Crohns and Colitis Awareness Week

I was late, it just ended today. The reason I was late was actually because I have been dealing with my Ulcerative Colitis (UC) since last week, and still am, but hey, I decided I wanted to talk about it. I didn't post on facebook because it's actually something I am keeping from a super important to me elderly family member with major anxiety problems, hypochondria, and a weak heart. She does not need to know and I don't need the added stress.

What are these chronic diseases?
(sorry some of the symptoms are kind of gross)
www.ccfa.org/what-are-crohns-a…

To any of my watchers who live with any form of IBD, including Colitis and Crohns (Really, anyone dealing with a chronic condition):
-Be forgiving of yourself. I know I get so frustrated when I don't have the energy to do what I want to do, or have to cancel plans I really didn't want to, but remember that you are doing the best you can. Sometimes that nap is going to happen, or you can't make to the party.
-Seriously, cut yourself some slack. I am super guilty of refusing to take it easy when I need to. I can't miss much work, I still have professional and personal commitments. If I miss one, I get so stressed. I'm learning to manage this, and to communicate it.
-Remember to let others help. Your doctor, the GI staff, your friends and family. Support is such a blessing.
-Share your story if it helps. Chronic, hidden, "invisible" diseases are often unknown because we don't talk about them.
-Advocate for yourself, for the care you want, and at your work place. It took me most of a year, but I was able to partner with my doctors, specialist, and work to get an accommodation to improve my overall quality of life and work.
-There are good days and there are bad days. Enjoy your good days, and do what YOU want to do, celebrate these moments.
-Take time to mentally recharge when you aren't too weak. This may mean just watching a few movies by yourself, making some art for yourself, writing, playing video games, or just taking time out. Your mental state can make at least a small difference, and some days a big one.
-If you find yourself very depressed from your diagnosis, treatment, or other changes it causes, you may need some help dealing with this. Don't be ashamed to ask for help, your specialist or primary care doctor is likely to be able to make a suggestion of who you can see to help work through it.
-Just because you live with any chronic disease, chronic physical condition, or mental health issue, you are not defined by it. You can still have a good life and deserve love and respect.

  To my watchers who support someone with it, as a family member, spouse/so, or friend:
-You are amazing, and your understanding, patience, and help are vital and so, so appreciated. Your loved one who has the disease is so lucky to have you!
-Please remember to be patient with us, we are not trying to be difficult, we really wish we felt better, or that we had the energy to do more, and we really didn't want to cancel those plans. Some days our lives revolve around managing our symptoms or the side effects of our medication. We are sorry if we snap or don't remember to take your feelings into account sometimes. Don't let yourself be hurt, but also keep in mind we are not at our best.
-Little things go a LONG way. Just letting us know we're not forgotten, a cup of tea, or being forgiving when we are just not feeling our best, or offering to include us mean so much.
-Remember if you ask how we're feeling, the answer may be "not well today", and that happens. Move on and let us know how you're doing, because we love you and care!
-It's not a contest. We care about what is going on in your life. We care that you are having a bad day, even if what happened is "not a big deal." We hate it when our boss is being a jerk, or a customer was rude, or traffic sucks, we get this and sympathize. We want to share in your frustrations, and we want your good news too! Please don't avoid telling us things that are happening in your life (big and small) just because we've got this. For one thing, it can be an isolating disease, so it really doesn't help either. So there's your excuse XD
-Please remember that your friend/co-worker/ect who lives with these diseases often don't look sick, they seem okay and they show up to work like everyone else and laugh and smile, or make art, or whatever just like everyone else... sometimes we are just doing our best to live our lives and many of us have no choice but to work sick. Our lives don't stop just because we're having a bad illness day... or week... or month.
-TAKE CARE OF YOURSELF and FORGIVE YOURSELF! It takes a lot out of you to love and/or care for someone with a chronic disease. Your health, mental health, and happiness is incredibly important to your loved one. They love you, and care about you.
-Thank you.


aaaaand a personal thank you from me if you read that!