It has been 3 years since my diagnosis.
3 years of fighting this devil inside me.
3 years of nothing getting better, only getting worse.
I am frustrated. I am disappointed.
I am tired. I am tired of being tired.
I am scared. I am scared that what the doctors have written down is not enough to prove to the judge that I can't work. Work? Ha! I can barely live some days. Did I go to the doctors enough? Did they write the right things down in their notes? Do they even agree that I can't work?
The constant pain, the fatigue, no, wait, the complete exhaustion that stops be from being me. It has been a month?? since I have even been able to shave my legs. The lightheadedness, the constant anxiety, the depth perception problems that make looking down a hill a bitch, much less walking down it. The fact that it has taken me 10 minutes to type this out because looking at a screen makes me feel dizzy. Sitting at a desk makes my legs go numb and my back cramp up.
I am supposed to go out to lunch today with my mom and my aunts, but I can barely stay awake after taking a shower and trying to find something to wear that doesn't hurt. Tactile Allodynia. A fancy way of saying my skin feels like its on fire under my clothes. How does a woman that used to wear suits and hose and heels to work and tight jeans and tank tops and boots to party survive when her whole body feels like prickly heat? Hair and makeup? That went the way of the dinosaur.
Doctors. Hmmm. They try, but they have no clue. That is probably why I don't go very often.
Something has gotta give though. I am getting my depression under some semblance of control with the amtryptaline, but it isn't helping the Fibro symptoms. I am still not sure what the Gabapentin is supposed to be doing. The Vyvanse for my ADD, that helps me be able to focus long enough to write this, and still remember that I have other things to do, but it doesn't help my body to let me do those things. The Zonisamide, it helps the migraines and the tremors most of the time, until I get a flare up, but then again, when I get a flare up, nothing works. So I sleep. Or I push through until my body gives out on me and makes me stop. And I get up in the morning, take my pills, and start all over again, hoping and praying for a better day.
Tuesday, August 14, 2018
Friday, April 27, 2018
Just a yard sale
We were supposed to have a yard sale this weekend. It has been on the calendar for the past month, maybe longer. Evidently the weather gods decided that after 10 days of beautiful sunny above normal temperatures, it is going to be cold and wet and windy this weekend. John came home early today and right away said maybe it wasn't a good idea and pretty much said we needed to reschedule it. Done deal, wasn't going to happen.
Okay fine.
Except it wasn't.
I am mad. I am irritated. I am frustrated. I am pissed. I want to slam doors. I want to throw things. I want this shit out of my house! Over the top response to having to change plans? Maybe. Probably. Do I care? Not really.
Why am I so over the top angry about having to cancel this yard sale? Because it is not about the yard sale. It never really was or is. It is about me waking up this morning and getting ready and having the energy to actually be productive today, which frankly, doesn't happen very often any more, and then all of the energy and motivation hitting a brick wall. It is about the time and energy that I put in to pulling things out and pricing them, the mental planning of where to put signs, how to set up the tables, the idea that I can still do something I used to really enjoy doing. It is about the fact that for the past 3+ years we have accumulated so much stuff in the hopes of reselling it through the antique stores, online, etc. that I am tired of it and I want it gone. G.O.N.E. GONE! It is the fact that we are supposed to go on a vacation to the beach in a month and I am scared that we aren't going to be able to afford it. It is the fact that we are broke. Like have to pick which utilities to pay each month broke and this was supposed to be my way of helping with that and just maybe having a little bit of mad money.
So now what? I already rage cleaned the kitchen. Put some of the stuff back in the back room. Looking at it just makes me seethe.
John is frustrated with me and I get why, because he doesn't understand that it is so not about the yard sale, because it's not Just a yard sale.
Okay fine.
Except it wasn't.
I am mad. I am irritated. I am frustrated. I am pissed. I want to slam doors. I want to throw things. I want this shit out of my house! Over the top response to having to change plans? Maybe. Probably. Do I care? Not really.
