A Morning Heart

I love morning time.

I love the early hours when the sun is just beginning to light the day and before all the neighbourhood noises start. I live in a semi-rural neighbourhood so it's always much quieter than directly in town but there is still that early morning silence that I thrive in. And it's the only time I ever feel like I'm home.

For too many years now, I haven't felt like I actually have a real home anymore. The year after I made the mistake of getting married, my mom moved from the house I most loved growing up in to a smaller house in town. My moms move was totally understandable since the house felt too big for just her and my sister. My dad had died only about two years before and my brother had moved out west so I completely get why my mom wanted a smaller home and a smaller yard to deal with; still, when she and my sister moved into their new home (just big enough for two) and I realized I would never have a home to return to if need be... it stung and it still does. I know it sounds ridiculous but I miss getting to 'go home' for visits and I really don't like feeling like a guest visiting my moms house but because it was never my house too, it will always be just that..... my moms house.

At twenty-one I got married and moved into a country house we built ourselves. Enz is an architect/builder who works professionally in structural design and was designer/contractor for each of our house builds and now also for our on-going cabin build. Enz, his dad and I did all of the work on our first and second houses and even though I helped and was involved with every aspect of the actual building process, I still never felt like I could ever be truly at home in them. Enz likes and expects perfection. The house was meant to stay brand new and pristine which meant that living was difficult... no touching the walls, no accidentally bumping into the walls with anything that could mark or ding them, no dropping things because the tiles might suffer a scratch, no accidentally closing doors too hard, no opening doors too wide, no fingerprints on light switches, no dragging chairs (lift and place), no touching the television/stereo remotes without them being covered in plastic to avoid dirtying them..... and the list went on and on and on. Kind of hard to feel like it's okay to live in a space where mishaps of living are just not allowed or forgiven and completely opposite of the real home in which I grew up. The rules have softened for our boys (Greyhounds Play and Day) which I am grateful for. The boys are allowed to play wildly, flinging toys around which sometimes breaks decorational pieces and they are allowed to run and jump all over the leather furniture even if they leave scratches because he wants for them both to be happy, have fun and know they are loved. How thankful I am that the boys are allowed to fully live and thrive in their home because nothing lifts my heart like watching them enjoy being alive and adored!

Living with the uptight stipulations over the past almost twenty-two years has changed me, and not for the better. I forget what it means to feel like it's okay for me to try and fail at something or that it's okay to make a mistake or that it's okay to accidentally drop something and not have to worry that a noticeable mark might be left behind. I don't know that I could ever feel at ease and just say 'oh well' even if I do find myself in a worry-free-allowed-to-live space of my own someday.

But this is when I do feel at home. In the early morning hours. Enz leaves for work at six-thirty every morning so I am usually here, set up in my morning spot, by quarter-to-seven. I'm technically not allowed to have anything set atop the table quilt and am supposed to either fold it back or place a protective cover between but in the mornings I go rogue..... I figure since I made the table quilt and I know it's washable, I can enjoy it and touch it without too much fear of being found out. I make my morning cup of coffee and carefully carry it over to the dining table then just sit quietly with a crossword puzzle to help give my mind a jump-start with words for the day. Once I finish my coffee, I switch from crossword to notebook and try to make sense of what I feel I need to get down on paper. I love writing and for some reason always have this sort of movie screen running through my mind that I simply need to document, even if it's only in point form because I just can't keep up with it all. I feel better about everything once I've let myself do a little writing but we'll keep that just between us, too... just like my using the table quilt without a 'buffer zone'. Reading and writing is not something that's tolerated as more than a complete waste of time in this house; if it doesn't create a tangible, useful product that makes lots of money, it is considered useless here. So I write and then I shred. That way I get to do what I need without it being known that I wasted any time doing the only thing I really love to do, well next to sports which is still just unfortunately out of the question for me right now.


Heavenly Mornings.....

























Later on, I move into the kitchen to have my actual breakfast, usually a piece of fruit but sometimes my favourite treat of steel-cut oatmeal instead.

NO PLACEMAT... I wasn't kidding when I said I go rogue!

Morning time just seems to know how to make everything feel better and more secure for me and they are the hours that I cherish. The only thing that could make my mornings better is if my boys would get out of bed and share them with me but they much prefer to spend their mornings in Dreamland... and whatever makes them happy, also makes me happy!

Day in Dreamland

Play in Dreamland

Neuropathy Showdown - Week 9

Aquatic Therapy - Appointment 16: (July 27, 2016.)

Today was a really great day at my therapy session... not such a great day during travel-time to and from. I suppose the great cancelled out the not-so-great to make it an okay day overall. Enz is getting really frustrated and angry with me for needing rides to my appointments and I have a really hard time asking anybody else for help. My aunt has driven me a few times and I know she is happy to help me but it isn't easy for her to get around lately either since she is waiting on knee surgery so I don't want to ask unless it's unavoidable. My mom, try as she might, just doesn't care about being on-time for anything and I refuse to be late and miss even a second of my scheduled therapy so I just can't trust her to get me there when I need to be. And my sister is so busy with her wonky work schedule that even if she is off, I don't like to ask when I know she always has so much running around to do in the few free hours she has... I have had to ask my sister to pup-sit my boys while I was at therapy a couple of times and I know she is also more than happy to help whenever and however she can but it mostly all just boils down to my upset of this new reality where I am a burden; a fact that sucks all on its own and Enz being pushy and mean in his own upset-with-me today didn't help, at all.

I tried to just ignore the anger during the half-hour drive to therapy because I knew that it was going to be a tough day in the pool and I needed a positive mindset to get me through but once I'd been almost defeated by the water I had no strength left to get me through the snarky ride back home. Today may not have been quite so bad if Enz's dad hadn't also had his own doctor appointment following my appointment that he needed to be taken to and helped through after his recent stroke. I apologized for needing rides but I know apologizing doesn't help once the damage of annoyance has fully taken its toll. The ride home felt pretty honestly like it was taking FORever and not just because of the construction work slowdown... the fury was piercing even in silence. Once we arrived back at the house things just got worse. I wasn't getting through the garage quickly enough because there was a sixteen-foot long roll of landscape paper and some bags of stuff for the camp blocking me from getting my walker through the usual pathway. I finally gave up, pulled the walker up to folded position and worked my way over the mess holding tight to one of the vehicles parked inside. Once I got to the door and was taking the collars and leashes off my two waiting Greyhounds, Enz roughly pushed past us to get inside and retrieve his forgotten set of keys before pushing past angrily again on the way back out... I was lucky to be right beside the washing machine to catch myself on or I would have fallen in my stumbling. I finally had had enough and said, "Stop being MEEAAAN!!!" He didn't stop but just yelled back, "I'm not being MEAN! I'm BUSY! I have things TO DO!!" Then the garage door closed and the boys and I were thankfully alone.

