Cognitive Skills Severely Impaired

Damn it I just want to sleep. I would give my right arm right now for REAL uninterrupted, healthy sleep.

I have had sleep issues for about as long as I can remember now. Between unrestful and odd sleeping patterns, to straight up insomnia I dread nights. I also hope every night that this is he night that will be different. It never is. I’m always tossing and turning, aware of every ache and pain in my body, never in a comfortable position to relax, and waking up on average every hour on the dot. Green Day’s Insomnia plays in my head pretty much constantly. My brain doesn’t work right, I can’t carry a conversation half the time and I have not driven my car in over three weeks because I’m just not fit to.

Yes I’ve tried Advil pm, melatonin, tea, klonopin, Ativan, ALL my night meds have drowsy side effects, and had a sleep study done. No sleep apnea, but I do have restless leg syndrome. Basically I’ve been told to keep trying things I’m already doing, let my body sleep when it’s ready and adjust to its schedule. Right now I get my best sleep between 7 and noon. Pretty fucking convenient right? And double that with the Chronic fatigue and I have been living one huge party life lately of feeling pretty much like death. So for all those I’ve been neglecting, I’m so sorry. I’m just trying to get it together here.

My darling husband on the other hand, will sleep anywhere:

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One Box a Day

Do you know how hard it is to limit yourself to one box a day? But right now, it’s about all that I can handle. I’m so exhausted from the move on Saturday that my days look a little like this:

5:15 am wake up, fight some vertigo, stare at the ceiling and think about how much my hips hurt, my shoulders ache, and the fact that I don’t know if I have the strength to roll over today…… go pee, take pills, ┬ámake coffee (all hail mighty Kuerig!)

6:15 drive Ken to work. In my pajamas. Who needs getting dressed this early?

7:15 Arrive home and fall down to rest, fight some vertigo until about 9:30-10:30, because  driving exhausts me that much

10:30 try to unpack one box until the task gets too overwhelming and I end up on the floor sweating, in pain and almost in tears.

11:30 Stop to eat, take more pills, start preparing dinner, or maybe run an errand or two. Try not to die from pain, exhaustion or a combo of both. With a bit of anxiety thrown in, just for fun you know.

1:30-3:30 pm – it’s time to lay down and fight some vertigo whether I like it or not. Set alarms so I don’t sleep right though getting Ken from work.

4:00 Call my grandmother, who without her and Ken, I don’t know how I would pull through the day sometimes. I get my pep talks through them, or I just vent my frustrations of being sick, fatigued, in pain, you name it. I need the outlet sometimes.

4:30 aaaaannnnnnddddd…….I’m off again, to pick Ken up from the VA Hospital, for his shift is over. I try not to zone out and just focus behind the wheel, but admittedly it’s hard at this point. I’m very foggy, and as much as I love driving, I don’t trust myself a lot in the car anymore. It depresses me that I have lost joy and gained fear in something else in my life. I always end up letting Ken drive home, because I’ve used up all my reserves just to get there safely to pick him up.

5:30 Hopefully, if I’m on top of things, I’ve planned dinners for the week already and taken steps to pre prepare them with Ken’s help on Sunday or at least the night before because if not, starting from scratch, I’m screwed. We end up eating like crap. And I have spent all day fighting nausea anyway so it’s hard to find an appetite.

6:30 Resting, working online on a project, helping Ken unpack a box, running an errand, take your pick because I could be doing any of these things. With a little fatigue and vertigo thrown in.

8:00 Finally, I’m in bed. But i can’t take my pills yet, it’s too early. I’ll wake up like its morning at 1 am if I do. Must stay awake until 9. Finally at 9 I take my pills, and pass out.

Wake up at 10. Wake up at 12. Wake up at 3. Wake up at 4:30. Give up sleeping, and start thinking about the day over my coffee from the almighty Keurig again.

One box at a time. It’s all I can handle right now. I just want to be normal.

 

Dear Fatigue. You suck.

Today I dedicate this post to fatigue. I’ve been entirely too fatigued to post a lot lately. And I use the word fatigued because it’s different than tired. It’s more extreme and when it washes over you it feels different, it presents different, and for me at least it can make me want to pass out right where I stand.

