ELAINE QUEHL, Quilt Artist, Teacher, Dyer, Designer

Wednesday, January 30, 2019

Good Days and Bad Days

I've been quiet this month, haven't I? I try to keep it positive here on my blog, but the truth is that the last three years have been a struggle at times. Yes, in many ways my health is better because I made a lifestyle change to eat better and exercise more. This resulted in a loss of 30 lbs in 2017 that I continue to maintain. My blood pressure and blood sugar is under control with diet and exercise. This has meant less weight on my joints too (I have arthritis). Yes I LOOK better, but don't necessarily feel better. Three years ago I started feeling "not myself", and it caused my anxiety to soar. I had some disconcerting symptoms: occasional feelings of movement, head feeling strange, brain fog, visual symptoms (like the world looking fuzzy and skewed when I walked outside and in large open spaces like shopping malls and grocery stores), movement and patterning around me made me feel a bit motion sick, too much time on the computer or smart phone made me dizzy. Too much stimulation (crowds and no down time) exhausted me. This only added to my anxiety. I had periods where I would feel normal, but always this feeling would come back.  How do you explain to your doctor that "my head feels strange when I back out of my driveway"? I felt like I was going crazy at times. And it got worse this past year. Travelling became very stressful for me. I lost my confidence in my health and ability to cope. My doctor suspected multiple sclerosis and I went through all that testing last summer. They decided that, although I had neurological symptoms, MS was not the cause. We thought it might be menopause as my anxiety was sky high and the brain fog very disconcerting. We tried hormone replacement therapy. It didn't help.

We now have a diagnosis: left vestibular hypofunction! I never made the connection of my brain fog and visual symptoms to my inner ear!! In October I mentioned my symptoms to my otolaryngologist (who I am followed by twice yearly). In 1983 I was diagnosed with a rare middle ear tumour. A panel of pathologists deemed it malignant, or at least "invasive". I went for a second surgery in 1984 to have a complete removal. I woke up with the room spinning for a couple of days and it took some time to get my balance back. Most people find dizziness and imbalance disconcerting. For me, it takes me back to waking up in that hospital room!! My otolaryngologist ordered a VHIT (video head impulse test). This test determines if there is a loss of function in your inner ear balance function. If there is, your eyes will make compensating movements to help your body figure out where you are in space. The eyes and brain take over a lot more of the balance function when the ear is functioning below par. This explains the brain fog and visual symptoms! The test was positive; I was diagnosed with a "left vestibular hypofunction". Now I wait for a follow-up appointment with my otolaryngologist on February 25. I've been doing a lot of reading and research and it seems that the treatment for this problem is vestibular physiotherapy to help adapt to the hypofunction. The test results also indicate that some of the hypofunction is likely the result of my visual impairment (severe astigmatism with prisms in my glasses). So I may end up seeing a vision specialist as well.

As a result of the diagnosis I cancelled my booth at Quilt Canada for June 2019. Sorry to disappoint, but I am going to focus on my commission totally over the winter without the extra stress and distraction of dyeing hundreds of meters of fabric for my booth. I have some lovely days of teaching booked in Nova Scotia in May. I know this group and I know they will be understanding when I need to have quiet evenings so I will be functional during the workshop days. So I plan to finish my commission, go teach in Nova Scotia and then RELAX. Yes, I have a vestibular disorder, but I have been fortunate that I don't have the spinning/throwing up kind of vertigo (and hope I won't).

Oh I should also mention that before I got the diagnosis, I got a prescription for cbd oil. It helped immensely with the anxiety, but when I got to a dose that helped with that my dizziness got worse. I've stopped using it.

Thank you to those of you who listened when I felt like I was sounding like a hypochondriac after my latest symptoms and tests. Most of you had no idea I'm sure, and many have problems of their own. It's a reminder to be kind as we have no idea what battles others are facing. Many illnesses are invisible. I am also learning that how we respond to and think about our illness can make it worse than it actually is. With meditation I am working on this.

I have also pulled back from teaching at Haliburton School of Art + Design this summer. While I enjoy teaching there, it requires a lot of effort and energy.

Hey, I can't be that bad, can I? I drove 3600 km on a teaching trip in October/November and made it, although I felt "off" a lot of the time. Continuing to teach on a reduced schedule, with lots of rest in the evenings and between bookings, is the best thing for me and my mental health. I expect to be at Quilt Canada in June in a more relaxed capacity so am happy to meet up with friends, and if you need fabric, I'm sure we can arrange it. 

The commission is coming along well and I will be posting with an update soon.

In the mean time, here are photos from our Christmas visit with my 94 year old Dad, who we found sporting a handsome mustache for the first time in his life! That's my sister to the right of me.

