30 Things About My Invisible Illness You May Not Know
1. The illness I live with is: Chronic Intractable Headache, and Fibromyalgia
2. I was diagnosed with it in the year:2009 for the Fibro, and 2006 for the Headache
3. But I had symptoms since: age 13 or 14
4. The biggest adjustment I’ve had to make is: T he amount of activities I can do daily. The fact that the old AnnaBeth is really no more. A new one is ready to emerge, if I let her.
5. Most people assume: I look fine, I must be fine.
6. The hardest part about mornings are: Waking up, sleep is elusive and chopped up, also sore neck and hands, and moving to take a shower.
7. My favorite medical TV show is: House, ER too but its over:(
8. A gadget I couldn’t live without is: The new jar popper opener that my husband's grandma sent to me. I also could not do without the Cuisinart, that is if I feel like having minced shallots.
9. The hardest part about nights are:Trying to fall asleep when the pain is all I can think about, and then the worry and anxiety that come from knowing I will not get enough sleep and I have to work the next day, and my pain will probably still be there then too. It is like a nightly merry-go-round ride from hell.
10. Each day I take 30ish pills & vitamins. (No comments, please)
11. Regarding alternative treatments I:have explored homeopathy, reflexology, acupuncture.
12. If I had to choose between an invisible illness or visible I would choose: Neither, but in reality probably invisible. At least I can hide it a bit from the general public and those around me.
13. Regarding working and career: Embarking on new job as an assistant in a holistic health practice. It will hopefully be a less stressful environment, and I will be able to use the treatments!
14. People would be surprised to know: That I sing opera, I love to dance, and I write poetry daily, and I love to cook amazingly fun meals.
15. The hardest thing to accept about my new reality has been: The old me has vanished. My limitations keep me from the lifestyle I was used to. There was a lot of activity, and work, and it was good.
16. Something I never thought I could do with my illness that I did was: I am more sensitive to pain in general, mine, but also other peoples pain. This makes me super empathetic, and I have quick insight and am able to help them. It also has caused me, the go go girl, to slow down. There are things I never saw before that I revel in now. I must treasure the moment because the next one might be filled with blindsiding pain.
17. The commercials about my illness: make it look like little aches and pains, not the incredible all encompassing pain that engulfs my entire being, body and soul, and does not let me go sometimes for several days.
18. Something I really miss doing since I was diagnosed is: The desire to be physically active. I loved to dance, do yoga, swim, bike, and hike in the mountains. I can do these things, but just in tiny increments.
19. It was really hard to have to give up: That beautiful glass of Pinot Noir
20. A new hobby I have taken up since my diagnosis is: Knitting, and now lots of internet communication and activity, and a much over due renewed interest in my writing.
21. If I could have one day of feeling normal again I would: Ride all the roller-coasters I could find, drink the wine I want, and dance through the night, and lots of a certain other unmentionable night time activity (wink wink.)
22. My illness has taught me: Patience and the power of solitude.
23. Want to know a secret? One thing people say that gets under my skin is: They offer the new fix for me. If I had a nickle for every time that happened. I need to remember that people want to help, but sometimes I need to just be treated like AnnaBeth, and not this fragile, untouchable thing that is broken.
24. But I love it when people: Do things with me that make me remember who I am at my core, and that the pain is not me.
25. My favorite motto, scripture, quote that gets me through tough times is: Tomorrow is another day ~Scarlett O'Hara, Gone With The Wind
26. When someone is diagnosed I’d like to tell them: Flow, and don't fight. I have spent several years in denial that this is my new reality, thinking that a magic cure will come along. I think I am just now getting to the point that I accept the new me, and am beginning to love the things she is good at (new things) and am patient with the pain. There may be things that come along to help you, but work to be comfortable with the now reality instead of wishing your days away. Treat yourself well, and take what you need.
27. Something that has surprised me about living with an illness is: New things have opened up in my life. My direction may have changed a bit to the left of where I thought I was going, but there are good things to come, and great things I have renewed focus onto that fit into my new living.
28. The nicest thing someone did for me when I wasn’t feeling well was: My husband always checks on me, and will bring water or ice at any moment, and the best part is, he is so happy to help me. It is hard to let yourself be helped, but when I see the cycle of giving and what it does for us, I realize that it is important to need and be needed. He is the most amazing part of each day for me.
