Saturday, June 21, 2014

How do I manage physically?

 CROUCHING: I crouch down whenever I am too weak to stand.  I can't stand for more than a couple of minutes at a time before I start wobbling at the hips and knees and have to hunker down.  I did a lot in my home at floor level, including crawling up the stairs or around the upstairs to get from room to room.  I would also sit on my walker and push it with my feet when I was too weak to walk.

Playing Totem Tennis with my niece 
 I would have to crouch in the grocery store or retail store if I was sorting out what to buy, checking ingredients or deciding on clothing purchases.  I would also hunker down if I had to wait in line for more than a couple of seconds.  I realize I must have looked a little odd but I had no choice - I had limited energy and strength and could not afford to waste any second of my precious standing time!
....Giving a little demo to my family in AUS on how to make s'mores.  Mmmmm....

 SITTING: On a cushion - I can't sit on anything hard or slippery as I do not have the strength to hold my body in the seat.  It is also painful on my hip bones - I feel like they are protruding when I sit down.
 The best chairs had wheels on them, that way I had a measure of independence without using a cumbersome wheelchair!
I wanted so badly to still be an involved mum to my kids.  I would try to find ways to improvise with my disability so that we could still enjoy some of the things that I used to do with them.
I wasn't able to carry Tyson but there were still plenty of opportunities for snuggles with my kids!
My legs are always crossed in some way when I sit or lay down.  Not sure why that is....
 LOUNGING: Unable to sit for very long because of fatigue and joint/muscle pain, I found the zero gravity chairs to be a must have when out and about.

 LYING DOWN: My favourite! Lying down was the most comfortable position for me - I would crash on the floor when fatigue came on suddenly.

The couch has been well-worn during these past few years.....
 My mum and my sister made a prayer quilt for me to let me know that they were thinking and praying for us often... xox
 The kids would try to make me feel 'all better' by making me look absolutely stunning with all of the 'pretties' that they could find in the house!  How many mums have time for this?

 My legs always had to be up and/or tucked under me.  The doctor now told me this is a sign of adrenal malfunction....I could not balance on a chair without drawing my legs up.  Because of my constant low blood pressure she said it was my body's natural protection mechanism to keep me from fainting.
 Eric did a very good job of breaking his leg and required surgery.  Now there were two of us lounging on the couch! What a disaster....

WHEELCHAIR: Only when I absolutely had no other way of getting around.  That cursed pride I continued to hang onto..... It was worth succumbing to a wheelchair when there was no other way to go out with friends!
A pelvic brace, knee braces and a cane gave me a little extra stability - extending my period of standing time and allowing me to push my body a little further.  My knees were often swollen behind the joint as a result of laxity overuse and hyper-extension to compensate for the lack of pelvic stability.
WALKING: This was a familiar scene when I attempted to go for a walk.  About 100 meters away from our home I would have to give up and turn around and go home before I crashed and became unable to walk any further.  If I was walking with others I would wait beside the footpath so that I could return with them on the way back....Obviously this was frustrating for me - I used to walk through town with the children every day, puttering to the library, the grocery store, the park and Tim Hortons.
STANDING: I could stand but it had to be in short bursts and with legs apart for added stability - like a tripod without the tri... I found I could last a little longer if I rocked from one leg to the other, engaging certain muscles that were willing and able to work to compensate for the lack of stability in my core and hips.
Hanging onto things or leaning was another way to prolong my standing time.
EFFICIENCY:  I learned to become super efficient with my time.  I allowed the children to help out whenever they had the urge - anything that got cleaned was better than nothing!  I only had a limited amount of energy so I tried to do things as quickly as possible before I crashed.  Apparently that is not the best way to recover, but resting didn't seem to help either.  It was all a game of guessing really..... If I knew what I had to do to recover I would have done it.  We were all wandering in the dark.....
I did as many things as possible at floor level. (maybe not the most hygienic but still just as much fun...).  I even have a tabletop ironing board that can be used on the floor!
In the last year before diagnosis I developed severe weakness and pain in my MCP (thumb) joints.  I wore braces to give me functional stability but was unable to play my guitar anymore.  It was too difficult and painful to push down on the neck of the guitar - my thumb collapsed around it and I didn't have strength to hold down the strings.  That was devastating for me.  It felt like God was taking away one last pleasure that I still enjoyed.... This too was His will, so I put away my guitar and tried to enjoyed music in other ways. 

I wrestled with what God was doing in my life.  I could relate to Job and how he felt during his sufferings.  I had so many questions that didn't seem to have answers.  The book of Job was so helpful in putting it all into eternal perspective.  How could I demand answers of a sovereign, all knowing, all caring, powerful Creator God? 
 "Oh, the depths of the riches of the wisdom and knowledge of God! How unsearchable His judgements and His paths beyond tracing out!" Rom 11:33  
I had many unanswered questions, fears and stresses but determined to rest in His providential and Fatherly guidance.

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