And the Winner Is…

WindowsWhat I didn’t tell you in my last post is that we put an offer on Option #1 immediately after viewing it.  It has everything we want and more.  We had driven to this community and looked at houses before, but they sell fast, so when we found out this one was sold conditional on the purchasers selling their own home, we asked to view it.

Hard to tell, though, which way people will go.  Put in this position ourselves, we would waive the condition and leap – but that’s us.

“There were competing offers at the time,”  the realtor warns us.  “They fought for this house.”

So we let it go and set our hopes on the lake, knowing that Option #2 would serve if nothing else did.

“When did you know that this wasn’t for us?” Ric asked me on the drive home from the lake.  “I knew right away.  Too many hidden costs. I felt like I was being taken for a ride.”

treesnhouseI hadn’t known.  I was looking for a solution that would compensate for losing the first house.  We stopped for dinner in the second town, and then drove around the neighbourhood, orienting ourselves.

Option #2 it would be.  Budget wise, this was the best choice.

“I like that the backyard is private,” I stated.  We’d picked out the unit we wanted.  Tomorrow if the sales office was open, we’d make an offer.

“Maybe we should wait?”  I dared to suggest.  “Maybe another house will come up in the town we want.”

“No.  We need to take care of this now.”

We lingered over our morning beverages, he on his screen, me on mine.  Then, just after noon, he decided to cut the grass, while I decided it was a good day to clean the motor home.  At 2:15, his phone rang.  I answered.

“How did you like the Bluffs?” the realtor asked.

StMary'shome“Well…it was interesting,” I answered, trying to be tactful.  I elaborated on costs, size, facilitates, lack of maintenance.

“Good thing it’s not a problem for you then,” she said and my breath froze on the intake.  “The house is yours!  Drop by the office tomorrow and we’ll firm up the paperwork.”

We take possession August 1st.  In the meantime, we’ve got some work to do.

 

Brief Connections

THstreamThe morning drizzle gave way to sunshine by noon and even though I’ve been tired today, I decide to take advantage of the clearing before retiring for the evening.  I grab my camera and go in search of worthy images, but my legs are useless today,  so I decide to sit instead, on a picnic table beside the stream.  I hear, before seeing, the family of geese I’ve been tracking making their way towards the water.  A I raise my camera I see movement in my peripheral vision.

The man approaching is a regular here; I see him walking past several times a day.  I raise my hand to wave.

“Do I know you?” he asks.  “I’m sorry, but I’ve had a stroke and this doesn’t work very well.”  He taps on his temple.

“I know how you feel,” I say.  “I have inflammation on the brain.  Mine’s not in the best working order either.”

MakeawishHis eyes open wider and he steps closer to me.

“I’m Ric’s wife,” I say and point to our motor home.

He nods.

“I’m photographing the baby geese.  Trying to keep track of them.”

He nods again and then steps back as if he’s in my way.

“You’re okay.”

“They grow fast.”

“Sure do.  Good thing kids don’t grow that fast.”

He smiles, then blurts out:  “The hardest thing is that I feel like such a burden.”

He has caught me off guard – hit a nerve.  I glance at him and see that his eyes have filled.  My tears come too.

“I do, too,” I croak.

“I came here thinking I could make a difference,” he continues.  “I wanted to help out, and now I rely fully on my sister.”

orangehammocks“We are lucky to have someone who loves us enough to care.”

“We are.”

“All we can do is focus on our progress – even if it seems awfully slow.”

“Oh for sure.  They thought I was dead – had to force feed me.”  And then:  “I’m sorry about that.  I’m over it now.”

“You’re doing well,” I say.  “I see you walking every day.”

“I made it through the winter,” he says, still fixated on his own story.  “I guess that is something.”

“It sure is!”

“I was here all alone, too.”

“Wow.  That is something. Good for you.”

He thanks me for my time and walks away.  I linger and take a few more pictures of the goslings, then limp my way back to our home.

Everyone has a story.  Everyone is battling something. The best way we help one another is just to listen.

 

 

RV-Able: A Question of Wellness

“I had lunch with some of your old colleagues yesterday and we were talking about you.”

Never a good start to a conversation when your relationship to the mentioned parties ended the day you stopped working.

“Oh, who?”

The people mentioned are acquaintances, only one actually worked with me and it was before ME/CFS struck.

“I told them you are heading for Texas.  We all agreed you must be doing much better to be able to do that!”

What is it about this conversation that riles me so?

