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.

Welcome to My Blog - Part 2 - The Road to Exercise

Although I was unable to exercise daily due to muscle and joint fatigue, I did try. I had gym memberships. I workout out to Jillian Michaels (The Biggest Loser person? I never watched the show, but her 30 minute workouts were recommended to me from people in a forum I was part of) in the living room, and just kind of gave up.

I didn't give up because I didn't want to exercise - heck, I'd been going to the gym since I was 17 - I gave up as I was just too busy. I ran a pretty successful International business making Bird Toys and Beds. I ran it on my own for almost 6 years.

I also had a full time career at my Clark Kent Day Job (with benefits).

I was working 70-80 hours a week - leaving VERY little time for doing anything myself or my family wanted to do. I went from a size 4 to a size 10 over these 6 years. My healthyish eating habits and sometimes exercise routines helped keep my body from exploding further.

I had to give something up during the summer of 2014. I made one of the most painful decisions I've ever had to make. I opted to close down my toy making business. There were tears - from me, my customers, and avian friends. I did this all on my own, and it was very numbing. It was a big part of my life and a way for me to exude my creativity along with having fanfare and cheers from My People. I still get the occasional email from customers looking for toys.

I cut back to just offering parts and wood (cut and dyed by me), and finally January 2015, I closed shop entirely...shutting down my website, Facebook Page, and that chapter of my life. That was another stone on that grave, leading to more tears.

At the end of October 2014, I discovered the Holy Grail of exercise programs - Beachbody Programs.

Yes, you've probably heard of them; no, I'm not a Coach; no, I don't drink Shakeology (I had some samples and they were DELICIOUS...the $130+ pricetag a month wasn't appealing). Despite my gym rat status in my early 20's, and feeble attempts at completing several Jillian Michaels workouts, I have NEVER had these results.

So far, I'm 183 days into my workout lifestyle. It probably REALLY annoys my friends that I'm OCD about it. But you know what? I'm seeing amazing results, I'm pushing play & doing it, I'm also able to do it EVERY SINGLE DAY because my Doctor is awesomesauce and I have the ability to now workout every day. 3 years ago, I wouldn't have been able to say that.

I've completed P90X3 & T25. And you know what? When you complete a workout, log it in, and write a blurb on why the program was great, you get a FREE DRYFIT T-SHIRT. I'm all about free things.

I'll probably do all the BB programs for ALL the free shirts! 

FREE TSHIRT!

And to get fit. And stay fit.

I've lost about 17" so far on my body (waist, thighs, arms, chest, hips & butt), and well..no weight until the last few weeks happened.

Along with my BB tools, I've installed Myfitnesspal on my iphone again. I'm not sure if it now makes me accountable for what I eat, biking 60km a week the last few weeks, or something clicked in my body, but I'm finally losing some pounds. Inches are great, but do I really want to stay at 160lbs at 5'-2"? I have a goal number and goal pants that I'll be happy with.

Not really - I have newish pants that are just waiting for me to climb into. I have dresses and skirts that I can start squeezing back into. I have more positive energy than I've had in years.

My life was being suffocated by things I felt I had no control over, so I'm just taking control in a different way. And I'm LOVING it. It's fun, I can shop my own closet again, and I'm feeling good about life again.

So I'll be posting about epic bike rides - especially since we're a 4-bike family now - we each have a mountain bike & road bike for whatever biking mood we're into that night after work/weekend. I've just started Insanity Max 30. And this is the beginning of the rest of our lives. I might post about regression with my CFS (or progress!). One day I will feel totally alive, and I don't know how I will handle it!

I'm baddass while working out

 

The Ability to Shop My Closet (and Insanity Max: Cardio Challenge)

A year ago I REFUSED to buy more work pants.  The last Rickis pants I bought (the only ones that seem to fit ladies with Big bums, hips, and thighs) were NOT cheap at $50-$70 a pop.

I have a closet full of pants that I know I can wear again - ones that weren't even worn for very long and look new.   They're folded up on a shelf just screaming to be worn again. By Me.

We ALL have these clothes in our closets.  The ones we KNOW we will wear once again. 

I also have a selection of dresses and some shirts that just were no longer flattering, my thighs, stomach, and hips jutting out to make an unattractive bulge.

I didn't buy any more work pants, and just suffered through with being able to barely breathe, and eventually just wearing A line dresses that allowed me to sort of Breathe at work, and Yoga pants at home.

This morning I tried on another random piece of clothing.  A dress I hadn't been able to fit into since 2013.  It was too tight in the middle, and not a forgiving cut at all.

It fits. And there's actually room to breathe.  And there's actually room at the back - my caboose shrunk!

SCORE!

I'm loving the ability to Shop My Own Closet! 

We're on a stict budget currently and have to ask - do we need it? How will it benefit us? Do I already have this item?

