Today is Fibromyalgia Awareness Day. I hope you are all wearing purple. In honor of Fibromyalgia Awareness Day, I thought I’d share some fun graphics. Please share them far and wide and help spread awareness of this disease. Help make fibromyalgia visible today.
I found this blog entry to be a great description of what we fibromyalgia sufferers go through to achieve “acceptance.” While I think acceptance is an ongoing thing, not a period at the end of a statement, I really liked this description of acceptance and wanted to share it.
A flurry of emotions arise when confronted with a life changing diagnosis, among them are fear, sadness, anger, frustration and grief. Each person handles these emotions in different ways and at varying points in the healing process. Ideally, the goal is to work towards acceptance. Acceptance, according to wikipedia.com, “is a person’s assent to the reality of a situation.” For someone with Fibromyalgia or any other chronic condition, acceptance may be difficult to achieve. How can one accept that life as they knew it, likely will change? It’s difficult to grasp.
Acceptance doesn’t mean giving up, as some may think. Acceptance involves learning to live one’s life without allowing your diagnosis to take control. This doesn’t mean that the medical conditions or the limitations it might impose disappear; it means that one has learned how to live their life in spite of these limitations.
I have faced many challenges on my ever so curvy road to acceptance. Truthfully, I’m not sure if I will ever acknowledge my illness 100%. I doubt that is possible for anyone. I’m OK with that, though because I know that there will always be times that a plethora of emotions will return to the surface. If I don’t allow the emotions to surface, it will only make me feel worse.
The flip side is that I have learned a lot about myself. I learned that the key to understanding one’s limitations is self-awareness. Awareness of what helps and what hurts, an understanding of when I am my most alert and when I need to rest. I learned when and how to ask for help. Most of all, I have learned to live my life from moment to accepting myself as I am now.
“I am not what happened to me, I am what I choose to become”. Carl Jung
September is Chronic Pain Awareness Month! Some of us (and/or our loved ones) are dealing with Chronic Pain on a daily basis. Sadly, our pain does not end come October 1.I would like readers to share this post (if you don’t mind) and, if you would like your story included, please answer the questions below. Be sure to link it back to Tracy Rydzy at http://ohwhatapain.wordpress.com or post it as a comment. Also, please feel free to include the Chronic Pain Awareness logo above on your blog to let others know that you support Chronic Pain Awareness Month and the “Oh What a Pain Chronic Pain Awareness Forum!” My hope is that by sharing our personal stories, we can create awareness of what it isactually like to live with Chronic Pain and how best to cope with it!
I have created a new page called “Creating Chronic Pain Awareness” where I will post everyone’s answers along with your name and blog address (unless you would like to remain anonymous). By doing this, I hope that we can increase chronic pain awareness and support one another on this difficult road.
Please answer the following questions:
- What condition(s) do you have that have led you to living with chronic pain?
- What do you want others to know about what it’s like to live with chronic pain? (i.e.- what is it no one is saying about life with chronic pain? )
- Which philosophy do you ascribe to: Keep hoping that the pain will get better or learn to adapt to life with chronic pain?
- What do you miss the most that you feel you gave up because of chronic pain? What do you do now to fill that void?
- What have you heard from others that made you feel better?
- Do you feel that people view/treat you differently? How?
- What coping mechanisms have you tried that worked for you? Which ones did not work for you? (Traditional and Non-traditional)
If you would like to have your answers published, please include your name, and blog address or email. If you would prefer to remain anonymous, please just let me know.
Please see “Creating Chronic Pain Awareness” to view other people’s answers to these questions.
Here are my answers. Laura Hart, 28:
- What condition(s) do you have that have led you to living with chronic pain? I suffer from fibromyalgia and a bad case of TMJ disorder. I’ve also had migraines my whole life.
- What do you want others to know about what it’s like to live with chronic pain? (i.e.- what is it no one is saying about life with chronic pain? ) Living in chronic pain sucks. It’s hard. It takes work to get through every day. It’s an uphill battle I fight every day. The best I can do is achieve a stalemate. I never win. Pain is exhausting and it isolates you from others. It makes it hard to do “normal” things, even something as simple as going out to dinner. Chronic pain is a constant presence in my life. It divides my attention from everything.
