I spent this afternoon and part of the evening working on this list. I have been experiencing a return of many of my symptoms even though I'm still on break from the 'unmentionables'. At first I found the thought of doing this list overwhelming. Once I got started the thoughts poured out fairly quickly, but it still took a lot of time. Mostly I was surprised by how close I found myself to tears, how raw the emotions were as I typed, and how difficult it was on an emotional level to complete the list.
Here's the idea behind it:
We’ve all seen the list “20 things about me” “50 thing about me you didn’t know…” They can actually be interesting if you want to get to know the person better! We’ll we’ve got one I haven’t seen anywhere yet, “30 Things About My Invisible Illness You May Not Know.”
Just copy and paste it below and put it up on your blog, send it to your friends, paste in on Facebook (if it’s too long put it in your “notes” section.)
It was started by Lisa Copen. Many of my friends have also shared their "30 things..." two of them on their blogs. You can read Rachel's and Kristen's too. I haven't read anyone else's yet because I wanted to write my own first without being intimidated by the others!
It's also showing up on other sites, like the Touched By Lyme blog. People are posting their lists here too.
30 Things About My Invisible Illness You May Not Know
1. The illness I live with is:
Autonomic Nervous System (ANS) Dysfunction/Dysautonomia. I have two forms of this: Postural Orthostatic Tachycardia Syndrome (POTS) and Neurally Mediated Hypotension (NMH).
Chronic Lyme Disease
Partial Diabetes Insipidus
2. I was diagnosed with it in the year: It's been an evolving process filled with diagnoses and misdiagnoses. Final consensus on forms of ANS Dysfunction in 2004. Chronic Lyme Disease in 2005. Partial Diabetes Insipidus final consensus in 2008.
3. But I had symptoms since: 1998
4. The biggest adjustment I’ve had to make is: Everything! The big ones: Not being able to stand, sit or walk for any period of time. Activities have to be done reclining. Being mostly homebound. Being dependent on others.
5. Most people assume: That I if I 'look good', I feel good. That I have a lot of 'extra time on my hands'.
6. The hardest part about mornings are: Mornings? I avoid them if at all possible! The hardest part is getting out of bed b/c I never feel rested or refreshed when I wake up. Also, I take medication at least 30 minutes before I sit up in bed in order to raise my blood pressure enough for me to get up.
7. My favorite medical TV show is: No thank you! I have enough medical drama in my own life and that of my friends who are sick.
8. A gadget I couldn’t live without is: My adjustable Tempur-Pedic bed. I am sure I could 'live without' my other gadgets, but I do love them and they keep me engaged in the world whether it's email, blogging, taking photos, talking on the phone, watching a TV show, or listening to a book on CD (I can't focus to read). So I love my cell phone, TiVo box, Laptop computer, iPod, Radio, CD player, TV, Digital Photo Frame, Electric Toothbrush. :)
9. The hardest part about nights are: Getting to sleep and staying asleep! Loneliness and isolation. The sleepless ones filled with unrelenting ANS symptoms like low BP and forceful heartbeats.
10. Each day I take at least 30 pills & vitamins. (No comments, please)
Note: Some of these are the same medication. For example, I take medication every 3 1/2 hours during the day to raise blood pressure. This is at least 9 of the pills I take each day.
11. Regarding alternative treatments I: am willing to try them, within reason. I view them as a complement to treatment but not the cure. I have tried MANY different therapies over the years, many with no success and others with good success.
11. Regarding alternative treatments I: am willing to try them, within reason. I view them as a complement to treatment but not the cure. I have tried MANY different therapies over the years, many with no success and others with good success.
I eat a wheat-free, gluten-free, dairy-free diet.
I have had excellent success with bodywork over the past 10 years. I have two sessions of bodywork per week and find that I cannot go without these to manage muscle pain and tightness, etc. Currently I get a mix of massage, energy work, myofascial work and cranial-sacral therapy. It's working well for me right now.
I try to be mindful and use guided imagery cds, focus on my breathing, etc.--I so need to do more of this! I love yoga, and do a few simple stretches daily, but have not had enough strength/energy to pursue it further.
12. If I had to choose between an invisible illness or visible I would choose: Probably invisible, only because our society makes it even more difficult if you are 'visibly disabled'. It can be nice to 'pass' as healthy, which I feel terrible even saying. I now use a wheelchair for most of my outings, so this makes my illness more 'visible'.
13. Regarding working and career: I can't even go there.
My full-time job right now is managing my illness and going through the grueling treatment for Lyme disease.
