inspired by moonvoice
mood: 
crappy
crappymusic: keyboards clattering
1. The illness I live with is: fibromyalgia, post traumatic stress disorder, irritable bowel syndrome, clinical depression, gastric reflux disease, migraine
2. I was diagnosed with it in the year: The fibro was diagnosed about 1988 or 1989. PTSD was diagnosed later.
3. But I had symptoms since: I'm told that severe childhood growth pains in the long bones are one marker for fibromyalgia. Regardless, I can no longer remember not being in pain.
4. The biggest adjustment I’ve had to make is: not working for a living. There's a huge societal pressure to have a job. It's how most people create an identity in North American society. One of the first questions most people ask is "what do you do?" After a while I started answering that I'm a professional madwoman. It stops people and makes them think. And if they can't handle that, I don't want to be their friend anyway.
5. Most people assume: there's nothing wrong with me.
6. The hardest part about mornings are: hurting like hell before my eyes are even open, then having to get out of bed.
7. My favorite medical TV show is: I don't watch tv, so I don't have one.
8. A gadget I couldn’t live without is: computers and the internet. They are my lifeline to something vaguely resembling a social life.
9. The hardest part about nights are: insomnia and nightmares. Take your pick. It's frequently one or the other.
10. Each day I take __ pills & vitamins. (No comments, please) antidepressant, GERD medication, tylenol, antihistamines (two kinds), nasal inhaler. That's on a good day. When I'm sick with something else, I end up taking more stuff.
11. Regarding alternative treatments I: have tried a bunch of stuff. Most of what has helped has been spiritual/magical work and massage, though I can't usually afford massage.
12. If I had to choose between an invisible illness or visible I would choose: I'd prefer neither, though I suspect I would rather an illness that has a visible manifestation because then people wouldn't give me shit about how I don't live up to expectations regarding my appearance.
13. Regarding working and career: I have both, I just don't get paid for them. I write. I teach. I travel and give workshops. I talk with people through the internet. I help organize a local CR Pagan group. I've done volunteer work for interfaith and Pagan organizations. I do activism around women's issues and veterans issues. I can't do any of this consistently enough to get a regular paycheck, but I can still make a difference in the world.
14. People would be surprised to know: how much pain I'm actually in most of the time.
15. The hardest thing to accept about my new reality has been: how often I end up staying home instead of doing something, because I'm in too much pain or too tired to leave the house.
16. Something I never thought I could do with my illness that I did was: go backpacking, more than once. I pay for it severely after I go out camping or packing, but I love it so much that I can't bear to give it up entirely.
17. The commercials about my illness: there aren't any.
18. Something I really miss doing since I was diagnosed is: playing guitar. Writing with a pen. Dancing.
19. It was really hard to have to give up: working. It took a long time for me to rebuild a sense of self-worth after losing my ability to have a regular job.
20. A new hobby I have taken up since my diagnosis is: having a life. When I worked, every bit of energy I had went into working. I tried writing when I had time afterwards, but I didn't get much done. Now that I can pick my battles, as it were, I have a lot more time for doing things I actually enjoy.
21. If I could have one day of feeling normal again I would: go dancing all night.
22. My illness has taught me: I'm a lot more resilient than I ever suspected.
23. Want to know a secret? One thing people say that gets under my skin is: "just get over it." How, exactly? Do you honestly think it's easy? Do you think I want to hurt? That I want nightmares? That I love insomnia? That I enjoy the inside of my house so much I want to spend all my time here? That I like freaking out when something triggers a traumatic memory?
24. But I love it when people: ask politely if I would like some help rather than assuming I can't do something. My friends take care of me but sometimes they shield me a little more than I'd like. I appreciate it when they ask rather than assuming. Sometimes I want to do it myself. Sometimes, yeah, I really could use a little help, and thank you so much for assisting!
25. My favorite motto, scripture, quote that gets me through tough times is: It's all good.
26. When someone is diagnosed I’d like to tell them: You can live with this. It's hard at first, but it gets easier with time. This doesn't change your value as a human being. You are still a good person, worthy of love and of having a good life. It's all right to enjoy yourself; it doesn't mean there's nothing wrong, it just means you're learning to live with it.