First, I’m pretty certain not one of these people actually has a clue about my disease and what I go through on a day-to-day basis.  They know as much about my personal life as I do theirs – nil.  I would love to have tea and share experiences in person, (haven’t heard from most of them since disappearing from the work place) just please don’t make me the subject of your chats with others.

Secondly, it’s one thing to have someone tell you face to face that you look well, but to assume I am better without knowing all the facts – well, that makes you an ass, as the old saying goes.

“The big push will be to get you back to work,”  I remember my doctor telling me. She went on to say that work is the last place one needs to go when recovering from a long-term illness.  Social interaction is especially important to help normalize again, and then when able, to travel.  Work is so much more stressful, and despite what insurance companies want us to think, does not add to quality of life which is so essential for healing.

That none of these able-bodies individuals understand that, I get.  From their viewpoint people on disability get to lounge around all day and do fun stuff.  (I’ve sat in so many meetings where I’ve heard this about those away on long-term disability, as if being ill is something to desire.)  What infuriates me, is that the messenger, a so-called close friend, hasn’t even spent any time with me in nearly a year, and yet, she is making a pronouncement about my condition.

I cut the conversation short, of course.

“She says I must be so much better,”  I tell my husband when he asks about the call.

“Twenty percent,” is his response.  “You are maybe twenty percent better.”

Deciding to sell our house and live full-time in a motor home is my husband’s creative solution to managing my disease.  Together, with input from my doctor and psychologist, we have developed a plan to embrace life despite the challenges we face.

th-2I still have ME.  I still struggle on days to get out of bed.  My legs continue to give me problems.  My brain doesn’t work right.  Some days I feel worse than ill and pain is out of control.  I have to watch what I eat and how much stimulus I subject myself to, and despite all this, I’ve decided to keep on living.  Worse thing that happens is that I die trying.

I guess that’s too hard of a concept for others to understand.  Easier just to pass judgment.

 

 

 

Systemic Describes ME/CFS

Systemic best describes the characteristic of ME/CFS:  the exhaustion, like a lead weight, hits muscles, organs, and brain creating an overall resistance to movement.  Physical energy is engaged in a battle against spirit.

Two weeks ago, I attended wedding preparations and celebrations, babysat my five-year-old granddaughter, and felt like I was finally progressing beyond this disease.  Optimism convinced me that it was time to start exercising more, to set a routine of rising early, to begin regaining the pattern of normal living.  Could it be that I’m actually turning a corner?  I dared to hope.

th-1And, then…WHAM!  Like a balloon deflating, I ran out of steam and the symptoms of ME reared up, mocking my naiveté:  sweats, rapid heart beat, constant fatigue, loss of cognitive functioning, breathing difficulties, headaches, and IBS.

Yesterday, I ignored the symptoms and determined to do something useful,  decided to take the garbage out.  Since Ric was not here, and my walker was in the back of his vehicle, I decided that I could ride the garbage to the dumpster on my mobility scooter.

Proudly, I mounted the beast, adjusted the bag between my legs, and set the speed for 8 km an hour – the park limit.  I made it around the nearest curve when the scooter decided to quit – just coasted to a silent stop.  Luckily, a young woman spotted me and offered a hand.  We pushed it back home, and plugged in the charger, hoping that was the problem, but then a strange noise started to emit from the speakers and neither of us knew what to do.

Another neighbour responded to the turmoil by offering to get her husband and running the garbage for me.  I felt so humiliated.  My efforts had backfired – instead of helping, I had only managed to be a nuisance.

Done in, I returned to bed, resigned.  It could have been much worse, I realized.  I might have made it across the park before the scooter died, and would have been stranded, unable to get back home.

I have limits, I reminded myself, flashing back to a conversation I’d had with my doctor over a year ago.  The limitations are real.

So today, I will once again cull back my expectations, shelve the self-improvement goals, and fly the white flag of surrender.  ME has won this round.

th-2I haven’t given up, though.  ME/CFS may be systemic, but it’s not constant.  There will be another reprieve, and when it comes, I’ll be ready – spirit armed with ambition.

