I like being able to take my kids places and play with them. I get so much from teaching them, it’s unexplainable. I enjoy blogging, I also enjoy vlogging BUT when I focus on my blog I come away with pictures and get to scrap or smash them later!!! I run with all my soul, I run while I pray (it’s my Holy place and my meditation,) I run while I think (it’s my quiet place – the only place where the chaos of my ADHD world and my family is silent – I plan my art projects and writing and lesson plans,) I run while I cry (I let everything fall away.) I like to laugh, I love shoes and I can have a ball glamming all girlie in the mirror, playing with makeup and planning outfits – OH, and doing my nails. I adore sports, American football is my favorite of all time but I spent the entire Olympics with my TV streaming coverage and actually sat in front of the TV during updates from 7-8 in the evening because I love ALL sports.
I put all that out there because I know that I can come off as a frivolous, even silly, girl sometimes. I know that it can all seem so surface and there are four parts as to why that is.
- Those things make me truly and honestly happy, they are my heart and I wear my heart precariously perched on my sleeve. So right there on the surface is almost everything you really need to know.
- I spent a very long time eye rolling and dismissing the girlie side of myself. I considered all of that weak or lame and I hated enjoying any of it. I don’t know why, but when I got older I started to see my femme side as where I am truly happy and confident. When you are happy and confident you are powerful, so actually by allowing myself to embrace and be myself without shame I am quite the opposite of the weak insignificant girl i felt like – I am a woman, unapologetic and scary strong.
- I have a relationship with God, but I don’t feel like talking about it (because talking usually become arguing.) I believe that living my life the best I can is ministry in itself and if I am happy and fulfilled and open about the fact that I attribute that to God then people will (and have) ask and that will lead to a open and calm discussion. I don’t think that politics make for a great topic for me to blog about. I have opinions formed from being as educated as I can be, but I am still learning and bumping around. I don’t know enough to guide you or argue so I don’t try. Basically I have no interest in discussing those “hot topics” with anyone other than my close friends (even not all of them) or my wife and children.
- Finally, I don’t really know how to say this one. I guess the words would be, “I’m sick.” only that seems like something more or different. I would say, “I was really sick.” only that seems to imply, “but now I’m better.” I know that life has no guarantees and I would rather live and be happy – fully embrace those light, airy, lovely things. Make memories and change my world while I can, whenever I can. I have Fibromyaglia, arthritis, suffer from sever migraines and anxiety. I have made many life changes due to my health. Lost weight, exercise regularly and eat well – still those things haunt my life. I can see a correlation between stress and the fibro and migraines, the more stress the more likely a flare up is. However its isn’t always the case. These things seem so random sometimes, so completely out of the blue that I forget they are even around waiting to attack.
Yesterday I felt off, just tired and worn out from the start. My eyes wanted to close and my body begged to lay down. The kids were doing great with school, we had started at 9:30 and by lunch (1 p.m.) they were both practically wrapped up. So I told them to break (couldn’t play out side due to weather) and go have some fun. I lied down on the couch feeling dizzy and weak, I had a fitful nap and then when I woke up it was with a blinding (literally) migraine. My sight becomes blurred and/or tunneled for a bit when I catch a throbbing migraine. I started to move and felt the familiar heavy ‘rust’ feeling of fibro. It’s like a thick wool blanket is over my body, head to toe. My skin is sore, my body is locked and everything hurts. Unfolding my body is a long and hard task, each frozen muscle popping painfully. My joints feel like there is sand paper between them and I my body has no strength. I can barely shuffle to the kitchen for a mega dose of Advil, thank God for the new child proof caps, because I would not be able to open the push and turn ones right now.
I load the dishwasher, it takes an hour. Load a few, sit down, load a few, sit down. This is how the day will go. The kids know I don’t feel well, they don’t know how bad it is. I work hard to keep it that way, we had a rough year a few back – one where I was very ill with erythema nodosum and was left virtually unable to walk or move much for weeks at a time and they worry that something like that will reoccur. This time it’s easy not to let on, Wife just had the flu and spent a week in bed unwell. That’s what they think I may be dealing with. Lou ♥ completes her class and Mavis, darling! chooses to continue reading her supplemental book in her bedroom (I swear the fact that that child CHOOSES to read or will ask to do an extra lesson makes my heart swell!) I am left to lay on the couch, only that is admitting defeat, that is giving in or being lazy so I continue to putter around the house doing small chores that now take so much more time and effort than they should. I just want to cry, because when I feel like this I feel like I am back at square one.
