I knew it was going to take awhile to get that sliver of equilibrium restored after the stress and chaos of the move across the states. It has been near 4 months since we packed the U-Haul and trekked the miles and it has been a bitter struggle to keep my head above the water, so to speak.
My body has betrayed me time and time again. Some of that betrayal my own fault as I pushed beyond what Fibro would allow and as I ignored boundaries that would inevitably make me feel better.
Like just now, I dropped the laptop and my hands are not cooperating with me. My brain is wrapped in thick fog and I have to focus extra hard to type these words out.
Flare.
I should be used to it by now. It's been 2 years of this up, down, side, back, forward, back again dance. It is dizzying (literally) and terrifying and frustrating....
and I am angry about all of that, most especially on days like today where I feel it so severely, but I am also elated somewhere deep down.
Elated?
Yes.
These 2 weeks alone I have been able to:
-go to my Uncle's place and hang out for a few hours
- Go get applications for medicaid and food stamps, apply for SSI, go Christmas shopping with my mom (shopping is extremely difficult for me, particularly when the motorized carts lose battery and I am left to walk the mill of a store.... usually Target. ;) And this was all in one day! PROGRESS.
-put up our Christmas tree and decorations with my family
-go to social services and have my interview (no easy feat since chatter and walking take a lot out of this physical body)for food stamps. I was approved for emergency status and have already received my card in the mail. Thank you Jesus!
-have a phone interview for SSI for OVER AN HOUR, and then go to the library, hang out at a bookstore like I used to, and go to church. Again, sounds simple but for Fibro, it is a huge victory. Conversation, noise, and lights are all depleting the body of energy and sucking away the ability to function in general. I sat with 2 ladies I met awhile back and one of them invited me to serve at a soup kitchen. This enthralls me because I miss serving SO much and I am itchy for fellowship here, but I know this is going to be a baby steps thing. If I feel able I can serve in limited capacity, seeing as how I cannot stand for longer then a few minutes and the interacting is going to be considerable. I am willing to try, and I am going to attempt not to beat myself up too much if my body is not ready for that yet. I am so happy I was able to make church and that I got to chat with people.
-go out the very next day to a movie by myself, which I have always loved so much. I did not use earplugs for the first time in a very long time. It was actually 10 minutes until the movie until I noticed. Had to cover my ears during the motorcycle scene, but that's still amazing! Driving myself places with ease now, when before it was entirely overwhelming and took ALL of my focus. I could not have the stereo on or people talking. It is still difficult at night or when others are in the car with me, and I feel this pressure to hurry up when I am out by myself.... sort of anticipating the flare and wanting to beat it so I don't have to call someone at home and have them pick me up if I cannot handle the drive home, but I AM DRIVING again. This has done wonders for self-esteem and feeling like I CAN do things independently. After all of this I went home and skyped with Mylie for a long time. Got to read her a couple of books and play games.
-the very next day going to the library again, and hanging out at the bookstore. This gives me a semblance of having a life. At the library I carried my own stack of books (something we take for granted in a healthy host, but what becomes a huge feat when your wrists and arms feel like they are being stabbed repeatedly by tiny ice picks). I saw so many gorgeous colors in the leaves and trees around me as I drive around. The stereo was going and I thrived. After those 2 tasks I even went to to the grocery store and WALKED the length of it as I got groceries. I didn't get very much and nothing heavy. Just fruits, frozen pizzas, eggnog, and simple things I knew I would be able to lift. My bad ankle started to throb immediately and I was limping, but I did it. And I did it while talking on the phone. I also was able to return a few phone calls. That is major since talking on the phone was always a horrendous experience these last 2 years. It's getting easier. Last night I chatted with my best friend and then with my auntie and had the privilege of praying over her.
It may not sound like much but all of those things are amazing, amazing victories for the Fibro patient. Yesterday I skipped all of my medications except for thyroid and acid reflux. I wanted to give my body a break so I took 10 charcoal caps twice during the course of the day to clear out toxins.
