invisible illness week: 30 things about me…

invisible illness week: 30 things about me…

This week is National Invisible Chronic Illness Awareness Week! In observance, invisibleillnessweek.com offers some great articles and podcasts for those with chronic illnesses and their caregivers. I encourage you to check it out.

Invisible Illness Awareness Week also encourages bloggers to participate by blogging about the theme for the year, or posting this “30 Things About My Illness”. The theme this year is #invisiblefight, which I think is a wonderful theme, but which, for some reason, is leaving me speechless. Sure, it’s difficult fighting an invisible fight, but aren’t we all doing that? Whether it’s illness, abuse, war, poverty, family issues – aren’t we all battling something? Isn’t it one of those few things that all humans universally suffer?

October is Dysautonomia Awareness month, so this is also a great opportunity to help raise awareness. I completed this survey a couple years ago, and many of my answers remain the same. Friends, if you’re so inclined, please share your responses to the questions below, too!

30 THINGS ABOUT MY ILLNESS:

1. The illness I live with is:

gastroparesis, dysautonomia/Postural Orthostatic Tachycardia Syndrome (POTS), migraines, mast cell activation (MCAD), and most recently, a currently undiagnosed problem with pain and numbness in my legs

Although that sounds like a long list, my doctors and I suspect they are all related. So, really, just one bastard of an illness.

2. I was diagnosed with it in the year:

First diagnosis came in 2005. The rest followed every few years.

3. But I had symptoms since:

2004 for gastroparesis, 2009 for everything else except the leg pain, which came in May of this year.

4. The biggest adjustment I’ve had to make is:

honestly, everything is an adjustment. some big, some small.

5. Most people assume:

I don’t know what most people assume. That I’m awesome?? 🙂

6. The hardest part about mornings are:

My symptoms are typically worse in the morning, so just the simple acts of getting ready for the day are hard. I take cold showers and have to sit down while I dry my hair. I’m nauseous but have to eat something in order to take medication. My heart rate doubles walking the 20 ft from my front door to my car.

7. My favorite medical TV show is:

I don’t really watch medical shows, probably because i spend a lot of my free time reading medical websites and journals online. just like i don’t watch lawyer shows, since i spend a lot of my non-free time lawyering.

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

I could live without all gadgets, but I do love my tablet. I love that I can watch Netflix, read a book and play games all on the same device. I’ve become quite a gaming nerd, so if you play (as the BF calls them) vegetable crush, fish crush, sugar crush, the battle game or the trivia game, let’s be friends.

9. The hardest part about nights are:

Adrenaline surges. I wake up ready to beat the shit out of something or run a marathon. Granted, my body isn’t capable of doing either, but my mind forgets that sometimes.

10. Each day I take __ pills & vitamins.

Cromolyn every day, and a quarter of a beta blocker every other day. Working on getting that one down to zero.

11. Regarding alternative treatments I:

still think acupuncture might be worth trying, but still haven’t tried it.

12. If I had to choose between an invisible illness or visible I would choose:

Invisible. Not every person in the world needs to know I’m ill.

13. Regarding working and career:

Same as last time – I still work as an attorney, it’s still a challenge going to work. My employer doesn’t offer healthcare or paid time off (for when I’m sick or at the doctor), so I don’t ever take a sick day. However, I am able to work from home a lot, and that has been my saving grace.

14. People would be surprised to know:

Occasionally, I’m actually glad that I have an illness. I’m a better person because of it. Although, there is something to be said about being an illness-free asshole, too…

15. The hardest thing to accept about my new reality has been:

Accepting that there are some things I won’t ever be able to do again. Understanding is one thing. Accepting it is another.

16. Something I never thought I could do with my illness that I did was:

I have a few this year – stood throughout my entire wedding and flew to Hawaii. Of course, I also bought a walker and started using a wheelchair occasionally. It’s been a year of ups and downs.

17. The commercials about my illness:

Still none.

18. Something I really miss doing since I was diagnosed is:

Being social. I can still hang out with friends now, but after a little bit, I’m ready for a nap. I miss days at the beach, or dinner and drinks into the early morning. Only my friends’ kids and I are in bed by 9:00. (As a side note, last time I completed this, I said “in bed by 8:30”, so I’m like a crazy party animal staying up until 9 these days.)

