Tag: Health

• A Glimmer of Hope

  Posted at 1:56 am by V.J. Knutson, on July 21, 2017

  

  “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)

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  Posted in disability, Health, ME/CFS, nonfiction | 0 Comments | Tagged doctors, Health, hope, women's health

• RV-Able: Tips for the Road

  Posted at 5:33 pm by V.J. Knutson, on February 15, 2017

  Travelling South in a forty-foot vehicle is not akin to driving in a car.  Apart from the obvious size difference, there are other factors to take into consideration.

  For one, the dashboard heater has a lot bigger job to do.  If you are like me, the idea of heading into warmer temperatures makes me want to wantonly discard my winter attire.  (My husband usually flies south in shorts and sandals.)  I also don’t like to get cold, and as it was days before we reached a warmer climate, I was glad I wore layers and took extra blankets.  In fact, as weather can be unpredictable even in the south, I have not regretted any of the warm clothing I hauled along, including fleece lined pants, and merino wool tops.  I did, however, opt to wear layers instead of lugging boots and a winter coat. 

  Also, the windshield on the RV is much larger than a car, and does not have visors.  My husband was smart enough to bring sunglasses, but I relied solely on my transitions.  Did you know transitions don’t always change when there is a window between you and the sun?  My sunhat was safely packed away in storage – a definite mistake on my part.

  One great benefit of the RV is that there a washroom on board.  For a frequent user like me, that was a Godsend.  We kept a jug of water behind the toilet so that flushing wasn’t an issue while en route.

  What I wish I had done was to pack better snacks – maybe pre-made sandwiches.  The U.S. has wonderful rest stops along the way, but these do not include food courts like the road side service centers in Canada.  Vending food is all that is offered, and since I already had lots of junk food on board, that was not helpful.  I will plan better next time – eating is an important part of my health regime, and by the time we reached our first destination, I was feeling really sluggish, with a complaining gut.

  The other thing I failed to do was to stick to my medications routine.   I completely missed taking one round, which also contributed to feeling unwell at the end of the day.

  Travelling is an adventure, however; illness does not take a vacation – in a case like mine, where health is the primary concern, it is important to maintain certain routines.

  We are learning as we go along, and as my husband always like to say:  “Tomorrow we’ll be perfect!”

   

   

   

   

  Posted in disability, ME/CFS, nonfiction, RV-Able, travel | 0 Comments | Tagged Health, RVing, tips, travel

• Dreams Compensate

  Posted at 2:06 am by V.J. Knutson, on January 15, 2017

  

  In dreams, I walk, no concern for the distance.  I ride a bicycle, or drive a car.  I move with purpose and direction…

  …until lucidity snaps me back to reality and then I plummet into the despair of knowing these are no longer options for me.

  In dreams, I confront life’s issues, face my foes, am determined…

  …and then I awaken, and realize that my well-being is dependent on the charity of others, and that I am in no position to be rocking any boats, especially the ones keeping me afloat… and that in sickness, my emotional state is compromised.

  In dreams, I teach, am engaged in life, and financially rewarded.  I am alive with the adrenaline of deadlines, lessons to be prepared, classes to get to…

  …and then I awaken and realize that I am a student again, enrolled in a course I would never have signed up for, unprepared for the tests thrown at me daily: a monetary burden.

  In slumber, I am everything I used to be – a compensation for this waking reality called ME/CFS.

  Is it any wonder I prefer sleep?

  (Photo from private collection)

  Posted in Chronic Illnes, disability, dreams, ME/CFS, nonfiction, Uncategorized | 3 Comments | Tagged dreams, grief, Health, loss, ME/CFS

• Tired of Waiting

  Posted at 2:51 pm by V.J. Knutson, on September 22, 2016

  I’ve been making a conscientious effort to break free from the unhealthy patterns that hold me back in life:  an overly inflated sense of responsibility/martyr complex, lack of personal boundaries, and little self worth. While change is never easy, especially when it involves looking at one’s self objectively, the awareness has been coming step by step – with the help of amazing therapist, naturally.

