OK, this is not what you want to hear. But I've had this illness for a very long time, and I'm telling you that your husband is right about exercising.

Admittedly it's the last thing on earth you want to do. The systems in your body that regulate how you feel are telling you to rest because you're sick. Well, they're lying to you...because they're broken and they're not working right.

I listened to that call to rest, and things just went downhill for me. Now I exercise every day and I regained a lot of my ability to deal with life. I'm still very sick, but at least I can cope with things without crashing all the time.

Keep a journal, this is critically important. Start slowly with low-stress exercises like modified sit-ups. Just do a few each day, spread them out if you think you can't handle too much. Keep track of how you're doing and after a few months you will see that you're handling things better...even if it's only a little better.

It won't be easy, in fact it will be very difficult and even painful at times. But it sure beats sitting around crying. We have to fight back.

I totally know how you feel. I have a husband and two kids. All that I have to do is clean the house a bit and cook, but that is pretty much all I manage to get done. I do think some moderate exercise is OK, but we have to increase it very slowly because any huge increase in activity could cause a crash. I like the term "movement for life" over "exercise" because it seems broader and it doesn't remind me of '80's workout videos :). But, here's the other problem, we can often become depressed due to this illness. The depression steals our motivation and our hope that someday we might improve. Cry all you need to. Every loss deserves it's appropriate season of grief. But, at the end of every good lament, there is a moment when it's quiet and you feel that you are not alone and that you are still loved. I hope you know you are loved, dear SpaceGirl. If you're not sure, ask some of us on DS and we'll tell you.

I have a different experience to Richie's. I was made to exercise and push myself. I have ended up practically bedridden for years. There is research now that says our muscles cannot heal as quickly as well people and that we have 20 times the normal amount of lactic acid in our muscles after exercise, so we need to be gentle with ourselves.

I think it is okay to listen to your body and do only what you feel is okay. If you do this you should gradually get more energy and be able to do more. I think that' is what is called pacing. I have been getting better since I have been doing this.

You don't have to rest all the time, just do a little, maybe very little, regularly - don't boom and bust with your energy. It has to be what you can manage. I think it's called finding a 'baseline'...a routine you can do everyday without negative consequences. You gradually extend your baseline as you feel better. it has to be slightly less than the maximum you can do every day. You have to havee energy left each day, and let that build.

You can look up about pacing and baselines with CFS and there will be more info.

It's natural to cry, infact the illness seems to make us more susceptible to it. Just be aware that crying too can drain energy so maybe also try and focus on other things and distract yourself sometimes too.

For me, a baseline provides structure and makes me feel less out of control and more like I am getting somewhere, even if very slowly.

Fitness people say that the only person you should compare yourself to...is yourself a few months ago. That's the way I started exercising, Lupin...just a very few things that I found I could tolerate without crashing. Then I very slowly added a little bit here and there.

What shocked me into exercising was the day I fell down in the grass alongside the carport and couldn't get up. I might have cried then, lying there feeling sorry for myself, I don't remember. But eventually I got onto my knees and slowly got up. I don't want to be that way ever again.

We can't exercise like other people, it is twenty times harder to recover. But we do recover...and if you exercise you will start to recover faster...at least I did. But this took years, not weeks. It's hard, very hard. But it's better than giving up.

Thank you all.....this is SO what I need to hear.

Thank you everyone.

I am really down because I do move a lot, but am still being told to exercise more. I take care of 12 chickens everyday, not a big deal but it still forces me to go out and water, feed, add straw to nesting boxes, gather eggs, ect everyday. I also try to clean the house and make dinner everyday. Seems I need to go up and down the stairs at least 3 times a day (laundry is in the basement.)

I'm just so down because just riding for an hour to my mothers for Thanksgiving and enjoying my family for one afternoon can leave me so wiped out for so long.

My husbands work has been reduced for most of this year and we are struggling with finances and that is really stressing me out. I am already cooking from scratch and we don't go out to eat because you never know what they put in that crap. But now I'm down to $150/mth for food & household needs (read toilet paper, soap, shampoo....)

Now this weekend, my daughter calls crying - saying she needs to come home. (18mths ago her SO's grandparents moved them & my grandbabies 1200 miles away - to help them thru tough times.) I don't know what to do. I cant drive down to bring her & the babies home. I don't have any money to send for her & the babies to travel so far. And it has been over 24 hours since I have heard anything from her, hubby says I have to let them work it out. It is just raising my anxiety levels way to high and I'm really not sure how to do this. I can't seem to get my mind off of what may be happening and trying to figure out how to help.

My mind keeps telling me I should be able to just buck up and fix this stuff. But my body just laughs at me and the Fibro Fog gets even worse...

I'm just so.... lost, frustrated, worried, sad, tired, cant think...

In my experience controlling stress levels is a critical factor in coping with this illness...in fact it seems most chronic illnesses are severely affected by high stress levels.

This is a real mess you're in, for sure. I've been down to this kind of level myself, and I know how bad it can be. Right now all you can do is try to deal with it as best you can. If there's any way to convince your family that you don't have any more to give, and the stress is tearing you down, that would be really helpful I'm sure.

In any case, you can't just soldier on and not make allowances for your illness...I just don't think that works.

I didn't realize how many stressors were in your life right now. At times like these all we can do is try to hold it together and make it through to quieter waters. This would not be a time to start a rehabilitative program of exercise, you need to somehow lower your stress levels before that would make sense.

