Great article for anyone who needs coping skills (and unlike CBT practitioners, we won't charge you for the info!)
http://www.healingwell.com/library/health/malik1.asp
6. Be realistic. You are not "superwoman" (or superman). There will be things you can and things you can't do.
There will always be people who will try to pressure you to do things that you know you can't (or shouldn't) do. Whether it's your spouse or your doctor, you need to stand up to them and say "I can't". It will not make them happy, but where your health is concerned, you have to be selfish -- if you push yourself to do something that will make your symptoms worse, it's you who pays the price, not them.
Early on in my journey with CFS, I allowed myself to be pressured to do something because someone else thought I should. I regretted it for months, until the worsened symptoms finally eased up.
Society has the idea that there is nothing that a disabled person can't do if they apply themselves. If you don't join the parade of those who run marathons to prove that they're as good as any healthy person, you can expect to face scorn from those who think you should be SuperCrip. But Dr. Cheney has made it clear that aerobic exercise is the worst thing you can do if you have CFS. Run a marathon to prove you can do what everyone else can, and you risk landing in bed permanently.
People who do not understand that CFS affects both your ability to perform manual labor and your ability to perform a desk job will call you lazy for not working; they've bought into the notion that every disabled person should be able to work if they can find the right job. Don't feel you need to work yourself to death to conform to their expectations -- the problem is their ignorance, not your laziness. If they don't understand that CFS is more than simple "fatigue", that it includes brain fog and paralytic muscle weakness from overuse, you can try to educate them, but you shouldn't let them bully you to do what you know you shouldn't.
12. Always reward yourself. Living with a chronic illness can be hard. You deserve a reward.
What I eat does not affect how I feel -- I'm not one of those who spirals downhill if I eat sugar. I decided long ago that if I feel like chocolate chip cookies for dinner, I will treat myself to chocolate chip cookies for dinner. The pain of deprivation is the one pain I can control. Would I eat cookies for dinner every night? No. But if I have a craving, my normal diet is healthy enough that I can afford to indulge myself once in a while as a reward for putting up with chronic pain.
We all know working women who buy themselves extravagant presents "because I deserve it". After I got sick, and was still pushing myself to work full-time even when I had no energy left for Quality of Life, I decided there were some things I wouldn't deny myself; I "deserved" a reward for pushing myself to work ... especially during the years when my perfectly-healthy husband was refusing to get a job. They weren't budget-breakers like a round-the-world cruise, but they were things that, in the past, I would have dithered over spending that much on. I spend a lot of time resting on the couch, so why not make that time as pleasant as possible? Even after losing my job, I worked cable TV into my budget, so I wasn't stuck with whatever garbage the networks were offering.
And since I was stuck on the couch, and could no longer spend my weekends hiking, I stocked up on needlework supplies to fill my time. In the past,I had a limit how much I would spend on a single project; some of the bigger ones, I loved the picture (see www.tiag.com), but the total was more than I could justify. Spending $50-60 on one project was more than I had spent in the past, but it was affordable and provided as much as 200 hours of diversion. I convinced myself that as long as I was working at the expense of my health, I deserved to buy the projects I loved and not just the projects that cost the least. When scrunching up large pieces of fabric to stitch in the middle of them made my hand cramp, making the experience of stitching painful, I treated myself to scroll bars (www.adp-usa.com) and a floor stand (the one I currently have my eye on is from www.hearthsidecraftworks.com -- these are made to your specifications, so if you need it to fit over a wheelchair or recliner, that can be done; they assure me that they can even make one to fit over the bed when I reach the point of being permanently bedridden).
A splurge that makes your life easier or more enjoyable is not a splurge.
And reward yourself at the end of the day with a nice scented bubble bath. It's not only a reward, but it will reduce the pain and ease you into sleep. I recommend http://www.mtshastanaturals.com/Synergies.htm Lullaby and FibroSoak. http://www.mtshastanaturals.com/Fibrosoak.htm While I was in the clinical trial, I wasn't allowed to ingest anything to help with pain. Susan hand-delivered the 5-pound bucket of FibroSoak on a cold rainy night (thank you from the bottom of my heart, LifeSaver!) and several times a day, I'd be in the bathtub to ease the pain for a few hours.
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