3 years

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.

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. 

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?

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.

Answers? Maybe?

So, it has been a while since I posted. A lot has gone on, and a lot still to do. We (being my Dr, my psychiatrist, and myself) think that some of my issues are due to a combination of Fibromyalgia and migraines, as well as stress and anxiety. From what little research I have been able to do, this seems fairly common in the fibro community. I have Physical therapy starting next week to try and get my shoulders and neck and upper back strong, Vestibular (balance) therapy the week after that to try to train my body to balance using my inner ear (the way most people do) rather than using and exhausting my eyes (the way my body has decided to do it). I still can't stand outside and watch cars go by, much less go for a walk. My FMLA leave is up, and my employer has been flexible and gracious enough to allow me 3 more weeks of personal leave, but that expires May 1st, and I have serious doubts of me functioning at a level high enough to return to work. I have applied for SSI/Disability, but the hoops and mountains of paperwork are overwhelming, and my gut reaction is to bury my head in the sand and procrastinate on it. Not such a good process, and now I am facing another deadline. Add to that the bills that continue to come in (over $700 AFTER insurance for some testing, just to hear that everything seemed normal), and my stress level continues to rise. I haven't even started the process of long term disability thru Standard. I don't have the patience for that again. Just trying to take a breath and relax and take it day by day, hour by hour, minute by minute.


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Normal

*There could be use of swear words in this post.




I am so completely tired of the word "Normal". Test results-Normal. Bloodwork-Normal. Thyroid-Normal. Inner ear-Normal. Everything is fucking Normal. But it is not. It is sooooo NOT normal. Not MY normal. Not the normal I have lived with for most of my life, save the past 9 months. Not the normal I want to go back to. Why can't at least one little test be NOT NORMAL?!? I just want someone to tell me what is wrong with me. Even if they can't fix it, just find it dammit! I just want to know what is wrong, so I can find my normal again.
I am tired of having to explain my symptoms over and over to another specialist. I am tired of fighting with disability insurance to get some income coming into the house so we can pay the bills until they find out what is NOT NORMAL.
I want to go back to work, live my normal life with my crazy kids and my amazing husband.
Will someone please find out what the hell is so wrong with me that makes all the results "normal"??
It is so fucking exhausting.
Frustrating. Annoying. Irritating. Depressing. Neverending. Disheartening.


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The trip to the store

I try to not go stir crazy, but the gorgeous weather is making it more and more difficult. Any opportunity I have to get out of the house, I take. Grocery store? Take me with! Library? Sure! Running errands with my mom means sitting in the car for most of the time, but it gets me out of the house. People may think I have all this free time, but when I am stuck at home, forced to run my life and freedom around everyone else's schedule, it doesn't mean much. There is only so much cleaning I can do, especially when I get random dizzy spells in the middle of it. Just cleaning the bathtub takes all day. Looking for workouts I can do sitting down to combat some of this rapid weight gain.


John has been a saint through all this. We even try to enjoy our weekly grocery shopping trip. This last weekend trip was rather embarrassing for me. See, when we do our big weekly shop, it is too much for me to be able to focus on shopping and not feel lightheaded, so I have resigned myself to using one of the electric shopping carts. It is bad enough to have to use one, so I was happy to find one that didn't have the annoying back up horn. You know the one. The beeping noise that might as well say "Watch out! Wide load coming through!!!" So I thought, "Yeah, no additional embarrassment today, we can do this!". As we were going though the store, stopping to get yogurt, some older lady (and I use that term loosely) decided to judge me. Not only in her head, but to share with her world a picture of me in the cart. She didn't know how to take pictures quietly. I saw the camera pointed towards me, held "that" way. I even heard the click. After that, I just wanted to finish up and get out of the store. It didn't make me mad, it made me irritated. Who was she to judge my abilities? Just because I didn't have a cast on, or some other obvious issue, doesn't mean I didn't need to use it. 


I try not to give it too much headspace though. They are there for those who need them. I needed it. End of story. Some stranger in a store doesn't get to decide what is best for me.    


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