My first post for Invisible Illness Awareness Week 2009! IIAWeek is Sept 14-20th this year, which includes my birthday, the 19th!  To warm up our audiences, as it were, they’ve started posting some blog challenges for us to fill out.  Here’s the first one (I think, at least it’s the first one I have seen…please let me know if I have missed any and I will go back and add them later!)

This post is MUCH whinier than I usually write, but since it IS about awareness I chose to be brutally honest.  I usually hide the worst stuff since people don’t like reading stuff that brings them down.  You have been warned…

1. The illness I live with is: I have too many to count but the biggies are Hypermobility Syndrome/Ehlers-Danlos Syndrome (Hypermobility Type), Fibromyalgia, Postural Orthostatic Tachycardia Syndrome, Type II Diabetes, Migraines, Allergies, Food Intolerances, Asthma, Irritable Bowel Syndrome, Irritable Bladder Syndrome, Vulvodynia, Psoriasis, Sebhorreic Dermatitis, Cyclical Major Depression, Generalized Anxiety Disorder, Panic Attacks, Attention Deficit Disorder and many more…

2. I was diagnosed with it in the year: The “big” diagnosis was the Hypermobility Syndrome, I was given a tentative diagnosis in 2001 but it took til 2005 to get that confirmed by a big kahuna specialist. But I already had allergies, asthma, IBS, Depression, ADD and other things before 2001.  I’ve never been what you’d call “well” but since 2005 I’ve gotten a new diagnosis almost every year, lucky me.  Once I get over the shock and grief of one major illness coming at me I get hit with another.  I’m determined to make it through 2009 without any new diseases, thank you!

3. But I had symptoms since: I have permanently dislocated kneecaps so technically my first symptoms of Hypermobility Syndrome came in the womb. I got allergies at around 10 and depression by 11.  I first had pain from the Hypermobility Syndrome at 12 but the doctor ignored it.

4. The biggest adjustment I’ve had to make is: Giving up my legal career and previously very active social life plus living in pain every moment of every day.

5. Most people assume: I have tons of time on my hands to do whatever I want.  Yeah, right, I have tons of time to lie in bed because that’s all I can manage to do.

6. The hardest part about mornings are: I. don’t. do. mornings. But the hardest part about waking up is usually the stiffness and then having to test my blood sugar (if I’m doing it that day).  A pricking pain is a great way to start the day, hey?

7. My favorite medical TV show is: Uhm, I don’t watch any now really. Maybe D-Life, I sometimes watch that, it’s a non-fiction news format show about Diabetes.  I used to watch House but it got old.

8. A gadget I couldn’t live without is: My husband’s iphone  I WANT ONE!  Otherwise I guess I’d say this laptop that I have borrowed and my heating pad.  Definitely the heating pad is a life or death gadget!!

9. The hardest part about nights are: Insomnia — being too tired to move but unable to sleep — and/or being in too much pain to sleep.  Wicked nightmares thanks to the drugs aren’t my cup of tea either.

10. Each day I take __ pills & vitamins. (No comments, please) 4-7 diff kinds of pills, 2 vitamin pills, Vit D and Omega 3

11. Regarding alternative treatments I: I know most of them don’t work but after 25 years of chronic illness I will try anything I can afford. (Which is little ) Offers of freebies or coupons for acupuncture or massage greatly appreciated!

12. If I had to choose between an invisible illness or visible I would choose: I have both, plus my invisible Hypermobility Syndrome has become visible because I need mobility aids to walk (cane/rollator/wheelchair depending on the day and the planned activities).  They both have drawbacks.  I’d choose whatever illness has no symptoms, especially not pain or fatigue!!

13. Regarding working and career: I gave up on that entirely for a while.  Now I’d just like to do a leeetle bit of something, probably writing, now and then.  But law went right out the window — too stressful.  So now I’m looking at the craft world.  I’d love to write a book about crafting with chronic illness through craft but for now I am just starting a podcast on the subject!

14. People would be surprised to know: How much time I spend in bed daily.  A minimum of 14 hrs, but 18 is not unusual.  And even with that I am usually too tired to think straight or do much physical activity the rest of the time, though I try to be as active as possible.  (I need to go back to pacing once I am finally finished with this epic international move :/)

15. The hardest thing to accept about my new reality has been: The isolation.  People — not just those with ADD although we are a lot worse about it — tend to have an “out of sight, out of mind” thought process.  So if they don’t see you around you slip to the back of their minds.  They almost forget you exist.  So if you can’t come to them, you cease to be in their memory banks.  And thus they stop communicating…. You lose so many of your friends and acquaintances, either through their neglect or because you can’t keep up with correspondence or handle speaking on the phone or your house is too much of a mess to have people over.  Or in my case, all three.  I make a very crap friend since I have so little energy for other people, yet I crave attention and energy *from* other people.  I know it’s not fair of me so I try not to be that constantly needy clinging person that most of us dislike.

