Chronic Fatigue Syndrome Crashes And Climbing Back Up

I have been in remission since 1983 and after haveing massive dose of immunoglobulin as part of Rabies treatment after being bitten by raccoon I am now in full blown relapse. It did not take a doctor to confirm it. I began having trigger point pain. It would be different every day. I finally went to doctor when it got to where I could not get my legs to work so I could get off bed. I have to awake three hours before I have to be at work at a busy hospital . Being alone in world I have to work three jobs to pay bills and now I am looking at medical bills which means finding another job. I got through this in the 80's by stretching, walking, diet and later into recovery with aerobic dance. I am 28 years older now but I know I will beat it the same way. I have and I encourage everyone with this to have a ,"I am the boss of my body and you
will not get me!" attitude. Don't ever let the pain keep you from moving. Each morning it gets easier to move with the longer I am up and moving.

Jody,

So sorry to read about your relapse; but so in awe that you are conserving strength, deliberately working your way through step by step, and continuing to write.

I know that on many days the "deliberate" part must be the most difficult of all. And I'm very glad that you have learned the tools that get you past a crash and headed upward again.

We're learning from you even now, especially now. I echo Pat when I say, thank you for the effort it took to write. And best wishes for the days to come.

Diane

Jody--
I forget how I feel "a soft landing"/"a kindred spirit"... that someone else out there LIVES it and gets it... when I read your work.

I am sorry to hear about your recent relapse. I hope you are on an upswing, girl!;)

Was it an October thing?!... I, myself, had a very "good" summer. Very active September. And. then. October. HALT. Halt some more. I rarely left home. I forgot the horror of isolation and constantly being leveled. Even holding a telephone receiver or trying to converse. It's just recently that I feel that I'm coming to, some.

I loved what you wrote, here:

If you're enjoying yourself but it's nappy time ... go to bed. Close your eyes. Put the world on hold. This is, paradoxically, how you will keep a hold on your world, and not have it slip through your flaccid or twitching fingers.

It is simple. But it isn't easy. Life is calling, and we long to answer. But we must delay our answer to its call, so that we can offer a better response. Later.

Oh, it's that simple. And that hard. I never allow myself to stop, as I wake up late, "behind"... and try to make up for years of lost time. I always say that if I didn't live alone, I could rest, with "creature comforts" nearby. I force myself to leave home when my body is screaming to lay down. Just to be IN the world, around humans, if in a store, cafe... Or get ANY daylight. But I must stop making excuses, even in the pain of loneliness, I suppose. As you say, so that I can respond (or show up!) better, later. Or maybe even consider (the dreaded) housing or roommate shares, down the line. (Years ago there was discussion of CFS co-housing homes, but I don't think many, if any got off the ground. I sort of love this idea!).

I know, CFS conference calls/commisserations/fun --from bed. On speaker!

Ok, I'm getting offtrack, big time. Thank you, thank you, as always! Your writing helps us help ourselves!

Sending love and healing!;)
Helene

I have developed small hobbies that allow me to rest and recover, but remain entertained. I knit simple afghans to give to charities for auction fundraisers. I pick a reality show or some other category and get the DVDs en masse from Netflix and knit while I watch. I look at picture books, that can be fun if you explore periods of art or interior decorating styles, fashions of the past, etc. It's hard to remember that I MUST rest if I want to recover, so the attitude that I am investing in future health helps some.

WoW. 10 years of this illness and I was floundering. Without a way of taking control of my recoveries, i was just waiting for things to get better, and the inevitable crashes, not thinking in any positive terms at all.
A lot of the cfs/me stuff on the internet is tinkly music and soft images, with deep and inspirational words. There is a place for these, but you can't look at them for long without feeling worse!
You are a breath of fresh air, u have given me a new way to view my illness and it's struggles. I have forwarded your blogs to all those i know in the same situation.
I hope that your relapse will soon be over, as I hope my own soon moves on!
Take good care of yourself, keep those inspirations coming, in your no nonsense and straight talking way.
Lots of the very best wishes,
Zarla

Hi Jody - I too am sorry to hear of your relapse, and appreciate the energy it took to write about it. You've been helpful to so many, and now must help yourself. Please take good care as you heal, and let us hear from you as you are able to talk to us. I know you will continue to be a mentor, guide, teacher and friend - and that as painful as your current experience is, it will also enable you to continue to help others in your wonderful, honest, straight-forward way. I wish you the best.
Talk with you soon,
Pat

Jody,

I'm sorry to hear about your relapse. Maybe less sunlight and increased molds in the air, (if you live where winter is wet)...

Identifying and dealing with only that which has the most value in your life is one of the wisdom gifts of illness. Your description of that process is great.

After reading through your articles and the links you've provided, I want to tell you that I think you are incredibly thorough, focused, and very readable. You encapsulate and integrate the big picture seamlessly with your own experiences. The fine details that may ultimately explain more than one illness and help hugely with treatment are also provided and very relevant.

The personalized package of medical information and strategies you've developed from your own experience could help many others. It's scientifically accurate and pretty far advanced from the average clinician's knowledge. I wish doctors would pay more attention to your perspective and body of knowledge.

I'm one of many people who suspect that a viral problem connects CFS, autism spectrum disorders in their families, nervous system and cognitive problems, mitochondrial, metabolic and immune dysfunction, as well as environmental toxins in people with these problems.

You've woven threads of experience and information into what is starting to look like a nearly complete tapestry for this group. I'm sending my contacts links to your page here because it is so very targeted on what we've been dealing with.

Our immune systems are elegant, amazing, and sensitive, kind of an invisible dynamic matrix that all other body systems must rely on and refer to for survival of the whole. Hopefully, medical care will start to recognize this and provide better guidelines and treatments.