ME/CFS and To-do Lists

To-do list:

  • write
  • publish a blog post
  • shower and dress
  • strip the bed and remake
  • vacuum and dust bedroom
  • put away groceries from yesterday
  • prep veggies for cooking
  • make vegetable curry
  • make red lentil kale soup
  • make spicy tomato chick pea soup
  • put away clothes from laundry

Reality:th-1

  • slept late
  • wrote and published blog post
  • made a smoothie
  • rested
  • showered and got dressed
  • rested
  • pulled out ingredients for vegetable curry, realized I was missing curry powder
  • went to store to get curry powder
  • napped
  • prepped 1/2 veggies for curry
  • rested
  • prepped remainder of veggies
  • rested
  • put on rice cooker
  • started cooking curry dish
  • rested
  • ate dinner
  • rested
  • cleaned up dinner
  • rested
  • hubby made campfire – sat out for a bit
  • went to bed for night

Next to-do list:th-2

  • write
  • publish a blog post
  • shower and dress
  • strip the bed and remake
  • vacuum and dust bedroom
  • put away groceries from yesterday
  • prep veggies for cooking
  • make vegetable curry
  • make red lentil kale soup
  • make spicy tomato chick pea soup
  • put away clothes from laundry

When living with chronic illness, some to-do lists take a while.  My doctor calls it pacing.

 

 

 

 

 

Illness is Loss: Encouragement Needed

Frankenstein legs, I call them, these long, slender appendages once a treasured asset, now stiff and unpredictable.

Hunchbacked is my stance thanks to weakened back muscles.

Cruella de Vil has nothing on me, my formerly auburn waves salt and pepper with a shock of white at the front.

And when I speak there is hesitation and frustration as the words combat confusion and fog to find expression.

th-7I think back to a time, post divorce, when I was fit and thin and full of energy.  I remember how men held doors open for me, and women smiled easily.  I looked and felt like I could do anything, and life was limitless.

Today, having forgotten to bring along my walker, I stumbled through the mall, relying on rails and walls for support.  People moved out of my way in large, sweeping arcs, disdain on their faces.  Did they think I was drunk?  Crazed, perhaps?  I tried to smile through my discomfort, no doubt more grimace than welcome.  I’ve become a freak.

“I hate to go out in public,” my friend who is battling cancer told me yesterday.  “I am afraid of what people will say to me.”

It is obvious that she is unwell – her head wrapped in a scarf to cover hair loss, her body emaciated from brutal treatments and accompanying nausea.  My illness is not that apparent – invisible they call it.  Some even think it’s ‘made up’, although a recent news report indicates that over 1/2 a million people in Canada have been diagnosed with ME/CFS.  Some days, I even look normal.  No one would guess.

th-5Everything changed for me in 2014.  Almost overnight, I lost my ability to work and care for my home.  Vitality gone, each day became a challenge just to eat and dress myself.  Some days the most I could manage was brushing my teeth.  Two years I spent primarily in bed.  Trips to the doctor would wipe me out for weeks.

Slowly, imperceptibly, I improved.  I could sit up longer.  I could tolerate t.v.  Visits from friends didn’t tire me as much.  I started to go out.  Now that we are living in smaller quarters, I can do a bit of housework, and some days, even cook.  Today I went to the mall for the first time in years.

One might argue that I should be proud of myself, that I have made progress and I’m doing well, but for some reason, the reality of my situation was less horrific when I was sicker.  I am by no means cured, but I am better, and it seems the more that I can do, the more I am aware of what I can’t do and the vastness between me and the hale seems even greater – if that makes any sense.

I caught my image in a mirror today and what I saw shocked me – a monster was looking back.

th-6Yesterday, I wrote about needs and relationship, and mentioned that my therapist suggests my greatest need is for others to see my awesomeness and not my disease.  I feel that now more than ever.  I need to be able to see myself as more than ME, and it will require the help of others.

If you know someone who is suffering, from visible or invisible illness, please remind them of their awesomeness.  Do it for me.  Help us feel human again.

 

A Glimmer of Hope

“Was I right about the doctor?”  the middle-aged receptionist asked cheerfully as I emerged from the examination room and waited for my next appointment.

“He’s very good,” I agreed.  I had hesitated to see one more specialist after a history of dead ends trying to get a diagnosis for what was clearly something wrong with my body.  I shared my concerns when she called to set up the appointment, and she reassured me this doctor was different:  caring and thorough.  He was both things.

“I know what you mean, though, about being frustrated with doctors.”

“I have been trying to explain it to my husband,”  I told her.  “It’s different for women than men.  I was told by one doctor that I was just oversensitive and by another that there was nothing wrong me, just because he couldn’t find anything.  It’s humiliating.”

A woman in a nearby examination room stuck her head out.  Roughly my age, she nodded in encouragement.

“I really saw it when my husband got ill.  Doctors were all over him, ordering tests, checking up on him with follow ups.  No one questioned his concerns.  We women are not taken seriously.”

The examination room lady gave me a thumbs up.

“Well, this guy is different,” the receptionist repeated.  “He’ll get to the bottom of what’s going on.”

