(Mostly Sane) Ramblings Of a MAW (Middle Aged Woman) Living With Multiple Chronic Illnesses
Thursday, September 17, 2015
30 Things About My Invisible Illness You May Not Know
As part of Invisible Illness Awareness Week I'm sharing 30 things about my illness you may not know.
1. The illness I live with is: Ehlers Danlos Syndrome, Dysautonomia, and Hashimoto's
2. I was diagnosed with it in the year: EDS (2011), Dysautonomia (2013), Hashimoto's (September 2015!)
3.But I had symptoms since: Birth (EDS), Dysautonomia about two years and Hasnimoto's the past few months or maybe longer as some of my symptoms that I've attributed to my other illnesses might actually be from the Hashimoto's.
4.The biggest adjustment I’ve had to make is: Finding a new purpose for my life. Letting go of dreams I had for myself and creating new ones.
5. Most people assume: Some people do not know that I have chronic illnesses and those that do know, do not really realize how it affects my everyday life.
6. The hardest part about mornings are: Convincing myself that even if yesterday was a bad day, today might not be. To focus on what I need to do and to not waste what little energy I have on things that either don't have to be done or can wait.
7. My favorite medical TV show is: I've really gotten into the reality summer medical shows-Boston EMS, Boston Med, etc. But, I also like Grey's Anatomy, which is really sometimes more about the character's life than it is about medicine. I'm looking forward to Chicago Med.
8. A gadget I couldn’t live without is: My Ipad. Okay, I probably say this every year, but I know I can live without my electronic gadgets, but I wouldn't want to. I especially like my Ipad because it's lightweight and it has so many functions. I use it to surf the web, watch Netflix, read Kindle books, etc. I turn the brightness down at night (so I won't bother my husband) and read in bed. I even occasional use my headphones to watch something.
9. The hardest part about nights are: Not being able to sleep. I know my sleep hygiene is horrible. I do all of the things you're not supposed to do. Use electronics at bedtime, sleep with a light on, sleep with the dog, etc...But, some of these things bring me comfort. Sometimes, I choose to have peace rather than quality sleep. I'm working on this.
10. Each day I take __ pills & vitamins: About ten, maybe more if I'm having a bad day and need my pain meds.
11. Regarding alternative treatments I: At the moment I'm confused and frustrated by them. I've been trying to find information about my newest diagnosis, Hashimoto's, which is an autoimmune thyroid disease, but most everything I've come across, especially on Facebook, pertains to alternative treatments. Don't get me wrong, alternative medicine has it's place and I'm sure, in many cases, it's beneficial, but many people promoting it completely slam mainstream medicine. I need a balance of both. No, I need the scale to tip heavily towards peer reviewed studies and articles from reputable journals, at least while I'm in the learning stages about the disease. Oh, I sense a blog post coming from this.
12. If I had to choose between an invisible illness or visible I would choose: You know, if I were to look back over my answer to this question from previous years I would almost bet I've probably said visible. But, now I'm not so sure. Many times we think we'd have less judgement from others if we had a visible illness, but many times that's not the case. If it were invisible, I could maybe fake my way through things a little bit easier. I'm at the stage now were some days it's visible and some days it's not. I guess my whole point is that the grass isn't always greener on the other side.
13. Regarding working and career: I'm on disability. I had to give up my real estate career. I really enjoyed it, but it was just too much for me. I'm trying to find a purpose in my life that allows me to use some of my skills, while giving me the flexibility to listen to my body when I need to.
14. People would be surprised to know: That I am an introvert and a very lonely person. I am definitely outgoing when I'm with my close friends, but it's hard for me to be in a crowd. It's difficult for me to reach out to others, both to maintain friendships and create new ones.
15. The hardest thing to accept about my new reality has been: Not being able to do things I thought I'd be able to do at this stage in my life. For example, it was always a dream of mine to take ballroom dancing lessons. I think my husband would even go for it now, but my body just couldn't take it.
16. Something I never thought I could do with my illness that I did was: Hmmm....travel? I've been able to go on small vacations the last few years that, early on, I don't think I would have been able to do. Or, at least wouldn't have attempted to.
17. The commercials about my illness: I haven't seen any yet.
18. Something I really miss doing since I was diagnosed is: Making plans and not having to worry whether or not I'd be able to follow through with them.
19. It was really hard to have to give up: My idea of what my life would be like.
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: Dance!
22. My illness has taught me: How to advocate for myself. Both with the medical profession and in my personal life.
23. Want to know a secret? One thing people say that gets under my skin is: "You don't look sick". So far no one has said that directly to me, but I'm sure they've thought it.
24. But I love it when people: Show that they care by showing interest in my illness and by being willing to work around it.
25. My favorite motto, scripture, quote that gets me through tough times is: Philippians 4:13. Just a few weeks ago, I finally found a bracelet that has this verse. I love it!
26. When someone is diagnosed I’d like to tell them: Find your people. People that have your same illness and people who will be there for you. Both are important for different reasons.
27. Something that has surprised me about living with an illness is: Just how much a chronically ill person has to advocate for themselves. It can be exhausting.
28. The nicest thing someone did for me when I wasn’t feeling well was: Brought me my favorite snack food. You can't go wrong with chocolate.
29. I’m involved with Invisible Illness Week because: I want to spread awareness about all chronic illnesses. There's power in numbers and that's what I think Invisible Illness Awareness Week has.
30. The fact that you read this list makes me feel: Like you must be really bored. I mean, surely you have something more important you could be doing! HA! It makes me feel good. Thank's for reading!
To those of you who found my blog through Invisible Illness Awareness Week and are maybe reading it for the first time, please stick around. Go back and read old posts, I'm hopeful that you might find something that you can relate to. Also, if you have a blog please share it in the comments, I'd love to see it!