- Which philosophy do you ascribe to: Keep hoping that the pain will get better or learn to adapt to life with chronic pain? Learn to adapt to life with chronic pain. I do believe one day the pain will be better, but for now I’m learning to adapt to life with fibromyalgia. I’m learning to live again.
- What do you miss the most that you feel you gave up because of chronic pain? What do you do now to fill that void? I miss being able to do things spontaneously. So much planning and effort is required for me to do anything now. I can’t just decide to go on a day trip with my husband or go shopping or anything. I have to plan everything out. I have to conserve energy that day so I’ll have enough left over to do something fun later on in the day. I have to build recovery time into my schedule. Nothing is simple with fibromyalgia and chronic pain. I’m still learning how to fill this void. I haven’t come up with a solution yet, but I’m working on it.
- What have you heard from others that made you feel better? That others out there know exactly what I’m going through. What I’m feeling. I’m not alone in my pain. My friends and family empathize as best they can’t, but they’ve never experienced chronic pain, so they don’t really know what it’s like. It’s great to connect with someone who is going through the same things I am and know you aren’t alone in these feelings.
- Do you feel that people view/treat you differently? How? I’m a lot less sympathetic towards people than I used to be. For example, I used to work with someone who told everyone about the least little ache or pain she had, whether they asked her how she was or not, and she would make it sound like she was at death’s door. This would drive me nuts as I was sitting next to here in a ton of real pain and she never asked how I was. I was often short with her because she tried my patience so. I feel like people don’t believe that I’m in pain because they can’t see it. Fibromyalgia is an invisible disease. I look normal and healthy, but inside I’m in pain. Pain has scarred me emotional and physically, but these are invisible scars. No one sees them but me. I also feel like I’m treated as a drug addict. If I go to a new doctor’s office, the nurse takes my list of medications and he/she gives me the “look.” The look that says you’re here to scam the system and get drugs. You’re not really sick, it’s all in your head. Just because others do this, does not mean I should be treated like a bad person. It’s not fair. I get a similar treatment at my local CVS. I have to promise them every time I’m picking up my meds that I’m following doctors orders and I really am supposed to on all these things. It happened again yesterday, when I was in near agony from the storms that just came through, and I lost it. I snapped at them and said I’m asked this all the time and I tell you the same thing every time. Why can’t you stop asking me? They said they’d add a note in the computer. Yeah right.
- What coping mechanisms have you tried that worked for you? Which ones did not work for you? (Traditional and Non-traditional) I’ve tried everything I could think of. Here’s what works for me: acupuncture, EMDR therapy (more intense than traditional cognitive therapy), osteopathic manipulation, journaling, coloring, relaxation music, yoga, meditation, daily exercise, stretching throughout the day, deep breathing exercises, relaxation exercises, Qi Gong, writing my blog, playing with my dog, massage therapy, sleep, naps, ice packs, heating pads, orthodontics, and a combination of pain meds, muscle relaxers, Cymbalta, and Klonopin. What doesn’t work for me: physical therapy, over or under exercising daily, ignoring the pain and hoping it will go away (never works), getting in to a routine (impossible for me as every day feels different), working full time (impossible), traditional talk therapy, steroid injections, steroid treatments, any Acetaminophen-based pain meds (Loritab, Oxycodone – I’m immune to them), and not being honest with others about what I’m going through.
I’d like to thank everyone who read the post “Fibromyalgia’s Invisible Face” and others on my blog yesterday and today. And a special thank you to everyone who posted such amazing and supportive comments. I was blown away by the response I got on this post yesterday. You all made my blog the #1 growing blog on WordPress today, which is amazing. That ought to make some people aware of what we go through dealing with fibromyalgia who have probably never heard of it, which is amazing. I started the blog to help myself cope as I battle against my chronic pain and fibromyalgia. I hoped writing about it would help me and maybe help a few others too. You all made my wish come true yesterday. You’re amazing comments demonstrated once and for all that we are not fighting this disease allow. We are a large and strong group and together can be very supportive of each other. I was pretty miserable yesterday from a fibro flare up, but you all turned just another normal painful day for me into something that was special and memorable. I thank you so much for sharing your thoughts with me. I plan to keep writing and sharing my thoughts and experiences with fibromyalgia on this blog. I hope you will keep coming back and read more. Thank you all! To borrow a phrase so many of you used that I had not heard of before yesterday — Love and Soft Hugs!!