30 Things About My Invisible Illness You May Not Know

http://networkedblogs.com/6IWIn

1. The illness I live with is: Bipolar Disorder, Narcolepsy, Fibromyalgia

2. I was diagnosed with it in the year: 1992, 2005, 2006

3. But I had symptoms since: Forever, Forever, 2003

4. The biggest adjustment I’ve had to make is: Everything. My whole life has had to be rescheduled around my illnesses. My job, my relationships, my hobbies, everything.

5. Most people assume: Nothing is wrong with me. Outwardly I don't look sick, they see someone who holds down a full-time job, raises a family, and still has a life. They don't see all the things I sacrifice to have what I do.

6. The hardest part about mornings are: Getting out of bed. I am always exhausted, get little to no sleep, and hurt everywhere. Once I am out of bed doing my hair is often a chore. I have a torn rotator cuff and it makes blow drying and straightening something I have to work at.

7. My favorite medical TV show is: Grey's Anatomy

8. A gadget I couldn’t live without is: my blackberry

9. The hardest part about nights are: The long endless hours where I can't sleep and all I do is lay and stare at a wall, or rub at a sore spot and cry while trying not to wake up my boyfriend.

10. Each day I take 11-15 pills & vitamins. (No comments, please)

11. Regarding alternative treatments I: do Yoga and Dance, exercise like crazy, have tried and wish to try again acupuncture, take herbal and nutrition supplements for my bipolar disorder.

12. If I had to choose between an invisible illness or visible I would choose: How can you pick one? Any illness has its ups and downs. I don't want to be ill at all. I feel lucky for not being any worse than I am.

13. Regarding working and career: I work full time in a field I have no interest in because that is what suits the schedule I have to keep. I miss tons of work and thankfully have an understanding company who is just happy that all my work is done and done well. I often make myself ill trying to work full time and then have to sacrifice time with my family to rest or recover.

14. People would be surprised to know: How hurt I really get by casual dismissive comments. I never let it show on the outside but I have been really wounded by the way some people have behaved towards me and my disabilities.

15. The hardest thing to accept about my new reality has been: the sacrifices. The things I have to give up or parcel out in increments. Having to try to explain to my kid why I can't do something with them breaks my heart.

16. Something I never thought I could do with my illness that I did was: raise a child. I've been a nanny in the past but I still wasn't sure I would ever be able to be a mom. But I have been very lucky and have a wonderful step-son.

17. The commercials about my illness: are kinda silly. Especially the bipolar or depression ones. Everything seems to take place in a rainy dreary atmosphere with moping women and sad looking family members. It gets a little soap-opery. The fibro commercials seem pretty spot on sometimes. I've never seen a narcolepsy commercial.

18. Something I really miss doing since I was diagnosed is: surfing. Since the fibro and rotator cuff tear I have not been able to get back on a board yet though I am still hopeful for the future. My balance has been really affected and I can't currently paddle with my shoulder busted up.

19. It was really hard to have to give up: having a wacky schedule. I used to come and go whenever I wanted to, travel when I wanted to, now everything has to be so regimented and planned. It gets a little boring.

20. A new hobby I have taken up since my diagnosis is: running. I was never a runner before but now I love my treadmill and use it as my primary source of cardio. I never thought I would like running.

21. If I could have one day of feeling normal again I would: go to the ocean and paddle out on a surf board.

22. My illness has taught me: to appreciate the little things. To let go of some things and not get so worked up. To really cherish the wonderful people in my life.

23. Want to know a secret? One thing people say that gets under my skin is: You take too many pills. Like I have a choice. Like being in pain and out of my mind, and asleep all the time is a viable option for every day living.

24. But I love it when people: compliment my hard work and acknowledge how much harder I may have had to work for something an able-bodied person wouldn't have. It's nice to know people notice my efforts and appreciate what I do.

25. My favorite motto, scripture, quote that gets me through tough times is: I don't have one. I kinda think that's just silly. As if some magical phrase will make me feel better.

26. When someone is diagnosed I’d like to tell them: don't let it be the end of your world. There is so much more out there and so many ways to get around or overcome obstacles. And don't push people away. Keep loved ones close cause when you need someone to lean on, they'll be there.