Needless to say, it's been a Keith Whitley healing kind of afternoon.....

I am grateful to have three HIGHpoints for today, though... my two sweet boys and my fantastical therapy session! I was much more at ease with getting into the water this week and since I hadn't used up so much energy in my stress and fear of starting water exercises, as I had last week, it was a much better outcome. The water still feels just so weird. I had been in our hot tub a couple of times over the the winter but still had no feeling in my legs which was kind of odd to get used to since it wasn't until I was in up to upper-thigh depth before I could feel that I was in water and that the water was hot; it actually kind of scared me a little to know that I could quite honestly have stepped into scalding water and not known until my legs would have shown the visible signs of damage. I actually did burn my arm once, almost a year ago when my arms were still also without feeling. When this whole thing first started my arms and torso were also affected but I regained all my arm strength within days... sensation took about a year. Anyhow, before sensation in my arms/hands came back, I had stirred a cooking sauce that boiled up and splattered my arm. I remember seeing it and thinking 'oh, better turn that down a little' then just casually wiping away the splatter I saw on my arm before pulling my sleeves back down. My normal reaction from a boil-splatter would have been to pull my arm back at lightning speed while shouting "OWWW... FUCK that huuuuuurts!!!" while rushing for the sink to run cold water over it but, my reaction to this one was to simply wipe away what I saw. It wasn't until later on when I was changing for bed and pulled off my top when I saw the open-oozing blistery burn on my arm. I had no idea that I had hurt myself until I saw it. It was scary to know that I could hurt myself and not know it... and that fear comes back to me every time I have to step into the hot therapy pool now. It's better now though, because I actually can feel that the water is hot, I just can't feel that its water until I am in to about hip-level. It's really the strangest feeling to feel as though I am half standing in dry campfire heat flares and half standing in hot water once I am in chest-deep. it takes getting used to and I have to take the first few minutes each time to work it all out in my mind and trust that my body can get through what it needs to while in the water.

Anyhow, once I was in, settled and ready to work in the water... everything went well. The work was hard, lifting and controlling my legs with the water-resistance is truly a brutal feat of effort, both physical and mental! We started with a review of last weeks exercises of heel lifts, toe lifts, crossover touches and we added in hip-abductor lifts which were brutal and already have my muscles sore in regret but also in thankfulness because I can FEEL the soreness of hard-worked muscles... a true gift just on its own. The last task I conquered was to let go of the side of the pool and sidestep my way across the middle of the pool and back again while holding to a metal pole my aquatic therapist, Dave, had placed across from one side to the other to help me balance as I moved. I was nervous but made it all the way across before needing a rest before heading back across. Proud as punch, I was, to have attempted and succeeded at another water session. But I was beyond exhausted and getting changed was more than a chore; luckily I had brought a little sundress and a plaid to just throw on afterward. I was extremely wobbly in adjusting back to my 'land-legs' again this week but Dave says it might get easier as my legs work to grow stronger in the water... I sure hope he's right! Actually, I believe he's right!! being in the water today was as tough as it was beautiful and I feel incredible with the strides I made in both getting over my fears and getting through my newest challenges.

Dave talked to me throughout our session about setting smaller goals on my way to ultimately achieving my full goals like walking all on my own again with BOTH of my boys (all by ourselves) and skating again. What he said makes sense so I am going to sit down and make myself a list of mid-therapy attainable goals to help me through and keep feeling accomplished. He gave me examples of goals that I could already check off in todays appointment that I hadn't even realized, things like... Was more relaxed while on the stairs into the pool - check! Was smiling as working my way deeper into the pool rather than stressing with worry - check! Not holding to the pool edge in a white-knuckle-death-grip - check! ...All things so tiny but meaning so much and I hadn't even realized them until he brought each one to my attention. Smaller goals along my healing journey; perhaps just as important as my utimate goals for healing. Just one more BIG something new I opened up to today.

There was one more beautiful happening when I first arrived and was making my way inside the hospital... I ran into one of the Maintenance Men (who are ALL so friendly, even when I'm slow-moving and sometimes in their way when we are doing stair-work) and after saying a cheerful hello he said to me, "Wow... your walking's getting better, huh!?" I felt myself beaming that it was noticeable and I wasn't just convincing myself I was slowly improving, "Thank you!! It's slow but it's coming back!" I said, so grateful to him. He smiled, "You're doing really well!" Whether he knew I was coming in from beneath an angry cloud and in need of a kind word or he really meant it, I may never know. But I do know he made my day brighter and he helped me get into the strong and uplifted attitude I needed to get through my therapy.

Kindness is everywhere, even in darkness... we just need to be open to accepting it into our wide open hearts when it shows up. I know everyone has frustrations to release but when someone else's anger makes someone else want to quit the one thing that is finally helping... well, healthy kind of has to find a way to win.

Neuropathy Showdown - Week 8

Boy have I been dreading today! I knew, from my first day in the Neuro Day Program, that I would eventually be starting with water therapy but I've been terrified at even just knowing it was on the horizon. My terror is not just in having to be seen in a bathing suit after gaining weight through not being able to exercise as I did before the neuropathy, it's not even about my worries at faltering with getting into the pool; my terror, I have recently realized, is actually about the water itself and how my body will react to being in it. This realization hurts my heart, more than I might ever be able to explain...

See, I absolutely LOVE the water. I always have, as have my brother and sister... thanks to our dad. I don't know if my mom was ever actually afraid of the water but she was never comfortable being in it as far as I could tell and she was truly afraid of putting her face in the water though she would sometimes stand in the shallow spots of pools or lakes while we swam and played with our dad. My dad loved the water and swimming and it was because swimming was so important to him that he had us all in swim classes starting as infants. My mom may have always hated swimming but she never put her water issues on us and spent hours upon hours sitting poolside or lakeside watching us three lil' fishies never getting enough of fun in the water. My mom did actually take swimming lessons when we were kids but she never got over the fear of putting her face in the water even though she did get more comfortable standing in it while we swam. We knew we had to be calm swimmers when Mom was in the water but man, did we have years of fun rough-housing in the water with Dad!

