About Me

A hilarious view of life with multiple autoimmune disease and chronic illness. Lupus, Dermatomyositis, Myositis, Alopecia, Raynaud's Syndrome, Sjogren's Disease, Depression & Anxiety. I have it all and have learned to not only accept what come my way but to see the humour in all that life has to offer. If you know someone struggling with chronic illness please refer them to this blog. My hope is to brighten the days of those who need it the most and give hope that there is still a beautiful life to live even if it may be a little bit broken!

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Adapting To Life With Muscle Weakness.  Wonder Woman!

Adapting To Life With Muscle Weakness. Wonder Woman!

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Leading up to my diagnosis of Dermatomyositis I dealt with three months of rapid muscle deterioration which took me from being able to do at least 100 squats in my body pump class to not being able to get myself out of the bath tub or sit up on my own without propping my torso up with pillows.  Scary?  I can’t even begin to describe the fear that took over most of my daily thoughts.  What if they doctors couldn’t stop the progress?  Would my children watch me wither and die?  Would my husband and family be burdened with my care? I was so afraid of what this would do to my family and children.  A couple of months into my decline I was at a restaurant with my daughter’s soccer team and I had to sit down with my drink because my arm was no longer strong enough to hold up the glass that I was holding.  My arms became almost completely useless and it felt like heavy weights were attached to my wrists at all times.  One day, when I took my daughter through the drive through at McDonalds for a Happy Meal I realized, a little too late, that my arms no longer reached up high enough to pass the waiting cashier my money.  I’ll admit it; in my frustration I panicked so I just balled my money up and threw it at her with a huge grin on my face.  I quickly explained that my arm was hurt when she looked at me like I was completely insane but I’ll give it to that teenager working the window as she caught my money and it wasn’t even a good throw.  Way to go McDonalds worker, way to go! This also caused a ton of problems in how I functioned in daily life, as you can imagine.  An infestation of fruit flies in my kitchen, following my son leaving out a half-eaten container of applesauce became an insurmountable challenge and I found myself batting at them with my weakened arms that I could not raise above my shoulders like I was a T-Rex with teen tiny limbs  The frustration at that moment was overwhelming and those poor fruit flies took the brunt of my anger as I flailed at them for an hour straight until I squashed every single one of them and my tears soon turned to laughter as I could only imagine what I looked like flapping my crazy arms and hunting down every single one of those horrid little creatures.  It was during this temper tantrum, as in all honesty that is what it was, that I discovered that if I used the momentum of my swinging my arms that I could get a lot more strength and movement out of my limbs.

And so began my experiment in using momentum and speed to overcome my muscle loss.  I was tired of moving slowly and painfully through life and was hoping that there would be a better way to try and get things done so why not try the opposite and move really fast?  The result was my moving through life at an uncontrolled, spastic, slightly dangerous and hilarious pace but darn if it didn’t work.  For example, I was unable to get up out of chairs by myself.  There was an unfortunate incident at a wedding I attended this summer where I rushed into the private bathroom with my daughter, because I had to pee so badly that I was going to burst, and in my rush I failed to notice that the toilet was centered in the middle of the suite with no hand holds or structures anywhere near that I could push off of to get back up when I was done.  I was just not used to thinking about these things as only weeks before I had normal muscle strength.  This left me trapped on the toilet while I flailed about and turned myself around and around trying to figure out if I could push off of the bowl, grab a towel to haul myself up, anything???  Luckily my daughter was with me hysterically giggling at my attempts which kept me laughing as well and calmed the rising panic as I pictured possibly having to send her for help, leaving me in an open washroom perched helplessly on the toilet.  So I grabbed the little giggler and made her bend down in front of me so I could bear hug her and use her body to hoist myself up.  Child abuse, possibly, but remember she was laughing at my predicament and she thought my using her to haul myself up was pretty hilarious too.  Once I was all straightened up and we were finally heading out of the washroom she announced “well that was embarrassing, and mama if you tell anyone that I had to go number two I am soooo telling them that you got stuck on the toilet!”  A blackmail master at less than 10 years of age!  I raised her right.  The point is I couldn’t get up without great difficulty so I decided to try momentum.  After killing all of the fruit flies I sat down in a chair and I tried ducking my head down quickly,  throwing my body forward luck a duck diving underwater to shoot my body up as fast as I could.  I soon learned that if I did it really fast, using my limited energy in one short burst I could get myself out of my seat.  Success!  As you can imagine though, and much to the horror of my family, this looks pretty hysterical.  One minute I will be sitting and then all of a sudden you will see me dive forward and shoot up into the air in my own personal swan dive.  I didn’t care who thought it looked weird; I could get up on my own!  An additional perk to having achieved this skill was suddenly everyone around me started offering to get me things so they didn’t have to witness my graceful maneuver and I could pretty much ask for whatever I wanted and my family would run to get it as soon as I said “well just let me get up and get…”  Awesomeness all around I tell ya!

I may not be Wonder Woman. But I do things that make you wonder.

