I had no idea that September was Chronic Pain awareness month until I read this post by the ever lovely Tracy. I couldn’t be more eager to contribute to the Chronic Pain forum she is setting up!
Here are my answers to her questions:
1. What condition(s) do you have that have led you to living with chronic pain?
I have endometriosis, a gynecological condition which is caused by endometrial tissue sticking to parts of my insides where it shouldn’t, in my case this includes the outside of my uterus and all along my pelvic wall. It causes chronic pelvic and back pain as well as several other lovely side effects.
2. 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? )
Life with chronic pain is like living with a very badly behaved monkey. You have to constantly carry the monkey around. Some days it is docile and doesn’t interfere much, it’s just sort of…there. Other days it demands attention. It gets cranky and generally tries to make your life as miserable as possible. Things you could do before you got your monkey become 100 times more difficult with it. In every part of every day, you need to think about your monkey and how what you’re doing (or contemplating doing) might affect it and how that, in turn, will make your life more difficult.
3. Which philosophy do you ascribe to: Keep hoping that the pain will get better or learn to adapt to life with chronic pain?
I alternate between the two. I’m currently leaning on the ‘adapting’ side. I’ve realised that my condition is incurable and whatever treatments I may receive could help but the problem will always be there. I’ve had to adapt out of necessity.
4. 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 the freedom of my old life BM (before monkey). I miss being able to do things at the drop of a hat without complicated planning beforehand. I miss the energy I had to keep going without having to rest. I miss actually living like the 20-something I am rather than this strange life as a pseudo-geriatric. Living with chronic pain has changed me and maybe I needed to change. Now that I plan everything, I realise what I really want to do with my precious time and energy. The friends I have now are the truest friends I’ve ever had. I haven’t forgotten the girl I was BM, I’m just a slightly altered version, Me 2.0.
5. What have you heard from others that made you feel better?
Just that I’m not alone. Writing this blog has introduced me to a world of people who get what life is like when you live with something like chronic pain. I giggle and tear up reading other people’s stories because I can relate to them so much. Although I have great friends and an awesome family, they don’t know how it feels to be in pain most of the time. It makes me feel better just knowing that I am not alone.
It also helps when my friends or family acknowledge what I’m going through. People telling me that I’m strong and that they admire my faith and courage is a wonderful thing to hear, even when I feel as cowardly as the lion.
6. Do you feel that people view/treat you differently? How?
People do treat me differently which is sometimes sweet and sometimes irritating. Sweet when they notice a small indicator of my pain or exhaustion and offer to help. They get anxious easily when I’m around. Some of my friends joke about me being the ‘sick one’ because that’s just their way of coping with it. Some try to ignore the giant pink elephant in the room until something happens to drag it kicking and screaming right in front of them. I guess it makes sense that people treat me differently though because I am kind of different now.
7. What coping mechanisms have you tried that worked for you? Which ones did not work for you? (Traditional and Non-traditional)
The most successful coping mechanism in my opinion is talking. Its only lately that I’ve really started talking about what I’m going through and, even though it’s probably gobbeldeegook to anyone who isn’t me, getting it out there helps immensely.
Being fair to myself and my monkey also helps. If I feel myself getting stressed, I make a conscious effort to take myself away from it. I distract myself and try to relax (easier said than done). The whole meditation thing doesn’t work for me but old episodes of ‘Friends’ does. 🙂 I’ve taken up tea drinking which strangely enough helps my muscles relax slightly, especially peppermint tea. And I blog.