Silver Bells and Silver Linings

Silver Bells and Silver Linings

Scleroderma and the Ordinary Girl

Here in New Zealand, the festive season is upon us. Your average Kiwi Christmas in the Down Under is vastly different from holiday celebrations in the Northern Hemisphere. Today’s temperature is 29 degrees Celsius and barbecues all around the country are being cleaned for Christmas Day. Picnics on the beach, by a river, or at one of our many parks is a popular way to spend the day.

This year marks the beginnings of change for my wee family unit. My middle son is graduating with a degree in physical education from one of our top universities and we will travel to his ceremony next week. He has also met a lovely young woman and so he now has two family Christmas celebrations he would like to attend. We totally support him in this, so our festivities will take on a new format this year to accommodate these changes.

I’ve noticed that I’m feeling quite strange about the introduction of new traditions. The challenge is not because we don’t welcome the natural way families evolve as they grow — we most certainly do. It is rather because of a strange sense of unease within myself.

Retired, old therapists don’t change their spots. We learn to be self-reflective (or at least, we should). After all, it isn’t fair to ask our clients to do it if we don’t, right? So I’ve been trying to get to the bottom of my unease and have discovered that scleroderma is the problem.

Whenever there is a change in something concerning scleroderma, it generally means new symptoms are indicating disease progression. Naturally, I’ve become not only wary when something changes, but also anxious and worried. Until I have seen the doctor and come to grips with what exactly is happening, I remain unsettled.  

I guess that my head and heart are now highly suspicious of any changes. The wariness seems like an unconscious default mode that I go into, even when the changes are not associated with my disease.

When my worry is about changes not connected to scleroderma, it is often unnecessary. New occurrences don’t always need to be feared. More often than not, a new development or shift in routine brings about fresh perspectives and new blessings.

Despite the change in some of our Christmas traditions and routines, we will gain the company of my son’s lovely girlfriend, some new insights into how other families celebrate the season, and the chance to enjoy hosting a breakfast or evening dinner rather than the usual midday barbecue.

Interestingly, the same principle could be applied to the changes my scleroderma progression brings about. Despite the worry about new symptoms and complications, focusing on the hidden blessings is a better way to cope. By blessings I am referring to my evolution through my experience with scleroderma: development of increased strength of character, cultivation of resilience, and learning how to be creative in finding ways to live with the disease.

Despite the changes, life is OK. All is well with the world; it is about my perspective. Scleroderma teaches me so much and so I will focus on the silver linings this Christmas.

***

Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.

I’m 49 and live in Christchurch, New Zealand. I was diagnosed with Limited Systemic Scleroderma in 2013, and the disease has slowly progressed over the past three years. Prior to my diagnosis, I worked as a Counsellor/Therapist in private practice, however I was forced to close my practice in 2014 because the fatigue associated with the disease had become profound. Well before I studied, trained and worked as a Counsellor many years ago (at least 20) I was employed as a Dental Assistant. It is my belief that whilst working in this capacity I handled a number of chemicals that are now considered dangerous and this exposure may have been the trigger for my disease, together with an already existing genetic component. These days, my full time job is to work hard at my self-care and manage my symptoms as best I can. Part of this management is to reflect on and write about my experiences about living with Scleroderma in ordinary day to day life. This helps me a great deal, and I hope it helps my readers, both those who also suffer with Scleroderma, and to help raise awareness in those who do not. I enjoy adding a little humour to my writing, because honestly, I feel it’s important we all have a wee laugh from time to time. However, my writing usually includes a serious reflection of some sort. On a personal note, I am the wife of one, and the Mother of three boys. My husband Max is my main caregiver, and I am very fortunate to have such a loving and giving spouse. My children are aged 21, 19 and 13, and our two oldest boys live in different parts of New Zealand to study and work. Our youngest will be starting High School in 2017. We live with a menagerie of animals, including two dogs and four cats.
×
I’m 49 and live in Christchurch, New Zealand. I was diagnosed with Limited Systemic Scleroderma in 2013, and the disease has slowly progressed over the past three years. Prior to my diagnosis, I worked as a Counsellor/Therapist in private practice, however I was forced to close my practice in 2014 because the fatigue associated with the disease had become profound. Well before I studied, trained and worked as a Counsellor many years ago (at least 20) I was employed as a Dental Assistant. It is my belief that whilst working in this capacity I handled a number of chemicals that are now considered dangerous and this exposure may have been the trigger for my disease, together with an already existing genetic component. These days, my full time job is to work hard at my self-care and manage my symptoms as best I can. Part of this management is to reflect on and write about my experiences about living with Scleroderma in ordinary day to day life. This helps me a great deal, and I hope it helps my readers, both those who also suffer with Scleroderma, and to help raise awareness in those who do not. I enjoy adding a little humour to my writing, because honestly, I feel it’s important we all have a wee laugh from time to time. However, my writing usually includes a serious reflection of some sort. On a personal note, I am the wife of one, and the Mother of three boys. My husband Max is my main caregiver, and I am very fortunate to have such a loving and giving spouse. My children are aged 21, 19 and 13, and our two oldest boys live in different parts of New Zealand to study and work. Our youngest will be starting High School in 2017. We live with a menagerie of animals, including two dogs and four cats.

Leave a Comment

Your email address will not be published. Required fields are marked *