I think that the best way to start this blog might be to say what it isn’t. It isn’t a resource for the latest medical treatments, for explanations or announcements of research, or even a solid definition of the condition itself. There are many sites that do that better than I ever could.
What is it then? I hope it will become a way for me to share some of my version of the hidden life I live due to what is commonly called Chronic Fatigue Syndrome. It’s also often written as ME/CFS, CFS, or CFIDS. For the sake of continuity and brevity, I’ll refer to it throughout this blog as CFS.
I’m not here to argue which name is best. Frankly, after all these years with it, I do my best to dissociate myself from the debate. It would be nice, though, if someday I could feel less upset when I do have to name what I have. That would come with a name that doesn’t trivialize that with which I live.
I remind myself that not so long ago, Multiple Sclerosis was called hysterical paralysis and patients were told their own inadequacies were the core of their disease. Medical history is long with blame-the-patient-if-you-don’t-understand-it chapters. It doesn’t help much so I try not to think names any more than I have to. I want to remain as much in a place of peace as I can – especially since my body is anything but peaceful.
I think it’s also important to say at the outset that if you are someone who is newly ill with this, please don’t assume you’re going to be walking in my shoes 20+ years from now. Odds are with you that your condition will improve over time. It’s a smaller group that ends up like me. So please, don’t let anything I write cause you panic or despair!
Should anyone reading this blog find something useful in it, it’s because I got out of God’s way for a change. If I’ve used my words poorly, the fault is entirely mine.
So, bottom line, what is this about? It’s about the things I encounter while living what most of us with CFS live – a hidden life.
Hi,
I wanted to check out your about page and it is very well said! I am wondering about your age after seeing what you wrote about someone not ending up like you in 20 years. I guess I thought you were in your twenties and maybe that isn’t something you want the WWW to know. I’m in my forties, so I was just wondering if we are close in age.
Your blog is inspiring to me.
Keep on passing it on…
dogkisses.
Thank you for the compliment! I’m glad you think I did a good job on that, I tend to just ramble on and then edit 20 times
I’m a bit older than you, though certainly none the wiser for it hehe.
My hope in starting this blog was to share a little of what keeps me going. What I didn’t realize, was that I’d get back far more than I give. May your nights be peaceful and your days filled with small treasures.
Hi,
Your welcome and thanks for the well wishes. I definitely need some peace and a few treasures of the day.
I too get a great deal out of having a blog, which came as a surprise. It’s wonderful being able to write and then exchange ideas or feelings with other people who relate. I’m spoiled now about blogs. I think I’d rather read a blog than just about anything on a computer. I like very much reading something that feels real,in the moment and helps me to better understand and cope with my own trials and tribulations.
Oh, thank you so much for writing this! It’s difficult to find people in my life who can even begin to understand how this feels, no matter how hard they try. While I wouldn’t wish this on anyone else, it is comforting to know that there are others out there who “get it.”
May the Lord bless and keep you.
“May the Lord bless and keep you.”
I couldn’t ask for better….and may it also be yours.
Peace!
self-caring is not selfish…also, I recognize that even prior to cfs, there were some people in my life (and still are) who were never satisfied with what was given to them of my time, emotions and so on. Funny, how they were and are empty wells themselves, offering nothing, but their expectations of me were relentless. I have learned that “No” is a complete sentence. I’m speaking of my Mother. There is so much I could say on the topic. When I got sick, it wasn’t fair to her. It’s all about her. Well, it no longer is all about her. I had to repeatedly risk rejection, avoid guilt, and then deal with my own anger and almost rage at her selfishness. What I do and who I am is enough…..now, if I’d only truly believe that half the time, I’d alleviate a great deal of stress, self-loathing, anger and at times..despair. Great blog..so glad it was brought to my attention. I want to read all of your posts. Peace.
“self-caring is not selfish” Okay, you got me with your first line! Thank you Nancy. Sometimes I just need to have someone say it’s okay, even though I know it is not only okay, but necessary and right.
“also, I recognize that even prior to cfs, there were some people in my life (and still are) who were never satisfied with what was given to them of my time, emotions and so on. ” As I think about it, that’s true, too. Some people are not there yet – I can only hope and pray they will be given what they need to get there. Thank you for bringing out the idea that sometimes it has nothing to do with our illness, or even with us at all, it has to do with where the others are in their own development.
