30 Things About My Invisible Illness You May Not Know

September 3, 2013

Invisible Illness Week is coming up soon, and as part of that I’ve decided to participate in the 30 Things About My Invisible Illness You May Not Know. Before I looked at the list I figured this would be good for new readers, but as I read through the insightful items, I realize long-time readers might learn something new, too. So here we go….

Maine

1. The illness I live with is: Undifferentiated Connective Tissue Disease, Hashimoto’s Disease, Hypothyroid, Mild Adrenal Fatigue, PCOS, IBS, Raynaud’s
2. I was diagnosed with it in the year: In the order I listed them, 2003, 2010, 2004, 2012, 2005, 2001, 2004
3. But I had symptoms since: 1993, 2000, 2000, 2011, 1995, 1994, 1994
4. The biggest adjustment I’ve had to make is: Missing out on life – missing social events, spending less time with friends, less dating, having to leave my job
5. Most people assume: I’m a typical, healthy 30-something
6. The hardest part about mornings are: Becoming awake. Sometimes my body wants to stay asleep.
7. My favorite medical TV show is: None at the moment.
8. A gadget I couldn’t live without is: My laptop. It is my connection to family and friends when I can’t leave the house, not to mention a great source of medical information.
9. The hardest part about nights are: The lonliness
10. Each day I take __ pills & vitamins. (No comments, please) 47
11. Regarding alternative treatments I: I do what works and avoid what doesn’t work.
12. If I had to choose between an invisible illness or visible I would choose: I’ve never had a visible illness, so I can’t fairly answer that.
13. Regarding working and career: I wish I had the option of working right now.
14. People would be surprised to know: I’m in pain every single day.
15. The hardest thing to accept about my new reality has been: I don’t know how I’ll feel 1 year, 3 years, 20 years from now. I could be better, could be worse, but I can’t know.
16. Something I never thought I could do with my illness that I did was: Go on a picnic without fear about the lack of bathrooms.
17. The commercials about my illness: Don’t exist.
18. Something I really miss doing since I was diagnosed is: Riding a bicycle.
19. It was really hard to have to give up: Dreams of having children.
20. A new hobby I have taken up since my diagnosis is: Knitting. The movement keeps my finger joints looser.
21. If I could have one day of feeling normal again I would: Have a huge party with everyone I love, and be with them the entire day without having to stop and rest.
22. My illness has taught me: To appreciate the things that I do have.
23. Want to know a secret? One thing people say that gets under my skin is: “I could never give up gluten/dairy/other food.”
24. But I love it when people: Offer to make plans accessible for me, without making a huge deal about it.
25. My favorite motto, scripture, quote that gets me through tough times is: “I may not be there yet, but I’m closer than I was yesterday.”
26. When someone is diagnosed I’d like to tell them: “Don’t rush to accept this. You’ll accept it in your own time. It might take a while, but you’ll get there. Just take it one day at a time.”
27. Something that has surprised me about living with an illness is: My new “normal” feels so natural sometimes, until I realize how far off I am from where I should be.
28. The nicest thing someone did for me when I wasn’t feeling well was: Spend time with me but without discussing how lousy I felt; we just talked and it was a great distraction.
29. I’m involved with Invisible Illness Week because: I think it’s incredibly important to educate people about what we live with.
30. The fact that you read this list makes me feel: Cared about.

5 Comments | Educating, Expectations, Frustration, Isolation, Limitations, Support, Symptoms | Permalink
Posted by chronicrants

The “But you always look so good” comments

August 23, 2013

I’ve heard it far too many times: But you always look so good when I see you. Or along the same lines, My brother doesn’t understand your illness because you always look good when he sees you.

I’ve written before about the masks we wear to hide how we really feel. That’s definitely part of it. I’m good at wearing a smile when I feel lousy, speaking positively when I’m sad, and in general hiding how I feel. Yes, that’s definitely part of it.

But then there’s the other part. It’s so obvious, and yet people seem to constantly miss it. It’s really quite simple: I don’t leave the house when I feel really crappy. That’s why no one sees me when I don’t look ok. When I’m out, it’s because I feel well enough to be out, and if I feel well enough to be out then I feel well enough to present as ok. On the other hand, when I’m so exhausted that I have trouble picking up the tv remote, when my brain fog is so bad that I mess up making a salad (which I actually did yesterday), when the pain is so horrible that walking to the bathroom is excruciating, then I stay home. If I stay home, then no one sees me. See, I told you it was simple.

The funny thing is, as simple as this concept is, it took me a while to realize the pattern myself. When I heard those comments, I just figured people weren’t being very observant. They were ignoring my pale skin, slight limp, occasional wince. It took me a while to realize that even though the symptoms are there and can be noticed, the really bad symptoms, the ones that are just about impossible to miss, are almost never seen by others. There’s been the occasional ex-boyfriend or my mother or a friend who I was visiting with, but that’s it. No one else has seen me when I’m feeling really, really bad. So how can I expect them to understand?

