#fribro

Recently, I read an article about a women who competes in triathlons while receiving disability benefits. Among the concerns raised in the piece, the writer posed the question, "should there be more scrutiny?" As a person who spent six months wrapped up in insurance red tape and another 2 years in social security hell, I do not believe there is a need for a wholesale increase in scrutiny.

I suspect that people who apply for disability benefits have had experiences similar to mine. We are people who want to work, who fight to keep working until the bitter end, who look to benefits only as a last resort. Please don't make us suffer because a few people among millions are perceived by the media to be fit for work.

When I quit working, I had to sell my house, my car, and most of my personal possessions. Within a short period, I went from being an independent adult to an income-free middle aged man living with his parents. In addition to losing my property, I had to quit the activities I enjoyed, like cycling, trail running, and backpacking. Most of the time, my pain has prevented me from participating in social events. Often, my head hurts so much I can't even read, let alone work. 

One requirement of employability is that a person is able to consistently perform work duties on a regular basis. I keep track of my activities and have calculated that I spend just over 95% of my time in bed. I require 10-12 hours sleep at night, and midway through the day, I need a nap of 2-3 more hours. That means I have 9-12 waking hours per day. Like anyone else, a chunk of that time is spent eating, another on hygiene, and another on restroom use. Let's take off a couple more hours for that stuff. Now I'm down to 7-10 potentially productive hours. On a good day, I can be somewhat active for 1 of those hours. The remaining time, I am idly lying in a bed or on a fully reclining chair. Today, I have spent my good hour typing this rambling post.

While I now have been able to resume some physical activity, I can only do so once or twice a week and only for an hour or two. Last year I averaged 1.5 hour of activity per week. The other 166.5 hours? Other than medical appointments and irregular contact with family and friends, I spent nearly all of that time in bed.

Every time I write or clean or anything else, I have to rest for a lengthy period afterward. I generally rest for a period of time 2-3 times the duration of the activity.

I'm gonna start with the bad so I can end on the good.

Bad:

My thyroid gland decided to quit on me so I'm more pills. The annoying thing is that the side effects from these pills are hair loss. The last couple months my thick hair has thinned out so much its just not fair. Really? I'm so done with my body I'm waiting for a new one.

Winter is here and its doing its thing. My body isn't happy with it but you know it will pass and everything will be ok. Every day when I wake up I'm in so much pain I can stand or get up so I have to lay in my bed for 30 minutes or so till I can do anything.

FIBRO FOG!!!! AHHHHHH its been getting so bad these last two weeks!! I keep forgetting whether I took medication, panicking for no reason, mixing things up, ect. It has never been as bad as it is now. yesterday at dinner I started freaking out over where I put my fork, I stood up to go get another one and someone pointed out that I was holding it. I almost shaved my head when my sister left her razor on the bathroom vanity where a hair brush was. I picked up the razor and then almost put it across my hair. There are more but I could go on and on.

Brian(my boyfriend, almost a year now!) has been really sick. He is a type one diabetic who has been having a lot of stomach problems where he throws up everything he eats and has to force himself to eat. I have been taking him in and out of the e.r. but no real luck on a diagnosis. He stopped throwing up as much now but its like his stomach doesn't to work sometimes and wont let him eat.

Good:

I  love my friends and family so much. I feel so grateful for their support through all my troubles. My boyfriend is the best. He is always there for me when I need someone to hold me when I get attacks. He has seen me at my worst and somehow still finds me sexy.

My music. I'm playing piano more often and working on more arrangements for my vocal jazz class. I love music and it brings me such and indescribable joy that I can't imagine my life without it.

are fucking killing me. 

I wants to chop everything off.

Things that are going good?

-Everyone is sleeping.

-I can be alone.

-I am half naked.

-I am watching Supernatural.