Why am I so over the top angry about having to cancel this yard sale? Because it is not about the yard sale. It never really was or is. It is about me waking up this morning and getting ready and having the energy to actually be productive today, which frankly, doesn't happen very often any more, and then all of the energy and motivation hitting a brick wall. It is about the time and energy that I put in to pulling things out and pricing them, the mental planning of where to put signs, how to set up the tables, the idea that I can still do something I used to really enjoy doing. It is about the fact that for the past 3+ years we have accumulated so much stuff in the hopes of reselling it through the antique stores, online, etc. that I am tired of it and I want it gone. G.O.N.E. GONE! It is the fact that we are supposed to go on a vacation to the beach in a month and I am scared that we aren't going to be able to afford it. It is the fact that we are broke. Like have to pick which utilities to pay each month broke and this was supposed to be my way of helping with that and just maybe having a little bit of mad money.
So now what? I already rage cleaned the kitchen. Put some of the stuff back in the back room. Looking at it just makes me seethe.
John is frustrated with me and I get why, because he doesn't understand that it is so not about the yard sale, because it's not Just a yard sale.
Friday, April 6, 2018
Questions
I am having a tough time reconciling with myself lately, as I look back at all the things I used to be able to do just a few short years ago.
How do I move past it all? How do I deal with the loss? How do I grieve for the life I once had, the independence, the dreams I once held, the future I once planned for?
How do I find the purpose, the motivation to move forward?
I am a planner by nature (some call it a control freak, but I like planner better lol) and I don't know how to plan for this. My husband is amazing, pulling a second part time job to cover as much of the bills as he can while I wait for my Disability hearing since I can't work, but now how do I find and/or redefine my own self worth?
How do I move forward when I don't know from one day to the next if I am going to be able to get off the couch? If taking a shower is going to zap me of all my energy? If my eyes are going to cooperate and my brain and body work together or if I am going to feel like I am floating and disconnected from everything? If a hug from my teenage son is going to hurt? The not knowing is slowly driving me insane, anxiety pushing me farther and farther down the rabbit hole of depression. I keep moving on, going through the motions for my husband and my sons, walking the tightrope of hiding the truth, but still wanting them to see some of the reality just so they don't think I am faking it.
Please tell me I am not alone. How do I live with this? Not just survive, but truly LIVE with this horrible condition?
How do I move past it all? How do I deal with the loss? How do I grieve for the life I once had, the independence, the dreams I once held, the future I once planned for?
How do I find the purpose, the motivation to move forward?
I am a planner by nature (some call it a control freak, but I like planner better lol) and I don't know how to plan for this. My husband is amazing, pulling a second part time job to cover as much of the bills as he can while I wait for my Disability hearing since I can't work, but now how do I find and/or redefine my own self worth?
How do I move forward when I don't know from one day to the next if I am going to be able to get off the couch? If taking a shower is going to zap me of all my energy? If my eyes are going to cooperate and my brain and body work together or if I am going to feel like I am floating and disconnected from everything? If a hug from my teenage son is going to hurt? The not knowing is slowly driving me insane, anxiety pushing me farther and farther down the rabbit hole of depression. I keep moving on, going through the motions for my husband and my sons, walking the tightrope of hiding the truth, but still wanting them to see some of the reality just so they don't think I am faking it.
Please tell me I am not alone. How do I live with this? Not just survive, but truly LIVE with this horrible condition?
Been a long time.....
Wow. It has been a long time since I have pulled this up. It came up on on Facebook "memories". What a joke. Because of course I want to be reminded annually of all the chaos that happened 3 years ago and continues to happen.
But maybe it was a good thing. Maybe it is time. Time to get my feelings and emotions out. Time to go back to basics. To journal my thoughts, feelings, good days, bad days, and my self.
But maybe it was a good thing. Maybe it is time. Time to get my feelings and emotions out. Time to go back to basics. To journal my thoughts, feelings, good days, bad days, and my self.
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