I've had a backyard pool for probably about seventeen years now and though our summers are short, our pool gets a TON of use! I spend usually about four or five hours every day in the pool (sometimes longer because I despise hot weather) and my sister comes over for swims at least every other day, when my niece and nephew visit, it's non-stop swim party-time. So, you might imagine that I was pretty bummed last year when I was just unable to get into the pool because of my not properly working legs. My legs are now working a little better but still not perfectly which is another reason Enz decided we should change to a new pool and bury it to a point I can more easily manage in and out of it once level with the patio slab.

Anyhow, I suddenly started to panic once I knew that I would, at some point, be in the water during my therapy. I know this will sound silly but I am truly and horrendously worried that my legs will have forgotten how to work in the water, I don't want to NOT be able to swim and if it turns out I actually can't swim, well... I just really don't want to know it. People keep telling me I am worrying for nothing, that my legs won't have forgotten how to swim BUT..... they did forget how to walk, so why should I not worry that my movements will also be uncoordinated in the water??

Despite my fearful angstiness fighting to take me over this morning, off to aquatic therapy I went...


Aquatic Therapy - Appointment 15: (July 20, 2016.)

I arrived at my aquatic therapy appointment pretty much ready for the pool in a swimsuit (with swim shorts over top to try and help hide a little of my chubbiness) and a tank top, so all I needed to do was slip off my tank and switch into my aqua shoes if I needed them. Turns out I was fine without the shoes, the pool stairs and bottom were not slippery at all, and there is an inside handhold-lip all the way around the inside of the pool so I felt quite secure holding to the sidewall even with how the water was working so hard against me, seemingly trying to topple me right into it.

My first challenge of the day was simply in climbing INto the pool. I've been relearning stairs over the past weeks but these were a little more intimidating to warp my mind around... three steps up to reach the top step and then four steps down into the water which was so hot it kind of pained my feet on contact. The steps were sturdy with rails on both sides but it wasn't the sturdiness that was my issue, my problem was trying to wrap my mind around the top step change from going UP to going DOWN all on the same run. It took me a couple of tries to get my legs to cooperate but I did eventually make the switch and I didn't fall.

Dave, the aquatic therapist, had warned me it was a hot therapeutic pool but it was still a little surprising to the system when I felt just how hot it was. I find lately that with the feelings finally coming back thanks to my gratefully healing nerves my feet and legs are somewhat hypersensitive to heat; I stepped into my sandals after leaving them in the sun for just a few minutes one day and I felt like I was suddenly blasted from my toes to the tips of my hair with a bonfire heat flare from the biggest bonfire you might imagine, the heat was so intense it almost made me seriously hurl. That's a little like how I felt stepping into the water today. But I survived and once I was in, it wasn't so bad. The pool is fairly small, maybe about 25' x 10' and has five different depth levels, each with a single step down. I slowly and carefully sidestepped my way down to the second-last level which was chest deep for me. by the time I made it to the proper depth to start my exercises I was already in need of a rest... not only was the water resistance exhausting me but also was the hot water mixed with my fear of just being in the water. Once I was deep enough to allow my body buoyancy (for lack of better term) to help lighten me, it became a whole new ordeal. It took every muscle I could muster to keep my body planted in that pool, I kid you not! My poor abs were crying out from clenching so tightly in hopes of keeping my body together, still and upright.

Once I had rested (sort of) for a few minutes we tried a few exercises; standing heel lifts, standing toe lifts and standing crossover steps. I did really well at the toe lifts and with the help of the water lifting me I felt my muscles awakening and lengthening, awesomeness! The toe lifts were not so well because the water kept threatening to pull me away when I lost control and wobbled, we had to improvise and do one foot at a time but I made it through. The crossovers were BRUTAL! But... I was so excited at the thought of getting my crossover muscles back in shape because my #2 goal is to be able to skate again and crossovers are immensely important for skating. I didn't do so well but I tried. I could lift my knees marching-step style but my legs just weren't strong enough to fight against the water and cross over each other. It was so frustrating and so disappointing to only be able to cross to the point where my heels were just barely in front of my opposite foot toes but I will keep trying and I know I will keep improving so I'm trying not to let it overtake what was mostly a really good therapy session.

I only spent about a half hour in the pool but boy was I in need of a good long rest afterward!Climbing those awkward stairs out of the pool was even more difficult with gravity suddenly kicking back in after the lightness of being in the water but I slowly made my way and I felt as proud as I did wobbly. It took me a couple of hours to get my 'land legs' back and lose some of the extra wobbliness but the gains of today were well worth the pains of effort I put into every moment.

I managed the stairs.

I managed the heat.

I managed a few simple exercises.

And perhaps BEST of all.....

I overcame my fear of getting back into the water.

New Pool - Part 1

The groundwork begins.....

Deciding on a new pool sure means for a lot more work than I had anticipated! I thought it would be a snap; take a pool down, pop a pool up, sounds simple enough. But of course, we never make things quite so easy on ourselves... The first thing we did once we had fully finished building our house was to install an 18' x 33' above ground pool, we thought about putting an in-ground but we have so many critters living in the nature that surrounds us, it just made more sense and gave me more peace of mind to keep above ground with the swimmin' hole. The pool was fantastic and I loved it but we have very short swim seasons here in Thunder Bay so this year it finally seemed like the right time to try out a new style, an on-ground insulated model to hopefully extend the season a little for us.

We had hoped to have the new pool in and swimmable weeks ago but were waylaid by weather and illness. First Enz got sick and ended up in the hospital; three kidney stone surgeries later he is finally just starting to gain his strength back. Then we had thunderstorms that were so bad they resulted in some pretty heavy flooding throughout the city, we were beyond fortunate to be spared on the flood front! Next up, Enz's poor dad suffered a stroke (thankfully a mild one) and was hospitalized for over a week before he could have the surgery that will hopefully prevent another stroke from happening in the future. Dad was discharged from hospital only to be readmitted a day later with pneumonia following surgery. Not fun! Anyhow, Enz is the only in-town relative and so had to constantly be at the hospital to be with and help his dad talk with the doctors and nurses. And then there is still slow-healing ol' me and it takes me much longer than I would like to be getting everyday tasks done nevermind being able to start the pool project on my own. So, we are plugging away as we can but now that Dad is out of the worst of the danger and staying with us while he recuperates, we are finally back to it.

