Thursday, January 26, 2012

Who is on your team?

I read a lot of posts about Rheumatoid Arthritis, Fibromyalgia and related illnesses.  There are some terrific bloggers out there (shout out to @ArthritisAshley @rawarrior @RAGuy @wren ) as well as groups on Facebook and articles from Arthritis Today that are really informative.  When reading articles and posts, I often read the comments as well because I know we all have a different perspective and I feel that we can learn from one another, even if it's what not to do.

 I have mentioned before that I don't often participate in the different online forums because I find them horribly depressing.  The folks who are not "happy" unless everyone knows how miserable they constantly are just bring me down.  Weeding through that can be tough but, those posters aside, I have seen two common recurring themes among those who are struggling, whether they are newly diagnosed or in the midst of their illness.  Those two themes are pain that is not managed and a lack of support.  

I am very sad for anyone who does not have a support system.  I often see stories about spouses, friends or families that just don't understand what "we" are going through.  More often the issue is that while at first everyone is understanding, after a time the people around them get tired of taking care of them, get tired of hearing about the pain, get tired of changing plans because of the exhaustion.  This is compounded by the "invisibility" of our illnesses.  It's not like we are wearing a cast or have visible bruises or scars.  We look fairly normal on the outside while inside our bodies there is a war being waged.   I can see how that would be frustrating for someone who is not feeling the constant pain, who doesn't know the exhaustion, who only sees that we cannot (maybe WILL not in their minds) get out of bed or go to work or pick up the house or care for the children or whatever it is that they expect.  It's a game changer when we are living with a chronic illness and not just as the patient.  I understand that.  That does not mean that there is any excuse for giving up on, for not believing in, a loved one.

I was reading several of this kind of post last night before I went to sleep.  I was sitting in my bed with Auggie resting his face on one knee and my iPad on the other.  Hubby was downstairs, watching his TV and Harley was with him.  This is a common position for all of us.  I was exhausted.  I am in the midst of another round of insomnia and had been up since 1:47am (I slept till 2 today- yay me!) and it was taking its toll.  Even though I had been up for far too long, even though my eyes kept drooping and my body said "just lay down", my mind would not shut down and let me rest.  When I am like that, I am VERY cranky. Everything irritates me.  Hubby knows this and gives me time to get to sleep before he comes to bed.  It's better all around that way.

As I read through the comments at the end of the article and was thinking about my current situation I realized again how fortunate that I am to be blessed with a terrific support system.  My hubby and son, my parents, my sisters, my friends, my colleagues and even my puppies give me a myriad of people to talk to, to lean on when I am having a rough spot.  It's a rare occasion when any of them makes me feel like they don't understand, sympathize or support what I am going through.  They, along with my Rheumatologist and my boss (who also lives with RA) give me a whole team of people who help me stay positive, who help me research new drugs and findings, who pick me up when I am down, who keep me fighting when I feel like just giving up and letting the illnesses take their toll.  The whole team just wants the very best for me in terms of treatment and in my health and when you have a team like this, it makes you want to fight all the harder so that all of their support is not for nothing.

So who is on your team?  Who in your life lifts you up and makes you a better person?  


Susan said...

Love your blog, have been stealth reading for some time.

My three children are my motivation, my inspiration, and my team. Two of them also have RA, so we lean heavily on each other. Taking good care of myself is the best way to care for them.

I also have a wonderful group of women friends who I see weekly and email with and a best friend who is much younger and has become my travel companion. We both have celiac disease, which makes traveling difficult, sharing that difficulty lightens the burden.

Keep up your positive attitude - its great to read!

Julie Faulds said...

Hi Susan! Glad to have you here. I am glad you have been enjoying what you have read thus far.

Isn't it a huge blessing to have people in our lives; especially so close to our hearts, that can inspire, motivate and just love us.

I am so sorry to hear that your children have RA. I cannot imagine what it's like to be so young and in so much pain. Are they finding relief through treatment? I hope that they are, I just hate the idea of little ones dealing with what we have to. It's just not fair.