I try to focus on the present because I have no idea what my health will look like in the future. I believe that my journey and experiences now will lead the way when it is time for me to possibly work.
14. People would be surprised to know: That I am always having some sort of symptoms, that I am never symptom-free, that I never feel 'well' even on a 'good day' and that I never feel 'alive in my body' the way I did before I got sick 11 years ago.
15. The hardest thing to accept about my new reality has been: The unknowns and uncertainties of these illnesses. The sense of loss I feel living in a body that cannot do what my spirit so longs to do. Not being a mom is currently at the top of that list.
16. Something I never thought I could do with my illness that I did was: Persevere this long. Use my voice to share about my experience in a way that will hopefully help raise awareness and understanding and bring others comfort.
17. The commercials about my illness: Um, commercials about this stuff? Hard to imagine that!
18. Something I really miss doing since I was diagnosed is: Dancing. The everyday things people do without a second thought--going for a walk, running an errand, driving, going to the grocery, reading, going out with friends, traveling...okay, I'll stop now! Being able to do even the simplest of things without having to think about the consequences on my body.
19. It was really hard to have to give up: The 'picture' of life I had in my head at age 22 when I got sick. So much of my independence. Oh, and Mac 'n Cheese, Pizza and Ice Cream! :)
20. A new hobby I have taken up since my diagnosis is: Blogging. Knitting. Both of these can be done reclining! I'd do a lot more things if there was energy for them.
21. If I could have one day of feeling normal again I would: Spend it in a beautiful place (preferably by the ocean) with people I love. Eat wonderful food, play with Asher, go for a walk, enjoy the sunrise and sunset, drink a glass of wine, dance, laugh a lot, feel the sand between my toes, go in the water. Maybe do something cool like go in a hot air balloon or swim with the dolphins. :)
22. My illness has taught me: That I have no idea what a person has been through or what suffering they have endured just by looking at them. Suffering cannot be 'compared'. Hopefully I have learned to be more empathetic, compassionate, loving, and patient. As someone who wanted to go into medicine, I've learned a very different side of things--through a patient's eyes.
23. Want to know a secret? One thing people say that gets under my skin is: I don't like platitudes. At all.
24. But I love it when people: Read my blog. Have empathy. Just let me know they are thinking about me--an email, card, or phone message can change the entire trajectory of my day.
I just listened to The Girls From Ames on CD and thought this quote was perfect (from one of the women going through chemo):
"Never doubt the power of phone messages, cards, or emails when someone is going through a tough time. Even the briefest of messages have reminded me that I am never alone..."
25. My favorite motto, scripture, quote that gets me through tough times is:
"Hope is the thing with feathers that perches in the soul and sings the tune without words and never stops at all." -- Emily Dickinson.
"Dance is the Hidden Language of the Soul" by Martha Graham. I like to think that my spirt still dances even though my body cannot.
26. When someone is diagnosed I’d like to tell them: What a wonderful doctor told me that changed my life, "Listen to your body. And never take no for an answer."
I'd like to tell them that those of us who have travelled before them will hopefully make the road a little easier for them and that they are not alone.
27. Something that has surprised me about living with an illness is: That the emotional challenges are as great or greater some days than the physical ones--the sense of grief, loss, isolation, loneliness, guilt, worthlessness, uselessness, etc. that go along with being chronically ill. How uncomfortable so many people are with it. That it's a full-time job. That it affects EVERYTHING in my life and my family's life.
28. The nicest thing someone did for me when I wasn’t feeling well was: I've been very blessed in this department, especially by my parents and Abbie. I wouldn't know where to start with all of the nice things they do. My mom will always make homemade chicken soup when I need it. My parents will both stay the night with me and hold my hand through things. Mostly the little things like phone calls, emails, flowers, and snail mail keep me going when I don't think I can go anymore. I love when my friends and family include me the world that I so often feel left out of--like keeping me in the loop with photos and news, coming to visit, asking me to be in a wedding, asking me to be an aunt to David, etc.
29. I’m involved with Invisible Illness Week because: One of the ways I survive is by hoping that my experience will somehow make the experiences of those who follow easier. I think raising awareness about invisible illness is incredibly important if those who are chronically ill are to receive better care, support, compassion and understanding and less isolation, loneliness, and stigma.
30. The fact that you read this list makes me feel: Humbled and grateful.
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
12. If I had to choose between an invisible illness or visible I would choose: Probably invisible, only because our society makes it even more difficult if you are 'visibly disabled'. It can be nice to 'pass' as healthy, which I feel terrible even saying. I now use a wheelchair for most of my outings, so this makes my illness more 'visible'.
