The Quirky Life as a Spoonie

You know those urges….the ones to do something random and you just follow them? I’m staring at my kitchen table trying not to follow the severe urge to paint the whole top as a mural. Endless hours spent painting on this table has made many oil and acrylic paint stains. I already have the whole image in my head. Must…..resist….urge!

So I hop over to my coffee table\1950’s military trunk and think, hmmm….this could be fun. I’m thinking a starry night type theme!

The new year is upon us at last. I say at last because 2011 was full of not great things. But for me it ended the very end on a very happy note. 2012 is going to be a good year, I can feel it. I’m starting the year with a happy heart, a smile on my face, warmth in my soul, and the knowledge that I am healing and have a strong support for that healing. I do not believe in “resolutions” for a goal you want can be made at any time and should not be based on a date, so no “omg this year I’m gonna” for me. I encourage you all to just have this one simple goal in mind…..enjoy life to the fullest and be happy.

<3 those moments in time when you just want to freeze it and never let it go.

Ok, this gunk I have needs to go all the way away….for good! Had aqua therapy today and lemme tell ya, its hard to just keep wimming with no voice and a clogged up head! Land therapy at 8 in the morning tomorrow. Yeah, not exactly thrilled bout that little adventure. But, as always, I am keeping a smile on and a positive mind! But for now folks, I think ill just keep….laying down. :P

1. The illness I live with is: It’s rarely ever just one now is it? Lupus, Fibromyalgia, insulin resistance, hashimotos, PCOS.
2. I was diagnosed with it in the year:It all came to be diagnosed by the time I was 21.
3. But I had symptoms since: Well, various symptoms my whole lifeof hashimotos and PCOS, the other stuff when I was 17.
4. The biggest adjustment I’ve had to make is:Learning that I can’t live the life I used to live, or do things a normal 22 year old can do….
5. Most people assume:That I am over reacting and it can’t possibly be so bad, because “I look so healthy and pretty”. What they don’t know is the amount of make up it takes me to look that way.
6. The hardest part about mornings are: Waking up. It is so hard to just wake up when you’ve suffered a night of little sleep and constant pain….It takes me 30-45 min to even get my eyes open.
7. My favorite medical TV show is: Grays Anatomy. LOVE it. It is quirky and fun and loads of laughs with actual real problem involved.
8. A gadget I couldn’t live without is: My camera. It helps me escape from it all and I couldn’t live without my art.
9. The hardest part about nights are: Trying to find a comfortable spot to lay, then trying to actually go to sleep. I am lucky enough to have people willing to hold conversations with me at 2am if I can’t sleep and need to just talk.
10. Each day I take _13_ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: Think they can really help, if you research enough and know what you are doing.
12. If I had to choose between an invisible illness or visible I would choose: Invisible. It is really nice to go places and be able to pretend, even for a few minutes, that I am a normal person. When someone compliments me on my looks and they aren’t doing it because they wanna make me feel better.
13. Regarding working and career: I recently just had to turn in my notice at work because my body can’t handle the stress of the job. I love working….love my photography. That I can stick with. So I always know that one thing is behind me.
14. People would be surprised to know: That as strong as I seem, and as well as I handle my illnesses, I do feel the pain, and alone in my tub or bed, I cry. I let it out sometimes, and those times I close my eyes, I’m not daydreaming, I am holding back tears that come to the surface when the pain hits hard.
15. The hardest thing to accept about my new reality has been: How life changing it is. How differently people treat me. THAT is hard.
16. Something I never thought I could do with my illness that I did was: Be strong. I thought I would be defeated…..I was not.
17. The commercials about my illness: The only one that gets a commercial is Fibro…and they are so misleading. Fibromyalgia can be helped with medications….but it is still a struggle, it still puts you out of work, and can seriously debilitate you.
18. Something I really miss doing since I was diagnosed is: Dancing. I miss going out and dancing my rear off every weekend. I also miss working out. I loved that work out feeling.
19. It was really hard to have to give up: Freedom to do anything at any time no plans needed, just go and do no problem.
20. A new hobby I have taken up since my diagnosis is: Knitting. When I can’t do anything else, I can knit and crochet. Keeps my mind on that one thing.
21. If I could have one day of feeling normal again I would: Go to New Orleans, my fav city ever, and walk walk walk exploring all my favorite sights.
22. My illness has taught me: To be patient.
23. Want to know a secret? One thing people say that gets under my skin is: “But you’re so young” Yes, and? I am aware of my age, you pointing out the fact that I am young and under the control of disease doesn’t help matters at all.
24. But I love it when people: don’t just offer to help but do. My best friend is such because of her un ending ability to care for me. The woman comes over and bathes me when I am unable to do it myself. That shows true heart.
25. My favorite motto, scripture, quote that gets me through tough times is: I honestly don’t have just one. I have a whole list of songs instead.
26. When someone is diagnosed I’d like to tell them: It’s hard, I know, but trust me, you CAN be strong and you WILL find a life within this illness.
27. Something that has surprised me about living with an illness is: How unforgiving most of the population is towards sick people.
28. The nicest thing someone did for me when I wasn’t feeling well was: Come over and give me a bath. Then there’s my grandparents who CONSTANTLY do nice things to help me. That is never ending.
29. I’m involved with Invisible Illness Week because: It means so much to me. It is a huge part of my life.
30. The fact that you read this list makes me feel: Cared about.

Co worker came up to me today and said, “you are losing weight. You are looking drawn and hollow and so tired. You barely look human anymore. Please, before you go into the hospital, stay home. Fuck the boss, everyone sees through your wan smile and acts of being ok, you’re so sick you can’t even walk on your own legs.”

Tears flowed from my eyes as I realized I am not so good at hiding it. My hands are swollen, knuckles red. My limp is very prominent. My eyes are sunken in, my skin ashen. My clothes are hanging off me, stress has caused a sickly weight drop. I thought I was hiding it all. Make up and a smile. A smile that I now know doesn’t look real, and is instead wan. I wasn’t aware that I have been twitching violently….and hold myself in a tense and pained way.

Now I face this….job or health!? I’m laying in bed right now with shooting pain in my legs. I won’t make it to work tomorrow. I will, however, cry.