Every few weeks my body switches it’s cycle when it hits. Sometimes it’s once a day, sometimes it’s twice or more times a day. Right now we are at twice or more a day. Which is really inconvenient because it means I have about 2 hours to be productive between spells or I have to push through and hope someone is there to help me though it because it could be dangerous with how foggy my mind becomes, someone to drive me around, make sure I have chairs to sit in, talk me into consciousness the whole time….

I’m also on a whacked out sleep schedule where I go to bed early and wake up several times a night. As of this moment, I’m banging this little whine fest out at 4am because I’m awake and angry about it, and having a moment of exasperation.

Also, winter, and dry heat inside my house can go right to hell too. I’m thankful for heat, don’t get me wrong, but it’s tearing up my nose and sinuses like crazy and anyone living in a dry heat environment knows how awful that can get. I’m there, the worst scenario.

And now I shall take my leave, for the cats are obviously fighting out whose turn it is to watch over mom at the moment, on the bed and need a intervention.

Fingers Crossed For Progress.

You know what’s cool? The Enbrel seems to be working! I’m in so much less pain, I’ve cut way back on the pain meds and my morning stamina is even up. I still have bouts of burning hands and feet, but this start is nothing short of amazing in my opinion so far. I’m still kinda on edge about being constantly immunocompromised and therefore easily able to get sick but so far so good.

My sleep cycles however are a totally different story. Since recovering from the accidental over saturation of sedatives on my liver, I’ve been able to recover from that but it’s brought back all my sleep issues. Namely, my body thinks it’s time to get up for the day at 3am no matter what, and my fatigue tends to get really bad after about noon. I’m going to be doing a sleep study soon to see if we can get some clarification on that because my sleep has been wildly out of control for one reason or another for over 10 years now.

I was also molded and folded and stuffed and fitted for a new bra this weekend for the upcoming bout of Army formal fun. My boobs hurt just thinking about that experience but there is an upside to this. Due to my recent weight loss of 60 lbs my dress has to be taken IN now! Sadly though, my boobs did not shrink. It was like hauling sandbags into a hammock. But I will be pretty damn it! Along with my hot husband in his brand spanking new service uniform, we will look good for once this year!

And with that, coffee #3 is calling….

Inkblots and Imaginary Friends.

Lately I have hit this level of exhaustion that has rendered me just too exhausted to write. It’s not that things haven’t been going on, because man have they ever, but just living through them have been enough at the moment. Writing about them, that’s just had to wait. Until the Klonopin wore off and I had my mind back that is. Klonopin is one of those great drugs that calms you down but also kind of renders your brain useless to cognitive thought, so writing is damn near impossible.

Did you know that psychologists still use those inkblot tests for things? I had NO IDEA either until confronted with my very own set last week. Now THAT was fun. Apparently I just see the inside of the human anatomy in everything, and I think she was surprised at my graphic detail on that. And I saw the bat signal on one. But really there was a point where I looked at her and exclaimed “COME ON! A two year old just splattered paint on that,” and refused to “see” anything else. Apparently that wasn’t an acceptable answer and finally I told her “fine, it’s a body.” From the best of my Internet research when I got home, while my answers aren’t standard, I got the conceptual idea of the inkblot cards right, and it safe to say I’m not schizophrenic. That was on the table?! Schizophrenia?! (One little breakdown and they think you might be full blown schizophrenic, that I will never understand. I was never climbing the walls, talking to imaginary people, threatening to hurt ANYBODY or the like.) I’m going to be skeptical of the whole inkblot method though anyway, it’s too much guesswork and not enough proven accuracy for me. Luckily the rest of my visit was more in depth and focused on better diagnostic methods concerning my issues.

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I’m convinced this one is Optimus Prime.

The summary of our week beyond that consisted of some high stakes finances. It’s like poker, only with our utilities, cable, and rent up as collateral, and we are playing with groceries. Ken’s car unexpectedly died and won a all expenses paid trip courtesy of our checking account to our house from the middle of the road. Now we have one car for the rest of the month. So there’s that to be excited about. Negotiations for obtaining my medication for my Rheumatoid Arthitis are tense and frustrating as its being held hostage somewhere between my doctor’s office and the mail order pharmacy. No one really knows, they both say someone else is fucking up. I’d also like to throw in here, that no one seems to give two flying fucks what i have to say about it because they have pushed this process through every step of the way despite my concerns, and every step of the way it’s ended up a problem for ME. Either way, I’m in terrible pain and no one is sending in back up. Stay tuned. It’s a developing situation.