Here's our fun progress thus far:

Our first step was to take down the old pool.

You were a gooooooooood pool.....
(sung to 'Good Friend' by my beloved Kenny Rogers)

Next, we needed to start digging the new base, it was an easy start with the Bobcat, which I just adore putting to good use. I also just LOVE that being able to operate machines means I can physically help with the workload without slowing everyone down with my wobbliness when standing... it also means I am not always in the way with my annoying walker. I need a little help to climb inside but once I'm set, I'm ready and able to work... I thank the Heavens for hand controls, they sure do come in 'haaaaandy'!!!

Useful is as useful does...

My workaholic boys were on supervisor duty and for the most part, they supervised through heckling... something they have quickly become incredibly adept at.

Nice boys..... real nice!

Because our new pool is an on-ground pool it will be half buried, half above ground which means we needed to dig the ground down 60". Doable with the Bobcat? Yes... however, the dig site is not an easily workable one, filled with old wood and large boulders from the original land-clear to build our house eleven years ago. We were gratefully overjoyed when our friend Toby brought his machines over to help us get done before winter showed up. Whew!

Very rarely do I give up my seat... but Enz really wanted
to get to do some digging, too.

...just workin' togetherrrrrrr.....
(sung to So Happy Together by the Turtles)

I played nicely and let the boys take a turn... but it wasn't long before I gave them the boot and took over once again.....

I like to dig...

...I like to dig, dig.....

.....clay and rocks and tree-eeeeeees!
(all three sung to Apples and Bananas by Raffi)

They may have switched sleeping spots but the PlayDay Duo were still busy 'supervising' (in the shade and breeze, safe from the bugs) from the outdoor screened room... the fresh air was apparently a little tiring.

Supervisor Day

Supervisor Play

Toby also brought his fantastical little excavator along to help with the finicky finishing touches of cleaning up around the edges of the pool area... worked like a charm!

Cleaning up the messy floor debris...

...then cleaning up the side edges from above. Thank you, Toby!!!

The digging was finished just as storm clouds darkened from a bright, sunshiny day into a massive thunderstorm of darkness (which the boys continued to sleep right through as we quickly worked around them to close all the screen room windows.

After a half hour of rain, the sun shone brightly once again!

A little mucky but it will dry and the pool is one BIG step closer to finished!

And juuuuuuuuust in case I didn't share my love for digging quite clearly enough... here's another little snippet of me helping and having fun in the front end loader of awesome! 

To be CONTINUED.......

So, what fun projects are YOU working on? Don't be shy... share in the comments section below!!

Neuropathy Showdown - Week 7

Physiotherapy - Appointment 13: (July 11, 2016.)

I spent the whole weekend waiting and looking forward to my early morning physio today, I knew some extra challenge was coming but I hadn't quite expected just how much challenge I would be facing! I had pushed my body this weekend with operating the Bobcat on Saturday to dig the ground in getting ready for the new pool and though I know it's basically an easy job because it's hand controls, it still takes all my concentration to work at keeping my body straight and safely anchored while working inside of it... not to mention the work it takes me just to get in and out of the machine with help. It feels SO fantastic to be of use instead of just having to sit and watch; talk about a beaming heart when I crawl out of the machine having accomplished something! Then on Sunday, my father-in-law was discharged from the hospital after his Carotid Endarterectomy surgery following his stroke and asked us to take him out to camp for a little fresh air and walk in the quiet. The walk was a very short one but challenging for all three of us not-quite-up-to-snuff ones... Dad after his stroke and surgery, my Day healing from his surgery and my still healing body. The hills at camp were even harder for me with the walker but I managed to put my new-worked ramp skills to use and made it up and down all on my own, albeit very slowly. It's VERY rocky where we are. When we cleared the land to build our camp, the machines were able to dig and cut through some rock but once they hit the Canadian Shield... that was as far as they went so basically, that is our whole area foundation and traversing it with a walker is a full body workout! All in all, it was a big workout of a weekend, still, I couldn't wait to give my body even more work this morning at therapy!

Play (blue shoes) is the only healthy one of this bunch but he was so patient and made frequent stops to lean in
and hug his Nonno along our short walk... I think Nonno missed Play and Day even more than he missed us!

Since Nonno is staying with us while he recovers we had a full car as we headed out to therapy this morning, Enz and I up front, Nonno and the walker in the middle, the boys snuggled together in the back of the SUV; we were a little early getting in to town so we dropped him off at his house which is only about a five minute drive from the hospital so he could have a few minutes on his own while Enz and the boys dropped me off before going back to help him gather a few things for his stay with us.

At eight-thirty, mine was the first appointment of the day and the halls were so silent I felt for a moment like I had to tippy-toe and whisper... the whispering I could handle, the tippy-toe part, not so much. It felt a little strange when the place is usually bustling with activity but it was okay quiet, too. I am a morning person, quiet or bustling, I just love every minute of earliness and I always feel at my best, my strongest, so as I sat in the hall to change into my therapy shoes I felt my energy rising. And boy, did that rising energy come in handy!!

In my last post I mentioned that I had graduated from my first exercise program into a new round of daily home exercises. I knew the new exercises would be challenging but as excited as I was, I had no idea how hard the new challenges would be! I struggled, I agonized, I felt utterly and almost overwhelmingly defeated and I felt the teeniest pangs of triumph. The work of each new movement was an ordeal... some more excruciating than others but, with patience, concentration and help from Julie I managed through each new movement. I felt deflated when I could only lift my legs barely a single inch of the table and was close to tears until Julie gently reminded me that I had struggled with my introduction to my first set of exercises the very same way... "And now look how well you've done, you have graduated to new exercises and you are reeeaaaady..... It will be hard," she told me, "but your muscles are responding and we need to keep teaching your hips and your legs, we need to keep demanding more of them. It IS going to be hard... but you can do this." And she was right; in the weeks since starting my therapy I had somehow forgotten that when I first began everything really was just as hard as this new step forward (that feels like backward) and I did falter and struggle and hurt. I have been focusing so hard on earning my accomplishments that I guess I sometimes forget about the torturous angst of my rebuilding beginnings. I know in my heart that the struggle to heal is going to upset me at points but it helps to also know that some points will be filled with so much joy I may hardly be able to stand that. And so, I find myself at yet another new beginning and as difficult as this new routine is, it's going to serve me more than well in my journey to being whole once again.

