30 Things About My Invisible Illness You May Not Know

September 14, 2009 at 12:04 AM 5 comments

Do you have an Invisible Illness? Welcome to the club!

Groucho Marx, comedian and actor, once said, “I don’t want to belong to any club that will accept people like me as a member.” The Invisible Illness “club” is like that for me. I was invited – against my will – to this club in the summer of 2006. And then, just like Mr. Marx, decided to withdraw my membership. I now live in near/full remission. [Search for “Simla’s Story” on this blog to find posts that go further into details about my life living with and healing from invisible illnesses.]

I’m posting the following “30 Things” as a contribution to highlight the start of National Chronic Invisible Illness Awareness Week 2009 TODAY, Sept 14, 2009. II Week 09 is hosting a 5-day F*R*E*E Virtual Conference with 20 fantastic speakers who are vibrant, well-versed in the art of living with invisible illness, and there to offer you and/or the ones you care about support and encouragement and entertaining, engaging information. Register and attend this conference by clicking here.

30 Things About My Invisible Illness You May Not Know
by Simla Somturk Wickless of
www.enjoydelicioushealth.com

1. The illness I live with is:
Fibromyalgia, chronic fatigue syndrome, immunotoxicity, undifferentiated connective tissue disorder, multiple chemical sensitivity (all in remission – 95% of the time)

2. I was diagnosed with it in the year:
2007

3. But I had symptoms since:
2006, and maybe even years earlier on some of the conditions but wasn’t diagnosed properly

4. The biggest adjustment I’ve had to make is:
Change my career (from management consultant to health & nutrition consultant)

5. Most people assume:
That somehow I’m stronger than they are or that my medical conditions must not have been very serious because I was able to get to the point where I now live in full remission. Both are incorrect.

6. The hardest part about mornings are:
Waking up when my body is not ready to wake up – a feeling of utter and painful exhaustion.
Or if I ate gluten the day before: feeling deeply exhausted and having inflamed, painful joints and soft tissue as a result.

7. My favorite medical TV show is:
Grey’s Anatomy, because of the drama, not the medicine.

8. A gadget I couldn’t live without is:
My laptop.

9. The hardest part about nights are:
Used to be the all-over itching caused by my drug-induced liver inflammation and excruciating nerve pain in my legs. Nowadays, occasional nerve sensitivity in my legs, or if my adrenals are off, insomnia.

10. Each day I take __ pills & vitamins.
Down to about 10 from 45+. WOO HOOOO!

11. Regarding alternative treatments I:
Bet my life on them and I won.

12. If I had to choose between an invisible illness or visible I would choose:
Invisible. I’m a very private person. This way I get to choose how and where I share information about me.

13. Regarding working and career:
You must love the work you do to be truly healthy. I LOVE my work now. It feeds my health and soul. And I wouldn’t have found it had my illnesses not found me.

14. People would be surprised to know:
That I am thankful to my conditions for the strength of self, renewed life purpose, and revised priorities they brought to me.

15. The hardest thing to accept about my new reality has been:
I don’t have all the freedoms I used to have, if I want to live in full remission, such as eating anything I want.

16. Something I never thought I could do with my illness that I did was:
Heal it to where, as long as I manage my triggers well by avoiding or mitigating them, I live pretty much in full remission.

17. The commercials about my illness:
Drive me nuts. Prescription medication should not be advertised on TV.

18. Something I really miss doing since I was diagnosed is:
When I couldn’t walk, it was walking.
When I couldn’t read, it was reading.
When I couldn’t think, it was thinking.
Now, living in remission, it’s the ability to eat whatever I want, as I have to be very mindful of certain foods triggering my symptoms. I’m planning on overcoming that too.

19. It was really hard to have to give up:
Cheese and coffee and wheat, as these are some of the foods that trigger my symptoms.
I’ve regained the ability to do almost everything else that matters to me.

20. A new hobby I have taken up since my diagnosis is:
Blogging! =)

21. If I could have one day of feeling normal again I would:
I now have those days back and I am grateful for every second.

22. My illness has taught me:
That doctors are fallible, that our medical system is very broken, and that it is not designed to deal effectively with chronic, systemic conditions.
That “alternative” medical approaches are my default choices.
That the body, mind, and spirit are all connected and will all heal given half a chance.
That we are healthy when our world is healthy, and vice versa.
That healing requires you to get to know your body and and its signals, to listen to your intuition, to decide to get your health back and then follow through no matter how hard it gets or how many naysayers there are.
That real, beautiful, delicious food is fantastic medicine.

23. Want to know a secret? One thing people say that gets under my skin is:
But you look great! (When I was really suffering. Now it’s ok. =)

24. But I love it when people:
Are patient. When I shuffled vs walked, when I couldn’t be social… my family and true friends came through and showed it in their kind patience.

25. My favorite motto, scripture, quote that gets me through tough times is:
“It’s ok to feel bad, but it’s not ok to feel bad about feeling bad.” (from my husband)

26. When someone is diagnosed I’d like to tell them:
You are not your illness.

27. Something that has surprised me about living with an illness is:
How it can be a blessing in disguise and a huge life lesson (or several hundred).

28. The nicest thing someone did for me when I wasn’t feeling well was:
When I was bed-bound and couldn’t walk for several months, my husband surprised me by carrying me out to the car he had rented (we don’t own a car) and driving me to the beach so we could roll down the windows and I could get some fresh air and sun on my face.

29. I’m involved with Invisible Illness Week because:
It’s very important to me that those living with an invisible illness know and see from others’ experiences that they CAN live well and even heal fully from a chronic invisible illness.

30. The fact that you read this list makes me feel:
Warm and fuzzy, and happy that you took the time to understand a little better. Thank you.

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Entry filed under: autoimmune, cool news, events, fibromyalgia and chronic fatigue, health, hepatitis, holistic nutrition, immunotoxicity, Invisible Illness Awareness Week, living, multiple chemical sensitivity, pancreatitis, Simla's Story, undifferentiated connective tissue disorder, Workshops - Virtual.

Helloooo, Sugar! Meditation for Health and Healing Teleclass – begins Oct. 11, 2009

5 Comments Add your own

  • 1. Sue  |  November 26, 2009 at 1:38 PM

    I can’t begin to tell you how proud I am of you – you are a breath of fresh air!

    I have suffered in the past of the “invisible illness”, however I’m on way back to what I know to be good health. I still have pain in my body – I look forward to the day it is gone. Also, I am now blessed with knowing what NOT TO PUT IN MY BODY!

    God bless you for sharing your story – please do keep on doing so.

  • 2. gangling  |  July 3, 2010 at 1:21 AM

    An inspirational post…thank you…

    From a fellow sufferer of … partly … invisible illness.

  • 3. lisa  |  November 20, 2010 at 1:00 AM

    Hi Simla,

    You are inspirational. Everything is really connected cause I feel my invisible illness as a soul sickness, when our soul is not being fed by meaning.

    Lisa

  • 4. Simla  |  November 20, 2010 at 1:26 AM

    Thanks, Lisa. I very much agree that the soul must be connected to meaning and your true everything – path, beliefs, self, passion – to be truly healthy. Thanks for your post.

  • 5. Simla  |  November 20, 2010 at 1:30 AM

    Gangling & Sue – A very belated thank you for your supportive comments. Lots of love & healing light to you both. =) Simla

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