   

  Recently, I realized that even though I am ill, and have limited energy to apply to daily living, I reserve what I do have for my children, waiting for them to tell me their needs before determining what I have left over.  Now, my children are all adults with children of their own, so what they require from me is usually child care, and what grandmother does not want to do that?  Except looking after a toddler or a baby is quite honestly a real drain on my reserves, and means I have little left for self-care or spending time with my husband.  

  It is really difficult to confess that this is an issue.  I love my granddaughters and want to spend time with them.  What I am afraid to relate to my children (and myself) is that a visit from them is about all I can manage and that an overnight commitment can set me back for days.  It sounds perfectly logical on paper, so why am I not able to express and act on it?

  Waiting has been a defining theme in my life, whether it is serving others ahead of myself, putting my life on hold until something else happens, or “weighting” (a play on the word).  I am sure all definitions of this theme relate back to my opening statement.  Putting myself first feels wrong, selfish, and even unwomanly.  It also means risking the loss of others – perhaps not rationally, but to my inner child, it does.

  “Tell yourself it is self-preservation and not selfishness,” a friend tells me.  She is amazing at setting boundaries, also lives with a chronic illness, and has no children.

  She doesn’t understand, I tell myself, although I like the idea of self-preservation.

  Here’s the thing:  it is not my children’s responsibility to make sure I take care of myself.  They will naturally ask for help as long as it is available to them.  In fact, they are relying on my personal boundaries to determine when enough is enough.   No boundaries = no win for anyone.  I feel guilty saying no to them, but then they feel guilty when I overextend myself and slip backwards.

  If I am going to change this cycle I have to be willing to take the risk and say ‘no’.  Even typing this makes me feel sick to my stomach.  What if my daughters decide that they want nothing more to do with me if I can’t babysit? (See how irrational fear is!)

  The thought of it makes me want to eat something, fast: shove those emotions back down before they become real.  Egads, more “weighting”!

  Sigh!  If change wasn’t so worth it we’d all be stuck in our own filth piles.  Oh, the work I have left to do….

   

  Posted in aging, children, family, grandparenting, Health, humour | 0 Comments | Tagged boundaries, breaking patterns, change, Health, ME/CFS, psychology, self-help

• Tough Stuff

  Posted at 12:09 am by V.J. Knutson, on August 31, 2016

  Minutes after my first husband and I were settling into our honeymoon suite, I got a call from my father advising me that my oldest sister had gone from the wedding reception to emergency.

  “I think you better come,” he told me solemnly.  So we packed up and headed back.

  I had known that my sister, who had a congenital heart problem all her life, had been particularly tired leading up to the big day.  Her eyes had appeared heavily lidded and she’d had ugly open sores on her face and chest. 

  By the time we reached the hospital, the family had already met with the medical team, and received the diagnosis: acute leukemia.  Prognosis:  she had one month to live, a year if she had any fight in her.  She was not yet thirty.

  It was a stormy February when we buried my sister, and despite the cold and treacherous weather conditions, many came out to pay their respects and talk about her fighting spirit.  She had survived for fourteen years.

  Recently, I got a call from the home where my eighty-nine-year-old mother is residing.  She had only been released from hospital, where she was treated for pneumonia, for one day and they were sending her back because her blood pressure was topping at 282/97.  That night she was released from the hospital and everything was back to normal.

  “How did she not have a stroke?” a nurse friend of mine asked.

  “I don’t know,” was my honest response.  “Guess the women in my family are just made of tough stuff.”

  Oh, and she did tell me that she wants to live long enough to see her youngest great-granddaughter play with her older sister.  The baby is now three months.

  Posted in aging, family, Health, inspiration | 2 Comments | Tagged grit, Health, hope, spirit, survival

• “Are You Brother and Sister?”

  Posted at 1:04 pm by V.J. Knutson, on August 21, 2016

  “Are you guys brother and sister?”  the question came from our soon-to-be five-year-old granddaughter.  Dropped off by her mother for an overnight stay, we had a day of cousins and uncles and aunts, and of course, Grandma and Grandpa. I brushed off her comment with a:  “No, we’re married”, but the innocent observation shook me.

