Nothing Exceeds Like Excess
Invisible Illness Week 
15th-Sep-2009 12:06 am
delirium
1. The illnesses I live with are:
Post Traumatic Stress Disorder, Chronic Depression, Anxiety Disorder, Migraines, Irritable Bowel Syndrome, Stage IV Endometriosis, Chronic Insomnia

2. I was diagnosed with it in the year:
I was diagnosed with chronic depression in early childhood...my first serious suicide attempt requiring hospitalization was when I was 8 years old. IBS and endometriosis, somewhere in the mid-80s. PTSD and the anxiety disorder were diagnosed after Katrina, though I have had symptoms since early childhood. I've only had migraines since Katrina. I'm self-diagnosed with the insomnia, though it's affected my life in a serious way since I was about three years old.

3. But I had symptoms since:
Pretty much forever. I can't remember a time when I felt 'normal'.

4. The biggest adjustment I've had to make is:
Realizing that this is my life. There will be good days and bad days, but it's never going to go away completely.

5. Most people assume:
That none of my ailments are serious or debilitating, that I should just suck it up and get a job, already.

6. The hardest part about mornings is:
Having to get out of bed and face another day.

7. My favorite medical TV show is:
M*A*S*H. The balance between tragedy and laughter is just right.

8. A gadget I couldn't live without is:
The internet, if that counts as a gadget. I'm pretty reclusive, so I live my life through electrons for the most part.

9. The hardest part about nights is:
The nightmares. The night terrors. The inability to fall asleep or stay asleep. The guilt I feel when I accidentally kick the cat off the bed in the throes of a nightmare.

10. Each day I take [?] pills & vitamins.
I don't. I can't afford any sort of health care or medications, and the "services" provided by the government have failed me over and over again.

11. Regarding alternative treatments, I:
I would really, really love a good massage.

12. If I had to choose between an invisible illness and a visible one, I would choose:
To be healthy, whatever that is. I think I'd prefer something visible...as things are, people simply assume I'm weak and lazy.

13. Regarding working and career:
I can't have one. My good days are rare at best and come unpredictably. I would have to work from home, and have no real useful skills to parlay into any sort of income. Unless someone wants to pay me for the songs I make up and sing to my cat...;)

14. People would be surprised to know:
How damned hard it is to just make it through the day.

15. The hardest thing to accept about my new reality is:
This isn't a new reality. It's the only reality I've ever known.

16. Something I never thought I could do with my illness was:
Laugh about it. Still working on that.

17. The commercials about my illness:
There are none, except for depression. Cymbalta has taught me that depression hurts the dogs.

18. Something I really miss doing since I was diagnosed:
I don't miss anything, since it's always been this way.

19. It was really hard to give up:
Hope.

20. A new hobby I've taken up since my diagnosis is:
Playing connect-the-dots with all of my scars and naming the constellations thus created.

21. If I could have one day of feeling normal again, I would:
I don't know what normal is.

22. My illness has taught me:
That it's possible to keep living and fighting even when I dream of giving up.

23. Want to know a secret? One thing people say (about my illness) that gets under my skin is:
That all happened years ago. Just get over it.

24. But I love it when people:
Buy me books out of sympathy. ;)

25. My favorite motto, scripture, quote that gets me through tough times is:
The Litany Against Fear. It really works. Sometimes.

26. When someone is diagnosed I like to tell them:
You can make it through this. You can live with this, and find some sort of happiness. Just don't ever give up.

27. Something that has surprised me about living with an illness is:
How damned hard it can be sometimes to just get out of bed and face the day.

28. The nicest thing someone did for me when I wasn't feeling well was:
Many people have given me books, and encouragement, and so much love. You all are the reason I'm still here and still fighting.

29. I'm involved with Invisible Illness Week because:
I'm the poster girl. ;)

30. The fact that you read this list makes me feel:
Like you maybe have too much time on your hands...;)
Comments 
15th-Sep-2009 06:19 am (UTC)
What can I do to help and did you have a good birthday?
15th-Sep-2009 06:25 am (UTC)
Just your continued support is so valuable, my dear. I do, however, have an Amazon wishlist on my profile page...;)

My birthday, unfortunately, turned into a drunken hysterical panic attack/full-blown PTSD meltdown. I was not at my best, to say the least. On the plus side, I got to meet a bunch of local LJ peeps, who are awesome and full of win and very very very forgiving. ;)

All in all, I've had worse birthdays.
xoxoxo
15th-Sep-2009 06:37 am (UTC)
Good for you too meet people. Sad it wasn't ok. My sis lives there. i think you would like each other.
15th-Sep-2009 06:27 am (UTC)
I wish there was something I could do for you.

*tight hugs* xxx
15th-Sep-2009 06:29 am (UTC)
I may be miles away, but I am still here for you.
15th-Sep-2009 04:40 pm (UTC)
The same for you, as well, my dear.
I love you so very much, Q.
xoxoo
15th-Sep-2009 07:47 am (UTC)
1. The illnesses I live with are:
Post Traumatic Stress Disorder, Chronic Depression, Anxiety Disorder, Migraines, Irritable Bowel Syndrome, Stage IV Endometriosis, Chronic Insomnia

5. Most people assume:
That none of my ailments are serious or debilitating, that I should just suck it up and get a job, already.