I have already taken out what I know I won't wear again (style, age, etc.).  And I don't need any more regular or work clothes, tshirts, or jeans.  I need more active wear (as hey, now I'm active every day), so I just stalk the We Made Too Much section on Lululemons website every Thursday when it's updated with "new" items.  I refuse to buy them full price, but the quality and fit - even Husband agrees - is stupendous.  I can't go back to frumpy stinky workout clothes again. If I can get a tank top that will last me 3-4 years for $30 on sale, why not?  It's better than 3 tank tops that for $20 each that will stink after one use. I like durability and wicking material.

Take this morning.  I did my Insanity Max 30: Cardio Challenge.

I wore Roots Yoga pants and my Lulu funky shirt (it's flowy and turquoise). I seriously sweat during this workout - my top was dry, my bottom...not so much.  I forgot why I wear my Lulu pants or shorts for every workout - anything else, my body seriously doesn't agree with.  Might be snotty, but I like what I like (and at a great price in the clearance section!).

The workout - this is my second time doing this one. My comments throughout:
- OMG, he ACTUALLY gave us a 30 second break!
- Made it to 17:57 before I maxed out!
- I hate Suicide Burpees

I don't think I even made it past 10 minutes last time, so this is an improvement!

Just remember - every day you can do a little bit more.  You may not be perfect, quick, or keep going the whole time; but you stepped up and did it.  That's a huge accomplishment in itself! 

Insanity Max30 - Rest Day?

What is a rest day?

It used to be the day Husband and I would go to the pub for Wings & Beer...but about 3 weeks ago, enough was enough, and we've ixnayed beer (thus wings - because one cannot enjoy wings without beer) from our diet.

Beer doesn't really help me, as per my doctor, I really shouldn't have yeast or sugar in my diet. What is beer made of? These things :(.

Now we're not really going out to eat, as I'm a superb chef - ok - I prepare things ahead of time, once a week stick them in the freezer, and take them out the morning of said meal so we have no excuses not to eat delicious, yet healthy, meals. That's a whole post on its own.

Back to topic - What the heck is Insanity Max 30? It's this: 

It's crazy.

It's intense.

It's Shaun T. Who refers to himself in the third person ALL the time.

Systic would like to refer to herself in third person as well, but I don't have the pizzazz for it today. That's all I got.

As mentioned previously, I'm a normal (okay, really weird, but not crazy) person. I'm 36 years old. I started workout out almost daily since October 24, 2014.

P90X3 was difficult

Focus T25 was even more difficult. 

I tried to find Brazil Butt Lift (Beachbody as well), but couldn't "find" a "copy" - I really wanted to do a workout named "Bum Bum" - really, what could be wrong about that? Plus that program would result me in an awesome behind and Booty shorts! I don't really have shorts, so free shorts seemed like a good idea.

So, I already had a copy of Max30, and started it last week.

OMG. This really IS Insane. I feel like I'm going to do modified moves forever. But I'm pressing Play. And I'm going to get the Free T-Shirt as my reward. I'm like Pavlov's dog here.

Shaun stares at the camera, takes off his shirt so he can "breath" (he just wants to show us his 6-pack), people fake out in their Max Outs, Water sweat drips off the men. It's awesome.

I have sworn at him all week long. But I did it. I made it to the first of 2 rest days.

This "rest" day, I opted for the Pulse workout - kind of a neat stretching 20 minute workout - which I STILL sweat through - before heating out to Clark Kent Day job on my exhausting 9-5 shift week.

I'm guessing I burned about 192 calories based on the (can't think of the proper word - what's that word where...oh yeah) CONSENSUS provided me with the average calories burned for my weight/height.

...Above sentence - welcome to my regular brain fog! It's awesomesauce.

I'm just going to plow through, and leave "rest days" to start Shaun T's Hip Hop Abs...or something to get rid of that unhappy blubby area that is causing me to not fit into my old/new work pants. It's the plateau I have to plow through.

Gideon and Me!

Hopefully Husband will wait for biking tonight, as today's mega eating plan consists of:

- Breakfast: Peanut Butter Toast & Milk

- Snacks (I eat all day long) - Grapes, Strawberries, Banana, Pretzel Sticks, Carrot Sticks, Cucumber, Almond/Peanut/Sesame Seed/Pumpkin Seed mix

- Lunch: Mixed green salad with chicken breast, cucumber, mushrooms, celery, and some sort of fat free Kraft dressing.

- Dinner - no idea - possibly homemade burgers with salad, or possibly Butter Chicken with 1/2 cup of rice & mushrooms

Dinner's a crap shoot this week as Husband is supposed to be in charge - so it really could be Hot Dogs, as we have partial leftovers in the fridge to still eat.

Biking would burn anywhere from 500-1000 calories. This biking thing has caused me to lose about 2lbs a week for the last 2 weeks despite eating more than I noted above every day. I can't eat enough calories most days. i do try!

I feel I enjoy the challenge of a healthy lifestyle, as it really can be difficult at times to not get bored with it.

Shaun T is highly motivating to help keep me interested in a workout program. 184 days in? And I'm excited for the next program, and the next, and next. The possibilities are endless (and attention grabbing).

And I want that damn free T-Shirt.

And a poutine.