  This is the kid that at seven months of age could crawl to the center of a room, pick up an object and stand with it; who even before she learned to convert that movement into walking, could express herself in words.  Seldom frustrated, she has demonstrated perseverance time and again in learning new tasks, and has a remarkable level of empathy for those around her.  On her last visit, when I stated that I was too tired to read another book, she read it to me (with a little help for words she hadn’t seen before).  She has taught herself to swim without a life-jacket, and now jumps off the diving board.  She is currently trying to learn to dive.

  She is an astute observer of life – raised by my daughter without a father on the scene – and is not afraid to question the world around her.  I remember picking her up for a sleepover when she was just eighteen months old.  It was the dead of winter and as we drove along the highway, she exclaimed:  “Grandma, look at the trees!  The leaves fell off; we need to fix them!”

  So what makes her think Grandma and Grandpa are siblings rather than a married couple? Could it be the fact that we spend much of our day in separate rooms, with our own personal screens?  Or that Grandma oversees most of her care when she visits?  Or is she just commenting on what has sadly become our reality?

  We are, for all intents and purposes, like brother and sister, sadly.  Years of illness and injuries have created physical space between us, and the desire to find common interests waned with time.  We go about our daily lives, with spotty conversations, some shared meal times, and the obligatory nighttime peck.

  So the comment of an almost five-year-old has got me thinking – next week is our anniversary – what can I do to liven up this relationship?  After all, we have the responsibility of modeling for the generations that follow what mature love looks like – shouldn’t it have a little more spice?

  Posted in children, family, grandparenting, living with disability, marriage, nonfiction, relationship | 0 Comments | Tagged aging, child's view, Health, humour, marriage, relationship

• A Case for Noncompliance

  Posted at 2:15 pm by V.J. Knutson, on August 11, 2016

  I heard the ping of the text while I was in the doctor’s office – assumed it was a response from the message I had sent out earlier to my daughters – and chose to ignore it.  I did the same when my phone vibrated a few seconds later to let me know someone was calling.  My children, after all, have become accustomed to instant responses from me since I had to quit working two and a half years ago.

  After the appointment, I hobbled (with the aid of my walker) to the elevator and rode down one floor to the exit where Ric was to be waiting for me.  No sign of our vehicle prompted me to pull out my phone to check the time.  That’s when I saw the text:

  I’m at the hospital.  Broke my foot.  Waiting for a cast.

  The call had been from Ric, too.  “What?” I said out loud.  I tried to call him back.  No answer. My mind tried to make sense of what was happening.

  Ric had gone out-of-town that morning, and was going to pick me up on the way back.  Was he back in London, or still away?  The appendage he had injured two days before was his driving foot – how was he going to get home?

  I texted him back:  Want me to come to the hospital?

  Still no response.

  I called a cab and headed home.

  Ric showed up a while later with an air cast in hand.

  “I had to drive home somehow,” he explained.  He placed the cast on his foot and we were officially grounded once again.

  Just weeks ago he couldn’t drive because of a triple bypass surgery.  We’d had to hire extra help then and relied on others to get us to appointments.  The day before he injured his foot, we had informed the company we were once again independent.  Only now we weren’t.

  Ric didn’t leave the house for the next few days.  We both felt numb.  How many things can a man endure?  First it was Stage III cancer, then a torn quad tendon that required surgery (seven in all as infection set in), then my illness, two heart attacks and subsequent bypass, and now this.

  “I’m going to tell the doc I need a driving cast,” he told me the morning of his follow-up examination.  “If not, I’m going to rig my own.”

  I felt my blood pressure rise – my husband suffers from acute non-compliance syndrome – but I didn’t say anything.

  He came home from the appointment with a slipper cast.

  “What did the doctor say?”

  “I told him I had to be able to drive, so he changed the cast.  Said he didn’t want to know about me driving.”

  A few mornings later, I saw the cast and Ric’s solo canvas shoe on the table.  Ric had gone to pick up groceries.  I greeted him at the door.

  “So now your slippers are a cast?”  I said looking at the sagging moccasins on his feet.

  He laughed it off and said he hadn’t noticed.  The cast sat on the table for most of the day.

  I might have been really angry with him, but here’s the thing:  in light of all he has gone through, what is one little fracture?  The man has been inundated by medical procedures, spends the better part of his week at doctor appointments, has been in pain for as long as I’ve known him, so really, I can’t blame him.

