I'm very fortunate to have alot of support (doctor, physio,work colleagues, friends) re my CFS.........but my greatest disbeliever seems to be me!
The old adage of 'when I'm well, I'm cured & when I crash, I'm not' seems to be biggest weakness.
On top of that though, is my new theory/practice........I seem to be able to push through ANYTHING if I HAVE to, but as soon as I don't HAVE to, it's like I give myself up to crashing!
Anyone else experience this......or is it just all in MY head??
I'm in a similar situation. I've been coping with CFS for so long, and have been so worried about employment, that it's perfectly natural now to make it through work by sheer determination, but as soon as I get home, collapse. My wife says i intentionally reserve all my productivity for work and simply have nothing left for home, and she's probably right. This has become habit as I have no memory of a balanced life. I just read your post today, and it resonated with me. Sounds to me like you're coping too. I pick a few things that are real important, and push through them. They'll make you feel normal. my 2 cents. good luck.
Fatigue caused by physical factors improves with rest. Psychological fatigue does not. It is common for people with physically caused fatigue to be able to push themselves through what they have to do, then collapse and be unable to get through what they want to do. The key to balance is trying to reduce the things you HAVE to do, so you can have a little energy to do what you WANT to do. That may mean cutting back on work hours, intensity, simplifying your lifestyle with a smaller house, smaller yard, lower expectations, etc. When you have chronic fatigue, you truly lose track of what normal energy feels like. If your energy level fluctuates a lot from day to day, you may tend to overdo it on good days, only to pay dearly for it the next. Pacing yourself and alternating activities with rest periods is essential.
Thanks for taking the time & energy to reply, Newbie.....just sorry for not responding sooner but I have had my brother visiting me (in NZ) from Sydney, so my world's been upside down for a bit.
I'm almost tempted to pull that post I wrote though, as in the last coupla weeks, I have been so ill, I'm now pretty convinced it ain't in my head at all.....yay!
What's in my head is more like you say, the determination to push through when needs must. But I've now come to the conclusion that my health actually needs to come first and part of that formula involves pre-empting potential crashing.
It's taken me a longggggg time to accept & act on that premise, but I think I've finally learned my lesson!
I feel your situation though is more dire in that you're the bread-winner and under alot more pressure to carry on.......but I worry that it'll all catch up to you eventually and then you'll be no good for nothing!
If your wife is supportive of your condition & situation, could you maybe reduce to part-time and she maybe gets herself some part-time work? You could also maybe impress upon her, that that way you'll have more time & energy for her (& family?) and your lives will be more in balance?
I feel your pain.....& wish you the best,
Thanks heaps for your advice, Ladybug! I hear everything you're saying, I just need to get better at putting it into practice!
Since writing that post, though, I've been so ill, I'm convinced it's not in my head......and am now trying to pre-empt potential crashes by curbing my enthusiasm to carry on when I'm feeling ok.
It's all such a huge learning curve though.......
What is your situation like......if you want to share?
Thanks again for taking the time & energy to respond,
The Following User Says Thank You to Clarry For This Useful Post: sickofcfs (12-13-2012)
Well, I have had systemic lupus for 30 years, rheumatoid arthritis for about 6, and severe spinal issues, with 3 lumbar surgeries and a neck surgery. A multitude of other things as well: hypothyroidism, hypoglycemia, high blood pressure, tachycardia, sleep apnea, can't maintain my oxygen levels very well, GERD, and the chronic fatigue that goes with all of this. I am in pain all the time and fatgued all the time, but the levels of both fluctuate and are unpredictable. In spite of all this, I am very fortunate to have a wonderful husband, lovely home, good adult kids, good friends, and I try hard to maintain a positive otlook, do what I can within my limitations, and try to live life as normally as I can. I always try to have something to look forward to, and I try to help others, which makes me feel good. I feel best mentally when I am being productive, but my physical comfort zone is the couch covered with a blanket, where I do much of my computer work, reading, phone calls, etc. I have to force myself to get up and move, because the pain and stiffness makesit difficult. So my challenge is to get enough movement and exercise during the day, and alternate active periods with rest periods. I love being outdoors and love to walk, garden, travel, go on easy hikes, trips to mtns., and try to challenge myself mentally as brain fog is a big issue for me. I try to do creative things with decorating, food prep and presentation, and like to fix things that are broken and restore things that have been neglected and make them shine again. As a confession, in spite of knowing better, when I have a good day, I still overdo, trying to make up for lost time, then get myself so exhausted I have a meltdown in tears. I am a type A person living in a type D body and it makes me nuts sometimes! My mind writes checks my body cannot cash, so I have big plans but poor execution sometimes. I keep striving toward pacing myself, having realistic expectations, remembering I am now 63, not 25, and accepting my limitations as part of my life now. I have learned to prioritize and not try to do it all. I have given up being a Martha Stewart #2, and give myself credit for what I do get done. One of my goals is to help people on this board, particularly with undiagnosed chronic illness, as I lived with my mystery illness for ten years before diagnosis and know how awful that is. I got a little verbose, but thanks for asking about my situation!