This is my husband Pete to the left of me.

In addition to working on the commission, I've been learning to knit. After knitting a few dishcloths just to get a bit of practice, I decided to make a scarf.

A little bit of wonkiness. I know what happened and will avoid it in my next piece.

I decided I would be more likely to wear a cowl than a scarf so stopped the scarf short and joined the edges.

I've had a lot of compliments on this cowl, and it doesn't really matter that it isn't perfect.

I am determined to get to the point where I can knit a pair of socks. This pattern I picked up at our local knitting and spinning store makes sense. It is by Donna Snider of Roots and Rain Yarn (oh my her hand-dyed yarn is amazing).

Practicing doing the cabling on the sock cuff. Nearly ready ...

But got distracted by this gorgeous Japanese yarn (also from Wabi Sabi) and thought I might need a cowl with some red in it to go with my red sweaters.

The weather outside has been frightful, so it is a great time to hibernate. Hope you are safe and warm and well wherever you are!


  1. Elaine, I read with great interest your first 2019 blog post. I knew you were dealing with some health issues and trying to get a diagnosis for your mysterious symptoms. The testing and waiting and wondering obviously have been extremely stressful for you. Your last long teaching trip had me sympathetic for such a heavy schedule. Having recently had a health scare over the possibility of losing my L index finger makes me even more concerned for my dear friends like you! I send loving good wishes for the rest and relaxation that will help you. I know those fur babies will do all they can to comfort you!
    I love the Mary Oliver poem you posted and want you to see this precious illustration of it I recently found. And you may remember my fondness for rabbits (my great-grands call me Grandbunny). https://www.in-my-nature.com/blog/2019/1/17/poetry I have enjoyed following her since I found her.

    1. Thank you for your supportive post and your loving wishes Martha. I think the biggest stress was wondering if this is real (is there something really wrong with me?) or has my anxiety peaked so bad that I am imagining this? About that long teaching trip: I was very careful to book ample time in between groups so I could rest. I was mostly OK except after the retreat I taught at. I was there for 3 days, up very early, and there were always activities in the evening. So there was little alone and quiet time and I didn't get enough sleep. I crashed when I got to Laurie Swim's house. She was so understanding because she's a teacher too. I was shocked to see how bad the effects of the cat bite were! I'm glad you are on the mend. That is indeed a precious illustration of Mary Oliver's poem, thank you Grandbunny 😊

  2. Hi Elaine. I am so sorry to hear all of this! I knew that you have had SOME probs but this is a lot to deal with. I think that you are VERY wise to be backing off some of your many obligations. I hope that you'll be kinder to yourself and that you'll stick to your guns and do the RIGHT thing(s) for yourself. You are a young woman with so much to offer and I am VERY glad that you are working on being able to stick around for a LONG time and continuing to delight us all with your splendid work! Well done you. Take care Elaine and enjoy your commission and the teaching you are choosing to do. ❤️😛

    1. Thank you Carolynn. I am being VERY kind to myself these days!! Young is a relative term, and illness does not always spare the young. I am very lucky to have had 35 good years after my ear tumour episode in my 20's, and I hope to have 35 more (I'm 57 now). Hey, my father is 94 so who knows? Really enjoying the quiet time this winter and have to make an effort to not become a recluse ;-)

      Thank you for your good wishes.

  3. I’m amazed that you’ve been able to do what you do! You’ve been coping with a lot. I’ve managed a few smaller scale things with all that I’ve got going on so I appreciate your difficulty. I hope the physiotherapy will help you. Iv3 also just had MS ruled out. I always wanted to do more workshop but couldn’t even make it passed a few. Traveling is difficult and I for sure don’t have the stamina anymore. Funny, it must come with chronic illnesses because I suffer the anxiety too. I’ve been prescribed the cbd oil for pain and neuropathy. Continue to look after yourself and do what you excel at - your artwork. Take care, hugs,

  4. I am pleased that you have a diagnosis at last, and hope that physio and/or other approaches will help you recover; or at least be less symptomatic. What a horrible three years it must have been. I echo the others here and applaud you for taking control of what you can and looking after your needs. I hope you have a speedy recovery and continue to honour yourself.

  5. Elaine Do please take time for yourself. It is good to know what you are dealing with and better yet that something can be done about it!

  6. Wishing you all the best as you heal, Elaine. Your openness is an inspiration for those who live with health challenges just as your creativity and passion for your art has been.

  7. Oh Elaine and I just thought you were looking good! Sorry you are dealing with an inner ear problem I so hope they can help you with that. It seems like you know how to care for yourself so keep it up. Take care.


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