Summer In the City




RVA, a set on Flickr.

Today, I have just a quick post of a photoset of my activities around the city. I’ve been trying to get out a bit and photograph some of the interesting things in Richmond, including the sites of the Richmond Mural Project, (there will be 23 sites featured total) and some of my favorite city places I’m discovering along the way. This is what I have so far, with what I hope is many more to come.

Of course feel free to browse my photostream and other sets as well! I love visitors! When you are chronically ill and hopelessly busy or tired sometimes hobbies seem to take a backseat so sharing them maybe will inspire me to keep at them and remember that I AM a person beyond chronic illness and all this mess lately, and remember the things I love.

And The Knock Out Goes to….

I feel like I was hit by an 18 wheeler today. Boom. It’s all about the chronic pain and fatigue up in here today. The crippling, take away your will to function kind of fatigue. If only I had a disability hearing today. It would be perfect. I could easily prove I was incapable of standing for more than a minute or real problem solving thought even without a sense of balance, or an active episode of neurological motion processing issues, which seem to be the only reprieve I’m getting today. I have actually been up since 6, out of the house at 7 driven to Ft. Lee and back and sat through a dental procedure with Ken and dealt with the Army’s bullshit over it today. All before 10 am. I have no idea how I actually accomplished ANY of this other than the foggy thoughts of wanting to just end it several times and sheer willpower of survival because I have no choice but to keep breathing. And I had to be the designated driver.

It’s disheartening to review my logs for my neurology follow up this week and realize my migraines have not decreased as much as I hoped, and in the past week in particular have been beating me to a pulp again.

Luckily now that I’m banished to the bed writing my confessions before giving up my breath of life for the day (dramatic aren’t I?) I was just joined by the BATCAT ever stoic in voicing his opinion of what should be done to bitch slap chronic illness right into oblivion…..

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The Meat of the Matter

I have a personal rule on this project. Not too many entries in a row where it’s super depressing sadness. Which is why I’ve struggled this week. I’ve been too tired and worn out to write, and bang out some humor up in this bitch that I’ve just held off. I do have so much I COULD SAY though, fodder from my recent trek home to DC was just a cesspool of material. So I might just change up the format a bit and get to the meat of the matter here and hit this entry with a few of the lessons bestowed upon me from my visit back to my roots.

DC is my soul city. I love my home, I think it’s beautiful. It’s vibrant, smart, fun, and full of opportunity. However, I also call it my domestic violence relationship. It’s always waiting to beat the shit out of me when I come home for a visit, because after all that’s where my dysfunctional family lives.

This trip I learned….

1. Some family members never change. You don’t even need to speak to them to be kept abreast of the news of things that continue to blow your mind to remind you that when all said and done, you’ll never be as important as others, or you’d find your ass out in the cold should a situation be reversed, or never ever gain the title of “fiscally responsible” no matter how responsible you actually are.

2. Apparently, my husband has a place to live when I kick him out and steal all his stuff and money. I have no idea where I’m going to live, but he brings in groceries, and programs VCRs making him a useful addition. My need to address things like budgets, bills and lowering myself to ask for help when we are in a hopeless situation due to my disability, his school, and military status due to gov’t bullshit, only makes me the bad guy and get this: “SELF ABSORBED, LIKE MONICA, FROM FRIENDS.” Conversations with my grandmother, extremely enlightening. And she’s the SUPPORTIVE ONE.

3. 4 hours of FOX NEWS and fixing a Windows Vista PC of a 70 year old conservative crazy republican will rot your brain and you’ll snap and start screaming at Marco Rubio on the TV and accidentally engage in an Obamacare debate with said old lady. Luckily, she will not regret you fixing her computer though.

4. Despite all the bad, I still am an aunt to 3 of the most beautiful, smart, and engaging children I’ve ever seen. And I’m not well enough to be the aunt I want to be and it breaks my heart every single second. Just watching them for one afternoon fills me with a range of emotions I can’t describe every time I see them, and it’s the #1 reason I always come back to get my teeth kicked in by the city I hate to love so much.