29. I’m involved with Invisible Illness Week because: People need to know that just because the illness does not show on the face of the sufferer, we need to be sensitive to the fact that pain or other suffering may be underneath that smile. We do our best to be unobtrusive, however the sensitivity of those around us can be the difference in being able to interact well in the public, and wanting to just hermit into a hole and never come out.
30. The fact that you read this list makes me feel: Like one more person might understand what it means to be invisibly ill, and that creates one more understanding soul out there for me to possibly find each day.
Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com
Sunday, August 30, 2009
Monday, August 10, 2009
Where did I go?
So I fail to blog on here consistently, and I ask myself why? Why the hell can I not keep up? My brain is bursting with so much to talk and think about, and yet I hesitate to do this. I keep from continually talking about the things I know would help for others to read, and for me to mull over in each new post. It helps me to get the thoughts down, and in many cases I figure things out as I write. I feel like I have come to an epiphany by the end of what I have written. So why on earth would I shy away from doing this constantly?
I found a discussion on a forum I visit about finding inspiration for artistic pursuits. The question was about getting going, and the author asked for tips on starting to write about her health, and she said she could not seem to get started, and this came out of me:
How eerie and ironic, but this is my exact state right now. I have just been diagnosed with fibromyalgia (officially, now I believe it has been 14 years), and I strongly believe that my purpose is to write about my experiences to hopefully help others, and help me, by the outlet of the feelings and frustrations, in the process. But I can't seem to do it. I have a blog that has about 5 posts in more than a year, and they are good, and a variety of topics related to pain, and chronic illness. But I cannot seem to keep it going.
And I think recently I have had a realization as to why....so I hope this helps you.... By writing about it, by putting it down, and explaining it and dealing with it, I feel like I am fully acknowledging it, and giving over to the fact that this is my reality. Part of me still is in denial about the fact that my life has be changed, most likely permanently, by my chronic condition....some small tiny girl inside of me, the part that is still 7, thinks that I am invincible, and absolutely fine, or that I will be in the immediate future, and cannot believe anything bad can happen. And how can an intelligent 31 year old woman be this ignorant? I think it is merely the optimism that there is good and that the good will prevail.
I think my remedy to all this is to find the good all over...it does not just have to be within my body. It can be in the beautiful Asiatic lilies on my front porch, the warm summer breeze over my legs, the love I have in my life with my wonderful partner for the journey. I am hoping these things, these beautiful things that are a sign that the good in life does happen, maybe I can accept my physical state, and limitations, and find the good things I can do and be a part of, and in turn use the writing about my struggles to cleanse myself of the pain I experience everyday. And maybe this will give me further strength for the journey and the dealing with it all. Who knows? Alright my thoughts just exploded into your small question for advice...I hope this is in someway helpful. I think it also helps me to write (haha here I am "blogging" about my daily life with my condition) it all down, and put into words the things I am dealing with. I need to think that the writing will help me so immensely, and even though it is an acknowledgment of my pain, by actually seeing it and writing about it this gives me the ability to face it head on, and in a way takes away the power it has through my silence about it.
So this may not make any sense, the ramblings of a crazy girl, but I hope there is something you can find in here to help you....I know it has helped me today.
~~~~~
So I guess I should take this advice....get it out of me, and not let the silence contain the pain within me. If I write a bit about it, perhaps the pain will funnel into the writing, and take away at least some of the emotional stress, and help me understand the experience of the intense pain. Right now I am in a state where my fingers are killing me, but the good thing is, typing uses small movements.
So here is my pledge~~I will write as often as possible about the pain, to accept it as a daily part of my life, and through the writing work to understand its influences, its teachings, and its mysteries. I WILL WRITE. I will be here, and show my pain....I will not hide it anymore. This is my determination
I found a discussion on a forum I visit about finding inspiration for artistic pursuits. The question was about getting going, and the author asked for tips on starting to write about her health, and she said she could not seem to get started, and this came out of me:
How eerie and ironic, but this is my exact state right now. I have just been diagnosed with fibromyalgia (officially, now I believe it has been 14 years), and I strongly believe that my purpose is to write about my experiences to hopefully help others, and help me, by the outlet of the feelings and frustrations, in the process. But I can't seem to do it. I have a blog that has about 5 posts in more than a year, and they are good, and a variety of topics related to pain, and chronic illness. But I cannot seem to keep it going.