19. It was really hard to have to give up:

traveling. I have to figure out a way to see more of the world. I’m just not ready to be done.

20. A new hobby I have taken up since my diagnosis is:

blogging? multiple-nap days? putting salt on everything?

21. If I could have one day of feeling normal again I would:

Travel around the world. And, if I’m being totally honest, probably get really drunk.

22. My illness has taught me:

That every day I’m able to walk should be a good day.

23. Want to know a secret? One thing people say that gets under my skin is:
1) When people say that because I’m out doing x (e.g., working, shopping, going out to eat, etc.) that my illness must be better. Apparently people with chronic illnesses are never allowed to be out in public.

2) “I wish I could work half days or could nap all day.” Really? Because I wish I could go to an office everyday and make a difference in the world. Remember, it’s not like we stay home when it’s time to work, but we’re out partying and having fun the rest of the time. I spend a lot of the weekend sleeping just so I can get up and go to work Monday morning.

24. But I love it when people:

Treat me like I’m human.

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

“You cannot run away from your weakness; you must fight it out, or perish. And if that be so, why not now, and where you stand.”
– Robert Louis Stevenson

“Courage doesn’t always roar. Sometimes it’s the little voice at the end of the day saying, ‘I will try again tomorrow.’” – Mary Anne Radmacher

26. When someone is diagnosed I’d like to tell them:

I’m going to give it to you straight – illness sucks. It does. It’s a shitty situation, and you don’t deserve to be in it.  Being ill is a tough journey, but there are others to help you along the way. Let them. Be afraid, be upset, cry, scream….allow yourself to feel whatever it is you feel. But don’t lose sight of the world. It will get better.

27. Something that has surprised me about living with an illness is:

how wonderfully supportive the chronically ill community is. People I’ve never met ask how I’m doing, share their personal stories with me, listen to me. Even if we don’t have the same illness, all the people I’ve talked to have been so caring and compassionate. I have a few chronically ill friends with whom I email regularly but have never met in person.  Honestly, it has restored some of my faith in mankind.

28. The nicest thing someone did for me when I wasn’t feeling well was:

i am blessed with wonderful friends and family, and a very supportive (and handsome) BF, so I have been the recipient of many nice things.

29. I’m involved with Invisible Illness Week because:

I think it’s a great way to bring much needed awareness to the struggles others endure. The illness is invisible, not the person.

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

less alone.

12065530_841561712609376_6183025083214446099_nThanks for reading. Fellow bloggers, I encourage you to copy and paste the questions to your blog and fill them out (and put up your link here so I can read your answers, too!). Happy National Invisible Chronic Illness Awareness week to all!

Smell ya later.
– Linds

12 thoughts on “invisible illness week: 30 things about me…

  1. I just want to tell you to hang in there. I’m 62 now, worked a full career as a Welfare Case Manager for the State of Oregon. My identical twin did the same in another town. We were always sick…I was diagnosed with POTS (idiopathic), so was my mother & my little sister (who could no longer work). My twin suffered terrible with everything you have…she never could afford to fly to Syracuse, New York to be diagnosed. My daughter is 45, completely disabled, her daughter was the key to finding out in 2013 that we have Ehler Danlos 3, with some cross overs. I have been studying ancestry stuff for the last yr & I think I have found the genetic link….The Irish Potato Famine around 1882, is most likely the beginning of this genetic disorder for our family, in my humble opinion.

      1. Hi Lindsay,
        I have been working on our family history for my identical twin, because she passed away about 5 yrs ago. Her only son is beginning to have children with his wife & his wife is a first born American in her Chinese family. So in this process, I came upon my maternal grandmothers family & did not know the family story. I knew nothing about my great grandfather , other than my mothers only brother was named after him. That research lead me to the untimely death of my Irish great grandfather…died at 62, fighting a wildfire in Oregon, than his father died at 56 of a ruptured blood vessel ….than onto his story…Irish Potato Famine. There is one rare Ehler Danlos related to the Irish Potato Famine, I’m thinking a lot of research needs done. It would be wonderful to find out how many EDS people are linked to this time & place in history.