To my new exercise routine papers... may you soon show the wrinkles and markings of your predecessors!
And to the old... I thank you for the struggles, just as much as I do for holding my achievements!! 

I have moments of strong mixed with moments of weak but I know I will find my way through this stage just as I have found my way to this stage.



Physiotherapy - Appointment 14: (July 14, 2016.)

Balance begins... with terror.

I didn't know that today was going to be such a hit to my psyche. I feel so torn about today that I don't think I can make clear sense of my feelings even now, hours after the fact. It feels almost like the very instant I make peace with a physical acceptance... I find myself immediately at war again. Like this morning when we started working on my balance issues and I felt myself tense and quiet in my fear of letting go of the walker I have only just made peace with. The first time I had to reach for those first-dreaded walker handles my eyes pooled, my stomach roiled and I was so distraught at even just the thought of touching those handles that I felt like I was sticking my hands into buckets of worms... and anyone who knows me knows the panic inducing horror just seeing a lone worm does to me. Not a pretty sight.

We started today with a few strengthening exercises and though I stood safely holding onto the therapy table with a chair directly beside me for my between set breaks, I couldn't help my worries that my walker was out of my reach. Now, at home, my walker is usually out-of-reach and I am okay with it because I really can't easily use it inside the house anyway; Enz doesn't like it when I accidentally knock into a wall or the furniture and we don't really have an easily manoeuvrable floor plan. the good thing is we have large furniture and a large kitchen island so it's easy for me to always have something to hold to or help break my fall when I stumble and start to go down... But, outside and in big open spaces like the Neuro Gym, I don't have the same safely catch-nets as at home, my walker has become my net when out in the open so not being able to touch it was angst inducing to say the least. Somehow, I survived but more than a few times I had to talk myself into just holding to the padded table edge rather than gripping to it as if I were clinging to a cliff edge in danger of falling.

First we worked on some leg lifts; standing hamstring curls, standing glute kickbacks and toe-to-heel raises (two sets of each). I was elated to now be able to lift each of my feet entirely off the floor, even if it was only two inches I could clear it was still an inch-and-three-quarters higher than when we tried the same moves weeks ago. My body burned with the work and concentration of movement but I felt as strong as I did weak once I had finished. The hardest move was definitely the toe-to-heel raise... I actually do really well on the toe raises (lifting heels off the floor) but trying to get my toes off the floor while expecting my heels to hold me is one of the worst feelings I've ever known. My whole body turns into an all-out mess... my ankles seem to fall apart as my legs turn to wobbling jelliness and I just have to fight so hard to hold onto the table so in trying to avoid falling completely apart. It's frustrating, so unbearably frustrating. But we modified movements and techniques until I could teach my toes a new way to ever so slightly lift in confidence and toward the second half of my second set I was able to lift juuuuuuuuuust barely from the floor - not really fully on my heels but I'll get there eventually.

Next came the part of my session that took it's swift but heavy toll on my dignity, as if my dignity hasn't suffered enough through this ordeal... okay, so it wasn't near as bad as losing bathroom dignity but it was a hard hit nonetheless. This morning I learned how to pick things up. Go ahead and laugh, I'm sure I looked ridiculous in my humiliating task of picking up coloured popsicle sticks from the floor only to then stand and steady myself to reach forward and pace each one into the waiting container set far enough in front of me (atop the therapy bed) to make me stretch and reach. Of course I've dropped things since this illness hit but I had unknowingly been compensating not being able to bend'n'retrieve with my flexibility allowing me to keep my legs straight while holding onto something, leaning over and then pushing my body back up using only my arm strength; if I happened to be too far away form a safety net, whatever I had dropped simply waited until I had help in the form of someone to do the picking up for me... and then I would apologize profusely for having to ask for help. I am, in my heart, happy to have the opportunity to be learning simple tasks again but my heart also sinks in mortification of just how hard the simple tasks have become. Even as I watched Julie place the row of tens sticks on the floor before me, I dreaded what was to come. The sticks lay tauntingly in front of me, just a few inches out from my shoulder-width planted feet and the safety of the table edge was my only comfort..... until it was taken away. I had to let go. I couldn't let go. Julie gently led me through the mechanics yet again, "Just like you are sitting into a chair... bending your legs, crunch those abs tight to hold you together just like we've been practising with getting into a chair and not using your arms... the very same movements, you can do this..." I was shaking, I could barely catch my breath in my need to concentrate on controlling my every movement. I honestly didn't think I really could do it but then, suddenly, my left hand fingertips touched the far-left stick. I can't even find words to describe just how hard it was to mix the two concentrations I needed then, one to hold my chair-style squatting and another to fumblingly pick that stick up and hold it as I refocused on raising myself to stand again. It was horrible. But I slowly forced my legs to lift and straighten while crunching my abs to fight the ataxia so wanting to overtake me. Once my legs were straight and I felt stable enough, I lifted my body at the waist enough to lean and reach to drop the stick into the cup. I had to focus so much on not missing the bulls-eye of the cup which was actually even more of a disheartening discovery for me. My arms and hands are strong and controllable, or so I had thought but when my whole body had to become a unit in order to complete this one simple job, nothing wanted to cooperate, even my arms and hands took every bit of effort I had to find, retrieve and place. Once I finally did get the stick into the cup it was time to repeat and bring up another stick with my right hand. I started immediately to wobble and without even thinking I reached to steady myself by gripping the bed-edge as I bent... "No holding! You can do this. Just like sitting onto a chair..." oh yeah... crap..... It took awhile in both time and excrutiatingness but I did retrieve every one of those ten damned coloured popsicle sticks.

We moved onto another new move using a hand weight for twisting passes. Again I stood slightly out from the edge of the therapy table. In trying to tame the ataxia that overtakes me it is important to really work at strengthening my core muscles which took a really big hit when the paralysis first came on. The simple movements of a completing just one standing weighted twist had me in quite a tizzy. Julie stood directly behind me and held on to the safety belt around my ribs with one hand while holding a small hand weight in the other. My task was to keep my feet and hips planted and facing forward while twisting to my right to take the weight from her before twisting around to my left to give it back to her on the opposite side. It was a struggle of epic proportions to remain standing, twist and not drop that weight while trying to keep myself from crumbling in the process. Slowly but shakily... I can't say I aced that movement but I can say I didn't fall down or drop the weight.

