Tuesday, March 3, 2009

Chronic illness aka Q&A edition 2.

Okay, well I told Amy B. she could ask some questions because she didn't know I was back in blog land. She is the only exception because I have a huge soft spot in my heart for her son Philip. So here are her two answers.
Amy asks:
As a young adult the same age as my Philip... How do you make it through the harder days when you just wanna feel like WHY ME? Or What if?

Honestly, this might sound cliche- however my hard days are gone through with either reflecting on worse days or worship music. I love worship music with all of my heart and soul. When those don't work I have a select few people that I can go to and cry or talk to. There are actually two girls I know of off the top of my head and one guy that I have called and they have listened to me cry for far too long. I feel really bad about that sometimes, however that's how I get through those moments. I love them forever, I wish I could tell them about how much I love them. The What if days... Those are far and few between for me, but it seems like when they hit the idea doesn't leave fast. It scares me sometimes especially when I know there is something off. Even something slight, I am on my toes and scared. I wish people knew what it was like to have a stabbing pain and within two days have surgery. I think after getting my gal-bladder out last year I realized that things could get serious fast and that scares me sometimes. Although being with Jesus is going to be awesome I can only imagine.

"Philip rarely has those days but when he does they are so hard for me as his mom...I would love to know better how to help him."

I feel like the best way to help, is to listen. Support him even if it is screaming right along with him, there is no promise for tomorrow for anyone, that's the truth. However the days we are here should be spent loving each other. Show him love and let it be known he is loved.

Do you have any idea how special of a young lady I think you are? I just am so glad you are back. I have worried about you when you left a while back.

Honestly- with two people saying this now. I really don't know if I do know how special people see me. I don't think I will ever know because I have learned when God is in the picture, somehow the unthinkable always happens.

This Question and Answer time has gotten me to notice how people feel and what they wonder when they look at me. If you have other questions even if they are trivial. Leave them around, I might do another answer time with them if there are enough. I really wonder sometimes what people think when they're looking at a teen that's really sick. However I look at them now and I feel like it seems more normal to me. There are a lot of very sick, very hurting teens and I mean physically hurting not mentally but mentally hurting too. Okay so both. I feel like it's something that is actually pretended to be little but I know quite a few.

I feel that the dealing with a Chronic illness isn't talked about a lot. I also feel like when you're a teen it's an awkward time to be sick. Right now I feel like I am trying to figure out who I am as a person like every other teenager that is going through this period in their life. They experiment with things they go crazy they sneak out they, well- they do a lot of things. I see my peers do things a lot and I think wow that's awesome or I am glad I am not doing that. However at the same time I am taking on the responsibility of calling doctors and making decisions. Decisions that could quite possibly affect me in major ways the rest of my life. No, I don't mean college. So for those things it's stressful. I also think that sometimes those things are ignored among my friends and sometimes adults that I associate with. I think I overreact to little things because I feel like one day I am going to wake up and that person might be gone. Yes that is a real fear I have.

This article made me feel a little more normal about some things. Although I don't agree with some of the topics on the list and could bring it down to like 30 some of them really hit the nail on the head.

The two below hit me personally because in the last few weeks I feel like both have happened and I feel really bad about it now. I am praying about a certain situation because I feel at peace about it now, but it felt like a huge deal a few days ago.

Always ask before touching or hugging and never give them a power handshake or a friendly biff on the shoulder. Many people with chronic illnesses are in a lot of pain, particularly if they have symptoms like that of Fibromyalgia, where every touch signal can be magnified into significant pain. This changes all the time, so don’t stop hugging them, just check first and be gentle.

Recognise that pain and extreme tiredness can make anyone irritable (have you never snapped at someone when you’re sick with flu?) and that various medications can affect behaviour. If your friend does or says something rude or hurtful, give them the benefit of the doubt. They may well be horrified afterwards.

This is The End of my Question and Answer and Answer time! Hope you enjoyed.


Amy B said...

You have a soft spot for me too..right? LOL
Thank you so much for those great answers and insights. You know it is such a blessing for mt to hear that from you. It means a lot to me for you to take time to give me me such thought out answers. I may come back to you in a few thoughts down the road.
You my sweet girl are a inspiration to many of us adults. Never doubt that.

Shannon said...

I found you through AmyB. What an inspiration you must be to so many. Your playlist is awesome! Every song on there is one I would have picked too. I'm going to spend some more time catching up on your blog. I visited the LymeWalk site and read your story.

BoufMom9 said...

How lovely to hear that music gets you through your pain. i know exactly what you mean.
When I feel down, all i have to do is turn on the music and i can feel God's splender.
Blessings to you!