        By the way my identical mirror twin had very similar symptoms to yours. I have several of the symptoms, mine aren’t as profound, but at this point disabling. My twin lived with me & my family the last year of her life. I pray no one ever suffers like her.

        My mother was a Registered Nurse & became disabled in her 50’s. My mother, my little sister & myself were all diagnosed with POTS in 1992. We all flew at different times to see Dr. David Streeten at Syracruse, NewYork…You can look up his work up on line. Anyhow, there is no doubt what so ever that our main issues come from my mothers side of the family. But, I never knew that the path was so easy to follow, once you know history. Also, it’s just my humble opinion on the subject. I believe we also have a long history of Lymes, which is the cause per my little sisters opinion.

        We may never know the truth, but, I have shared my genes with 2 more generations. Feels like you have opened a Pandora’s box on your children , if they inherit the gene. Which, mine did.

        I have used Ancestry.com, which has been helpful, but there is going to be difficulties getting past the The Irish Potato Famine in Ireland on this family limb. I have looked at all the others & none present this type of info that would lead me to believe our EDS is not linked to that event.

        I wish all the best.

        Cathy

  2. So much of this resonates especially #23. Oh you’re out doing X, so you’re feeling better then? Erm no, yesterday I was horizontal preparing to be out today and tomorrow and the next day I’ll be horizontal recovering from being out…

  3. Dysautonomia can be very lonely. I am currently on medical leave from school (though I’m going back as an adult for my PhD at 39) and having a very rough spot with my illness and my doctors. I’m tired of the dirty looks when I use my handicapped placard and the snide comments like you describe about sleeping so much. I’ve had this illness for 11 years, so I’ve come to terms with a lot of loss, but this is just a really rough time for me.

    Thanks for reminding me I’m not alone. I’m not on the computer as much as I could be because energy, but maybe I should change that for some things.

    Good luck with everything, and I hope you have more good days than bad and feel as well as possible. 🙂

    1. thank you very much for your comment! i really admire you for going back to school! i am fortunate that my POTS didn’t start until after i finished law school – i can’t imagine trying to deal with symptoms and school! illness is very lonely – it’s hard when people our age are out having fun, going on adventures, living life – and we’re not. i have found the internet to be very helpful, not only with my blog, but also with some of the online support groups.

      1. Thank you so much for your kind words. Most of the time I don’t think of it as anything special – I thought about life when I first became ill and the question occurred: “Do I want to give up and just sit on the couch and eat chips for the rest of my life? Or do I want to do as much as I can for as long as I can with what time I have?” So that is what I’ve been trying to do. I can’t change the fact that I’m sick. I can just adjust the way I deal with my time management, energy management (lots of rest and naps and doing things at my best hours, which are very early morning and going to bed early), prioritizing, and things of that nature. But that can easily become lonely, because normal people don’t wake up at 4-5 am and want to go to bed between 2 pm – and 6 pm. Especially my colleagues in their early to mid 20s. But I have been open about why I am the way I am so that they don’t think I’m intentionally snubbing people when they ask me to join them for drinks or something, it’s just my illness talking. Some people are very understanding. Some are not. That part is out of my control.

        I don’t know if I know of any online support groups. So much of my energy has gone to school and normal stuff at home (and seeing that husband guy who lives in my house) that I haven’t really found any. I have a few friends who have invisible illnesses, but nothing formal. Is there any you would recommend?

  4. I agree that the chronic illness community is great. There is so much understanding and support going around. Our illnesses teach us empathy and that everyone has a burden to carry. We may not be able to see everyone’s burden, but it is there – and just as heavy to the person carrying it.

  5. Darn, I’m late to the party and missed this to post. Do you think I still could? Also, have I asked you before – do you know HOW/WHO chose October as the awareness month? This is an ongoing conversation I have had with others who have Cowden Synrome and I’ve never quite got a clear answer on how we can determine that for “us”. Thanks! <3

    1. i’m sure you could still post it!

      i have no idea who chose October as the awareness month! it seems many people would prefer a different month, as there are already so many high profile diseases (i.e. breast cancer) that have October as their awareness month. i guess it’s too late to change it now 🙂

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