Last up for the day was clothespin twists... Enz kind of delighted a little too much in the fact that I could now hang some laundry on a line like that's such a big deal! That may be the last time I share my accomplishments, at least the ridiculous seeming ones with someone who just doesn't understand struggles. Anyhow, I wasn't actually using a clothesline... there's this, well I guess it's a kind of therapy activity board that has a whole bunch different tasks it helps with. My board task for today was to stand with the board at my right side, do the same kind of squats as with the popsicle stick pick-ups but this time adding a slight twist to pick up clothespins from the floor to my left side (picking up with my right hand)... then raising myself back to a stand and reaching to clip each clothespin onto one of the screws beneath the overhang of the board. Far from as easy as it sounds but I manged all five, even through my many missed attempts at the screws. Next I had to turn around and reach with my left hand to retrieve each clothespin, lowering and twisting them back to the floor, placing each back into the container on my right side. It had been hard when turned the other direction but this way was awful since my right side is still so resistant to work. I felt like I cheated a little by getting close and just dropping each clothespin into the container but I just couldn't manage to reach and set them down even though I was working and concentrating so hard.

I guess when it comes right down to it, I succeeded in some things today and I tried with others. I know that if I was competent at everything I wouldn't need to be in therapy but it still stings pretty sharply to feel I failed. I'm a bit of a bomb of emotions as I sit here to write and for now, unfortunately, this blog is my only safe place to go off. And to be completely honest, even I don't want to have to deal with any of this. I want to be strong and healthy not weak and embarrassed. I really do believe that before much longer I will be back to my capable self, it just bites to have faltering moments in the meantime. I may sometimes feel a failure but I actually do know in my mind and in soul that I've truly not failed... I am still working and that is success in itself.

Is a Plaid-Glad heart really all that bad.....??

I've been given hints over the years about my mad-for-cozy-plaid ... uhhh ... "obsession", although I now much prefer to call it the 'O-word' (in the style of Rick Lagina who doesn't like to have to admit to obsession). I honestly don't know when it became an actual need for the comfort of plaid to hold me, but it did become exactly such. I do remember when I was waaaaaaaay back in seventh grade, my best friend and I both snuck our dads old buffalo plaid flannel jackets and started wearing them, or I really should say we started swimming in them to school every day. I remember those old worn jackets reaching our knees, the sleeve cuffs folded up so many times it was as though we were wearing water wings around our arms... but boy, were we the COOLEST!!! We were total idiots! Because my dad was a professional lumberjack turned forestry consultant, he had lots of plaids for us to steal without being found out... even after we were found out, it just got even more fun to dart into the house, grab a couple plaids and be off again in a flash! Oh, those days of awesomeness. My plaid-glad fashion phase was just one I guess I never really grew out of; the only real change was that I somehow went from sneaking them to collecting them..... and now I can't stop. Or, I don't want to stop. Either way, I love plaid and plaid loves me; I know it's true 'cause it never lets me down!

Anyhow, this whole plaid post came about in my mind a few days ago when we were settling the boys into the car for a ride out to our camp. I realized it was a little chillier out than I had first thought and asked Enz to bring me out a heavier plaid than the one I already wore (the shores of Lake Superior are always much cooler than at home) since he was heading back inside to get the cooler.

"Which one do you want?"

"I don't care, whatever one as long as it's a little heavier."

Enz was back out in no time and opened the back-seat door to set the cooler inside before hopping into the driver's seat while passing me my plaid... angrily.

"I feel like I just walked into a MAN'S closet, Gillian!!" He said in annoyed disgust while shooting me a look of complete disbelief.

"What? ... Why?? ... Wait, what the fuck are you even talking about???"

"I'm talking about YOUR fuckin'  closet... THAT'S what the fuck I'm talking about! It's absolutely ridiculous how many plaids you have! Don't you even DARE tell me you ever need another plaid... and I mean EVER!!"

"But I don't have a purple one..."

"I'm serious, Gillian!"

"I was being serious, too... I really don't have a purple one....... so I actually do need more."

"Can't you just do some shopping in the, y'know, women's side of the store??!"

"I'm wearing a sundress right now; pretty certain it DID come from the chick-siiiiiiide..." (I was actually wearing a sundress I made myself but the fabric was girly fabric)

"This is not a joke, Gillian! Who even wears men's plaids over sundresses? I never see that around town... unless it's you... men's plaids or jean jackets, never just the dress like everyone else....."

"I like it. And anyhow, what's the big deal about it now?? My closet stays open and you face it directly it every time you walk out of your closet... why is it even suddenly pissing you off?!"

"I never actually looked in there before to notice but now I saw... No more plaids!!"

"Unless I find different colours I still need."

"No different colours, Gillian!"

"Well, except for purple, though... and maybe navy....."

He was pretty mad so I stopped reasoning then, but I still WILL be looking for purple, and navy, and maybe green... but definitely purple!

After this fun little chat we had a very quiet drive out to camp and the plaids were not mentioned again. Still, it started me wondering about my style, or lack thereof...

I don't think my closet looks like a mans closet...
So what, if every plaid came from the men's department?



I really just don't see a problem here... all I see is comfort!



Top left - Spring and Fall plaids mean who needs a jacket?!!
Top Middle - Plaidly cozy while waiting for my annoying mass of hair to dry!
Top Right - Mix'n'match with a turtleneck for Winter chilliness warmth; seriously, plaids do all!
Bottom - When I'm not wearing plaid, I'm holding plaid!

Sometimes one plaid just isn't enough, so I bundle in two 'cause it doubles the love!

Well, of course I think that because I love plaid my boys also love plaid...

...and even they can't help how handsomely they wear it!

Play plaidly lets me cuddle him on up!



Day is usually excited to wear his plaids but he decided
these plaid rain shoes were a little much and he told me upon refusing
to walk... "That's IT, I'm DONE! I'm finished with your
plaid 'cause I'm going PLAID-MAD!!!"

Turns out maybe plaid wasn't quite all that bad.....