And I think recently I have had a realization as to why....so I hope this helps you.... By writing about it, by putting it down, and explaining it and dealing with it, I feel like I am fully acknowledging it, and giving over to the fact that this is my reality. Part of me still is in denial about the fact that my life has be changed, most likely permanently, by my chronic condition....some small tiny girl inside of me, the part that is still 7, thinks that I am invincible, and absolutely fine, or that I will be in the immediate future, and cannot believe anything bad can happen. And how can an intelligent 31 year old woman be this ignorant? I think it is merely the optimism that there is good and that the good will prevail.
I think my remedy to all this is to find the good all over...it does not just have to be within my body. It can be in the beautiful Asiatic lilies on my front porch, the warm summer breeze over my legs, the love I have in my life with my wonderful partner for the journey. I am hoping these things, these beautiful things that are a sign that the good in life does happen, maybe I can accept my physical state, and limitations, and find the good things I can do and be a part of, and in turn use the writing about my struggles to cleanse myself of the pain I experience everyday. And maybe this will give me further strength for the journey and the dealing with it all. Who knows? Alright my thoughts just exploded into your small question for advice...I hope this is in someway helpful. I think it also helps me to write (haha here I am "blogging" about my daily life with my condition) it all down, and put into words the things I am dealing with. I need to think that the writing will help me so immensely, and even though it is an acknowledgment of my pain, by actually seeing it and writing about it this gives me the ability to face it head on, and in a way takes away the power it has through my silence about it.
So this may not make any sense, the ramblings of a crazy girl, but I hope there is something you can find in here to help you....I know it has helped me today.
~~~~~
So I guess I should take this advice....get it out of me, and not let the silence contain the pain within me. If I write a bit about it, perhaps the pain will funnel into the writing, and take away at least some of the emotional stress, and help me understand the experience of the intense pain. Right now I am in a state where my fingers are killing me, but the good thing is, typing uses small movements.
So here is my pledge~~I will write as often as possible about the pain, to accept it as a daily part of my life, and through the writing work to understand its influences, its teachings, and its mysteries. I WILL WRITE. I will be here, and show my pain....I will not hide it anymore. This is my determination
Saturday, May 2, 2009
does singing help or hurt?
As I spend all my possible energy for the day, and the next five in reality, on my concert this evening...I am forced to contemplate the purpose of the singing. My God, I love to do nothing better, and yet these last weeks I have fought and fought to get to rehearsal, work to stay on pitch which now is more difficult that at any other time in my life, and to actually breath. I hold my breath for most of time each day, and I go to sing, and no phrase seems to pass seamlessly without me gasping in the worst spot possible, and that gap will be heard and felt through the line.
All my thinking and musing daily goes toward "how can I sing?" That is all I want, all I want to do, to feel, to be. I think about wanting it constantly, yet I avoid it......the songs in my head which are desperate to be written down grow and grow, and crowd the space in which I try to remember and think....to do things to function properly. The songs want out.....my voice screams at me to be heard, and to work and to grow, and yet I stifle it. It hurts so much to think it all may never be the way I need and want it to be, and I stuff my singing self away....thinking the drive...the intense desire that has been with me since I was so small, will leave me. And then on occasion I try to use it....maybe at school, on a whim for my kids, and it is usually awful, I finish feeling like I failed. It all was likely because the pain in my head was gnawing down through my body....eating me alive. This pain is eating me....each creature it creates in me, the crazy, the insecure, the angry, the sad....eats at what is left of the little girl within who still likes to hope for something better. I feel like she gets smaller every day, going from normal 7 year old size, and dissolving down to a fairy....a tiny fairy with tiny wings, that can barely fly up to where the hope is.
Oh to feel normal....and yet what I think is my worst problem, is that I need to accept this as the new "normal" and I cannot. I cannot give in to being something else.....I know there is good to be found where I am and there are ways to go on and adapt. I am so sick of adapting....so sick of it. I want stasis.....I want a pause button for that moment in the day in my evening, when I am home and comfortable.....when I can lay my poor body down on my wonderful cloud of a body pillow, and be next to my Love, his head on my hip. The two of us so peaceful, and present.....pause....and stay there, till I find another moment I like as well.....and they are there. But as the clock ticks around again to the morning, awfulness creeps into my being even more....dread rules. I dread my morning....and morning should be new and fresh. I never want to go there. I want to live in the evening forever...and maybe it can progress to later in the dark of night....and that is ok, but light may never come. Unless light means that I am in a chair somehwere in the warm sun, sitting and soaking in the rays.....nothing but soaking. I am too unreasonable I know. But my whole state of being now seems unreasonable. It is unthinkable. I defy to be taken over by this pain, this monster that demands my being......and yet all I read and hear is I have to accept it. "acceptance is the first step"....to what to giving in to being something less than I am? I won't......I can't. I need to keep me here. I am getting lost....and more lost each day.
