Me + Universe = :)

Now that I have finally come to terms with the fact that my life is going to change whether I like it or not, I have decided to make the most of it. My life is not over. In fact, a new chapter is just beginning. Yes I know, how cliche of me. But seriously, life as I know it is changing, and it’s changing NOW. Enough of the kicking and screaming, toddler temper tantrum.

Something my BFF Maggie introduced to me has started to come in handy now that I’ve decided to work with the universe, instead of against it. One of the most important things any person with a chronic illness can do is count their spoons. I will assume most of you do not know what I mean. So, before we continue, go read this article.

No seriously, go read it. It’s brilliant. Also, it will make this next part make much more sense.

 <WAITING>

Done? Good. Now we can continue.

So, counting my spoons; this is something I now do every day. And it works. I have never been more in touch with the needs of my body than I am right now in my life. I am slowly learning things that work, and learning the things that don’t work faster. The best way for me to function at my fullest capacity is to be true to my routine. 

I wake up at the same time every morning during the week for work. After I wake up I get straight in the shower. Once I’m done doing all of the showery-business, I turn the water on almost as hot as it will go and begin my stretching routine. I stretch my hamstrings, my calves, then my arms and rib cage. Used to, I would rarely wear make-up or fix my hair for work. Now I make it a point to put my make-up on and fix my hair every day. It really does make a person feel better about themselves, even if they’re having a cruddy day. After I’m done getting ready, I go downstairs and make my coffee. While it’s brewing I eat my bowl of cereal and prepare my lunch. Once the coffee is done, I’m out the door and off to fight traffic on my way to work. I call my mom while I’m driving to have our morning chat. It really is the only time we get to talk in peace. Some days we talk about how crappy we feel, while other days we may just talk about the weather. 

Once I’m at work I get settled into my desk and take my morning medication with my coffee. At 10:30am Miss Ellen lets me have my break. I fill my eco-friendly plastic cup with Crystal-Light lemonade and drink only that for the rest of the day. I eat lunch from one to two, followed by my afternoon medication. Then at five I’m out the door to fight rush hour all the way home. 

When I get home I put my most comfy clothes on and start in on dinner. Sometimes I have to clean the kitchen first. This costs more spoons than I usually have prepared for the night. If I’m lucky though, the husband has cleaned it before I get home from work. After dinner, it’s dishes. By this time it’s about seven-thirty. I’m usually already out of spoons, but every once in a while I can muster up a few more for a fun activity or socializing. If not, I still have enough time to catch up on the DVR or watch whatever football game is on. This is also my ice-pack ritual time. 

Followed by more stretching, then to bed I go at in between nine-thirty and ten. Night time medicine, heating pack for twenty minutes, then I die for eight and a half hours or so. Rinse and repeat.

This is my life now. And it’s OK. I bring an ice pack with me to work when my back is hurting. Sometimes I use Bengay Cool Therapy. The eucalyptus scent vanishes, so it’s friendlier for public situations. When I first started at my current work place, one of my co-workers came into the bathroom one day when I was applying the Cool Therapy gel to my shoulder.

             

         “Oh did you hurt your shoulder?”

*Sigh* Which response should I give this time? Probably the short one.

“Yeah. I get muscle spasms in my shoulders a lot.” Good. That was short enough.

           

          “Oh no, that’s too bad!”

If only you knew…

            

          “You know what my sister’s friend does when she gets spasms?”

Oh no, here it goes…

            “Her friend used to be a flight attendant. She’d get leg spasms real bad from being on her feet all day. She’d just drink some club soda and that’d fix her right up! You should try it.”

C’mon lady. You’ve got to be kidding me…

“I will have to try that sometime.  I appreciate the recommendation.” I say instead with a meek smile.

This is just one of the many dreaded conversations I often have with people. It seems that no matter how little (or lot) I tell someone, they’ve always got “the fix” for it. To quote Ricky Buchanan in her infamous “Open Letter to Those Without Invisible Disability or Chronic Illness,”

“If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought; and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, if something worked we would know about it.”

Read the full letter here.

Now, the incident in the bathroom with my co-worker is sort of an exception. I was not honest with her about my Fibro. So to be fair, she did not know any better. She really was just trying to help, and I would accept that any day over rudeness or mockery. (Yes, it does happen.) However, that exact instance is why I have decided to be open and honest about my chronic syndrome. If someone doesn’t know, how can I expect them to react properly?

“React properly.” Now, THAT is an interesting concept. How does one react “properly” to finding out a friend/co-worker/family member has a chronic illness. Well,  Maggie does a WONDERFUL job in her blog, Crohn’s Chronicles, explaining her view on how to talk to a friend with a disability. Did I mention she’s brilliant? She really is. I’ll reiterate once more, I probably wouldn’t even be writing this if it wasn’t for her strength and determination to educate the world about her own chronic disease. 

Tune in next time for my own DO's and DON'Ts section. :)