Hi Luna

I think we all reach the place where you are at right now. You are still working part time. That is wonderful for you....unless it's sapping much needed energy and keeping you from having a more fulfilling life.

I know that before I was diagnosed, I was working full time, then as I got sicker I went to part time work. I had no idea why I couldn't keep up anymore...I was still undiagnosed and just kept pushing. I didn't realize that I was hurting myself.

After finally reaching a place where I became so ill, I went home from work one day feeling like absolute death, I finally chose to get to a doctor who could help me find out what was really wrong. Once I found out what I had, it amazed me, that I had not realized that something more serious was going on in my body than just "aging" and "stress". I had CFS, and all the pushing I was doing at work was pushing me to the end of my limits, and I finally collapsed.

I think, in my case....my working too hard and pushing was due to ignorance of this illness and how to manage it. I have quite a few friends with CFS who are able to work part time, as you do, and they do well with it. Some people eventually have to quit work entirely...which is what happened to me. I'm on disability now.

I didn't want to admit to myself that I was this sick. I didn't want to quit working, because it made me feel like a failure. In retrospect, I think that had I stopped pushing so hard to work and keep up with everybody else, I may not have collapsed and crashed as badly as I did. I really came down hard and there was no more working/walking/cooking......everything just stopped!

I say this to you to encourage you to evaluate if working is still the way for you to go. Disability is a wonderful thing. I don't know how I would make it financially without it. I know that working is necessary for us to eat!! So I totally understand why people as sick as we are, keep pushing. We need the money!! We need to live.

I hope that me telling you my experience will just give you pause for a moment. Sooner or later many of us with CFS have to come to that juncture of whether working is still the thing to do, if it's making us sicker and sicker. Disability IS available, but we don't want to think that we need it yet! We want to wait a little longer, push a little harder.....I get it! I did this myself

Praying that you can evaluate your absolute NEED to work, and maybe consider disability. SO much stress is relieved when you don't have to get up and punch a clock every day! I'm thankful I was able to get on SSD and would be happy to share with you who I used and how it got done so quickly.

Hi Luna,
Worrying about pushing too hard, is the story of my life! I had the further embarrassment of being a trained counselor and still couldn't pace myself not to crash. This illness is crazy making. Having said that, we are all on our own journey and have free will. We live in a culture that encourages burn out accomplishment. We also have developed years of high self expectations and there is always our inner critic saying, "you didn't get such and such done". I'm not big on advice, but I have an idea. See if every 2 weeks you can identify (maybe write down) something that you will drop doing (or change doing) to save energy. Over time, you might see a progression and you can applaud yourself for making decisions that are helping you push less hard. Thinking of you.

Hi Luna,

Eventually you reach the point where you realise that pushing is self-defeating and you accept this illness for what it is and deal with it accordingly. Like Darla, I too am on disability and feel liberated that I no longer need force myself to punch a clock. I can do what I can, as I can, but I feel no pressure. The inside of my house is a mess- lol - but to hell with it. I am busy tending my gardens now so it will just have to wait. I refuse to knock myself out over this crap.

Hey Luna

I'm probably in the same place you are. Working hard on accepting CFS and the changes it inmposes on my life, but I am still a fighter and need to find the balance between pacing and giving up.

So I still push myself way too hard .. getting better at slowing down but the learning comes slowly.

Bless you as your learning journey continues.

Try a change of perspective.

If you string too many things together it means a crash. Some things are a guaranteed crash. Some maybe will cause one. Even the little things can add up.

So make the decision each time. Is this worth a crash? Because sometimes it is and sometimes it isn't. If not having a job would make you miserable, then it may be worth the crash. If not working would be a relief, then you can begin trying to figure out how to let go.

It's the same for everything. From making dinner, to visiting a friend, to hanging up your coat. Is it worth the crash?

And then there is minimizing the damage. I have found that taking it easy before and after certain things can minimize or eliminate a crash.

I felt...ok feel...guilty leaving so much undone. I had a break through moment, which was also a moment of frustration, where I said something that you may find helpful.

I announced the following. Every day I shower and dress. When I'm up to it I do my own laundry. If I get past that I make food or plan on making it. Despite this it is very rare I eat 3 meals in 1 day. It is only when I'm doing very well that I consistently wear only clean clothes. Until those things happen, I will not do any other chore. For if I do it likely means I will have less to eat that day.

Damn did I get my prioities straight or what?

Now it is selfish, very selfish. I struggled with that. I didn't want to believe I was selfish. And then I felt bad for being so selfish. And then I realized that I need to be. Getting enough to eat every day is pretty basic. No one is going to do that for me. I can't be sacrificing my energy that should be put toward that. And if I do, then the energy I have will get smaller until it triggers a crash. If you think about it, it's not so selfish afterall.

It can help to think of what is most important, begining with basic needs. And then promise yourself if you get beyond that you can choose to do more.

My list is pretty simple. First is shower. If I don't shower I'm so miserable I wish I'd never gotten out of bed. I never did drink coffee....so a shower is like my coffee. Without it I'm a miserable mess.

Next on the list is to get out of the house to do something social at least every other week. I can skip if I'm crashing too hard. Even if they wear me out social stuff can give me a little boost. Without it I'm more likely to crash. I'm also more likely to focus on the parts of this illness that are really hard.

Then it's clothes and food. I just don't get beyond that.

I may push stuff aside for interacting with people or anything that makes me feel a little better. I remind myself that I don't need to be wearing myself out for stuff that doesn't make the list. Any exception has to well worth the crash.

Luna:

First of all, please don't be so hard on yourself. Dealing with this sh*tty disease is a roller coaster, at best. I constantly feel like I'm two steps behind in managing my symptoms, no matter how well I plan. Don't beat yourself up for struggling with a condition whose pathology and "comorbidity" has been compared to HIV/AIDS, Lupus, and MS.

Anyway, you're in good company. Many of us still push and crash, even when we know better. It's our natural struggle against the "half life" that CFS forces us to lead.

Every year, I look back at the previous 12 months and I mourn the things I have had to abandon -- friendships, promotions, vacations, sports, activities -- because I no longer have the energy, money, cognition, or wellness to do them. My identity has been connected to these things, as well as my confidence. Yours, too, I'll bet.

The mantra I have tried to develop over my 13 years with this horrific disease is that I no longer define myself through "doing" (activity and accomplishment) but through "being" -- acting in a way that is authentic, kind, and sincere, while enjoying the pleasures of the moment when I can.

This approach is, of course, much harder to do than it is to say: I'm expected to accomplish things at work, pay the bills, maintain my house, take care of my family, attend family functions, be a good spouse, friend, brother, etc, -- all while dealing with the crazy quilt of symptoms that tug at me no matter where I am or what I'm doing. So, I fall short of at least half of my obligations and expecatations every single day.

Of course, you can do better; we all can. But, today, chill out. You're much more capable than you think. :0)

I found an article on an -energy chart. chart the hours in the day to the energy levels that you might have. It really helped me out to know that although I have very little energy the chart shows when a better time to do something is.