I used to respond to those comments by saying that I’ve learned how to cover things up, or that they just didn’t notice, but not anymore. No. In line with my new policy of honesty, I now tell them the truth: they don’t see me on my truly awful days. And then I offer to describe what those days are like. I feel better, and I think it’s enlightening for them. I hope it makes them think twice before they judge anyone else.

Sometimes it’s what you see. And sometimes it’s the absence.

4 Comments | Educating, Expectations, Fatigue, Frustration, Insensitive, Isolation, Limitations, Pain, Rants, Symptoms | Permalink
Posted by chronicrants

Taking out the trash is hard

August 16, 2013

That title sounds whiny, but I don’t mean it that way. It’s just a fact. When you have chronic pain and chronic fatigue, taking out the trash can be damn hard. I thought about that last night as I returned from taking out the 20130816_173920trash.

Usually it starts when I smell the trash. I have a lousy sense of smell, so if I’m noticing something, then it’s probably already really bad. This is the point when I’d take it out if I was healthy. If I don’t feel up to it, which I usually don’t, then I wait. The next day the trash is smelling a lot worse. I light a scented candle and throw open the windows. I tell myself I’ll take the trash out with me when I go out for something, but of course when I finally go out, I want to save my energy for the outing. So the trash has to wait. Finally the smell is so bad that I force myself to do it.

Getting the trash out of the trash can is tough. I pull at those handles and sometimes I have to stop and rest if the bag gets caught on the can. I carry the trash to my door, put on my shoes, grab my keys, and carry it all the way down the hallway. The trash is usually too heavy and awkward for me to try the stairs, so I wait for the elevator. Once in the basement, I have to lift the trash high to get it into the large bin. Then I take the elevator back upstairs, walk back down the hall, and enter my apartment with a sigh of relief. Putting a clean bag in the bin can wait.

I suppose I could take the trash out more often. That would help, because it would make the trash lighter. But it would also be worse, because it would mean more frequent trips down to the basement. There’s no good answer, of course. When you live alone, you have to take out the trash. I’m just lucky I don’t have to take it outside, especially in bad weather. Still, it’s a long haul down to the basement.

In general I try not to let the little things get to me, but sometimes I get so frustrated at not being able to do small things that other people take for granted. Even worse, people complain about not wanting to do things that I wish I could do! Taking out the trash isn’t glamorous, but it’s a lot better than having a stinking apartment for 3 days. I’m just glad I can still manage to do it, even if it’s really damn hard.

3 Comments | Fatigue, Frustration, Isolation, Limitations, Pain, Rants, Symptoms | Permalink
Posted by chronicrants

Finding health solutions outside the doctor’s office

August 14, 2013

This month’s blog carnival topic over at Patients for a Moment really caught my attention. It’s being hosted by Getting Closer to Myself – go check it out!

There are a few questions I could have answered, and I’m choosing this one:

How has social media impacted your illness experience?

Anyone who has been following this blog knows that I only recently began to figure out what’s causing my various symptoms. But do you know how I’ve been finding answers? It sure wasn’t at the doctors’ offices! They were all pointing fingers at each other, saying it was someone else’s specialty and not offering me any answers. The real journey started with a book.

I was bored while all of my friends were at work, so I went to the library. I thought I’d check out the books about one of my symptoms because it had been a long time since I’d done that, and while I was perusing the shelves, a title caught my eye about hypothyroid symptoms. I grabbed the book and immediately started reading. That book led to another, and those led to web sites which connected me to Facebook groups. Suddenly I found an entire community of hypothyroid patients online, mostly on Facebook and Twitter and in other places, too. They were dealing with hypothyroid and a lot of the accompanying issues that I also face, like adrenal fatigue.

Being ill can be isolating in the predictable ways: spending days at a time alone at home, not working, and having to miss social events are of course difficult. But the thing that many people don’t realize is that it’s also isolating to be sick and not know why, which symptoms are attributable to which diseases, which symptoms are relevant and which aren’t, or what to do about it all. This can make a person feel very alone, because it seems that no one else understands. Finding books, blogs, web sites, Facebook groups, and Twitter chats of people going through the same thing makes me feel a lot less alone. But they’ve also given me hope because, for the first time in many years, I have treatment routes to explore! In fact, if it wasn’t for the Chronic Babe online support group (which sadly no longer exists) I would have never begun seeing the naturopath who cured my IBS and who has helped me in so many other ways over the past year.

Let’s face it, social media is far from perfect. Finding the right groups and accurate information can feel like looking for a needle in a haystack, but it’s possible. We have to watch out for scams and inaccurate information. There are still doubters. But for me, social media has been incredible. It has given me a community to turn to, answers to my questions, and the hope that I could improve. I can’t wait to see what happens with it next!

Leave a Comment » | Educating, Expectations, Healthcare, Isolation, Medication, Raves, Support, Symptoms | Permalink
Posted by chronicrants

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