Posts filed under ‘undifferentiated connective tissue disorder’
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:
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:
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:
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.
National Chronic Invisible Illness Awareness Week 2009
F*R*E*E 5-Day Virtual Conference
September 14-18, 2009
Do you live with an invisible illness or have it in the family? Cancer, Diabetes, Fibromyalgia, Lyme Disease, Lupus, Irritable Bowel Syndrome, Depression… they’re all invisible… they’re all very real.
Join one or join all 20 free seminars, for F*R*E*E! Get inspired and get tons of tips on living with an invisible illness, or join with a family member / friend to show support.
I’ve been procrastinating again. I finished a book, started another one, woke up at 5am because I had half a glass of red wine last night for the first time in ages, lay awake in bed for two hours, worked out for 1.5 hours morning, chatted with a neighbor, chatted with another neighbor, made tea, made breakfast, watched a cat catch and eat a bird, doodled on some other social networking site. Now I’m writing this paragraph. Everything to keep myself from starting to write about what I really need to write about: my how-I-got-really-really-sick-and-how-I-got-well-again story.
I know part of why I don’t want to do this: I don’t want to relive it, I don’t want to focus on the negative (I never do!), as I’ll have to do when I write. But there’s something else nagging at me and I haven’t figured that one out yet.
But it’s time. And as much as I’m dragging my fingers right now, I know I’ll gain steam when I get started. So here I go!
3 years ago I felt like my life was over. Almost everything I had worked so hard for – my 10-year career including a prestigious master’s degree, my fit body, my intellect – went up in proverbial smoke. I couldn’t walk, I couldn’t work, I couldn’t think, remember things, or feel anything but pain all over. On the outside, I looked fine most of the time. But my body, my head, and my insides felt like they were crumbling.
Literally overnight, years of chronic stress and running on empty caught up with me, finding and seeping through the hairline cracks in my body until the built-up pressure broke down all the defenses. Up until that moment, I was a highly accomplished Type A, perfectionist, busy professional who was totally in control of her world, high heels and all.
But now, I felt invisible, like a non-entity: I was not able to be productive and feel good about myself, I was scolded on the bus by older women because I sat up front in the ‘reserved for disabled’ seats because I couldn’t stand (hey – I looked fine!), I was a nuisance to drivers because I crossed the road so very slowly (I could barely walk because of my severe neuropathy), I barely had enough energy to brush my teeth on most days, and even if I had the energy to, I had nothing to talk about and couldn’t relate to other people because I was consumed by my pain and medical agony.
Something shifted when I hit rock bottom: I wasn’t going to have it anymore. I wasn’t going to play by others’ rules that said “You have to be on this medicine,” “You will be pain for the rest of your life,” “You have to have this surgery,” or even “There’s nothing wrong with you.” I started playing by my own rules. And that’s when I started becoming Invincible. Even if I had to live in pain, I was going to do it on my own terms. I was going to rebuild my life.
Now I feel great, having been on the mend since about November 2008 after about two years of really hard work using my own body, mind, and spirit trio as guinea pigs, when all of a sudden ’one step forward, two steps back’ started becoming ’one step forward – oh, wait, look! another step forward! and another! wooo hoooooooooo!’
This is now the best I’ve ever felt, really: high energy, high spirits, my body is strong, my skin is glowing, no symptoms (as long as I mind my triggers – more on that later), no weird stuff, no colds / flus / headaches / asthma / etc (see below), and I am at peace with my life and my world. I love my life, my work / passion, my body, and everything this experience has taught me.
My standing diagnoses as of 3 years ago are (were?):
- Chronic Fatigue
- Undifferentiated Connective Tissue Disorder
- Multiple Chemical Sensitivity
- Post-Traumatic Stress Disorder
(with the Trauma being the overnight dissolution of my health at the age of 32)
These are what I’ll be writing about most of the time. But my past health history includes the following, which I may deign upon now and then as some of these may apply at some point:
- Chronic asthma (no more asthma now)
- Many food allergies (down to a very few now)
- Chronic bronchitis (no more)
- Pneumonia (no more – no colds anymore either)
- Chronic tension headaches (very, very rare – maybe 2 x year vs 3 x month)
- A gallbladder full of stones due to heavy antibiotic therapy (gone – avoided surgery – got rid of them naturally in 2 months with the help of my Naturopathic Doctor)
- Medication-induced hepatitis and pancreatitis (liver still temperamental – hence the wine’s effect on me last night – but otherwise healed)
- Unexplained fevers (with no other symptoms – thankfully no more)
- A probable diagnosis of viral meningitis (yikes!)
- An atrophied left ankle due to faulty cortisone therapy (my ankle is fully healed now)
Eeek, right? No wonder I’m an “expert patient” and can emphathize with my clients – most likely, if you’re struggling with a health issue, I’ve been there too!
The good news is that the story has a happy ending, per se.
Okey doke. This is all I feel up to writing for today.
To be continued – stay tuned for Part II and beyond! I’ll keep digging deeper and sharing insights, tips, and more details about my healing as I go.
As always, I welcome your comments and questions. I have a little bit of a backlog to get back to earlier posts, so please bear with me if you’ve reached out to me already…
Have a delicious day!