How I’m Surviving My Worst Waiting Room

How I’m Surviving My Worst Waiting Room

I’ve had a rough run lately. Three separate kidney infections, medications to treat them, and additional medicines to deal with the side effects of the first lot have left me with little energy for anything. The addition of a nasty head cold and an inefficient immune system has put my life on hold. This situation has been ongoing for several weeks now, and it feels like madness.

The physical challenges aren’t the worst aspect of this insanity; my state of mind is the hardest part to handle. Keeping active, eating a healthy diet, taking my medications, and getting adequate rest are essential for my physical well-being, and also vital for my mental health.

One of my current and biggest issues is waiting for a definite diagnosis of how scleroderma is affecting my heart. An in-depth yearlong investigation has involved various tests and procedures, follow-up cardiologist appointments to exclude specific conditions, then further rounds of exams to rule out other causes.  

While we are getting closer to the answer, feeling unwell and being confined to a recliner or bed all day leaves me with plenty of time to ruminate over possible causes and outcomes.

Waiting to find out what is wrong while experiencing distressing symptoms feels to me like being suspended in a bizarre hospital waiting room — a place of “not knowing.” I feel as if I’m stuck there, forced to stay put until the doctors figure out the puzzle. 

I don’t enjoy being in this scary place. Spending time here leads me to engage in frenzied online sessions searching symptoms and giving myself panicked self-diagnoses that settle at one end of the spectrum, tipping me into further anxiety.

However, I realize that I need to figure out how to make this “waiting room for the undiagnosed” a more comfortable place — and this requires mental discipline. If I have to be here, then I am determined to make things more bearable.

Focusing on positive thoughts about the expertise of my medical team and their tireless efforts to find answers helps. I’ve also been working hard at resisting the allure of Dr. Google.

Listening to music has been my saving grace, filling in hours otherwise spent on hyperfocusing on my body’s every ache and pain. Watching reruns of “Grace and Frankie” is another distraction, particularly the episodes where Frankie is learning to cope after a stroke. When I tire of those things, I make up stories in my head; I may have created the plots for two romance novels and one children’s book.

Hanging up fairy lights turns a dreary room into a more pleasant space; the task is a diversion that makes life more magical. I think that is how my music, TV binges, and the stories work, too. They have transformed my gloomy waiting room into a place that is tolerable and perhaps a little enchanted.

Though my terrifying thoughts about my health seem powerful, I have discovered that my imagination also has supernatural energy. Turning my waiting room of despair into a fairy grotto complete with my music, visits from Lily and Jane (Tomlin and Fonda, the stars of “Grace and Frankie”), and my inventive scenarios might be the utopia that I need at the moment. Some may believe that I’m delusional, but I’m fairly sure it’s working — you can be the judge.

I think I’ve got a handle on this. Now, please excuse me while I feed my unicorn.

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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.
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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.

One comment

  1. Chris Nickerson says:

    I know from my own experience of 45 years that so long as you keep going things will eventually improve. At my worst in 1976 I was 95% paralysed in a London hospital, due to my dermito-myositis overlap with Scl. Now I am fully fit except for bowel uncertainty and a damaged arthritic knee.
    Chris Nickerson

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