Struggling with Illness

I have been dealing with illness from a young age, so I thought I'd share a little.  If any of my readers are also struggling with something, you are very strong and I'm glad you're alive.

1. What chronic illness(es) do you have?

UC, possibly CFS as well (haven’t been able to ask a doctor about the last one).

2. How long have you been sick?

Since I was 7.

3. What everyday activity can you not do anymore but miss the most?

I’m pretty blessed, I can do most things.  It’s just fatigue and nausea that sometimes get to me.  Sometimes I have to go home because my stomach is cramping so bad.  When I was younger I had to give more up because of hip pain.

4. How many pills do you take a day?

I’m supposed to take 7.

5. What does it feel like to go up stairs?

Again, I’m pretty blessed.  Most days I just get tired from being out of shape and my thighs burn. Sometimes it feels like I'm being weighed down by invisible forces, though.

6. Do you mind when people ask questions about you being sick? (How do you feel, why do you wear braces, what’s wrong, etc.)

It depends.  I don’t like being asked a lot, but I don’t mind explaining things in a more private setting.  (Exception: tumblr or this blog, if you have questions feel free to ask.  I’ll let you know if I don’t feel comfortable fully answering a specific question.)

7. When you go out, what do you bring with you?

Tylenol.  If I’m travelling I bring medicine and extra clothing.

8. What mobility aids do you use? How many do you have? Do you have a favorite?

Luckily, I’m very blessed and haven’t needed one since I was a teenager—other than sometimes needing to lean against something to walk.  Back then, once I got over the embarrassment of needing one, I enjoyed a wheelchair that I could self-wheel.

9. What is one item you can’t imagine being sick without?

A bathroom with a sink conveniently located next to the toilet.  Medicine.  Someone I trust to help me.

10. Who helps you the most?

My mom, she always has.

11. When you are discouraged, what do you tell yourself?  What do you read?  Who do you talk to?

I tell myself this episode will be over soon and I’ll have a lot of good days.  I read any story that I feel I can escape into.  I don’t usually talk to anyone, maybe my mom, sometimes.

12. If you could have one day without being sick, what would you do?

 Not worry about sleep or meds or food making me sick.

13. Do you mind cripple jokes or find them offensive?

I don’t mind close friends or family joking about me being a cripple when I’m having trouble.  It makes it feel less serious, like things will be okay again soon.

14. How do you deal with ableism? Do you ever feel ableist against yourself?

It can make me angry.  It is one thing to choose not to be in a serious relationship with someone because you don't think you're equipped to handle helping them the rest of your life, but don't turn your back on someone.  Or being completely insensitive to someone going through something, you may not understand but don't you dare be cruel.
I have felt ableist against myself before, thinking no one will want to be with me because they might have to take care of me sometimes.

15. How do you make yourself comfortable when you are flaring?

Green tea, warm blankets or a pillow on the tummy, sleep, staying home.

16. Can you feel a flare coming on?  If so, describe what it feels like.

Not always.  Sometimes I get an empty sort of pain in my stomach, but sometimes I don’t know until I’m hunched over cramping.

17. What is the most annoying symptom you deal with?

The kind that make you afraid to be away from the bathroom.  And brain fog, possibly some short-term memory problems and trouble focusing.

18. What do you do to ease your symptoms, besides medications?

Tea, try to exercise, warm blanket or pillow on the tummy.

19. Do you like to receive sympathy for people or do you try to hide your illness?

I try to hide it.

20. Do you remember the moment you became sick?

I thought I started my period because I found blood in the toilet and that’s what blood in the toilet meant in the movie My Girl.  It turns out I wasn't quite old enough to have my period, yet.

21. What would you now tell yourself in the moment you became sick?

An increased chance of colon cancer does not mean you will eventually have cancer.

22. How has being sick changed you, your personality, and the way you act?

I’m more afraid of going out with friends because if I have an episode I don’t want to have to explain why I need to stop at a restroom now and why I’m afraid to leave it.  I think I’ve also become depressed because I have CFS, too, and I feel useless because I get tired so often.

23. Describe your drugs and their “personalities,” the way they effect you.

I take one for hip pain; the meds I take that specifically target UC are also supposed to help with hip pain; over the counter softener; folic acid because one of the meds removes some of the naturally occuring kind; and a heart-burn pill to help the nausea.  I have to make sure I have food on my stomach before taking some of these because otherwise I’ll be sick to my stomach for the rest of the day.

24. What are all of the false diagnoses you have received?

I don’t even remember what they thought it could be.  My mom made them to the procedure that found the UC because they tried all of the other tests and put me on so many other meds that didn’t help.  She thought it might be UC because it runs in my family, she was right.

25. What have you been tested for?

I was so little, I don’t remember.  I think I was tested for just about every kind of food allergy, though.  I remember not being able to have anything with dairy for a while, that was a horridly unhappy diet.

26. What relationship has your illness impacted the most?

Probably my one with my parents.  They were all I had to rely on and they are the only ones who really know and help me with it now.  Other family members know and I’ve told a couple of friends, but I try to hide everything.

27. How has becoming sick impacted your ability to maintain friendships?

I make friends pretty easy but it’s hard for me to trust or open-up.  When I was in middle school I couldn’t run the mile sometimes because of hip pain and one of my friends told me I was lying to get out of it.  I know kids are stupid and I don’t hold it against her, but that did make me want to hide EVERYTHING more.

28. What emotion do you most often have toward your illness? (anger, fear, frustration, annoyance, sadness, etc).

All of the above?  Mostly sadness, probably.

29. What is the biggest sacrifice you’ve made since getting sick?

Trust.

30. What is the biggest thing you’ve learned since getting sick?

How to be more compassionate and empathetic.