Welcome to My Blog - Part 1 - The Chronic Fatigue Syndrome

I'm new to this whole blogging thing - people tend to have handles (aka code names) for themselves in blogs - so I'll be my 16 year old self - Systic.

Who knew 20 years ago I'd be rebooting myself to a better me? Who knew that life would constantly evolve and shift like a rollercoaster? Who knew being an adult was like this?

Me at 24

Almost 12 years ago I lived in an apartment off Lake Ontario in Port Credit, Mississauga, Ontario. This is where I began my journey into CFS - known as Chronic Fatigue Syndrome, with a touch of Fibromyalgia. It wasn't a bad building, the superintendents just did half assed repairs and maintenance.

Covering up issues (aka treating the symptoms) vs fixing the actual underlying cause.

I was healthy, and then I got a cold that wouldn't go away - the details of the symptoms are rather gross, and Merlin (my African Grey) still makes my gross sick sounds once in awhile as a reminder. Jerk.

Respiratory issues just wouldn't go away. I saw three doctors in 3 months. I was put on inhalers. I was sent to the Sleep Clinic. I was desperate and falling into the abyss of the unknown.

I went from active and healthy to a lethargy, body, and mind that squashed the person I was.I was 24 years old. I felt like I was 65 years old. My once quick brain was mush, my body which was active and full of life was intensely sore and fatigued. It literally happened overnight.

This is how I felt most days - this picture actually makes me jealous that I'm sleeping then - I need a nap!

From my research, the cause of the onset of symptoms, and doctors analysis, it was determined to be Chronic Fatigue Syndrome.

What is that (I asked)? Hell (answered my body and mind).

The main symptoms are: Fatigue lasting over 6 months, Loss of memory, sore throat, enlarged lymph nodes, unexplained muscle pain, headaches, unrefreshing sleep, extreme exhaustion that lasts more than 24 hours after physical or mental exercise, brain fog, dizziness, visual disturbances, more depression than normal, mood swings, anciety, major sleep issues. I could go on - but I can't remember my symptoms half the time.

I honestly don't like complaining about it. I just deal with it. I keep super busy, or I fall asleep. Our friends used to know me for just crawling in a corner and falling asleep. I barely made it through the opening credits of movies.

When I stop, I drop.

I went from a 3.9 GPA in college with an active lifestyle size 2 body to not being able to remember my friends or familys names, remembering names of common objects, forgetting my thoughts mid sentence, napping wherever I could, literally catching 30 second naps at red lights while driving, feeling so much pain after a workout that I had to wait 2-3 days before I could work out (to feel the pain all over again), literally falling because I was so dizzy, I would wak up at the Witching hour every night (3am), to the size 10 body I ended up with in October 2014. And as you can tell, my thoughts are everywhere as my mind is constantly racing.

The mainstream doctors couldn't help me. Sleeping pills woke me up, the wake up pills they prescribed me made me sleep by noon; and drinking hot milk and reading a boring book was the final advice given by my lady doctor (who I just use for birth control pills now - may as well use some of those health tax dollars we pay every 2 weeks).

I was desperate after 10 years...so desperate. We even considered paying $6,000 for a sleep trial...but what if it was a scam?

So I started seeing a Chirpractor again for my pain. In his clinic, there was a Naturopathic Doctor (MD). I asked Husband what he thought about it - we agreed, I couldn't really do much worse. I was so done.

I started seeing her, and she just looked at me without me saying a word, and said she could help me. My lymph nodes were all inflamed, by endocrine system was so clogged with what she calls "bugs" - the mould spores. It started with probiotics and other vitamins/remedies; cutting out Gluten, Sugar, and Yeast; and monthly visits for the first 3 months. She said it would likely take 2-3 years to get rid of the crappy mould that was in my body (see above - apartment I moved out of had mould in it that I found when I moved out - it had been there probably a good 6 months - makes sense to me why I never recovered - it was in my lungs and body). She had successfully treated many mould cases when she lived in Vancouver (aka lots of rain = lots of buildings with mould).

Just over 2 years later, I am still recovering, but with many of my symptoms gone or 50% better. I tried to go cold turkey without my remedies and probiotics summer of 2014 - Husband told me to go back to my Whoodoo Voodoo Doctor, as whatever she was doing was helping me. I don't really know what she does. Whatever she does, It really does work. As per above, I tried to stop her treatments, and I went rather downhill over those months. I did NOT want to go back to that prison of floating over my life.

She's the only person who has listened to me. The only doctor who has helped me. I wouldn't wish this feeling of CFS (Chronic Fatigue Syndrome) on anyone. How I would describe it is: think of your worst sleep ever - you know, that day where 10 coffees don't help. Think of this day every day. For 12 years. Never feeling refreshed. Ever. It's not a normal unrefresh, but something I just can't describe to its full extent.

I think my only saving grace is that I've generally eaten relatively healthy and tried to exercise when I was able to.

So I'm finally on the road to recovery with my CFS.

That's part 1. Part 2 is my lack of exercise and how I started back up.

I'm a little bit Crazy!