16. Something I never thought I could do with my illness that I did was: I did a 5K walk for fibromyalgia last year!!  It was *hard* but worth it and I raised over $200.  I was unable to do it this year because I was flying out to move to the US three days later and was frantically packing up all of my worldly goods.  (Which actually I failed to finish so my husband — poor, beleaguered and beloved soul — had to finish packing my stuff for me.) I definitely want to try to do it next year and I think it will be a bit easier now that I have a rollator.

17. The commercials about my illness: Are funded by drug companies.  The fibro ones were controversial and brought out the “it’s not a real illness” journalists.  So while I like people learning about my illnesses, I don’t like it when it just leads to more doubters.

18. Something I really miss doing since I was diagnosed is: TMI. Sorry, keeping this G-rated. Use your imagination.
19. It was really hard to have to give up: Coca-Cola.  All sugary beverages, almost all pre-packaged food, nigh all of my childhood favourites like Chef Boyardee.  I had to give up a LOT of my favourite foods with my food and MSG intolerances, but then the diabetes came and took away a lot of sugary and carby foods too.  Every day is a struggle to find something for me to eat that isn’t just vegetables, and I don’t like vegetables.

20. A new hobby I have taken up since my diagnosis is: I’ve dramatically expanded my craft repertoire! I’ll try any craft that exists!  (Send me free supplies for my The Sick Chick Crafts for Causes charity program, please!) And send me books so I can learn even more crafts!

21. If I could have one day of feeling normal again I would: Learn to scuba dive and just generally enjoy the ocean!

22. My illness has taught me: Everyone has something about themselves they don’t like and yet society still thinks ill of so many problems people do have.  I find this so hypocritical.  It’s also taught me that I have to stay positive and give love wherever I can!  (Even to you, whoever you are, I am doing loving-kindness mantras as I type this!)

23. Want to know a secret? One thing people say that gets under my skin is: “You’re so brave!”  Honey, it’s not bravery when it’s all you can do. I have to go forward with my illness because I don’t believe in suicide (not that I haven’t been to that point a lot) and so what else is there to do but go on as best I know how??  That’s not bravery, that’s just one foot in front of the other.

24. But I love it when people: Send me cards and presents and emails!  Email thesickchick at gmail dot com or send pressies to The Sick Chick, PO Box 904, Cary, NC 27512-0904 USA!  Sorry, that was tongue in cheek, which doesn’t read well on the internet.  But I DO love pressies anyway!! Unfortunately, I am pretty bad at reciprocating due to lack of energy and/or funds

25. My favorite motto, scripture, quote that gets me through tough times is: I just heard this recently and I screamed “Yes!” The saying is “I do not have to earn the right to exist!” For a long time I thought I didn’t deserve to exist (see being suicidal, above) because I didn’t contribute anything to society and was just a burden and drain.  I’m doing better now, both in contributing AND in realizing that I am just how my Creator made me and there has to be some higher purpose to my being the way that I am.

26. When someone is diagnosed I’d like to tell them: Never give up, Never surrender!  Keep trying and trying to find what works best for you.  It CAN get better, but if you have a negative attitude (that you’ll never get better, that no treatments will work for you, etc.) all the time you’ll just spiral down like I did.  You *will* grieve — for your lost life that you have to give up, for the future that you will no longer realize, and for the person you thought you were. Give yourself time to grieve but do everything you can to get into a positive headspace.  It makes a huge difference!

27. Something that has surprised me about living with an illness is: How many people think that you can get better if only you had more willpower.  Ugh! Or who think that I must have some subconscious reason for wanting to be ill thus I am keeping myself down.  Double ugh!  I didn’t know people even thought that way, I mean few people accuse you of causing your own cold, for example! (OK some do, but they’re not mean about it.)

28. The nicest thing someone did for me when I wasn’t feeling well was: t (my husband) organized a *lovely* 10th anniversary trip to Cornwall when I was really splat and couldn’t even stay awake long enough to organize anything.  It was such a wonderful weekend!!

29. I’m involved with Invisible Illness Week because: People need to know the reality of invisible illnesses, and maybe then we can end the stigma.  Why should someone look down upon me or think ill of me (“pun” intended) just because I have a disease or twenty?  Let’s end this stigma, for both physical AND mental illnesses!!!!!

30. The fact that you read this list makes me feel: Pensive.  I’m not sure why you’re here — are you an Able-body truly wanting to learn more? Another sick chick looking to compare notes?  Or a skeptic looking for people to criticize?  And what did you think of what I wrote — are you enlightened or put off?  Will you come back to read more or write me off as a whiny looney?  It’s hard to come out with the truth — especially the whole truth — about my illnesses, and it leaves me vulnerable and open.  But I believe that we MUST come out if we are to change the way the world sees us, and thus, I do….

Wow, that’s an awful lot of words.  And it’s past my try-to-sleep time.  So that’s all for now.  See you when the next challenge is issued or when I have something else to say on my quest for healing.  Goodnight.

Unfortunately, my lovely blog with custom photos and cute niceties seems to have disappeared without a trace.  No backups, no nothing.  Drat!  I wanted to be up and ready in time to start blogging for Invisible Illness Awareness Week — the blogging part of which has already started and I’m behind.  So please bear with me and pardon my dust, I hope to make this prettier and more user friendly over the next few days — health permitting as always!