But, plaid is so great, I mean, who could seriously disagree? There is nothing like the comfort of old worn-in plaid. I've never been entirely comfortable in my own self; I've always been too tall, too awkward, too giggly, too... plain. But none of that matters in my plaids. So what, if I'm not tiny, petite perfectness! So what, if I'm not pretty to look at! So what, if I'm a little chubbier than society dictates I be! It's aaaaaaall good..... as long as I'm safe in my plaids.



Plaids are PERFECT for cuddles!



My best conversations happen in or near plaid!

I can't wait to skate back out onto the track,
decked out in our team-plaid of red, white and black!



My boys have plaid beds to keep comfy while dozing...



.....and, I love making plaid quilts to keep us all cozy!

I noticed in this picture, some might have a point... boys both in PLAID, bed of PLAID, curtains of PLAID and two hanging jackets of PLAID (both mine)... all in one tiny frame. Maybe I really do have a plaid problem.....

The outfit I wore on the day of the plaid blow-up conversation which I didn't think was so bad and is, in fact,
one of my favourite outfits; a white cotton with black flowers sundress I made, topped with the
perfect black and white brushed cotton plaid... How can this be wrong??!

Even if I haven't convinced anyone yet that PLAID is the greatest invention ever... I hope these two plaid-clad-bustling-bums might just make you rethink...

I think plaid is not bad, not bad at all! But if plaid is a problem, Plaidzilla I'll be and I'll Plaidzilla along smiling so cheerfully!!!

I want to know... what is YOUR greatest comfort???

Neuropathy Showdown - Week 6

Physiotherapy -  Appointment 11: (July 4, 2016.)

Do you ever feel like life is just too much to handle? I sure do... but I usually feel like it's too much beautiful to handle, too much grateful to handle, too much wonder to handle. Yes, I have suffered huge and devastating losses in my life but the love I felt both for and from those I've lost always somehow kept me feeling up-in-thankfulness for time blessed with them at all rather than leaving me pinned down in the darkness-of-the-dumps where others I love tend to dwell; I have seen and I never want to know that darkness for myself. BUT..... sometimes there is just SO much scary stuff happening that it's just really hard to deal with it all and the past couple of months have been a trial. It's been just over seventeen months of dealing with my own health and healing issues and though it has been the most painful-difficult I have ever known it's also been easy to deal with because it's ME. I can deal with it because I have to. What I can't deal with is having to watch anyone else go through sickness, pain or fear. It sucks to feel helpless yet that is exactly how I have been feeling lately.

Two months ago, my husband doubled over in sudden and severe pain one morning at his office. He was swiftly admitted to the hospital when it was discovered that a large kidney stone was stuck in the Kidney end of the Ureter... way too big to pass but stuck and causing trauma enough to have him on kidney-failure alert for the four days before his first surgery. It was AWFUL. His friend who visited at the hospital thought I was ridiculous for wishing it was me in pain instead of my husband but for me it is just so much easier to have the pain and just deal than to have to see somebody else in pain and not be able to take it away. Three surgeries later, Enz is doing well but still working at getting his full energy back... the experience and surgeries took a toll on him, a fifty-two year old dude who has never before had anything worse than a common cold to contend with.

So... Enz just gets to where he's feeling pretty much back to his good ol' self and we have plans for our long Canada Day weekend filled with pool work, camp work and picnics until..... last Thursday when Enz picked me up from my therapy and told me he had taken his dad to the hospital; Dad was okay but confused and was in CT scan so Enz would scoot the boys and I home and rush straight back to the hospital. Turns out my father-in-law was extremely lucky in suffering a mild stroke that could have been much worse. It was the fact that he only had one clogged artery and the three others that are perfectly clear which saved him from the severe disaster it could have been. He is thankful but obviously scared by all that is happening. He is still in the hospital and his MRI yesterday showed the blockage plaque moving through his head so hopefully the medication is working. The Neurologist just keeps reinforcing into him how lucky, lucky, LUCKY he is to have survived and be doing so well. The stroke happened on the right side of his brain so his left side is affected but his strength is coming quickly back. For an Italian who immigrated to Canada and started working in construction as a teenager, and who is still at seventy-six years old finishing concrete, it is not an easy feat to be sitting in a hospital bed when there is "work to be done".

All in all, it has been constant fear and worry the past couple of months and today I was tired and I just almost couldn't will my own self into going to my own therapy. But I pulled myself up, put on my smile, got my boys ready for a car ride (which they both just love) and was ready and waiting when Enz picked us up to go. I felt guilty on the drive into town for not wanting to go but I knew it was only because I was just so tired from all the suckie happenings with Enz and his dad... it also didn't help that I was still reeling with hurt feelings and anger over being banished (unintentionally) from my own moms house immediately following a rare dinner over there last evening. Let me just clarify..... my mom did not banish me, my annoying allergies did, thanks to my sisters cat spending so much time there; I had to leave the instant I realized I wasn't getting enough air into my lungs and started coughing, better to leave on my own while I could than to have to be rushed to the hospital with dangerously closing airways. All this stuff added up to a one very unhappy Gilly, which only happens usually about once every three or four years for an hour or two. I wanted to just curl up and cry but decided about halfway to my appointment that I would instead channel my nose-out-of-jointness into extra power to use for therapy. So, by the time I did arrive, I was fully ready to be there and to give my session everything I had to give, and more... I was ready to work.

And work, we did!

We only did once up and down the stairs today but I managed all the way with just one hand on the railing and no extra help from my therapist!!! It was so hard and I am so slow and it is such a struggle to control my wobbly movements but I can safely manage and even better than that, I have confidence in my newly earned accomplishments. We will still be working on stairs but now that I am doing so well, especially in going up and down sideways, it's time to concentrate really hard on my walking and balance issues.

Proper walking technique is proving to be so difficult it almost seemed impossible as I tripped and messed up and lost control countless times while practicing over the long weekend. Too many times, I resorted to my easier marching steps, until I realized that only six weeks ago my marching steps seemed almost impossible to do. I just have to keep telling myself that yes, each new movement is excruciatingly challenging but no, none of them are impossible. Possibility abounds just as long as I keep working and believing.

