Tuesday, September 9, 2014

Learning a better way

I can't believe how long it's been since I posted anything here. Before I start feeling guilty, useless or any other negative emotion, I simply admit that such is the nature of the ME-CFS beast. We get slammed, and we are down for the count until our illness says otherwise. End of story. Or is it?

Don't give up!

There is a strong temptation to chalk up new symptoms to this crazy illness rather than see our doctors. Why? Because we know what to expect when we report yet another debilitating symptom that no one can test for, let alone see. I have been patronized, judged, accused, refused treatment... the list goes on and on, as I'm sure yours does too. Learning to live with our bodies is no minor accomplishment. It's learning to stay in the game, without collateral damage on both sides, that's the tricky part.

The right way to fight

I have to admit that I'm still learning how to do this. My last visit to the ER was truly traumatizing. I was covered in hives, I felt like my brain was on fire, and that my heart was going to explode. I felt so profoundly unwell, yet this doctor just kept saying "I don't see anything wrong". Then, without skipping a beat, he said "Well, I can't give you any more pain medication"... sigh.

I never asked for any!!!!!

OK, deep breaths...
I grow so weary of doctors who refuse to hear me, or who can't be bothered to connect the dots of this maddening illness. However, am I expecting or even demanding something that simply doesn't exist? There is no cure for ME-CFS. Most doctors have not read the research, which continues to grow. Bottom line is, the more upset I get at a system that doesn't know what to do with me anyway, the worse I will get - period.

Is that what I want? Is that what YOU want??

It is possible to learn how to manage ME-CFS. It's not a quick fix, but you can learn skills that will make a difference long-term. I highly recommend the CFIDS & Fibromyalgia Self-Help program. You get to meet other patients, plus the course is led by patients who have successfully completed the course themselves. They have walked the walk. 

I also began reading Chronic Fatigue Syndrome, Fibromyalgia and Other Invisible Illnesses by Dr. Katrina Berne. She has the unique perspective of being a doctor and a patient. Yet, even with her credentials, she writes about the less than stellar treatment she has endured from the medical community. In a way, I found it quite validating to see that it wasn't just me going through this. Her book also contains lots of self-management strategies, which I look forward to reading. Again, if she can do it, then so can we!

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Are you helping or hurting your cause and your health? Do you tend to get defensive and upset when people treat you unfairly? It's a natural response BUT would you be willing to learn how to approach these situations in a way that doesn't set you back for weeks, even months, at a time? You can go from victim to advocate. Yes, you can advocate for yourself! Are you willing to begin taking baby steps with me? 

A wise man is strong and is better than a strong man, and a man of knowledge increases and strengthens his power          Proverbs 24:5

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