You’ve said so much in your comment that resonates with me and given me the beginnings of further insights into myself – thank you!
“What I do and who I am is enough…..now, if I’d only truly believe that half the time, I’d alleviate a great deal of stress, self-loathing, anger and at times..despair.” Oh boy, that’s my struggle too. I know these things, yet still get bogged down sometimes. Thank you for helping put things further into perspective for me!
Peace.
I’m sorry. I posted my comment on this post; however, it was in response to your post of people asking you to do more than you were capable of doing and initially saying yes to the second day of whatever activity you were engaging with them.
Peace.
“I have learned that “No” is a complete sentence.”
–just wanted to say thank you and what an awesome remark to have come across here.
I’m grateful to Nancy, too. I agree with you, it’s a fine line to remember and I do try to do just that when the situation warrants.
Benedictine values help me in many ways, and at such times even in not using more words than are needed. As you can see though, I have a long way to go in practicing that one
This touched me. I talked with friends recently about self-forgiveness. I think I must forgive my body at times. Then I can have some peace.
And I, too, need reminders about NO being a complete sentence. Thanks.
We remind each other
“Then I can have some peace.” I am learning that when I feel peace inside, even when it’s underneath lots of “but…”, I’m doing the right thing. It’s taken me decades to begin to see what it seems many other people understand all along, but I’ll take some progress over none at all.
Peace.
I came to ask for your prayers for my son and I.
Thank you my friend.
You have them!
Peace.
I just want to say thank you for your blog.
I recently discovered it and everytime i read one of your posts I always feel more relaxed and positive – I’ve had ‘me’ a year now and have been quite lucky with the severity, however I still face similar challenges and I find it so comforting when i see how you look at these and accept them.
I believe everything happens for a reason, and with getting this condition though there are many negatives, I’ve discovered a few positives and its taught me so much about myself.
Your words and those who have also posted on this site have brought comfort to me and it’s awful how such an illness can affect so many yet have so much controversy and confusion surrounding it.
thankyou
What a beautiful gift you left here, thank you.
You’ve brought out some good points that will help me and others, too. “I’ve had ‘me’ a year now and have been quite lucky with the severity, however I still face similar challenges…” something very important to remember, severity is not a contest. There is no such thing as an easy time with this disease, no matter the severity. I am so very sorry that you are ill. Please, never lose hope that your health will improve.
You said also “I believe everything happens for a reason, and with getting this condition though there are many negatives, I’ve discovered a few positives and its taught me so much about myself.” You’ve said so succintly something that is vital to living – to thriving and you’ve said it in a way for which I have never found better words.
I will remember your openness to learning about yourself in the midst of adversity when I am the stubborn child bemoaning her lot – thank you for this, too.
To know that anything I’ve done has brought someone some comfort…well, I am deeply blessed by your gift.
Peace.
Ah someone else that wants to avoid the aggression and infighting that comes with this tragic illness! It’s a pleasure to meet you.
I’ve been “trying” to get better for the past 18 years and it’s been making me crazy and sad. Yesterday I watched a video by Byron Katie, having read her book and she talks about being ill and that getting better is the docor’s business and God’s business. She suggests we worry about our own business and let the doctors and God get on with their own, so that’s what I’ve decided to do. I’m going to focus on my life, doing what’s right for me, what I enjoy and what makes me feel as well as possible and leave getting better to other people to sort out. I feel like I can focus on happiness and not this constant pursuit of health.
I look forward to reading your posts.
I’m glad we found each other’s sites
Thank you so much for your kindness in visiting and for leaving such lovely notes for me to find. It is very nice to share the experience not of giving up but of coming to terms with this alphabet life-changer. Someone shared with me the saying “God is God and I am not.” It reminds me of what your friend said to you.
You also said “I feel like I can focus on happiness and not this constant pursuit of health.” I get it, I really do. I’d really really like to be healthy (I’m sure we all would!) but I won’t give up the present day. Informed, yes – waiting to live, no.
I look forward to keeping up with your world, too
Peace.