Often people will say that fibro is not real, it’s depression or obesity. Thing is when I first got that diagnosis I was depressed, I mean I had been in pain for over a year. I was over weight, also. So it was like they gave me “Fibromyalgia” so that they could shut the book. It was almost like I couldn’t argue it, my own fat self was all the proof they needed. I was angry and I was sad, and I felt helpless. Then the Saints won the Super Bowl. I know that seems so randomly dumb, but i grew up here with a losing team. I was always a fan, but I was often alone. No one had nice things to say and if I insisted on watching a game it was as if the team was determined to be all the proof the haters needed. When they won, finally, after hurricane Katrina at that, it just seemed like a beacon. Like a great glowing sign that said, “ANYTHING IS POSSIBLE WITH FAITH AND HARD WORK” – now, I have always had faith and I felt like I did work hard but maybe there was another kind of work I needed to do. Work on me, because before you can change the world you have to be able to change yourself.
I set about doing the hard work in May. I changed my eating (which was my addiction and my way of dealing with everything.) I started working out with a stationary bike three times a week for 30 minutes a day. It wasn’t much, but it was agony. My body hurt, my body wanted to quit, my body started to change. I lost weight, I pushed harder. I lost more, I got stronger. I started running the day I turned 30, I found a part of me I never thought I was missing. I changed my world, I changed the world of my family and of others. I became more than anything I imagined, found purpose and a happiness I could never imagine. I am NOT depressed, I am not lazy, I am not obese, I am not the person I was. I am still in pain, always. It’s a really strange world, like there is a level of discomfort I have accepted as reality. I opt not to use daily medications because they made me sicker or, because a lot of them are mood meds for depression, an emotional wreck. It was like the side effects were worse than pain. The constant workouts make things easier most of the time, they keep me mobile and my body more liquid. The same with the migraines, the medications were just too much. I now treat them with a lights out, lie down, heat on my neck and shoulders and cold on my head… all things I had to do while taking medications anyway.
Another big change is that I don’t work, that is important because when I am in extreme pain it’s hard to get anywhere on time (and seeing that that can be as little as 2-3 days a month to as much as the whole month it’s hard to ask an employer to understand) and when I have migraines (usually 6-10 a week) I can’t drive due to the double vision, loss of vision or tunnel vision and I can’t really work due to the pain and accompanying symptoms. Not working is scary, I mean we live on one income and it makes me sad that I feel like my wife is under such pressure, but it was really the best move for me and in turn my children wound up home schooled, which is such a blessing. People often ask how I can home school if I can’t work, well I don’t have to drive (my illness often made them late as well, poor things) and we can move lessons around when I am actively ill. Basically, because it is in house and flexible.
I am a long way from the physical proof that Fibromyalgia is really just obesity and/or depression, still when I get so sick that all I want to do is lay down for a day or week it makes me angry and sad to think that this pain, this very real pain that is taking a runner off her feet, is so easily dismissed by so many in the medical world. It makes me so upset that I can’t get answers or help, that I’m treated as if my mind is broken. It fills me with sadness and added anxiety that I can’t contribute to my family in a monetary way, though I thank God that I have a partner that recognized what would be best and doesn’t begrudge me that.
It hurt all over today, not in the everyday way.
I got up anyway, made my wife a hot breakfast and prepped a lunch for her to take to work. My hands were so hurt and my arm muscles so weak I couldn’t open her coffee thermos, those are the physical reminders that take the most to move on from. The absolute helplessness I feel when I can’t unscrew the peanut butter jar, or take a shower without having my wife at home so she can listen in on me (I’ve had a migraine hit while I was showering and I crumpled to the floor of the shower under the down pour of water unable to help myself for a while – it’s scary.) I am not weak anymore, so I hate having my body betray me this way. On days like today, days likely to stretch into a week at least, the gravity of my life feels too big and I just want to smile and laugh and be free of this, I plan a run (which will happen, it will just be very close to home and short) and I pray for peace and endurance. I put my chin up and I focus on the things that make me happy, things like teaching my babies, playing with them, football, makeup, pinning fabulous shoes to my pinterest boards… frivolous girlie things that are nothing but joy and fun.