Sometimes I feel like he no longer recognizes me....the part he fell in love with has vanished into the crumpled pile of my body. I work so hard to keep up to where I used to be....to be me, and show me to the world....but I can't do all I want to. I feel like so much of my day, of my work is left undone, and somehow I am running out of time. I have felt like this for a long time....but now it is stronger, and pushes at me so much harder. I need to do.....I need to be, and yet I may get to one tiny item on MY list each day. The list of living and working rules what I can and cannot do.....I am so lost in it all. I need to get back to where I belong. I think the Beatles said that best.
These last weeks.....I have hated to have to sing....this is not me...not me at all....ever. This needs to leave...this hate has to go. I have to find a way to do it. To sing, to be free within my body, to let the songs fly, to create, just me being......this I wish.
All my thinking and musing daily goes toward "how can I sing?" That is all I want, all I want to do, to feel, to be. I think about wanting it constantly, yet I avoid it......the songs in my head which are desperate to be written down grow and grow, and crowd the space in which I try to remember and think....to do things to function properly. The songs want out.....my voice screams at me to be heard, and to work and to grow, and yet I stifle it. It hurts so much to think it all may never be the way I need and want it to be, and I stuff my singing self away....thinking the drive...the intense desire that has been with me since I was so small, will leave me. And then on occasion I try to use it....maybe at school, on a whim for my kids, and it is usually awful, I finish feeling like I failed. It all was likely because the pain in my head was gnawing down through my body....eating me alive. This pain is eating me....each creature it creates in me, the crazy, the insecure, the angry, the sad....eats at what is left of the little girl within who still likes to hope for something better. I feel like she gets smaller every day, going from normal 7 year old size, and dissolving down to a fairy....a tiny fairy with tiny wings, that can barely fly up to where the hope is.
Oh to feel normal....and yet what I think is my worst problem, is that I need to accept this as the new "normal" and I cannot. I cannot give in to being something else.....I know there is good to be found where I am and there are ways to go on and adapt. I am so sick of adapting....so sick of it. I want stasis.....I want a pause button for that moment in the day in my evening, when I am home and comfortable.....when I can lay my poor body down on my wonderful cloud of a body pillow, and be next to my Love, his head on my hip. The two of us so peaceful, and present.....pause....and stay there, till I find another moment I like as well.....and they are there. But as the clock ticks around again to the morning, awfulness creeps into my being even more....dread rules. I dread my morning....and morning should be new and fresh. I never want to go there. I want to live in the evening forever...and maybe it can progress to later in the dark of night....and that is ok, but light may never come. Unless light means that I am in a chair somehwere in the warm sun, sitting and soaking in the rays.....nothing but soaking. I am too unreasonable I know. But my whole state of being now seems unreasonable. It is unthinkable. I defy to be taken over by this pain, this monster that demands my being......and yet all I read and hear is I have to accept it. "acceptance is the first step"....to what to giving in to being something less than I am? I won't......I can't. I need to keep me here. I am getting lost....and more lost each day.
Sometimes I feel like he no longer recognizes me....the part he fell in love with has vanished into the crumpled pile of my body. I work so hard to keep up to where I used to be....to be me, and show me to the world....but I can't do all I want to. I feel like so much of my day, of my work is left undone, and somehow I am running out of time. I have felt like this for a long time....but now it is stronger, and pushes at me so much harder. I need to do.....I need to be, and yet I may get to one tiny item on MY list each day. The list of living and working rules what I can and cannot do.....I am so lost in it all. I need to get back to where I belong. I think the Beatles said that best.
These last weeks.....I have hated to have to sing....this is not me...not me at all....ever. This needs to leave...this hate has to go. I have to find a way to do it. To sing, to be free within my body, to let the songs fly, to create, just me being......this I wish.