I hope so, I thought to myself all the way home.  I could use some light at the end of this tunnel.

(Image: startsat60.com)

Pain

Pain.th-3

I push against it. Challenge it, like a warrior intent on proving that I am indestructible, unwilling to flinch.

 If I ignore it, I tell myself, then it will cease to have power over me.

Except, bit by bit it gnaws at my edges, tearing me down and just as I’m about to succumb to its grip, I have a moment of clarity…

…recognize the invitation…

…that surrender is the gift, and…

…that the pain is passage, and…th-5

…in letting go..

…I absolve myself…

…of the need…

 

 

Staging Challenges

Wedged between one satisfactorily completed task and an overload of unfinished chores, I am a mess.

We have decided to sell the house, and on the advice of stagers, are tearing everything apart, sorting into three piles:  garbage, Goodwill, and keep/store.  Purging, we are discovering, is exhausting.

In order to do some touch up paint jobs, Ric left me at the RV alone last week.  We’ve parked it at the lake for the summer season, and the solitude is welcoming.  Except that I woke up with severe pain in my left jaw on Monday morning, and after getting up and having something to eat, I started to feel very peculiar – sweating, nausea, and a strange dizziness that felt like the ground was sucking me in.  I called 9-1-1.  Crisis passed, and remaining a mystery (heart checked out okay), I returned home at the  doctor’s suggestion.

Sunday, the kids came by to help out.  At one point, I brought out freezies, and two bites into mine realized I was having a reaction – the top of my mouth felt like it was blistering.  I’d only had this reaction once before and it was while eating Welchade fruit snacks.

“These are Welchade freezies,” my husband pointed out.  Apparently Welchade uses an ingredient that I cannot tolerate.

Then yesterday, while scrubbing the bathroom walls, I felt and heard three pops in my left side.  Ric helped me to the bed and we immediately applied heat, but the damage was done.

Between the pain in my side, the lingering sores in my mouth, and an insect bite that wouldn’t stop itching all night, I have had little sleep.

We have two more days to get this house packed up before the movers come in and then the stagers and it’s listed.

No wonder I’m a mess.

(Image: psychicjessicac.com)

 

 

On Acceptance and Illness

“Grandma, when will you be better?”

It is 5:00 on a school morning, and I am sitting at my granddaughter’s bedside nursing her through a sore tummy.

“Not sure, Honey.”

“Oh,” she shrugs.  She is four and has never known me any other way.

Later, we snuggle up and watch Moana. 

“You are just like the Grandma in the movie,” she tells me.

“Because I have white hair?”

“Yes, and …..”  it is at the part where Moana’s dancing Grandmother says she’s the village crazy lady…” that too.  Will you come back as a stingray when you die?”

“More likely a bird,”  I tell her.

I love that while she is not afraid to ask questions, she is also accepting of the answers.

“I miss you,”  my mother tells me every time she talks to me.

“It’s like we’ve lost our Mom,”  my daughters remind me.

I know my husband pines for the old me, too.  Hell, I am in agreement with them all, but dwelling on the loss is counterproductive to healing.

ME/CFS is a bit like having the flu, only those days where you begin to feel better are not harbingers of a return to normalcy,  they are tricksters, stirring up false hope and an overuse of energy.  A crash is certain to follow.

Apart from the daily physical challenges, I taunt myself with a barrage of ‘shoulds’  illiciting emotional turmoil.th-1.jpg

I need to borrow a page from my granddaughter’s life book:  to know that I (Grandma) am sick and have limitations, and love me anyway.  She has no expectations for me to be any other way than how I am.  Imagine being that emotionally mature, or should I say, innocent.

Acceptance says:  this is my life, this is who I am.  Wisdom reminds me that life is seldom static, so chances are that things will change again.  Openness will help me transition from one stage of life into another.  It also keeps possibility alive.

Without acceptance, I live in a constant state of never being enough.  I think I should do more for my children, be a better daughter, push myself for my husband’s sake, accomplish more.  In other words, I am constantly facing a mountain of insurmountable  goals.  th-2

Acceptance would gift me with the power of no:  the ability to recognize what I am and am not capable of, and the courage to set realistic boundaries.  Acceptance seeks to understand without judgment.  It is a shift in perspective.

Imagine being able to find joy in the moment, without the cloud of self-chastisement.

I believe acceptance can give me that.

“Grandma, I want to come sleepover at your house,”  my granddaughter tells me as I leave.

th-3I hug her and tell her: “Soon”, and marvel that she wants to spend time with a doddery old woman like me, and think:

If a four-year-old can accept me the way I am, then surely I can too.