  As I mentioned before, compliance is not in his nature.  So his foot doesn’t heal properly.  With his gait, who’s to notice?

  What I would like to know, however; is how to get this target removed from his back.

  

   

   

  Posted in aging, Health, humour, nonfiction, relationship | 0 Comments | Tagged change, Health, noncompliance, recovery, wellness

• Measured by Costco

  Posted at 10:32 pm by V.J. Knutson, on July 15, 2016

  Living with ME/CFS is often a matter of trial and error – the line between what the body is capable of and overexertion is never quite definable, except in the aftermath. 

  Yesterday, I accompanied my daughter to Costco, which was teeming with cars and people.  We found a parking spot close to the entrance, and I grabbed a shopping cart to lean on until I got inside and found a ride-on cart.  The day was steaming hot, the thick air burdening my lungs, but I persevered.  Baby and I rode in a mobility cart and followed Mom through the store.  It was only as I made my way across the parking lot, back to the car that I realized I had overextended myself. I spent the rest of the day and all last night reeling from the repercussions, my husband angry with me that I would take such a risk, and me deflated that my progress is thwarted so easily.

  Costco has come to represent a measure of this disease.  I was in the parking lot the day I got the call from the doctor telling me the diagnosis.  We talked for an hour and half that day as she explained what my body was going through and how it would manifest and that I should avoid places like the one I was about to enter.  Much of what she said that day would be lost in the horror of absorbing the news, but I remember it as the onset of change and a downward spiral.

  In defiance, I tried to make the trip again, telling myself that if I took a ride-on cart, I would be fine, but I underestimated the effect of the crowds, the lights, the overwhelming visual stimulation, and fled within minutes of arriving.

  I would try again months later, only to leave in tears, as the store demanded more from me than my nervous system could handle.

  Since then I’ve been working with a doctor of Functional Medicine, and bit by bit I feel as if the shattered me is mending and I am gaining the stability I need to be back in the world, and so I tried again, a few weeks ago with my PSW.  There were no mobility vehicles available that day, and since I had failed to bring my wheelchair, the effort was a failure; so when my daughter suggests a trip yesterday, I jumped on it.

  And we did it!  I drove that buggy all over the store, focused more on the baby in the cart ahead of me, and less on the merchandise and crowds, and apart from the overwhelming sounds of the place, I managed to stay intact.

  It is progress, for sure.

  Three months to a year, is the prognosis of this new doctor.  It has been one month since we started the new treatment regime and already I am feeling better.  Now all I have to do, is learn patience.

  “I’m like a racehorse at the gate,” I tell him.  “Just can’t wait to get on with life.”

   

  Posted in Chronic Illnes, disability, Health, living with disability, ME/CFS | 3 Comments | Tagged Functional Medicine, healing, Health, hope, ME/CFS, recovery

• Contemplating Wellness

  Posted at 3:07 pm by V.J. Knutson, on June 4, 2016

  “Four treatments should about do it,” the doctor advised while discussing approaches to tackling ME/CFS, which has kept me homebound for the past two years. “Once your body is stronger, we can tackle the Lyme disease.” 

  Wednesday marked the final of four IV Ozone/Ultra-violet light/Glutathione treatments.  At the beginning of each visit, the patient is asked to complete a self-assessment questionnaire rating different symptoms – frequency and intensity.  When I first sought help from this doctor, I scored in the 130’s.  On this last visit my score was 77.  I predict it will be lower when we meet again in two weeks.

  “You’ve had stomach problems for as long as I’ve known you,” my husband confessed recently when I commented on how much that has changed.  “That is definitely an improvement.”

  I am feeling stronger also, and notice that I have extended accessible energy.  I even went to the Farmer’s Market this week and bought groceries – something that I haven’t been able to do in years.  I still rode the store’s motorized cart, but in the past, if I could get there, I would just target certain aisles and be done.  This time I was able to browse the whole store.  I felt like a normal human being for once.

