By Lisa Abrams-Smart

From Spring 2012 Forum

There are patients just like me who have had CFIDS/ME for dozens of years. We have seen it slowly steal things away from us until one has little left to steal. All the things that have been stolen from us are things that so many others can take for granted. Since I've had this disease for decades, I can give others some coping techniques… or can I? After all, there's even a nonprofit that will, for a fee, help guide you along this road… or can they? My answer to both of these questions is a resounding "NO".

Of course you can tell others to accept their limits, to be flexible, to pace themselves carefully. I've heard that time and again. But can any of those reduce the pain, the body weakness, the irritable bowel, the petit mal seizures (etc., etc., etc.) or really make a huge difference? Of course not. We all know our circumstances change all the time and it doesn't help to tell another patient to pace themselves because nobody has the same energy envelope. Even our own evelope changes from day to day as any patient knows and it doesn't help to to tell another patient to pace themselves because we don't have a preditable energy envelope on any particular day. None of you are exactly like me. Some of you are so much worse — some are better — but it won't help any of us to gradually extend our "energy envelope". It may be successful for one patient at one particular moment but it can cause another to dramatically worsen at the same time. There's no way to predict when you're going to have a "bad" day but if you try to "stretch" that "energy envelope" on one of those days that isn't a good one, you can experience a far worse outcome.

To the psychologists out there that may scream for me to "accept" my illness, I tell them that I have been given no choice but to live with it every hour of every day. I didn't do anything purposefully to get this illness so I don't have to "accept" responsibility for it but, on the other hand, I won't lie and say I'm happy to have it. I'm not nutty enough to believe that this is a gift of any sort!

The best "coping" method I can give anybody is to allow yoruself a pity party every now and then and know that when you least expect it, there will be a good day or, perhaps, a good partial day. We all know to do less than we feel we are capable of doing because when we do more, we pay a huge price that only other patients can understand. We don't have to be told to slow down. We aren't given a choice! We learn the hard way that staying in the same position for too long is on our "no-no" list. We learn too much repetitive movement is something bad. But there's no one rule for all of us because we're all at different severities or our worst symptoms are not what others experience. I may not be able to tolerate wearing high heels, for example, but that doesn't mean another patient should throw out all their high heels. Yes there are some things we all have to avoid. We know, for example, that we are all alcohol intolerant. But all our personal lists will not help us get to the end of our own "must do" lists.

Stress makes everyone with every illness worse so we all have to learn to allow more time for everything we must do. We have to make choices that healthy people don't have to think about twice. Given fewer choices due to CFIDS/ME doesn't take way all our choices althugh there are some so severe that they are left with very few choices. Our life becomes a balancing act. The one thing that everyone agrees will help is science to discover what is causing our lives to be that way. Then we can attack the cause or block it somehow. Until then, there are many helpful coping tips that are merely common sense and, often, necessities. Until then, we all have to put up with those that try to tell us they've experienced the same illness and learned how to get well. We know that if they really had, they'd still be sick today.

Lisa lives in Montana.