So, I'm literally cheating right now. I'm part of an ankylosing spondylitis blog group and I'm several blogs behind and yep-I'm combining them to catch up!
because I've literally been in a BLOG FOG!
So the first item is sleep-which I now think should've been a 4-letter word! Those of us who are in pain 24-7 don't really "sleep". Have you ever woke from your sound sleep because you're hurting? Maybe you moved and something all the sudden felt like a KNIFE stabbed you? Well, I have and do all the time. My eye even hurts and wakes me up. MY EYE THAT'S CLOSED! So, sleep is not something we "really" do. We try and rest every now and then, and even that's hard! OK-so what happens when we need some sleep or have a lack of sleep? We get ill! Not sick ill, but cranky! Hence the reason we're sometimes a bit short and snappy. But, folks don't realize that. They just think we're rude or something. You try going without sleep for days, weeks, months, YEARS!
Friendships--sometimes it's just best to not have them. They don't really understand. So, my "close" friends are few. I have those few (very few) that I can call on the way home from the doctor and cry or share how I'm feeling and they listen. They do try to understand, but I know you can't understand "things" that you haven't gone through yourself. I am thankful for those "few" that I have and love them dearly! DW and T--I love ya'll sooo! As for "couple friends"--you know the married couples that you and your spouse do "stuff" with. Hmm...we have a few of those, I wouldn't say close though---but my outings are few.
Which leads right to, social outings! We LOVE doing things and going out. But, my time is short. I can't do what I could before AS. I'm finding "outings" have to now be timed around my infusion. Like the week or two after that I can actually function--not a normal functioning--but function. Because if something comes up when I'm in week 4...forget it! All I'm thinking about is how much I need that infusion and could it hurry and get here. So, for the most part, my outings will be focused on what my kids are doing. I have to pick and chose what I do and know that some of the things I do chose are going to put me down for a day! Oh, and that's not sleeping, it's a day of rest. I call them time-outs!
So, here's the deal with sleep, friendships and social outings--are you going to be all upset when I cancel because of how bad I'm doing at that hour before something is planned? Then it's not worth you being my friend, because it's going to happen. Just recently my sister wanted to take me to lunch for my birthday--I called her 30 min before we were supposed to meet to let her know, I'm not feeling good and can we do it another day?....she understands-would you? Most don't understand. They all the sudden get the "oh, she always cancels attitude" and then they stop inviting. We'll that's not what a "true" friend does. A "true" friend tries to gather all the knowledge they can on ankylosing spondylitis so they can understand a little of what I go through.
Do you know someone with a chronic disease? What have you done for them? Do you even try? Have you ever said- hey "you're feeling bad today?, we'll how about I bring over some dinner". Maybe clean their house. Or pick up their children? Send a card letting them know you're thinking of them. Or simply, I'll be praying for you and I'm sorry. Most acquaintances simply stop "acquainting". They can't understand nor do they want to try, so it's just best to not be "friends".
I've learned a LOT about how I should've acted all through my life--because I've always known people with chronic illnesses. We are all just so busy with our own lives, it's hard to really stop and all the sudden walk very slowly beside someone with a "disease". There are only a few people who will slow down for a disease ridden friend. If you've read this far, maybe you are that person--I'm not saying come clean my house or bring me some food--hahaha But, you know others--people who are in need. Can you help them today? Is there one little thing that you could slow down and do for them today?
AS has my body, but NOT me!