I was flying high and despite some massive aches and pains,and of course the fatigue, my body has been allowing me to function a bit better. It's sort of hard to truly describe unless you are going through your own chronic conditions. All of the problems are still there, and there are "penalties" for whatever you choose to do...
case in point, I am now a clumsy, easy to snap bundle of extreme exhaustion and overwhelmed with noise and anything that affects the sensory spots. My wrists and fingers implore me to stop typing, for which I shall very shortly...
However, I am now hopeful again. I had high aspirations to maybe take an online class at the community college next semester, but have since decided to wait. I am not ready for a commitment to anything just yet and would crumble to bits if I push myself even harder then I already do. Someone asked me once, "do you ever just try to push through and deal with it?" I was highly offended and my ego puffed up like a balloon. I didn't say anything but I should have said: Yes, I push through every single day. I push through as soon as my eyes pop open in the morning and I feel that first blast of fatigue and pain. Pain that has no limits. Pain that may be in the hip or the thighs or wrists or even just in one tiny spot I didn't know had the ability to hurt. I push through when I take a shower, lifting the shampoo and conditioner, shaving my legs, soaping off. I push through when I have every conversation, when I drive a car, when I do things like have a 40 minute phone conversation or put up a Christmas tree.... things I always, always took for granted. I push through when I sit at a dinner table or go to a movie. I push through. I take many medications to balance my intestinal tract, to hopefully kill the candida that takes control and makes me crave only sugar and carbs, to make my thyroid function properly, liver medication, acid reflux, heart medication, so many supplements... the list goes on and on. But I do not have pain medication during the day. I do not have anti-anxiety medication, but for 15 pills a month which has now stopped. I would love pain medication, but doctors are hesitant because they don't want us to be addicted. So silly. The people that need pain medication should have it. Isn't that what it is for? So I would say I push through. I push through even when I feel despair, even when I feel like giving up, even when I just can't take it for one second longer....
I PUSH THROUGH.... and not on my own. I push through because I have a God who is on my team, already pulling my resistant self towards the finish line. I have amazing friends and family. I have THE most magnificent Fibro support group online. I have a Fibro sister/best friend who lives in Alabama. We've yet to meet in person, and I've never even heard her voice, but God has so aligned our hearts and given me one of the most treasured relationships in all of my days. I have a family who with all of the frustrations and daily peeves, is there for me no matter what.... in California, in Texas, in North Carolina, in Georgia.... all over. I have best friends who I have known since I was 12 years old. I was thinking about it when on the phone with Monica last night. I am grateful that I have a girlfriend who I could be myself with at 12 years old and today at 31 years old. I have no doubt that when we are 87 years old, I will be sitting somewhere with the phone pressed against my ear with her voice on the other end. I have insanely sweet fellowship- people who rock my world and show me Jesus.... La'Tees, Theresa, Melinda, Meagan, Lindsey, Ashley, Janelle,
Josh, Jeremy, Nikki, Melis, Camille, Roxanne.... the list could go on. People who inspire me with no idea that they do... all of the survivors & fighters. I have a precious, beautiful child in my life who knows me and loves me and who has forever wrecked me with how much I adore her. I have nieces and nephews, aunties and uncles, cousins who are my best friends... all whom have inspired me and who I love so much. I have a mom and a dad who go above and beyond, and a best friend who has stayed beside me through every mood swing and every struggle (thank you Aaron. I have sensational relationships with 4 teenage girls who make me proud every single day. There are so many others I could name, and if you were not mentioned, know this....
YOU are special. You have impacted my life. It doesn't matter if we have known each other for ages or if we are connected by a computer screen. I am so thankful to my God for YOU. I am thankful that your eyes have found this blog. I am thankful that I got to know of you and I am so grateful that God has blessed me through you.
A great deal of time this Fibro fight is lonely. I have felt helpless and hopeless and downright not wanting to exist anymore. But I have also loved harder and God has opened up this heart of mine so wide and so deep. I am in love with creation like never before and I am expectant of the goodness of God.
I am imperfect. I make many mistakes. I fail at times. I get knocked down.
But I get back up.
And I wait for the next great day, because I know it's going to come again.
;)
Lately I have been crushing on:
frozen hot chocolate
books (of course)
Katy Perry's jams
Mad Men
Pinterest
leaves and trees and sky
Proverbs 13:12
Hope deferred makes the heart sick, but a longing fulfilled is a tree of life.
