- What does it really feel like to have fibromyalgia? What is the pain really like?
A friend asked me this last week and I was practically in tears I was so grateful that she cared enough to ask what it was like to live me life. I was more than happy to explain a little bit about what my life is like behind closed doors. In four years no one has ever asked me that question before.
2. What can I do to understand you better?
It would mean a lot to me if instead of getting annoyed at me for not being able to do everything a normal person does someone would ask me this. I don’t just flake out because I’m flaky, I flake out because my body refuses to listen to my mind. I want to do things so I make plans, but then at the last minute I find I am so exhausted I can’t follow through.
3. Is there anything I can do to ease your pain?
Sometimes there is nothing you can do but express willingness to listen, but other times just the smallest bit of assistance would mean the world to me.
4. I know you are doing all you can and that is enough for me
People with chronic illness have to deal with not just their disease, but the guilt and judgement that comes with it. We know that we are a burden and we feel guilty about it always. We try to do everything we can but we always fall short of what a healthy person can do. Acknowledging our efforts would be a huge mental boost.
5. I know your illness is real and that you are not crazy
When you have fibromyalgia or Lyme Disease you are told on a regular basis that you are nuts. You are told by most doctors, the CDC, random strangers, and even friends and family members. It is terrible to have your life destroyed by a disease only to be told that it is only in your mind.
All too true. I know I wish I heard all of these more often. I wish you'd add "share" buttons for twitter/ FB etc to your blog, because you have so many awesome posts that I want (and often do) share with my followers.
Thanks Julie. There are facebook/twitter buttons at the very bottom of each post under the labels. Admittedly, I am technologically deficient so I've never actually used them =) I spent hours one day trying to get a pin it button and was completely unsuccessful!
I’m 82 yrs. old and just found out I have an auto-immune disease and that bad things in my body (from the disease) are eating up good things in my body…yikes…and that is causing all the pain.
Imagine good things in your body (like your immune system) being eaten up by bad things in your body…..It’s very painful and exhausting.
I’ve been very busy, in my life, raising four children and working full time to support them and I went to college part time in order to work toward a better job so I could raise them properly. It’s so hard now. I wish they had something to take this terrible pain away.
Now, in my retirement age I’ve only wanted to rest. Well, all of this pain is giving me the time to rest, but not too comfortably! Any help??