(Also, my physical therapist told me today he actually looks forward to my appointments with him because I always have THE BEST stories. I’ve heard the same from actual mental health therapists. Should I be worried?)

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What You See Outside, Isn’t What’s Happening Inside.

I had a day today. I was up at 3 initially, up formally at 7 and out the door shortly there after. Shipping my husband off through to the other side of Richmond to get his teeth drilled upon because THE ARMY SPOKE AND ORDERED IT SO! I needed to chauffeur in case the appointment required massive amounts of anesthesia. Of course though, the Army did not have this all well planned out and approved right and not all the work was done so no knock out meds were even used, and Ken will be making more trips to the man with the screechy drill. But that’s not all. We had to also get and issue resolved with his military ID and due to this setback we now had 3 hours to kill until “Walk in hours” at the DEERS/ID office at Ft Lee began. So after breakfast at Panera, and an impulsive investment in a dozen bagels, we bummed it up at the mall. Like we were in high school ditching 4th period. Because from time to time, I still roll like that. I even serenaded the people FYE to a little Gangsta’s Paradise when the video played on the TV. The employees thought I was nuts. Ken pretended not to know me. He says that’s not true, but I suspect otherwise. He totally left me hanging in the aisle alone. Jammin’.

We waited out the last bit of time in the ID office on post. Cracking jokes about the sad looking A.I.T. soldiers filing through like ducklings, single file behind their instructors, and a few other things we just don’t get to see much anymore since moving off post. Soldiers JAMMED in the back of a pickup cab like a clown car, massive company formation marches straight down the middle of the road halting traffic for a mile, the post loudspeaker scaring the shit out of me and nearly making me wreck the car…..I’ve become so complacent. I need to be routinely woken up by the bugle again apparently. But after that, we wandered the PX, scored some gas and finally, made it home. Total time out in public for me: 9 hours.

But here’s where I have to be honest. Today was EXCRUCIATING for me. I woke up at 3 feeling like shit. I woke up at 7 and with every ounce of strength dragged myself out of bed because my husband needed me to come though for him because he always comes through for me. I loaded up on medications, and stocked up on my “what if” meds, to be able to face the day I knew would be a long one. I wasn’t sure if a migraine would strike, but I had an aura kinda feeling it was possible. I hurt all over, because Fibromyalgia is a bitch. Chronic fatigue makes me well….fatigued.

I knew every minute of today that passed. Like staring down the clock waiting for the workday to end or Monday to be over, or whatever nightmare you can relate to that doesn’t stop. When I’m rapping in the music store….I’m deliriously passing time waiting for the next dose of mother fucking meds to kick in and I have to entertain myself. I have to laugh. HAVE TO. The rest of the day is spent cracking snarky jokes and making observations to TAKE MY MIND OFF either A. The clock, B. the pain, or C. Falling down and sleeping where I am sitting/standing. On the way home, I even had this crazy vertigo disorientation where I felt like the car was no longer gripping the road and very well MIGHT spin out of control. Turns out my brakes and traction are just fine, it’s just my brain, just definitely having enough of today. When people can’t understand why I can’t commit to working and NEED to be on disability at this point, just simple outings like today are a perfect “fuck you” reminder for me to convince me that I’m not well, and it’s just the way it is. I’m going to continue to push my limits, explore my life, do my thing, but I have got to stop letting other people determine my worth, goals or the pace at which I should be doing it.

Trying To Ration My Spoons.

Ken has his appointment with pain management today, to get further insight on his back. I wish we could get more answers in just one appointment, but we all know this is a process, so I don’t know if I will know very much even after this initial meeting. I need to pick up my own records (all of two visits before they moved me on to another specialist) and then I need to get the records from the neurologist (the other specialist mentioned previously) because I need to have them to continue with my initial filing for SSDI.

AAANNNNNNDDDDD…….. Speaking of SSDI, they just interrupted this post to call me. Because this system is unbelievably annoying to deal with as well. But I knew that going in, and I’m keeping up on my research to be prepared to deal with them. I’m going to have to cash in a lot of spoons to deal with it.

I’m comparing everything to spoons these days. Its based on an article I read for a way to help others understand what it’s like to be living with a condition that makes you take even the smallest of tasks for granted. Read up here. I’ll be talking about spoons I am sure in the future, so this is where it came from.

The Spoon Theory