13. Regarding working and career: I can't even go there.
My full-time job right now is managing my illness and going through the grueling treatment for Lyme disease.
I try to focus on the present because I have no idea what my health will look like in the future. I believe that my journey and experiences now will lead the way when it is time for me to possibly work.
14. People would be surprised to know: That I am always having some sort of symptoms, that I am never symptom-free, that I never feel 'well' even on a 'good day' and that I never feel 'alive in my body' the way I did before I got sick 11 years ago.
15. The hardest thing to accept about my new reality has been: The unknowns and uncertainties of these illnesses. The sense of loss I feel living in a body that cannot do what my spirit so longs to do. Not being a mom is currently at the top of that list.
16. Something I never thought I could do with my illness that I did was: Persevere this long. Use my voice to share about my experience in a way that will hopefully help raise awareness and understanding and bring others comfort.
17. The commercials about my illness: Um, commercials about this stuff? Hard to imagine that!
18. Something I really miss doing since I was diagnosed is: Dancing. The everyday things people do without a second thought--going for a walk, running an errand, driving, going to the grocery, reading, going out with friends, traveling...okay, I'll stop now! Being able to do even the simplest of things without having to think about the consequences on my body.
19. It was really hard to have to give up: The 'picture' of life I had in my head at age 22 when I got sick. So much of my independence. Oh, and Mac 'n Cheese, Pizza and Ice Cream! :)
20. A new hobby I have taken up since my diagnosis is: Blogging. Knitting. Both of these can be done reclining! I'd do a lot more things if there was energy for them.
21. If I could have one day of feeling normal again I would: Spend it in a beautiful place (preferably by the ocean) with people I love. Eat wonderful food, play with Asher, go for a walk, enjoy the sunrise and sunset, drink a glass of wine, dance, laugh a lot, feel the sand between my toes, go in the water. Maybe do something cool like go in a hot air balloon or swim with the dolphins. :)
22. My illness has taught me: That I have no idea what a person has been through or what suffering they have endured just by looking at them. Suffering cannot be 'compared'. Hopefully I have learned to be more empathetic, compassionate, loving, and patient. As someone who wanted to go into medicine, I've learned a very different side of things--through a patient's eyes.
23. Want to know a secret? One thing people say that gets under my skin is: I don't like platitudes. At all.
24. But I love it when people: Read my blog. Have empathy. Just let me know they are thinking about me--an email, card, or phone message can change the entire trajectory of my day.
I just listened to The Girls From Ames on CD and thought this quote was perfect (from one of the women going through chemo):
"Never doubt the power of phone messages, cards, or emails when someone is going through a tough time. Even the briefest of messages have reminded me that I am never alone..."
25. My favorite motto, scripture, quote that gets me through tough times is:
"Hope is the thing with feathers that perches in the soul and sings the tune without words and never stops at all." -- Emily Dickinson.
"Dance is the Hidden Language of the Soul" by Martha Graham. I like to think that my spirt still dances even though my body cannot.
26. When someone is diagnosed I’d like to tell them: What a wonderful doctor told me that changed my life, "Listen to your body. And never take no for an answer."
I'd like to tell them that those of us who have travelled before them will hopefully make the road a little easier for them and that they are not alone.
27. Something that has surprised me about living with an illness is: That the emotional challenges are as great or greater some days than the physical ones--the sense of grief, loss, isolation, loneliness, guilt, worthlessness, uselessness, etc. that go along with being chronically ill. How uncomfortable so many people are with it. That it's a full-time job. That it affects EVERYTHING in my life and my family's life.
28. The nicest thing someone did for me when I wasn’t feeling well was: I've been very blessed in this department, especially by my parents and Abbie. I wouldn't know where to start with all of the nice things they do. My mom will always make homemade chicken soup when I need it. My parents will both stay the night with me and hold my hand through things. Mostly the little things like phone calls, emails, flowers, and snail mail keep me going when I don't think I can go anymore. I love when my friends and family include me the world that I so often feel left out of--like keeping me in the loop with photos and news, coming to visit, asking me to be in a wedding, asking me to be an aunt to David, etc.
29. I’m involved with Invisible Illness Week because: One of the ways I survive is by hoping that my experience will somehow make the experiences of those who follow easier. I think raising awareness about invisible illness is incredibly important if those who are chronically ill are to receive better care, support, compassion and understanding and less isolation, loneliness, and stigma.
30. The fact that you read this list makes me feel: Humbled and grateful.
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
Photos: Image taken from www.invisibleillness.com; Sedum with bee in our backyard.