Most people are stupid. Just because most of those problems are "in your head" doesn't make them any less serious (though endometriosis is a real bitch, too). The fact is that there isn't a cure for any of those conditions, only treatments for symptoms that cause their own side effects.

Back when I was single, I'd lament to friends that I couldn't talk to girls. The conversation would usually go something like this:
"What do you mean? Half your friends are girls"
"Yeah, but I'm not talking to them as girls, I'm talking to my friend who happens to be female"
"You work in retail. Between your coworkers and the customers, you have to talk to 50 women a day, you don't have a problem there."
"Again, I'm not talking to women, I'm talking to coworkers and customers. I'm not trying to get a date"
"Well, next time you see someone you're interested in, just go up and talk to her"
"I. Can't. That's the problem"
"Sure you can, you're just shy. Suck it up and talk to her"
"I CAN'T, OK? I'm not good at starting conversations to begin with, every time I try to start a conversation with someone I'm interested in, my heart races, my brain shuts down from the constant refrain of don'tfuckitupdon'tfuckitupdon'tfuckitup going through it, and my tongue cleaves to the roof of my mouth. I. CAN'T. DO. IT."

Though I'm no longer single, I still haven't found a way to fix this, I just cheated. My girlfriend was (and still is) one of my coworkers, which made it easier to talk to her initially and we became good friends. This made it a little easier when I wanted to take it further (heart still racing, brain almost shut down, but at least I could talk), and even then I almost flubbed it.

Just because a problem is "in your head" doesn't make things easier. On the contrary, it usually makes things worse. We have only the barest inklings of how the brain works and the vast majority of what goes on in there is beyond our control.
15th-Sep-2009 04:36 pm (UTC)
Oh yes, indeed.
I hear ya, my friend.
xoxoxo
15th-Sep-2009 01:48 pm (UTC)
::hugs::

What is the Litany Against Fear?
15th-Sep-2009 04:38 pm (UTC)
From the book Dune by Frank Herbert. Best book ever written. Ever.

The Litany Against Fear

I must not fear
Fear is the mind killer
Fear is the little death that brings total obliteration
I will face my fear
I will permit it to pass over me and through me.
And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.
Only I will remain.
17th-Sep-2009 12:25 am (UTC)
I always felt that the sequels lacked something the original had, but could never really put my finger on it.
18th-Sep-2009 01:34 am (UTC)
When my boss gives me 27 things to do, I try tell him that my job titles do not include "Kwisatz Haderach", but he doesn't get it.
18th-Sep-2009 04:39 am (UTC)
Heh! Whenever Mike asks me to do more laundry or whatever, I get all Bene Gesserit..."I exist only to serve." While sharpening my axe...;)
15th-Sep-2009 04:00 pm (UTC)
Do you have my email address and phone #? I swear, except for hospitalization we were separated at birth. Well, and the fact that I'm ten years older than you are. :)

If you Private Message me, I can give you my contact info. It's up to you if you use it, but it does help to have someone who understands where you're coming from even if she hasn't had precisely the same experiences. I don't really know anyone (in the US and not on the Internet) who understands my list, either. Most people just turn into a Nike commercial. ;p
15th-Sep-2009 04:39 pm (UTC)
My email is gwyndynalexander AT yahoo DOT com
I do have a phone, but I only use it for emergencies. I'm very, very phone phobic.
xoxoxoox
15th-Sep-2009 04:55 pm (UTC)
Check. Will send you my info in a minute.

I don't like phones much, either. I have Caller ID, which makes it easier. I don't have to talk to anyone I don't want to. :)
16th-Sep-2009 06:51 am (UTC)
Life sucks, but just out of stubbornness, I'm not going to let it win by dying too soon.

Um -- that made more sense in my head. But then again, I'm crazy :P .

There is a place beyond hope, and it is a hard place, but it is habitable, and I will not leave without a fight.

You are an amazing fighter.
16th-Sep-2009 08:12 am (UTC)
Thank you, love.
That made perfect sense to me, but then again...I'm crazy too. ;)

It's hard to keep fighting sometimes, but there's no viable alternative...so, we just have to keep going and doing our best. I'll make you a pact: I'll keep fighting as long as you do. We'll just have to out-stubborn each other. ;)
xoxoxo
18th-Sep-2009 04:48 am (UTC)
Happy belated birthday.

Did someone send you, "On Combat?" I've been reading it. It's fierce.
18th-Sep-2009 04:59 am (UTC)
Thanks!
Yep, I've got that one and On Killing. Haven't started reading them yet, I'm kinda backlogged right now...
xox
20th-Sep-2009 02:02 pm (UTC) - suggestion Candida
Anonymous
Look for a copy of The Yeast Connection. It sounds like you might have candida overgrowth.

René
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