I had quite forgotten to post about this, but I did at least make it by the last day of the month.
September is/was Pain Awareness Month.
In honor of that, I’ve picked up a meme I’ve seen in a few other places about pain and invisible illness:
1. The illness I live with is: Ehlers-Danlos Syndrome, classical type. Acid Reflux caused by a hiatal hernia. Fibromyalgia/intractable pain. Migraines (simple, cervicogenic, and complex). Raynaud’s syndrome. Asthma. Ideopathic insomnia and alpha wave intrusion into delta sleep. Bipolarism. Side effects of EDS: Orthostatic intolerance, plantar fasciitis, frequent dislocations.
2. I was diagnosed with it in the year: The main dx, EDS, came in January 2009. Simple migraines dx’d in 1998, cervicogenic migraines in early 2009, complex migraines Sept 2009. asthma and plantar fasciitis in 1994. Acid reflux started in mid-2008. Fibromyalgia is still only a tenative dx, intractable pain is what they have officially called it since Jan 2008. The sleep problems were both diagnosed April 2009. Bipolarism diagnosed in 2000
3. But I had symptoms since: I suppose I’ve been symptomatic with EDS since I was 8, which would have been 1991. Fibromyalgia/intractable pain started in August 2007. I’ve had sleep problems, including what are probably night terrors, since I was very young. I probably was symptomatic with bipolarism starting in 1996. The other issues were diagnosed within 2 months of when they started, for which I am very thankful.
4. The biggest adjustment I’ve had to make is: Where to start? Asking for help. Asking for extentions. Scheduling myself oh-so-carefully. Not being completely independant. Dropping activities that risk my joints. Daily exercise. (okay, so I was doing that before I was sick, but I was a gym rat then, and now I do my entire routine at home because I need very specific things!)
5. Most people assume: that I’m healthy – after all, nothing shows on the surface. The next biggest assumption is that I’m blind, because I work with a service dog.
6. The hardest part about mornings are: Oh god. I hate mornings. I tend to wake up groggy and stiff, oh so painfully stiff. My body doesn’t want to move. I have to get up, correct the position of the vertebrae in my spine and an unpredictable number of other joints.
7. My favorite medical TV show is: Does Bones count? I don’t like medical TV shows, as a rule, because they tend to make it look like there is one approach to treating each complex illness, when the truth is that there are myriad treatments that get tailored to an individual
8. A gadget I couldn’t live without is: air conditioner/fan. I faint if I overheat badly, and besides that I have trouble sleeping without the white noise and air circulation from the fan.
9. The hardest part about nights are: getting to sleep. Getting comfortable.
10. Each day I take 22 pills.
11. Regarding alternative treatments I: am tenative about them. Studies are so up and down about them. Thus far, the only one I’ve used is meditation for pain control, and it’s not as effective as I would like.
12. If I had to choose between an invisible illness or visible I would choose: certainly not being caught halfway between the way I am now!
13. Regarding working and career: I worry. I worry a lot. I hope that I will be able to practice once I am out of school, but I’ll admit that the terror of not being able to does crowd my thoughts sometimes.
14. People would be surprised to know: You know, I’m not sure I can come up with anything that would surprise people anymore! I’m a bit of an open book. Umm…
15. The hardest thing to accept about my new reality has been: The loss of my independence, and the constant pain. I’m not sure which of those two has been harder.
16. Something I never thought I could do with my illness that I did was: I…I haven’t done anything all that amazing yet. If I manage to figure out a way to work full-time, or to take a full-time course load, that will shock me.
17. The commercials about my illness: The only commercial about EDS that I’ve seen was for a medical mysteries TV show. The commercials about fibromyalgia did offer drugs that actually help, a huge amount! The migraine commercials tend to annoy me. An asthma commercial may have saved my life. Most commercials for mood disorders piss me off because they imply that all you have to do is take a happy little pill and you can be a happy little person. The most successful sleep medication I’ve taken was one I asked for after seeing a commercial for it.
18. Something I really miss doing since I was diagnosed is: Dancing. Oh god do I miss dancing.
19. It was really hard to have to give up: Dancing, swordfighting, fencing, archery. Renaissance re-enactment. Sewing. Rock-climbing.
20. A new hobby I have taken up since my diagnosis is: Knitting. Jewelry making.
21. If I could have one day of feeling normal again I would: go for a hike and a challenging climb up a natural rock face.
22. My illness has taught me: To accept what I cannot change (most of the time – I still throw the occasional tantrum about it)
23. Want to know a secret? One thing people say that gets under my skin is: ‘I admire you’ or ‘You’re so brave.’ No, I’m not. I’m a human being, is all. Don’t admire me for not curling up and dying. I continue to live my life because the alternative is pretty unpalatable, though to be honest the alternative does come to mind now an again.
24. But I love it when people: Just acknowledge that this reality is pretty harsh. I don’t want pity or admiration, I want understanding. I know it’s a lot to ask.
25. My favorite motto, scripture, quote that gets me through tough times is: I am not my body. My body is a vessel for me, and nothing more.
26. When someone is diagnosed I’d like to tell them: You are the expert on your own body. Think of a doctor as the consultant you call in to help guide your body to better health. Not all doctors are created equal, so don’t be afraid to get a new one. Above all else, look for a doctor who listens to you!
27. Something that has surprised me about living with an illness is: how often people disbelieve you about your experience, your reality, your symptoms.
28. The nicest thing someone did for me when I wasn’t feeling well was: Cooking. It may sound silly, but my first year of law school, I wasn’t feeling well near Spring exam time. My boyfriend made me a huge pot of stew and a pan of the most amazing manicotti, and having all of that wholesome, delicious food so easily available was really awesome.
So, did you make it through all of that? If you have questions or comments about things I wrote there, as always, post away!