We slowly walked in great concentration of movement toward the main hallway, where there is a hall-ramp where I learned how to use my walker on inclines, something I have still really been struggling with. I was tense with my fear of losing control and falling but with guidance for each step (foot lifting/placing, body position, walker position, brake usage, trust in myself and the walker) I made it up and down that ramp twice. I was just as physically and mentally exhausted as I had been our first day on the stairs. I had thought that ramps would be easy compared to stairs but let me tell you, the ramps are a WHOLE other beast of brutal and being on a slope is even harder because there is no safe spot as there is with a level stair in a staircase. Ramps are harder than stairs, who knew??!

From the ramp we went to the Physio Gym to again work on my walking at the parallel bars. Even though I had spent the weekend feeling a failure with my practicing, I saw in the dreaded mirror that I hadn't been failing at all. With all my concentration focused on helping my body to memorize the proper movements,  my hips weren't snapping outward and dropping painfully with every step and though I was still struggling to move and place my feet properly, my pull-thru from backward leg to forward leg was the tiniest bit smoother. It's not a lot of improvement but it is improvement which means that my muscles and nerves are responding even if only in tiny increments. Walking is hard and it's something I will look at with awe for the rest of my life and never take lightly again.

I was so worn out after todays session that I almost fell completely asleep just on the half hour drive home. And perhaps what I realized most today is that sometimes it really is all about mindset, for me anyhow. Turning the power of hardships into power of healing can do so much more good than holding myself back in upset.


Physiotherapy - Appointment 12: (July 7, 2016.)

Big, big happenings today..... BIG .....happenings!!

I had an earlier appointment time today and although I live for early mornings it wasn't an easy time getting my sleep-loving Greyhounds up and moving before their usual later wake up time... and especially so since my sweet Day is having a tough time after having surgery just two days ago. He was slow to get up, wanting only to be held and snuggled instead. He was happy for a car ride and some fresh air though, and he happily followed his brother, Play, out to the car while sniffing the sweet morning freshness; both boys were straight back to Dreamland before we'd even left the driveway. Once we had arrived at therapy I had a really hard time parting from my sick boy but I knew he was in capable hands and instead focused my full attention toward my session as I made my way inside the hospital.

Once again, we began with the stairs and as always the first time up and down was a challenge of massive proportion. I always falter more on the first round as I work to settle not only my wobbly movements but also my overwhelming fears of falling and being embarrassed. Even though I know I improve with every stair I conquer it still seems to take a first run-thru every time to get my body to again understand the sequence each muscle needs to follow to make each step happen. I am uberly proud that the weight-shifting part is now so much smoother in both lifting and lowering which has eased my fears so much because I can trust that my legs will hold me as I work on learning the movements. Three trips up and down are a lot of work and I am sooooooo unbelievably slow but I kind of came to terms with my slowness today. It's okay that I'm slow and when my therapist, Julie, took a few minutes to talk to me about my slowness worries today, I think it really did click as truth in being okay. The stairwell we have been working in isn't a super busy one but in the time we are there working on my mad-stair-skills there are probably between ten and fifteen people coming through. I try so hard to not let the sounds of everyone else skipping up and down the stairs intimidate me but everyone slows and politely waits, giving me the space and time to make it either the last steps up or down so I don't lose my momentum. People are good and well-intentioned and even though I know it's okay that I need help even in form of patience I can't help but to feel nervous and apologetic... and I always apologize for holding anyone up and then I always feel close to tears that I have to apologize for how slow and awkward I am. One a rest break at the top of the staircase, as I sat on the chair, it was clearly time to address this. Julie told me, "You are not slow and awkward... you are learning. You don't have to feel like you are in the way or being too slow. Speed is going to come but it's going to be the very laaaaaast thing we work on. Your body has to re-learn every movement until it again knows what to do without thinking every movement through... that's when the speed will come. Don't apologize and explain yourself when you are working to learn. Use the people passing as part of your therapy to healing, not as a way to keep hiding..." So, no more holding myself back with apologies for what I can't do, instead I will focus on all that I can do in moving forward. See? There's that mindset part again, sometimes just looking at situations a little differently can open up a whole new outlook.

So after working on the stairs for awhile, we worked on a few leg-lift exercises at the stairwell railing. Leg lifts are REALLY hard for me but I managed through and felt my muscles waking and working with the slight lift movements. When we first tried these lifts a few weeks back I couldn't lift without help but today I managed to clear the floor with my feet all on my own, I only cleared by about an inch or so on the side lifting but for the hamstring lifts I managed at least three inches lift. incredibly hard work and I was seriously sweating and puffing as though I had just run a marathon after just two sets of each but I did it.

We headed back to the Neuro Gym to review my home exercises and how I have been doing with them. I have been working really hard at home and I knew I had been making progress but I was worried it wouldn't be enough of a difference... boy was I wrong. This is the 'BIG' part of the day; I have been doing so well that I have graduated to new home exercises because I am growing strong enough to handle slightly more of a challenge for my muscles. Six weeks ago I couldn't lift my straight leg toward the ceiling while laying on my back, heck I couldn't even lock my knee to straighten my leg and keep it straight! Today, I tried again. Today, I straightened, held and lifted my leg about a whole centimetre off of the therapy table... it took every mili-ounce of strength and concentration I could muster but somehow my muscles and nerves listened to what my brain was asking of them!! This new development means new exercises, woohoooooooo! My first exercises are still hard work, don't get me wrong, but I want to put my new strengths to work, too and though I have to still do my same exercises through the weekend I am looking forward to learning and struggling through my new routine come Monday morning!

Up next was a walk through the winding hallways to the hallway ramp area. We were also focusing on working up my endurance so even though my therapist asked me if I needed a rest before reaching the ramp I said I wanted to just keep going. I was short on breath but not gasping, I was slightly sweaty and my body was almost at its exhaustion point but I felt like I needed to push through, and I did. We didn't even stop before starting down the ramp, this time without the safety belt around me so I was dependant only on my walker and the proper use of it... I was grateful for Julie gently reminding me about using the brakes as we reached the top of the ramp, I'd been so focused on my fear of the ramp that I had forgotten about the walker brakes which could have been a total disaster!
Going down was okay, again extremely slow and embarrassing even though I tried so hard not to let it be... unapologetic slowness isn't the easiest thing to get the hang of, but I'll get it. Anyhow, going up was a faltering struggle but I managed nonetheless and as we headed back toward the Gym to get my schedule for next week I was sweaty, wobbly and worn out but boy was I filled with accomplishment.

Today was a big..... BIG .....day!