WhatTheJules 30 Things – #SeeTheInvisible

Invisible Illness Week Banner

Welcome to #IIWK16, Here are:

30 Things You May Not Know About My Invisible Illness

1. The illnesses I live with are: Bipolar Disorder and it’s associated drawbacks, EDS and the degrading joint and tissue disorders that occur over time with the disease, PTSD, I am a nearly 20-year cervical cancer survivor. (I know, I don’t have Cancer anymore so it is not my invisible illness, but cool, right?)

2. I was diagnosed with it in the year: Invisible Illness One: Bipolar in 1989, but I was first sent to therapy in 1985 for “things I did that are (were) bad.” I was diagnosed with EDS by a specialist at UCLA on April 24th, 2012

3. But I had symptoms since: Bipolar, I started displaying reckless behavior in high school, but it did not get dangerous until college. My physical symptoms, while easy to cast off as “pronation,” “Osgood-Schlatter disease,” clumsiness as a child later turned into chronic and intractable pain as well as impossible to ignore symptoms after an accident in 2008.

4. The biggest adjustments I’ve had to make are: a change initially a change in stamina and activity as well as the ability to manage pain. Now, primarily I deal with keeping myself active so that I do not fall back into the rut of depression that at one time threatened to destroy what the illness did not.

5. Most people assume: I don’t even know anymore. I have lost the desire to presume or care about anyone’s assumptions about my illness or how I manage it. That is between me, my providers, and my husband. My concern now is advocating for illness as a whole and how the public looks upon all of us in the invisible illness community.

rubberduck6. The hardest part about mornings are:I know that the first thing I MUST do when I get up is to take a shower. If I go downstairs to make coffee or feed the dogs before I shower and get dressed, then I get distracted by work or something else and it is hours before I get dressed. I am a person that has to have a schedule.

7. My favorite medical TV show is: It is hard to pick, Chicago Med or Code Black

8. A gadget I couldn’t live without is: My iPhone with Apple Watch (and the health apps that work between them both)

9. The hardest part about nights are: night terrors, sleep walking, using gates and cameras with motion detection to stop the sleep walking, having so much pain in my neck or arms that sometimes I need to lift my head up with my hands or one arm with the other hand.

pillpack
PillPack.com

10. Each day I take 25 pills & vitamins.

11. Regarding alternative treatments I: am for some, against others. I caution patients to do their research, talk to other patients (not just the patients that the practitioner suggests) and to NEVER try anything new without talking to your doctor first. Any treatment, alternative or otherwise, can impact your treatment.

12. If I had to choose between an invisible illness or visible, would choose: neither, that is just silly

advocating13. Regarding working and career: I used to say that I “lost a 15-year career”. Now I say “I had a 15-year career, retired and am trying something else.” I also used to say why I retired, that I got sick, but not anymore. When I say “I started and run a nonprofit for the chronically ill” something different happens. I get a different, and very positive reaction. This way of explaining things starts a conversation that allows me to sew the narrative of my illness into the story of your illness and your illness and yes, even you over there, your illness too. It is very powerful. Very positive.

14. People would be surprised to know: I travel 100 miles a week to keep myself in tip top shape. To work my plan.

15. The hardest thing to accept about my new reality has been: Learning that when people say “Hi, how are you?” they just mean, “Hi.”

16. Something I never thought I could do with my illness that I did was: I always say “start a nonprofit. Now I also want to say that in the last year I rebuilt that nonprofit while traveling and rebuilding a life that was in shambles.

17. The commercials about my illness: There are no commercials about  EDS but there are commercials about the impact of narcotic treatment on the gastrointestinal system, and that is great for awareness. There are many commercials for antidepressants and bipolar depression. I have been honored to help with that awareness online. While some of these commercials make it seem as easy as “depressed? take a pill, and then you can go out and take up photography, walk your dog, learn pottery”, which I believe is a huge over generalization, I am still very happy that the conversation is happening.

img_246618. Something I really miss doing since I was diagnosed is: We used to travel more which I plan to remedy. What that symbolizes is the freedom I used to have to pick up whenever I wanted and just go. Now it takes more planning and making sure that it won’t be too cold or that I know I will feel ok. Well, there is no guarantee that I will always feel ok. Sometimes we have to take that chance.

19. It was really hard to have to give up: Lately I have been adding more and more back into my life. I will never be who I was, but I am doing more. I miss standing for long periods so I can cook large meals. Fortunately, I don’t have a large family to cook for anymore. If the house were full of people this would be something I would make me feel bad.

20. A new hobby I have taken up since my diagnosis is: I do so many new things I never did before. I write, I color, I go out with my camera and enjoy taking and editing photos with more than just an iPhone.

21. If I could have one day of feeling normal again I would: Travel the world all in one very long trip.

22. My illness has taught me: there is no time but the present. Come to grips with what I am and who I am and then start putting one foot in front of the other as that person.

23. Want to know a secret? One thing people say that gets under my

skin is: there are two things. The first is, “Have you tried…?” The second is getting the brush off or a dismissal of my need to talk about my life.

24. But I love it when people: who love me reassure me

25. My favorite motto, scripture, quote that gets me through tough times is: It is more conceptual.


nina simone“There’s a Nina Simone record that I love, ‘Live at Vine Street,’ and she sings flat on it. I can imagine she might’ve told the record label, ‘Oh, God, you’re not releasing that!’ But I’m glad they did.”
Damien Rice

I may be the flat note on a beautiful album, but I belong, I am still there and do not need to be removed.

26. When someone is diagnosed I’d like to tell them: this part is hard, there is no question, the beginning is hard. Find your support, your family. That family may not be those who gave birth to you or raised you. Find your family. Find the doctors that you can work with on a plan. With your family and your doctors and get to work on creating a plan for your life, and living that plan. You have lost much, but you will gain as well. Do not shut yourself off to gain, to happiness, and t0 growth.

27. Something that has surprised me about living with an illness is: after you are settled in and are living one moment at a time in the way that you planned it out, there are times you forget that you are sick. There are times that you can be alone with yourself and that self isn’t always your sick self.

28. The nicest thing someone did for me when I wasn’t feeling well was: hauled my sick ass around to where I needed to go when I could not get there myself.

29. I’m involved with Invisible Illness Week because: I want the public to understand there are millions of Americans living with illnesses that they cannot see. These illnesses are diseases that many have heard of such as diabetes and other diseases that they either know nothing about or that are very rare. And I am involved for the patients who are ill and struggling to let them know that it does get better.

30. The fact that you read this list makes me feel: good, and curious. Let me know in the comments below how you feel reading my answers and why you read them to begin with.

 whatthejules