Invisible Illness Week
A friend brought to my attention the fact that this week (Sept. 14-20) has been Invisible Illness Week. I haven't written about my fibromyalgia for a while, but I've been planning to blog about it all week, but.... well I've been exhausted.
It seems like everyday is a constant struggle to keep my head above water. Take yesterday, for example. I left home at 8:45 to go to my biweekly massage appointment (it's about 40 min. away, but I love my massage therapist), on the way home I dropped by Sam's Club to pick up milk. I got home around 1:00 and took the puppy out to the park for a walk. I walked some--I try to use taking her out as an opportunity to exercise since most of my attempts at regular exercise over the past 10 year have failed--but spent a lot of the time just watching her play with other puppies. We got home at 3:00 and I was so wiped out that I crashed on the couch...for 3 1/2 hours. Now, I'm all a fan of 20-30 min. "power naps", but 3 1/2 hrs. is ridiculous. I tried to get up several times during my "nap", and did once, just long enough to get Brembo some food, but the crushing fatigue overcame me each time. I finally woke up when 'Chung came home, got some dinner and did a load of laundry. Thankfully today was my day off.
Fibromyalgia essentially consists of widespread pain, which I have all over my body. Certain parts hurt more than others. For me, my hands (pinky through middle fingers on both hands and right palm), forearms, neck, back, knees, and right leg are the most affected. In those parts of my body I often have deep, sharp or intense pain. Those are the "regulars"--the parts I can constantly depend on to bother me. Occasionally my hips, shoulders and jaw join in the fun. Otherwise, my body (muscle/soft tissue) just aches all over; this is more of a hard-to-pinpoint pain that crops up when I'm touched/touching something, sitting or standing in one position for too long, or have be "overexerting myself" (like washing dishes, vacuuming, driving or shopping, for example). I also oftentimes get intense headaches either from being exposed to allergens--particularly strong scents--or as a secondary effect of neck pain. Along with the pain of fibro. comes fatigue, insomnia and depression. Fortunately, I have been able to get the fatigue in check most of the time (yesterday was an exception) by cutting out most of the "extras" in my life. While I still have bouts of depression periodically, it hasn't recently been the overwhelming kind, but rather more of an underlying sadness at the loss of normalcy in my life. Insomnia is still a major problem for me, but that's something I've dealt with most of my life.
All in all, however, I'm very fortunate and blessed. I am still able to function very normally. I cannot do all that I want to and I have only a fraction of the energy I used to, but I'm able to work and can keep a lot of the pain in check (though not make it go away) through light exercise, massage and chiropractic treatments. I sometimes joke that I'm getting a preview of what it's like to be elderly...though if this is what I'm like at 30, I can't even imagine what life will be like at 70 or 80.
Who do you know with an invisible illness?
4 comments:
I've been thinking about you lately. I pray for you when I think of you, as you know. Someday, when you are ready, please come down and try my doctor here. I have seen her do some amazing things. I am not saying she could cure you, but she might be able to be a significant help. You are free to stay at our home if you do this. Our door is always open!
I would still LOVE to do that sometime. Its actually next ofn the list of "things to do". In the spring, I had thought about trying to come over the summer, but obviously that wasn't good timing. I guess I should just call the good doctor and see what she thinks it would involve.
Hi Rahime! I just stopped by your FB page to see what was new with you and noticed your blog. I wanted to mention that I really appreciate your description here of what fibromyalgia entails. I'm so sorry you have to deal with this! A good friend (woman at my church) also has chronic pain (MS), and she barely ever talks about it - even when asked. In fact, most people I know with chronic pain (I know at least 4 others) are the same way. I respect this, but often wonder what it's actually like - not just out of curiosity, but because I care about them. Anyway, I just wanted to say thanks for sharing about this.
Thanks Katie! I know, it's pretty uncommon for people to talk about their chronic pain.
Most of us don't want to seem like complainers. In fact, this blog post is one of the few times I've really talked about my pain with someone who's a healthcare practitioner or a fellow-sufferer of chronic pain/fatigue. Even with doctors, I oftentimes want to make it sound like I feel better than I do, especially if the reason for seeing the dr. is unrelated (which it usually is since I pretty much stopped seeing western health care practitioners regarding my FM years ago).
If I talked about my pain every time I thought about it or even every time I was asked about it, I think I'd wear out my friends and family very quickly. I also think it would encourage me to be generally discontented, so, for the most part, I prefer to focus on the positive--what I do have and can do--and not dwell on the limitations or misery of it.
In some ways its sad people don't talk about it more though because I think the general population is fairly unaware of how common chronic illness is, and it does help those in our lives who have to "deal with us" to understand where we're coming from. Why, for example, I don't generally accept a lot of social invitations, why I am not more "productive", etc.
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