Friday, April 24, 2009
like a snowball...
the pain in my hands gets worse and worse as the days go on. I have to wait over 2 more weeks to even talk to the doctor again, and I am upset about that. Typing hurts....playing the piano hurts.....writing with a pencil. I had a hard time opening my toothpaste tube, shampooing my head, and blow drying my hair felt like an epic feat.
I am frustrated that they are making me wait again....he is hoping to see if the procedure works....the procedure that is supposed to work in 2-4 weeks...no wait 4-6 weeks...or if not 6-8 weeks. I love how this all is so flimsily accurate.....and then it never helps at all. I have had no relief to this date....and been worse all over.
The all over pain is getting progressively more from day to day. It used to just be on maybe Sunday, my scheduled bad day, but now its Tuesday, and Friday too. The past 5 days, in the evenings my whole body has hurt. Too much, and not what I had planned. Going through the horror of the procedure was supposed to have helped me.....not sent me on a flying spiral into extended pain. God if it were still only my head.....not that I can even take that. But now......now it is engulfing.
I do not care about a name or a diagnosis, or whatever......I just need help...just need some better days. It is turning into maybe 2 1/2 good days a week. This is not how I am....it is not! So the snowball runs down the hill, gathering more of the wet snow, in layer after layer. And all the time I get smaller and smaller inside the center.....frozen, and still.
I am frustrated that they are making me wait again....he is hoping to see if the procedure works....the procedure that is supposed to work in 2-4 weeks...no wait 4-6 weeks...or if not 6-8 weeks. I love how this all is so flimsily accurate.....and then it never helps at all. I have had no relief to this date....and been worse all over.
The all over pain is getting progressively more from day to day. It used to just be on maybe Sunday, my scheduled bad day, but now its Tuesday, and Friday too. The past 5 days, in the evenings my whole body has hurt. Too much, and not what I had planned. Going through the horror of the procedure was supposed to have helped me.....not sent me on a flying spiral into extended pain. God if it were still only my head.....not that I can even take that. But now......now it is engulfing.
I do not care about a name or a diagnosis, or whatever......I just need help...just need some better days. It is turning into maybe 2 1/2 good days a week. This is not how I am....it is not! So the snowball runs down the hill, gathering more of the wet snow, in layer after layer. And all the time I get smaller and smaller inside the center.....frozen, and still.
Tuesday, April 7, 2009
pain is the sun
So I had this thought....image really....this morning...about the place pain has in my life. It is like pain is the sun that i orbit around. This is awful really, and quite pessimistic, I guess, but this is sure how I feel it works right now. Pain seems to dictate most of what I can do. I am stuck in this wild orbit, and although I may move myself a bit....what I decide to do must revolve around the pain I am experiencing. If I push myself to work, whether its for half the day or the whole day, what I desire to do later is ruled by the sun god of pain....and often the dictate is nothing....i must rest...i must........rest. Sometimes I may write or read while I rest....but more often I must just lay and rest.....I can barely focus on TV much of the time. I zone out completely and do not even know what I am watching. TV is such a waste of brain and time, but it is better at staring at the wall I guess. I need to find some way to feel like a productive human being during these times. Sometimes I draw or doodle...but then my hands hurt. I wish my brain could just create things out of thin air as I think them...the poem would write itself down, or the notes would play themselves. My brain is so stuffed right now for lack of ability to create and move and flow as a human. Where has my living gone to? Its lost in the invisible orbit I keep around the sun of pain.
Monday, March 30, 2009
numero uno
well....i begin. yet this is so far into everything that it is really like starting a novel in the middle and then telling the story while going into the past from time to time. i can start on a better feeling day. Today I went from about an 8 at my max pain, but mostly 6ish. New med....opana...and still figuring out doses. My head is ok now, but the hands and arms are about to be in full flare. This is the new mystery to figure out. I am hoping to get bloodtest results tomorrow, and talk to the doc about meds. But this is where the challenge comes. Will the results be in, or will anyone even call me back? I have not had good luck lately. spring break from school, but still working nights. but my mornings are for relaxing and writing...music, poetry, and drawing. I need to be stingy with that time...if even for a week. I go to bed....seinfeld is on at 10 instead of that horrid tmz....might we see simpsons at 10:30? a girl can only hope...here is wishing for calm hand pain, and sweet dreams tonight!
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