Ouch! I feel that. I want to tell you that everything will be OK, but we all know it's a struggle. You have identified a need for more support. So, that seems like a good place to start. You're here, so that's a beginning to getting more support. You may have to ask people around you for more help and support than they have been used to giving you. I know how hard that is to be vulnerable and "needy," but wow, things sure do change when you aren't well. Go ahead and cry it out, but then sit up straight and remember that you are not alone. It's not a sprint, but a marathon, but we'll run beside you and stay with you. Someday, we will be victorious. I don't know how or when, but I hold out hope for that day. Love and blessings.

I gave up on the idea of total remission a long time ago. Instead I've focused on the idea that any ground I regain is a big improvement in my life.

So far that's working. I can do more physically than I could years ago, and some of my physical strength is back. But there are still major disabilities, don't want to spread false hope.

I do a lot of gardening now, and raise a substantial part of my food that way. That really helps me live on my very limited income from Social Security. I also believe it helps my general state of health.

I encourage everyone with our illness to fight back. Physical inactivity is very dangerous from a medical standpoint, so whatever exercise you can manage is important. For some unknown reason, we tolerate strength training much better than "cardio" aka "aerobics".

Keep a journal, and it will help you see which things help you and which hurt you. But don't look at the short term, always look for trends over a longer period of time. I get a lot of discomfort after exercise, but I recover.

What's helped me more than anything else is the realization that lying around feeling sorry for myself does me no good whatsoever. You can't rest your way out of this...we're not suffering from exhaustion. Prolonged inactivity only makes us weaker.

These are harsh words, I know. But we need to be tough to deal with this, not gentle. It steals your life, and you need to fight back any way you can.

Oh featherjack! So sorry you are in such a scary place. Re-read what triunfadora and Richie have said. They are both so true.
YOU HAVE NOTHING TO BE ASHAMED OF. Would yo be ashamed if you had broken legs, or cancer, or diabetes, or whatever???? Beating yourself up and shaming yourself for this lousy illness only adds insult to injury - you are already suffering enough. Your body is putting up a big fight to come to terms with this affliction, so try to be kind to yourself, your body,,,, It is not your fault. No one brings this on themselves for any reason. I agree with triunfadora that you must begin to reach out to the people in your world and ask for support. When I am in the pit of fatigue and am bedbound, I send out emails (takes less energy than calling everyone) and I tell friends what's going on. Then I ask if they can pick up a few things for me when they go to the store and I also ask for visits because being alone too much is too isolating. We are not raised in our culture to do this, but we just have to overcome our discomfort with it and ask for help. Most of the time, people just done't realize how incapacitated we are and/or they forget or don't know how lonely it is to be ill for a long period of time. Once I reach out, then people will often think to call me when they are out and ask if I need things. It's just a bit like greasing a wheel. IF we remain silent and don't let people know we need help, we won't get it.
Also as Richie said, try to do some strength training. Start very slowly. And do a bit of walking. Both of these things are good for CFS/SEID as well as depression. I don't know if you have place to garden at all or not, but just digging in the soil, pulling weeds would be great as there are anti-depressant microbes in the soil that we absorb through the skin and inhale. So, if you live in an area where the soil is not covered in snow right now, I'd say do a little of that. IF you cannot lean over or stand, then lie down on your side and pull weeds or dig around.... Most of all, don't give up. This illness is a drag, but it does change and have it's ups and downs. Just be sure you are getting the support you need from your healthcare/psyciatric helpers for your bi-polar condition. Listen to some soothing or upbeat music, do some you tube meditations for relaxation/depression, etc... IF your support people are far away and cannot help you, does your MD's office have some referrals for support groups in your area for CFS/SEID or for mood disorders? ARE you affiliated with a church or other spiritual organization? IF so, now is the time to ask them for help. People WANT to help other people. Some people LIVE to help other people, you just have to find them and give them a chance. You must allow yourself to receive help and let go of the notion that it is bad to accept others gifts to you, that you don't deserve it, etc... That is all non-sense. WE are put here on this earth to be connected to one another and helping each other is part of that process. I send you good wishes and agree that you should just let yourself have a good cry and then get on with taking care of the things that might help you. Good luck and please let us know how you are doing. There is great support here at DS. KInd hugs to you....

Thank you, everyone! Today is better, and I like to say "Better may not be great, but it is better."

Later on Tuesday the 3rd, things suddenly got much worse in a hurry. I received a phone call advising that the IRS was filing a lawsuit against me. I believed that was true and it just drained me of all energy. BUT, before I was completely done, I talked to my H&R Block person, who told me that it was a scam, the IRS NEVER calls, they mail and then just take your property. I was drained for the rest of the day and all the next morning, but I'm giving myself points for TAKING ACTION about it instead just curling up in a ball.

Strength training, huh? Interesting... I wasn't going to go for anything aerobic. I do try to get outside for a walk as often as I can, even if it's just a 1/4 mile to Dunking Donuts and back. Better is better.

I live in Maine and we haven't seen the ground since Oct. -- and with the snow we've had this year we may not see it again until May. I just moved into this place and don't know if there's garden space. I know my apt. is on the NW corner, so that's a challenge.

When I still thought the "IRS" call was legit, I vented on Facebook and was astonished at how much support I received. I have few friends in the area, but they are sympathetic. None of them will pick something up for me if I need that; they're outside of town and won't willingly come in. That's OK; I'm usually good for one or two errands or appointments before I have to rest. And it was *great* to have so many people chime in for me.

Thanks folks. I hope you're having a pretty fine day.

Jack

Here's a link to my source for the notion that strength training is better for us than aerobics aka cardio...

https://www.youtube.com/watch?v=q_cnva7zyKM

Thanks RichieD! I'll give it my complete attention when I and my internet connection both feel better...

OMG you're in Maine? You'll need to buy a potted plant as it will be a while before you see compost!
Glad you are having a better time right now. WE all get it. Better doesn't mean cured, it just means not as bad and climbing! But that is a good.
And yes, how great that you took action. Sometimes we just need to fall apart for a bit before we can "sit up" (as triunfadora said) and figure out what we can do for ourselves. Problem solving skills come in very handy with this illness!
Good luck and hang in there. Glad to hear you can get out and do a few things daily. Wonderful!

Thanks 2097Marie. I appreciate the backup. :-)

I hope everyone is having a good day...