  Yesterday, I climbed the stairs twice to fetch food from the downstairs freezer.  It may not sound like much, but that is a huge feat.  Climbing any stairs has been an issue for some time.  Last night, when my muscles protested – tightening and aching – I couldn’t help but wonder if this was more in response to me having worked the muscles than the normal anaerobic reaction of ME.

  “I’m not all the way there yet,” I told my husband as we retired for the night. “But I’m feeling hopeful.”

  “I hope you didn’t expect total recovery this fast,” he cautioned.

  “No…” I’m not sure what I expected.  I hoped for a return to health, naturally, but I suppose that may be too optimistic.  “I may never be back to where I was, I guess, but it would be nice to be able to do more, even if I still have to monitor my activity.”

  Lying awake contemplating the restrictions that illness has imposed upon my life and reflecting back to a time when health was not an issue, I realized that compromise is not a bad goal to set.  For as long as I can remember, I have pushed myself, tried to be all things for all people, worked long hours and negated personal needs – none of it an ideal worth striving for.

  Should I be blessed with wellness again, I told myself; I will live a more measured existence, avoiding the complications of overcommitment and honouring my needs:  body, mind and spirit.

  Balance, I decided, will be my mantra.

  (Quotation from Rumi)

  Posted in Chronic Illnes, disability, Health, living with disability, ME/CFS | 1 Comment | Tagged Alternative medicine, Functional Medicine, healing, Health, hope, nonfiction, Ozonotherapy, wellness

• Tightrope Walking

  Posted at 3:52 pm by V.J. Knutson, on May 13, 2016

  While my husband remains in the Cardiac Surgery Recovery Unit (CSRU), I am struggling to maintain some sort of equilibrium so that my own health (ME/CFS) does not worsen.  It is a tightrope walk, for sure. 

  The day of surgery, I went to the hospital twice, both for extended periods of time.  When I woke up yesterday, my left foot was in spasm.  My daughter took me to see Ric, in a wheelchair, and offered to take me to get some groceries, but I knew I wouldn’t be able to walk even a short distance.  Back at home, the cramps had spread to the whole leg and I could feel the familiar swelling of my lymph nodes in the groin – a sure sign I was pushing the limits.

  We all have times in our lives when we need to reach deep into our well of resources and pull out that extra bit of energy to get through difficulties, however; for me – already at bottom – there is nothing but a dry gravel bed.

  Seeing him in that post-operative state with so many tubes and hook-ups, swollen and clearly in pain, also pushed me overboard.  My daughter was shaken as well. ” It is, after all, major surgery,” I tried to reassure us both.

  After a short nap, I called the hospital for an update.  They put Ric on the phone, but he was in obvious distress and did not want to talk.  Worry escalated. They would not be sending him back to the floor as previously stated.

  “He is getting one-on-one nursing care; this is your time to rest up,” a nurse friend counselled.  “Likely he is so drugged that he won’t remember much of this time.”

  I found some comfort in her words. 

  Shortly after, a friend arrived and set about cooking me supper.  Both legs were refusing to work by now, and my right arm was joining in the protest.  Lying flat on my back seemed the only option.  I was so beside myself, I didn’t know if I was hungry, just needed rest, or should break down and cry.

  It is amazing how much the kindness of others can boost spirits.  The dinner tasted like manna from heaven, and the cheery banter lightened my mood.

  At 8:00 my phone read:  “Caller ID blocked”.  I answered warily.

  “Hello Love,” my husband’s voice, hoarse and crackling.  “Just wanted to wish you a goodnight.”

  Words caught in my throat.  “This is the best news I’ve had all day!”

  “I’ve just bought myself some longevity,” he said.  “Didn’t have it before, but I will now.”

  Thank God!

   

  Posted in aging, Chronic Illnes, disability, Health, marriage, nonfiction, relationship | 1 Comment | Tagged aging, balance, healing, Health, heart attack, heart surgery, hope, kindness, life, nonfiction, recovery, self care

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  V.J. Knutson

  Mother, grandmother, daughter, wife, sister, friend. Former teacher of children with special needs, English, and French. Currently experiencing life through the filter of ME/CFS. Aspiring writer, avid reader, lover of life - not afraid to explore all emotions in order to fuel the creative process. Words have been and always will be a lifeline.

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