27. Something that has surprised me about living with an illness is: that I'm able to do so, and do well.
28. The nicest thing someone did for me when I wasn’t feeling well was: coming to visit because they knew I couldn't leave the house. I spent two years with severe enough agoraphobia that I couldn't go anywhere without someone with me. The people who cared about me still came to visit, even if I couldn't visit them.
29. I’m involved with Invisible Illness Week because: things like this shouldn't be invisible.
30. The fact that you read this list makes me feel: loved and appreciated. Thank you for taking the time.
(Anonymous)
Since then, I have seen doctors on both sides of the issues regarding fibro, PTSD, and other crippling conditions talk at length about them, I've had defense lawyers hopping around before depositions, raving about how they had proof someone with one of these illnesses was milking it because they had caught them on video looking normal or having fun, had defense lawyers after deps talk to me afterward, asking me if didn't I too think the plaintiff should just "get over" their PTSD after getting seeing a friend die and suffering severe injuries themselves when the construction scaffolding collapsed. They cannot bear the idea that the world does not fit into neat little boxes, that everything is not revealed and answerable. It does not help that there are indeed people who milk and bilk the system with frivolous lawsuits; I really hate those people because it has hardened even some of the fairly sympathetic people to awarding judgments to those who really and truly DO have cases. And then there is the fact that a lot of these people who believe the world should fit into neat little boxes are completely privileged and spoiled -- they've got lots of money, things have been easy for them, and they've never suffered tragedy and they just figure anyone who hasn't made it like they have is doing something wrong. They are still like kids, shielded from the world by dumb luck.
Anyway, I'll stop ranting now. I've seen plenty of people with mysterious symptoms that could never be measured objectively testify and knew they were lying their asses off about their condition, and I've also seen plenty of people who had bad things happen to them or who were experiencing crippling, life-altering conditions from depression, to fibro, to PTSD, and others, who the doctors dismissed condescendingly and the lawyers joked about on breaks, and it is amazing to see the amount of collateral damage that skeptics can do to, just casually, to people who truly are suffering.
When I first got my VA disability, I was terrified that if I ran for a bus or was seen having fun, they would take my pension away. There's still a shadow of that in the back of my mind all the time and it's so hard to banish. What nobody sees when I do something like that is how much I hurt when I'm doing it, or how I can barely move the next day. We can only wear our pain on the inside.
(Anonymous)
As Mommy sits down....
Except when you yell....MOM...DON'T SING ANY MORE..:-o
eXtra huggies and snuggles,
Luvs U,
Momster
Re: As Mommy sits down....
Mind if I borrow this for my LJ, to put my own answers in?
It also makes it clear how brave and strong you are every day.
Big hugs!
While it's hard for me, I know it's hard for my friends too, who don't always know what to do or how to react to something. For the most part, if I'm out and about, it's because I'm having a reasonably good day. Treating me normally is usually the best thing you can do. If I'm out on a bad day, I'll probably look it and might need a little more time sitting down between doing things, or maybe a couple more cups of tea than usual. Sometimes I might ask for help, though that's been a difficult thing to learn over the years; it's hard to show weakness in public.
You know how stubborn I am. :)
Thanks. I'd love to see you up here now and then. I know how long a haul it is by public transit, though, so no worries.
Even for someone who shares a little bit of the pain, and knew a good bit about the technical names for the things... hearing you talk about it objectively puts it in real perspective. It's one thing to read that person X is in pain (gods know a good deal of my friends are most of the time!), another thing to see and hear exactly how much it limits them. Thanks for sharing :^)
What kind of effects do you feel the inability to default your identity to a workaday job has had on your self-growth? I've often wondered why it seems the Freak Nation seems to be so disproportionally disabled, compared to the general population (although, maybe I'm being able-ist and discounting people in the general population who have invisible illnesses and don't talk about it), and I was wondering about some of the identity issues you brought up in your answers . . .