I then began using momentum in a ton of other everyday tasks.  Getting into the car was particularly difficult.  I had already mastered the ducky swan dive to get back out again but lifting my legs into the car was impossible and I would have to use my arms to lift one leg, leaving me precariously balancing on one shaky leg causing me to literally fall into the car where I would then grab the steering wheel or the poor unsuspecting driver and drag the rest of my body into the car.  It reminded me of my University days and a few really late nights of excessive drinking.  Come to think of it, being stumbling drunk is quite a bit like experiencing the muscle weakness that accompanies myositis so many of you may have a great understanding of what this actually does feel like.  Using momentum to get into the car was relatively easy if not slightly dangerous and I nailed it on my first try.  Going out to the car I made sure to open the door as wide as I could get it and then I bent my knees, throwing my arms back in a skiing motion and launching my body, sideways, into the car.  I say this like I did it gracefully but it really was just me suddenly flying spastically through the air into the car.  Now I could only get enough momentum up to get one leg and my but into the car seat but if I moved fast enough I could grab my remaining pant leg and haul it into the car too in a fairly fluid motion.  The first time I tried it I surprised the hell out of my husband who was getting used to having to wait for me to drag myself groaning and panting into the car as he suddenly saw me fly into the car with my arms flailing, landing with a huge “Whahoo!!!”  “He was like “what the hell was that?” and I calmly explained that that was how I was getting in the car now.  He didn’t comment further and just shook his head and smiled as I am sure he was just happy that I figured out how to get in without making him wait or using his arm as my own personal handle.  The unfortunate part is that I must now park farther away in the parking lot to make sure that I have room to open the car door far enough so that I can fling myself through the opening.  The fortunate part is that leaping into my little convertible bug actually looks pretty cool; well in my mind anyway and that’s all that really counts.

Now my experimenting has had many successes but all success stories are often accompanied by failed attempts.  For example; using the ducky swan dive to get out of the bathtub does not work.  The tub is too low to push off of and the result is your rear end creating a giant title wave that will splash over the edge of your tub and onto the floor leaving you still sitting red faced in the tub while the floor is soaking wet.  I have also experienced quite a few misses with the jumping and launching to get into bed, landing in a giant heap on the floor.  The first time I tried the jump and launch to get onto the doctor’s table at the hospital I almost missed the table but saved it at the last second.  My doctor looked at me in amazement as I am sure she was expecting to watch me drag myself up onto the table like I was used to doing every week but I launched myself right on up there much to her shock.  She even laughed and said “well that is the first time I have ever seen that before, are you feeling better?”  I explained that I was actually feeling weaker but then told her about how I was adapting to having weak muscles.  She even laughed a little which this particular doctor does not do a lot of and then mumbled “well that explains what I saw when I watched you get up out of the chair in the waiting room.”  Part of my doctor’s weekly inspection includes her watching me closely as I attempt to maneuver myself from the waiting room, into the examining room, into a hospital gown and up onto the table.  She tries to act like she is not observing me but I can see her peeking and she was literally staring at me while she watched me ducky swan dive out of my chair, robo walk down the hallway, wonder woman spin myself into my hospital gown and then jump and launch myself spastically onto the table.  I had her full attention that day.

My story about my amazing maneuverers would not be complete without an explanation of my amazing wonder woman spin move.  I use it to put on my tops and to swing items up on counters and into the car.  While my muscles had weakened in my arms to the point that I could no longer lift items that were heavier than a drinking glass my hands were still fairly strong so I could grip and carry my own bags.  When I went to the grocery store I could reach over, grab the bags of groceries and pull them off of the counter and then carry them out to the car with my arms hanging low like a gorilla but then I couldn’t get them into the car on my own even if I did it one at a time.  One day I ended up placing the bags on the ground by the car and then reaching into the bags and pulling out each individual item, tossing them in the back seat of the car one at a time.  I then drove home and asked my unsuspecting children to please bring in the groceries from the back of the car for me.  LOL  This was ridiculous though and I knew there was a better way so I learned that if I spun myself like wonder woman I could build up enough speed to swing the bags, releasing them from my hands at the right moment so that they landed in the car or on a counter etc…  This resulted in quite a few hit and misses as you have to make sure you release the bags at the right time or they will fly into the side of the car or slide across the kitchen island right onto the floor on the other side.  There was also a little incident after I went grocery shopping where I spun so hard that my bag of cookies shot right out of my grocery bag and flew over to the lady getting in her car near me hitting her in the leg.  I don’t think she witnessed my wonder woman spin as I am careful to wait until no one is looking but she was left wondering why I would throw my cookies at her.  I just retrieved the cookies with a “whoops, sorry,” and went on my way.  I even treated myself to a cookie on the way home as a reward for my achievements.

The point of this blog may have been lost in all of my ramblings but what I was trying to get at is that when life gives you challenges that you are afraid to face and that seem just so insurmountable that you are completely overwhelmed just take a minute to sit down and think up a plan.  If you use your head and not your heart and emotions then you can often find an interesting solution to every problem that comes your way.  When we are not caught up in the emotions and heartbreak of this broken life then we can better enjoy the beautiful that comes right along with it.

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About Me

A hilarious view of life with multiple autoimmune disease and chronic illness. Lupus, Dermatomyositis, Myositis, Alopecia, Raynaud's Syndrome, Sjogren's Disease, Depression & Anxiety. I have it all and have learned to not only accept what come my way but to see the humour in all that life has to offer. If you know someone struggling with chronic illness please refer them to this blog. My hope is to brighten the days of those who need it the most and give hope that there is still a beautiful life to live even if it may be a little bit broken!

Stay Connected

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