Thursday 30 April 2015

The Times Chronic Fatigue (Syndrome) Brings Me Down

Normally I can deal with the symptoms.  I just keep going, don't stop (until I drop), and generally don't complain about my symptoms.

I find the older I get and the longer this consumes me, the more anxious and sensitive I get.  By sensitive, I mean misophonia:  "literally "hatred of sound", a rarely diagnosed neuropsychiatric disorder in which negative emotions (anger, flight, hatred, disgust) are triggered by specific sounds. The sounds can be loud or soft."

The site I linked is one of the more comprehensive sites I have found.  If you fear you have this condition - I warn you, just READING about the sounds will cause you to twitch, grit your teeth, and become quite agitated.

I tried to go on a few forums with respect to Misophonia, and lasted less than a day as reading about the sounds was just so overwhelming.

So with Misophonia, I get really anxious.  It's a really awful feeling, so I just try my best to stay in my happy spot.

At work I have a wall full of pictures of those whom I love - Husband, the birds, the dogs.  I see their silly faces, and it literally talks me off the ledge.

I have an adaptive personality, so I have tried my best to just submerse myself into projects and activities vs letting mental or physical afflictions eat me alive.

I remember doing this growing up as well - I just made believe everything around me was a surreal land full of puppies and lollipops.  I also wished someone would "discover" me (while I sat on the T-Bar every weekend at the ski hill) and take me away from it all to a life of glamour and riches.  Hey - it made life easier to deal with.

Husband is truly the only person I totally divulge all my thoughts to - and he doesn't think I'm weird for it. Normally I just get a nice snuggle and feel loved and protected.

I could let it all eat me up and let it consume me.  But what fun is that?  I like the challenge of challenging "the bugs" (as my Doctor calls it).

The bugs make me sleepy



The 9 to 5 shift kills me.  Literally.

I normally work 7:08 to 3:30.  Perfect - I get up with the dogs, take care of the birds, and get lunches ready. I commute in with Husband in no traffic.  We grab coffee on the way.  I get to work, and work until 3:30.

Every day I run out of the office like a school kid at recess time.  It's the greatest feeling!  We drive home in minimal traffic, have a snack, go bicycling, have dinner, walk the dogs, and play board games or just veg out - ok Husband relaxes while I crochet or do some other craft or play iphone games so I don't fall asleep.  Goal each night: stay away to 9pm. Stay awake to 9pm.

9-5 shift - I still wake up at the same time and can't get back to sleep.  I work out before work, and rush to do dishes I didn't get done the previous night (due to fatigue), make the bed, tidy up, take care of the animals, and try to get out of the house by 7:30am so I can start by 8:32.  I have to have time to run through the mall to get my coffee and run back in time.  I don't have my first sip of coffee until almost 9am.

9am!

I am done by 9:30 am...with 8.5 hours to go until I get home, as the drive home is usually 20-30 minutes longer than normal due to leaving 1.5 hours later.

Yesterday, I had issues staying awake within 10 minutes of my drive to work as it was stop-go-stop-go for about 10km. My head drops, my eyes close, and I jolt myself back awake.  It's AWESOME!

Then my vertigo returns as I'm so exhausted, so I walk into things - like the bed frame TWICE this morning causing an open gash on my knee.  Due to pain, I'm hoping I will work out tonight after work.  I'll see how much energy is sucked out of me on the drive home.

My Ear ringing becomes extreme, general dizziness returns, lack of total concentration, and I'm most likely to get a cold or migraines on my 9-5 weeks.

I also become extremely brain foggy and can't remember words for anything.  I was literally trying to Car Sing on the way home last night, and the words that came out of my mouth didn't match the words of the songs - my Car Singing is bad enough - but wrong words?  I couldn't stop them from coming out wrong.  My brain goes all haywire when I'm overexhausted like this.

I need my regular routine and schedule!  I need that extra 2 hours at the end of my night to unwind properly.  I seriously do!

Thank god we normally don't go out weeknights, as that's an exhaustion in itself.  Im generally introverted, so being social is extremely exhausting and I need a few days to recover from it.  Don't get me wrong - I love hanging out with my friends, but it's really draining. I usually go for an hour or two, and then have to leave - not because I'm bored, but because I literally can't hold myself up anymore and will be lucky if I don't feel myself nodding off on the way home.

And no, Friday night of a 9-5 I am NOT going out.  I will be lucky if I have the energy to bike on Friday night after work.

All I wanted to do yesterday afternoon was crawl under my desk and sleep.  I really could of. I have my blanket and a comfy sweater that could also be used as a pillow.  I almost did.  And I HAVE snuck over to the sick room on more than one occasion to sleep for an hour or two, as I literally cannot stay awake in the middle of the day.

So friends, if I ever decline an invite out - it seriously isn't because of you - it really is because of me (or Husband napping on the couch after work - good luck waking him up!).  I really wish I did have the energy to go out - but unless it is active or busy, I really am likely to fall asleep (or fear falling asleep driving myself home). I try to be strong and not give into it, but times like...right now - I could really use a nap right now. Dang.

I literally slept through half my trip to Germany in 2006 - I just couldn't stay awake :(



On another note - if you haven't noticed - I ramble, my thoughts may be everywhere - that's my mind - flipping from one thought to the next, and forgetting thoughts mid way through.  It's the awesomeness of me!  If I blurt things out or interrupt mid sentence (I know I do this, and am trying not to, but sincerely apologize!), it is because I AM going to forget my thought, and therefore not have anything to add to the conversation.  I also really don't remember what I said two minutes ago, nor do I generally remember what I did the previous day (unless I write it down).

Please send your best wishes to me that I will not fall asleep on my way to work today - that the traffic doesn't suck - and that I do not feel the need to fall asleep by 2pm. Or fall down the stairs at work - concrete stairs with high risers...I fear this and being hit by cars crossing to get my coffee every single day.


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