As far as identity goes, I think I've learned a lot more about myself and gone a lot further in some ways as a "disabled" person than I would have were I completely "normal." I understand more about my limitations and where and how I push the envelopes. I get more deeply into my spirituality because I have the time and the ability to do self-reflection that working a 60-hour week would not afford.
This is a really complex issue that can't really be nailed down easily. I identify as a professional madwoman. "Disabled" is a hard word to swallow because it is so rife with negativity in our society, yet someone who breaks a leg is temporarily disabled. I'm not much different than that, it's just that my disability is permanent and I'm not on crutches. Disability creates fear in those who see it because so often there's a subconscious worry that it is contagious.
Nobody wants to be around someone who is chronically ill because they're "a downer" - even if that cheerful person laughing with friends in a cafe is actually dealing with clinical depression and fibromyalgia and is just having a day when they're able to cope with things. Nobody knows just looking at me. Nobody knows unless I say something. If I just said "I'm a writer" people would assume I made my living that way, even though I don't make enough money in any given year to pay taxes on.
The American "Protestant work ethic" is one of the hardest things to deal with in our society.
(Anonymous)
30 things about my invisible illness you may not know
I really liked that posting/article. You really bared your heart about some things that a lot of people wouldn't mention, even to those that also suffer from an invisible illness.I have to admit that I agree with & can identify with nearly your entire list.
I especially like the comment (#29) that things like this shouldn't be invisible.(((((BIG hugs to you))))) Jules
Re: 30 things about my invisible illness you may not know
*hugs*
ttyl
Secondly - two years, seven months ago, I was newly graduated with my shiny bachelors degree - married all of seven months, and in a great job and in grad school. Life was good, things were going great, and I was active and busy and happy.
Then I got bit by a brown recluse spider. The damage from the spider venom was one thing - the trauma to my body was another. By the time six months had passed, I was diagnosed with Ankylosing Spondylitis - a genetic disease that had been kicked into active from the venom, and Fibromyalgia. The doctor said that the trauma to my body triggered the Fibro.
Since then - I have had to adjust how I live. I cannot work full time in an office. I have been lucky enough to work at a job that allows me to do most of it from home. I am not active without a lot of pre-planning. And you're right - the constant, persistent pain is just something you learn to deal with - or you let it drown you. I'm too bloody stubborn to drown. *grins*
The frustrations of having to adjust my expectations about myself are tough to deal with still - I want to move that dresser - and I simply cannot do it anymore. I want to go for a walk - and I get around the corner and I'm done. Stairs hurt. Damp, cold hurts.
The fact that it isn't visible - makes it hard to have to constantly explain - when I'm often too proud to want to deal with it. Thank you, so very much, for sharing.
(ps - I remember the bone pain when I was growing too!)
I'll be doing other posts during the week about invisible illness and the issues surrounding it that have come up in my life.
It's the whining/whinging stuff that drives me nuts ... if any one of "them" could experience just how fraking painful it has to be before I say a damn thing, they'd shut up in an instant.
Anyhow ... will probably give this a run too, just to do something for myself for once (not getting much opportunity to do that these days *headdesk*).
I'd love to see what you have to say about this. It's been interesting and heartening to see so many folks on my flist taking this up.
Hugs - sympathy - shared invisibility
There appear to be many trigger factors for various conditions, and, I suspect, the level of environmental toxins doesn't help any of it.
I've always had migraine, since I was a kid, usually triggered by environmental stuff. And the diabetes was triggered by walking viral pneumonia back in 98. It triggered the dormant gene and gave me an insulin-dependent condition. Sometimes it's the social stuff, the optional activities, that don't get the allotment of spoons/time.
Thankful to be working full-time, yet very aware that the invisible condition is something that is, well, invisible. The hardest thing is getting people to understand scheduling regular meals and such (tho' whipping out the needle pen at lunch brings it home to most - ha! - when they won't listen, and THEN they listen a bit more, for at least a while)
One annoyance is the insurance company sending reminder notes for regular medical checks and generally getting in your business.
Re: Hugs - sympathy - shared invisibility
It's such a struggle to get people to understand that just because we look fine that doesn't mean we are fine. Love to you my dear!
Other posts about similar issues as well.
Would like to friend you, if that's OK.