Invisible Illness Week – 30 things you may not know…
Posted Sep 11 2012 4:53pm
September 10 -16 is National Invisible Awareness Week – If you’d like to get involved check out the official site .
30 things about my illness you may not know.
(warning, some answers may give too much information, but it’s not detailed)
See, I don’t look sick. This photo was taken in 2009, right before my first ear surgery.
The illness I live with is: The main illnesses I live with are Meniere’s, chronic Migraines, Bipolar I disorder, and chronic hip and pelvic pain. If you are interested in my other illnesses please see the the tab above titled The Ants That Bite.
I was diagnosed with it in the year: I don’t remember any more. I think I was diagnosed with Meniere’s in 2001, Migraines (I’m not really sure, I’ve had doctors tell me on and off since my teens that I have migraines, but they became chronic in my late 20′s…I’m 49 now), chronic hip pain and pelvic pain – they haven’t figured out what is causing all the pain, so no diagnosis. Bipolar I – 1990 then was told they were wrong – re-diagnosed in 1994.
But I had symptoms since: Meniere’s – the first attack I remember was in 1993. Migraines – the first one I remember, I was 11. The pelvic pain – in my early 30′s, in the mid 1990′s. The hip pain – 2008. Bipolar – in my teens.
The biggest adjustment I’ve had to make is:These are a few major ones for me…. Losing my hearing.Not being able to drive. Not seeing my friends like I used to. Realizing that I will never be cured. Not being able to have a sex life without pain. (but I’ve dealt with, or am dealing with all of these. They will not keep me down.)
Most people assume: I can do much more than I can, after all, I don’t “look” sick. And some assume I use my illness to get out of social situations, but honestly I hate being so solitary
The hardest part about mornings are:Never knowing what the day will bring. I often wake up with a blinding headache, I know what that day will bring. But if I wake up feeling decent I never know if I’ll continue to feel that way, or if I’ll be hit with a Meniere’s attack or Migraine. However, I try to make the most out of every day.
My favorite medical TV show is: Ummm, funny, I used to watch some medical TV shows, but I don’t any longer. I think I see too much of the medical community in person.
A gadget I couldn’t live without is:I suppose I could “live” with out most gadgets, but there are some I wouldn’t want to! My Cochlear Implant, I can hear so much more now. My laptop -so many of my friends are in there!
The hardest part about nights are: Trying to sleep, and trying to stay asleep. Fear. Fear of having an attack just as I’m falling asleep (this happens more than I’d like to admit), fear of waking up with a blinding headache……However, each night before I sleep I acknowledge my gratitude for the day, and plan what I’d like to do the next day. I always have hope I will have a good day, and if I don’t I still know I’ll get something out of it.
Each day I take __ pills & vitamins. (No comments, please)18 daily (this included the total number, not different medications), 5 as needed, 4 vitamins daily, and one B12 shot a week.
Regarding alternative treatments I: have tried many, including chiropractic, acupuncture, certain vitamin routines…. I found medical massage helps my migraines and hip pain a lot. I also use a special diet to treat gluten and fructose intolerance.
If I had to choose between an invisible illness or visible I would choose: I don’t think anyone would choose to have an illness, but I’ll deal with the hand I’ve been dealt.
Regarding working and career:I don’t work. I don’t have a career. Takes a lot out of conversations with others. My doctor suggested I look into filing for disability, but I haven’t done it yet.
People would be surprised to know:I often don’t wash my hair for a month or more. Water on my head is a trigger for me, especially if I have to close my eyes. Luckily, my hair is pretty dry, and it’s long so I just tie it back.
The hardest thing to accept about my new reality has been: There are a lot of times I have to say” I can’t” or “no” to people…and to myself.Losing most of my independence. Not being able to drive. And not being able to have a normal sex life.
Something I never thought I could do with my illness that I did was:Find the positive. Become my own advocate.Fire a doctor.
The commercials about my illness:The only one of my illnesses I’ve seen commercials for is Migraines. Commercials are always drug companies wanting you to talk to your doctor about their drug. I’m not comfortable with this, and normally the side effects they list are pretty scary.
Something I really miss doing since I was diagnosed is: I miss being able to go places alone. (the answer to this question changes often, but right now, not being able to go anywhere alone is very difficult.)
It was really hard to have to give up: My hearing. Even with technological help, I have a cochlear implant (CI) and a hearing aid, it is still very hard to hear at times. I know my hearing with the CI will get better, but it has been very hard to loose all my hearing in one ear, and almost all of it in the other. Without technology, I can’t hear anything.
A new hobby I have taken up since my diagnosis is:Blogging. Reading a lot! I’ve always liked to read, but now it’s almost an obsession. (thank you to Kym for my Kindle! Oh. another gadget I wouldn’t want to live without.)
If I could have one day of feeling normal again I would:I would be so very thankful!! Then I’d spend a day pampering my husband, in and out of bed. ; )
My illness has taught me:To be my own advocate. To be more tolerant…I thought I was tolerant before, but I realize I needed a wake up call on that one.That I’m not alone….this one relieves me because I needed to feel that someone understood, but it makes me so sad that others have to go through what I have. And that I can handle much more than I ever thought I could.
Want to know a secret? One thing people say that gets under my skin is:Any form of, telling me I’ll get better. “When you get better….”, “You will beat this….” NO, I won’t. This doesn’t go away. I may be able to find something to make it more tolerable, but it will never go away. And often treatments that work, stop working. I also hate it when people say, “You don’t deserve this” I know they are trying to be kind….but I never thought I deserved this! And one more….”But you look so good.“
But I love it when people:Tell me how they are doing, want my opinion, want to talk to me as a friend…..Don’t get me wrong, I don’t mind if someone asks about my illness, if they are interested and want to know more about it. But, sometimes I feel like people forget I’m anything more than my illness.
My favorite motto, scripture, quote that gets me through tough times is:This may not be the life I expected, so I’m changing my expectations. I don’t know if this is a quote or anything, it’s simply something I thought one day and it has helped me through accepting a lot of things that have had to change.
When someone is diagnosed I’d like to tell them:Often people who have been recently diagnosed find my blog and it scares them, so I start off telling people: Everyone’s journey with Meniere’s is different. Most do not get to the stage I’m at, so please don’t think you are going to lose your hearing….or any number of things I’ve been though. I’m in the very rare group. I let them know there are many treatments to keep Meniere’s under control, and point them to sites and other bloggers who can give a different perspective. Most importantly, I assure them, they are not alone. They can contact me any time, and there are online groups.
Something that has surprised me about living with an illness is:That my husband and I have gotten even closer. Thank you to our therapist, I think having to go to a therapist about all of this surprised me too. I was not handling losing my independence very well, and hubby wasn’t communicating very well. But by going to a therapist we began to communicate out needs much easier, and recognize our needs. Another big surprise is that people will reach out to me. I’m very surprised that I’ve touched people, and made some honest friendships with people I’ve never met.
The nicest thing someone did for me when I wasn’t feeling well was:(This does not include things my husband does for me) Come to visit me. It doesn’t happen often, but I do enjoy other people’s company. I hate that I often have to cancel when someone wants to do something with me. I’m already so isolated, and if I have to cancel people often think I don’t want to see them, or I’m just too much trouble. I don’t blame them, most of my friends have families, and they have to work their schedule around a lot of things. So missing a visit makes it harder to make plans the next time.
I’m involved with Invisible Illness Week because:Because I have more than one. Some people I love and care about have invisible illnesses. We need to let people know we are still people, but don’t judge us by how we look.
The fact that you read this list makes me feel: That you care, and maybe you understand some things about me you didn’t before.