat naturally any causes at the cellular level, viruses, and toxins, and add energy boosters to help ADP and ATP. Correct anemia and any hormonal imbalances and Vit D levels. But once those are all fixed, treat the symptoms. If someone has MS, or cancer, and they have treated the disease, and the person is still in pain, and/or has severe fatigue, they treat the pain and fatigue. There is hope, with spiritual healing, emotional, and then physical with a naturopath, and providers that are experts in fibro and cfids, to treat for comfort, as for myself, I need to feel well enough to be out in the community helping. I also am alone, and feel SO MUCH BETTER IF SOMEONE IS WITH ME. Hugs to all, Raindrop

Katy I relate so much to your description of convincing yourself that you can get up and get moving. I've been doing that for 13 years.

And, yes, I have a lot to be thankful for but the fatigue makes it difficult to see anything in a positive light.

I cry about a lot of things and it is cathartic. (Every now and then my brain comes up with a fancy word ;-)

It is good to have a place where everybody knows your illness.

I get up in the morning because my Golden retriever can be still just so long. She wakes me up with doggy kisses and much tail wagging. For that I am truly grateful.

Hugs
Vicki

I am constantly amazed by the postings here. I don't know how many times I have read a posting and just sighed. It is sort of a sigh of relief, of happiness, of sadness, of togetherness somehow. I just inwardly shake my head in amazement, and think " yeah me too!" Thanks for sharing your tears with us Katy - my tears are often close to the surface too, and sometimes they just spill out. I don't really know why I try and hold them back - social conditioning I suppose - because it feels good sometimes to just cry. And you are so right - how wonderful this site is to share our struggles (without being accused of wallowing in self pity!) . And yes, I know I have so much to be grateful for - a roof over my head and food to eat, for example, but sometimes..........

Hang in there
d