Teaching with CFS

hiya - i find it all very confusing myself...Ive just found out I have adrenal fatigue and aleady have fibromyalgia, not officially diagnosed with CFS yet, but I get the crushing fatigue...Like today. I still work, somehow, 4 days a week and have two little ones to look after also...slowly its taking its toll on me, there will be a time when I need to give up and just raise my children.

Im on a host of meds and supplments and have had this 11 months now, its fluctuated, I have been well for a couple of months and as soon as I went back to work after sick leave I went downhill again. One day I feel not too bad another like death, its very topsy turvy...Im finding that adrenal fatigue is a lot to do with it, if you havent already been tested for this, get them to test your hormone levels.

I am interested to know, did the mayo clinic suggest Graded exercise? I never felt better after the summer when i was able to walk a bit more.

Im here to talk, i may not have exactly as you but I do know about chronic mysterious illness Hopefully you will get some more answers soon

xxx

Im in UK so don't know what the mayo clinic is.

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Diagnosed with Fibromyalgia in March and now looking for friends to help me in my fibro journey :o)

Hi kbarry,

I just came across your post and first of all, I'm so sorry that you are having to deal with this illness. I would not wish it on anyone. How have you been doing since your last post?

I felt compelled to respond since your experience has been so similar to mine. I was a fifth grade teacher, got a virus (when I was about your age), fought through it and continued to teach (Like many of us, I was raised to just "push through" when things get tough). However, a couple months into my second year of teaching, I had pushed too long and too hard and my body just broke down and I had to quit. It was very difficult.

I got the same responses from many doctors (it's all in your head, you are just depressed, etc) before getting diagnosed with CFS. That was many years ago. Since then, I remain fairly bed-ridden and sick. I don't tell you this to discourage you but, instead, I want to share with you what I have learned and what I wish someone had told me years ago when I first became ill.

The good news is that you are still early into the illness and your chances, statistically, of getting better/learning to cope, are much better than someone like me, who has had the illness for a long time.

The first thing that I wish someone would have told me was that exercise is a doubled-edged sword. Unless your physical therapist specializes in CFS, many of the strategies he/she uses may not work for you (if they do, that is great!). I was very physically active in sports before getting ill. And again, in sports, you are supposed to push through the pain and tiredness in order to get stronger. However with CFS, it is the opposite. You need to learn how much exercise you can do and start really slow (I started at 10 seconds a day), even if it seems absurd to do so little. It is better to start up slow and inch your way up then to continually overshoot and do too much. If you do too much, you will crash (and then recover and do too much and crash again, etc) You have to be the one to figure out how much you can do, not anyone else. It will fly in the face of conventional wisdom about exercising. The goal is not to keep pushing yourself to do more. It is to find the amount and type of exercise that will allow you to exercise without crashing. You have probably heard of "Post Exertional Malaise" by now. If not, please look it up as it is one of the defining symptoms of CFS.

Another thing I wish I would have done was to just stop everything (if it were possible) and take care of my body. This is so hard for a workaholic (add an A-type personality, perfectionist in my case). CFS is all about learning to pace yourself and avoiding crashes as much as possible. Your body needs you to listen to it, not to social conventions. This is so much easier said than done. If I could do it again, I would have given myself a good amount of time off from everything. We tend to do as much as we can but with CFS, that is often too much and results in a crash cycle (or a long term crash). If I could go back in time, I would take a year off of everything, build/keep a small but close network of friends/family around me, explained to them what CFS is and what my limitations are and what I needed to do. It seems counterintuitive but I would allow myself to be sick without the constant pressure to do more or get better. I would be gentle with myself and learn what I could about CFS and slowly and gently incorporate things into my life that help me rest, pace myself, and hopefully, eventually either recover or get to a place when I can function within the illness.

I didn't do this and kept frantically pressuring myself to figure out how to do more or get well. And maybe this would not have helped me, but I feel like it would have given my body a better chance at healing if I had not done these things. As it is, I continued to do as much as possible and spent years in the push and crash cycle until my body was unable to recover. Now I concentrate on management--doing what I can to get a good sleep, to get enough rest, to cope with pain and to do what I can. I have been forced to stop almost everything. If I had just done this from the beginning, I wonder how my prognosis would be different now.

One more thing. Cognitive behavioural Therapy is a great way to learn to help cope with the illness (especially if your therapist is familiar with CFS) but it is not a cure (this is in my opinion and based on my experience and what I have read). It can help you deal with an illness that can cause many losses in your life and that is very isolating. I think that it helps people with CFS more than others because CFS has some unique aspects to it (including social stigma) but CBT is just a way to help cope--it would help people with other illness cope also. It is not exclusive to CFS. I mention this because doctors sometimes look at the research summaries and assume CBT is an answer to CFS and it is not.

Wow, this all sounds depressing! But it isn't! You are still so early into the illness and there is so much more info and support available now. And as for me, I don't give up hoping! There is so much research being done to figure out CFS. I have found a way to enjoy life and enjoy my family despite the limitations that CFS has on me. And I'm hoping that my experience can help someone avoid some of the pitfalls that I fell into. I wish you all the best!