Sunday, 8 November 2015
Story of art, creativity and Addison’s Disease
Art is the creation of a shared space, a new ground on which to meet, a point of
encounter. Creative expression has been an essential part of me since I was a very
young child. Through whole my life, I have explored variety of ways in which art and
creativity invites us to new understanding and meaning. I draw from deep within to
open new windows of perception through my painting.
After graduating from University, I worked as Child Psychologist with children with special needs and their
families in Czech Republic. Later, I lived and worked with adults with learning
disabilities in L'Arche https://www.larchelondon.org.uk Communities in the UK and L'Arche Calgary, Canada.
I really enjoyed
I really enjoyed
participating in art and craft projects with people - encouraging their creativity as well
as using my own creative skills. I was really inspired by the amazing creativity and
artistic expression of people with learning disabilities.
Since becoming a parent of a child with autism, I began a new part of my life journey,
being a parent alongside working in several jobs supporting children and adults with
special needs.
In my art, I express my feelings, thoughts and dreams, transforming my life
experience into a wide variety of colours, shapes and textures. Since my teenage
years, I have painted and drawn to explore the journey of my Christian faith.
After becoming progressively more and more ill for nearly a year, I received a
diagnosis of Addison’s Disease while on holiday abroad in August 2015. This
experience transformed my life in a new way and was reflected in my art and
creative expression. As always, creativity helps me to process thoughts and feelings
– especially the intensity of feelings of coming to terms with having lifelong and life-
threatening illness. I have really appreciated the excellent support from https://www.addisonsdisease.org.uk/what-is-addisons-disease Addisons
Support Self Help groups, these became my lifeline in coming to terms and coping
with the daily challenges of life with Addison’s Disease. I am always happy to share
my art and creativity with others, trusting that the feelings and thought I express
through my art might speak to others.
Here I would like to invite you to see 3 of my paintings that illustrated my Addison’s
journey so far.
1st artwork “Refined hope” I painted on 31st August 2015, after return back to UK
from holiday where my life was saved by the hospital doctor diagnosing Addison’s
and beginning treatment with steroids. I nearly died travelling abroad to visit my
Mum, but it was my Mum who noticed I was suffering from symptoms of Addison’s
Disease, saw I was approaching an Addisonian Crisis and took me to hospital.
Coming back to the UK, I faced the challenge of having my diagnosis recognised
and confirmed by the UK health care system. Painting “Refined hope” brings
together my feelings of surprise of having a new diagnosis and feelings of the search
for a direction for my journey forward. Somehow I felt that part of me died inside, but
in that process, the hope was refined and the new beginning began.
2nd artwork “A sense of place” I painted on 12th September 2015 as I was
was processing my experience of my first initial assessment by a UK endocrinologist,
where I felt not fully listened to and felt that my concerns and questions were not
addressed. Prior to that appointment I gained a confidence and hope that I would
manage my new illness well, but that was broken by the feeling of not being
understood. I painted to express my feeling of confusion and fear about the future,
but also to express my hope and trust that there is a way forward for me. Painting “A
sense of place” meant I was seeking to be deeply rooted in who I was, in my own
identity and in my faith. Through the pain, uncertainty and confusion I opened my
heart to new growth and exploration.
3rd artwork “Journey forward” I painted on 30th October 2015, while spending a day
at the Endocrine Investigation Unit, going through Day Curve test to further clarify my
treatment for the now officially UK confirmed diagnosis of Addison’s Disease. I was happy that the nurse was able to place a cannula into my left arm for the all-day
blood tests, allowing me to use my right hand for painting on my Ipad while at the
hospital. “Journey forward” expresses my new stage of my Addison’s journey, as I
was able to access a second opinion by a different Endocrinologist, an excellent
specialist for Addison’s Disease. Meeting this doctor for an assessment has been a
deeply healing experience for me – finally to be listened to, and to know that my
complex conditions are being taken seriously. I have had Hashimoto’s Autoimunne
Thyroiditis for 32 years of my life already and now adding new diagnosis of
Addison’s Autoimunne Disease made my health more complex. I am so thankful that
I am now able to access excellent care from a specialist in this field. And I have
already begun to improve for the first time in a year – thanks to the adjustment of my
medication during the first assessment by my new Endocrinologist.
And in 2017 I was able to speak to medical students:
Sunday, 1 November 2015
Paintings from hospital
I have been at the hospital for another test, Day Curve, and was happy that nurse managed to put cannula into my left arm to keep my right arm and hand free for painting. So here are some paintings I painted, while sitting all day in a chair at Endocrine Investigation Unit and having my blood taken regularly throughout the day.
Thursday, 29 October 2015
Being thankful
I have not been writing much on here recently as had few weeks with many events. I learnt a lot again and I reflected on my experiences. I painted while at hospital waiting for tests for Myasthenia Gravis. For now it looks like I do not have that diagnosis. I have really very officially confirmed diagnosis of Addison's Disease. And I am very thankful to be now uder the care of excellent Endocrinologist, who really takes into account my complex case and interactions between my Hashimoto's and Addison's Diseases and is watching carefully for me for possible development of other autoimunne diseases, currently suspecting I suffer from Graves Thyroid Eye Disease. I am so very thankful that after so many difficulties and obstacles on the road to recovery I am beginning to improve - thanks to excellent Endocrinologist. I was very stubborn and for weeks fought hard to get to see this specialist, asking for second opinion from him after being very disappointed with care of first Endocrinologist. I do not take anything for granted. Every day is a special gift. And my big thanks for saving my life from death from Addisonian's Crisis belongs to my Mum, retired GP and hospital doctor at Czech Republic who first diagnosed my Addison's in August 2015. Life is precious and I really appreciate every moment.
Tuesday, 27 October 2015
Thursday, 15 October 2015
Tuesday, 22 September 2015
Sunday, 20 September 2015
Friday, 18 September 2015
Wednesday, 16 September 2015
Just feeling ill
Some days, lots of days recently, I just feel too ill and cannot write or paint. It looks like I suffer from really strong reaction to Lactose in my medications and can't wait enough till seeing GP tomorrow for advice. I have lactose and gluten intolerance and been on lacto free and gluten free diet for 4 years now. I guess that's why my body is just on a big strike right now, getting in lots of Lactose in my medication.
But I will fight hard and try to pick up myself and will try to paint something later today.
But I will fight hard and try to pick up myself and will try to paint something later today.
Monday, 14 September 2015
Today's inspiration - learning to be patient with myself and Addison's
Today I realized how much I need to learn to be more patient with myself, with me and managing my new medical condition Addison's Disease. I received very wise advice from lovely people from Addison's self help online support group, who were very concerned, hearing how I feel, and were all advising me to be more patient and take time I need to recover. I feel very encouraged. I will try to paint something about this my patience learning and add it on here later.
Sunday, 13 September 2015
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