RA has zapped so much out of me and has taken soo much away from me these past years its not funny. SOmething is always changing or being stripped from me.Being in constant pain all the time, is awful and lonely. Who wants to hear the REAL answer when asked, "how are ya feeling?" no one. People get tired of hearing about pain & suffering and I know I get tired about talking about it however it isolates you, whether you like it or not- chronic illness creates a unique type of aloneness.
It feels as though I am alone ALL the time and I am not a fan. I want people to get it, I want people to REALLY try to understand my daily life, I want people to see life through my body... Then make comments about how I live and get through each day.
I know I create my aloneness at times by not being truly open and raw with how i feel and what I'm going through but it's hard! So hard and complicated. I'm Working at taking baby steps with sharing and letting others close, but I'm afraid it will overwhelm and burden them or they won't be able to handle it soo I just keep to myself.
This past week I was reminded by my pastor, friend and some others I am not alone. There are plenty of people who want to walk this random and wild adventure with me- I just need to let them in and let go of my concerns. People who love & care for me also need to process and adjust to life with RA, but I can't worry about them I need to do what is best for me.
Again I know I am not alone. I have my God, mom, siblings and friends...But still...
As many of my friends have been going through divorces, it occurred to me that although I want to help and understand what their life is like right now for them, I really don't. I think it is the same with RA. Those around us want to understand, but in reality, we each have our own issues going on and it is too difficult to really understand what someone else is going through when you have your own issues and you are not living their life.
ReplyDeleteFor me, focusing on the simple pleasures that my life has to give despite RA keeps me going. I know that I could answer the question, "How are you feeling?" with "awful" but instead I try and focus on simple pleasures that are happening and all the sudden I realize my life is "good". I can then answer honestly that way.
Good luck to you. I am so happy for you that you are surrounded by such a loving community. I can almost feel the love through your post. Lucky girl!
Cathy, thanks! That's such a good reminder. It's just hard, which I know you know. I do have lots of love and support around me, which is also weird why I feel so alone too bexuase I am not. Hope you are doing well and hanging in there.
ReplyDeleteWow....way to put yourself out there, Mandy!!! Cathy's notes above make a lot of sense.
ReplyDeleteWe want to support you and help you (I speak in the royal we for everyone close to you) but it is very easy to forget exactly what you're going through! It's so easy to imagine you living your pre-RA life, because you're so upbeat and positive! Even yesterday - walking to the party even when you were in PAIN! (YA JERK!) I need you to do me a favor and tell me what I can do to help you at school. Please?! :)
LOVE YOU!