You and your family need to understand at a deep level that you're very seriously ill. You can't just deny that and try to push through it...it sure didn't work for me, I'll say that.

When my doctors told me that my vitals were good so I could go exercise full tilt and not worry, I did just that and had an enormous crash that took years and years to recover from.

I still think a journal would be good so you can make a few notes about how your day went. Then you can develop a better feel for what you can tolerate and what you can't. I write in a small notebook every day, then review it every few months to see how I'm doing and see what's working for me. Otherwise everything is just a confusing, overwhelming mess all the time.

Thanks Richie. I appreciate you suggestions. I know stress is the worst thing for me, but it is so hard to deal with issues other people bring into my life.

I'm sorry I was being so whiney. I was just losing it, not knowing what was going on with my daughter & grandbabies. I finally called the grandparents this morning and was able to talk to my daughter. She said her and her SO are talking things out and everything is OK for now.

I am so relieved, I could actually feel the pressure release in my chest. Of course now I'm a little ticked that no one thought to let me know - all weekend long. But I guess I just need to learn to listen and not feel like I am responsible to fix their problems - not that I could any way.

Just wish I could find a way to be at peace with this messed up life and not automatically strive to keep the boat from rocking. Some old habits are hard to break. And now it really is impossible for me to do anything about anything.... guess I'm just along for the ride from here on out. God only knows how horrible that makes me feel.

Thanks for caring
{{{HUGZ}}} SpaceGirl

Hi SpaceGirl, I agree with what Richie is saying. Sounds like you are at your limit, or over, right now in terms of what you can do. Ideally, you would be able to do less and build it up slowly as working at your limit constantly makes it hard to improve, but it sounds like you have too much to do.

If there is any way to get more support, whether in terms of benefits or just practical help, so you can dial back the physical activity and find a level from which to build? Even if it's help with practical chores to take the pressure off.

It's so hard if family are not behind you on this. I've been through that. It's best when everyone understands and can support you both emotionally and physically to put your health first.

I think striving to keep the boat from rocking is perfectly normal with this illness. I think it's okay to want to keep things stable. Minimising stress is an important part of recovery but can be very difficult.

I really hope you can get the support of your family and that they can understand what you need right now. you just have to put your health first as much as possible and get as much support as you can. Sounds like it could be good to find a doctor that understands the condition too.

Here's my experience with CFS. I can only exercise when I am not sick with some kind of virus, etc... I've had this illness for over 25 yeaars and have learned that pushing when ill does not work. Once the viral or sick symptoms have cleared then I can begin to exercise (ie: move my body more). it could just being upand around the house, then progressing to a walk around the block, gentle yoga, and eventually actaul weights and full on walking. However, I am in a place now where I am recovering from a lung infection that refuses to leave and if I 'exercise', it comes racing back. So the answer is listen to your body. If you are simply low, low energy trying to do a little walking and full breath diaphragmatic breathing at the same time would be good. Just start with short distances and NEVER move about until you are tired. ALWAYS stop before you tire. May you be blessed with improvement, even if it's slow. Hang in!

My rheumy says you don't need to exercise like a gym workout or walking on a treadmill. He says just move.

It took me a long time to understand. Now, I walk the dog or go grocery shopping for exercise. For CFS/FM I am fortunate I am still able to work. Many days it is not pretty and I pay for it. I try to do what I can.

Just remember our exercise does not have to look like a Gym trainer's exercise routine....Just move as much as you can.

Hope today is better, and you are feeling more comfortable about things.
Wanted to say I would echo Maris with my answer. I find I can exercise (swimming) three days a week when I am otherwise we'll in a relative sense, but when I've been sick with a virus it can be weeks before I can do more than grocery shop. Then after a time I get a ride to swim, as driving there would wear me out too much. Then I can drive a bit more at a time until perhaps 6 weeks later I may be back to normal as it were. Also, I find I can get exactly the same experience if I have been under extreme or even just moderate but prolonged stress, without an illness. Neither is unavoidable, so all we can do is find a consistent plan to gently sustain ourselves through to where we can do more again. This might mean for you that your daily chores are your "more", or maybe you can find some gentle extra little things that help you, like stretching or meditation (guided, using cds is great).

The thing is that this illness has been defined and redefined and watered down, etc. There is actually a difference between Myalgic Encephelomyelitis, which was what the illness was originally called, and CFS. Now many call it ME/CFS, but like I said there are a bunch of definitions, and as a result, many of the studies done re what helps us have included people who do not even have ME or anything close to it. That is also why you will always get a bunch of different answers to the question of exercise.

In some who have the more watered down definition of CFS, exercise can help. In others who have the Canadian definition CCC, or the International Definition ICC, exercise can be extremely detrimental and many who have pushed to exercise have wound up a lot sicker and no, they do not always recover. (Google Canadian consensus criteria for me/cfs and international consensus criteria for me/cfs and you will see they are very different from the CDCs definition.)

If I were you, I'd check into these definitions and if you fit the CCC or the ICC, because if you do, you really need to be extra careful about exercise. If you have the CDC's defintion for CFS, then you may be able to get away with exercising some, and it may even help you. Even then, though, pay attention to what your body is telling you and pace yourself.

Excellent post Tammy

I do find that, too , that if I am not suffering with a virus, a 10-30 min. walk, not a march, seems to help me relax and raise the good hormone levels, and somewhat lessen the FM pain. And if I need to rest the remaining part of the day, I do. Isabelle1954