27. Something that has surprised me about living with an illness is: how many more people are just like me. It is gratifying to know I am not alone and so many more have gone before me and succeeded.

28. The nicest thing someone did for me when I wasn’t feeling well was: I can't begin to narrow this down to one thing. My family and friends have made this all bearable. The nicest thing they've done is be themselves, be there for me, help me every day and not abandon me during the worst times.

29. I’m involved with Invisible Illness Week because: I feel more people need to be aware of the people every day around them struggling with a disability. Even the ones they can't obviously see. You never know who might need your help or understanding.

30. The fact that you read this list makes me feel: appreciated and heard.

No sleep til...

Another death. More stress and worry. More illness. This is overwhelming. For the first time in 31 years I am voluntarily considering counseling. My history with therapy is not pretty but I think I may need it. My sleep cycle is completely ruined. My mood is low. My stress is high. It is time to ask for help.

Playing Catch-up

I've been in a funk the last month. Between unbelievable actions at work which have made me lose a lot of respect for certain individuals and a month long bout of bursitis pain in my hip I am one unhappy camper.

When I cycle downward to a depressed state because of my bipolar disorder I know what to do, how to deal. But this malaise I am feeling in regards to real life events which I have no control over...I don't know what to do with that. It is a singularly unpleasant feeling.

I have to find a way to combat the suck ass events going on right now.

Aftermath

An acquaintance has committed suicide. I don't even quite know how to process this. It was unexpected. I feel I am taking it harder than I should. I feel maybe I am taking it so hard because of my own history of suicide attempts. I don't know. This is just a really awful Thursday.

My Weekend

I don't really want to talk about it. But it def involved me yelling fuck off at Jeff in the middle of a restaurant in front of his parents.

In retrospect it's kinda of funny. In a totally inappropriate way.

So Apparently Sleep is Important

Between Fibro pain and Bipolar hypo-mania moments (Brought to you by off-brand corn flakes! Buy some today!) sleep is a rare commodity. I am piecing together my day in a series of naps, fitful starts/stops, and full blown insomnia at night. My room is looking cleaner than ever. But I came into work late with shakes so bad I couldn't hold my drink without sloshing.

Trick-or-Treat

Hypo-mania is always such a mixed bag for me. On the one hand, I'm cycling, which can't be good. It throws my sleep schedule off. Makes me bouncy and irritable. I am prone to shouting. Everything stresses me out.

However, I am also tearing through projects at work. Getting out more and being social. Making up for lost time with my friends. Feeling the pain of my fibromyalgia less. (I don't think I am in less pain, I just generally don't notice it as much.)

Is it possible to be this ecstatic/happy and worried/panicked at the same time? Apparently for my hamster-wheel run brain it is.

This is made simpler and more hard by the fact that I am not currently medically treating my bipolar disorder. I take absolutely no stabilizing medications. I have had bad reactions to almost all of them so gave up on them 3 years ago.

I watch what I eat, where I go, who I talk with. I make myself have a regular as fiber weekly schedule. I go to bed and wake up at the same time almost every day. Or at least I did. This use to be enough. But with this upward swing I may need more help again.

The Ides of Insanity

So I am in the middle of it now. Straddling the fence between my version of normalcy and full-blown-toddler-temper-tantrum, otherwise known as mania. I have a complete lucid awareness of the exact moment I become unaware and my mouth runs amok. So far it is only my mouth getting me in trouble, not so much my actions. But don't worry! My actions will catch up eventually! How comforting.

I feel like the rational and calm versions of me are like security guards in my head and they've just been bribed or over-powered. Now the inmates (potty-mouth, inappropriate sharing, paranoid jealousy, and violent tendencies) are rioting. They've set fire to their cells and are screaming for blood.

Dilusional Wishes

It has been 3 years with no major episode. A tiny irrational part of my mind started to think that maybe my bipolar disorder had spontaneously cured itself. The rational part of me knows that to be false. Unfortunately the rational side of me is a weakling and got beat up by my dilusions on the playground.

Now I am cycling up. I have the focus of a 5-year-old on a sugar high. This is doing wonders for my career. Maybe I'll be promoted to "that person who yells things at everyone" though I am not sure that title exists in the company. Or maybe someone in billing has already filled that position. I'll be sure to make inquiries with HR.