Scleroderma Penetrates My Dreams

Scleroderma Penetrates My Dreams

Scleroderma and the Ordinary Girl

Since childhood, I have had a wonderful reoccurring dream in which I fly around a town on a magic carpet. The carpet arrives and hovers around knee height, waiting for me to climb aboard. I get on, lie on my stomach, and hold the edges while peering over the end, and we take off. I cruise the night sky and gaze at the glittering town below.

Recently, for the first time since my diagnosis six years ago, the dream changed. I couldn’t get on the carpet and realized that my joints wouldn’t cope with clambering onto it and that lying down would be impossible. I asked out loud for a flying recliner instead.

There were a few moments of concern, as nothing seemed to be happening. Eventually, I spotted a small dot in the sky getting closer and closer. Much to my relief, a golden recliner showed up and parked nearby. I got on. It was certainly much more comfortable. Off we went, up into the stars without a care in the world.

The dream was just as lovely (and certainly more comfortable), yet I cried my eyes out once I awoke. Not only has scleroderma affected my everyday life, but it has also penetrated my dreams.

This development represents something, though at this stage I’m not sure what. Perhaps the knowledge that there is no escape from this disease, even in my dreams. It is a clear signal that somewhere deep in my psyche, I have accepted that I co-exist with scleroderma and have adjusted to life with it in all situations.

In every moment, I make adjustments to how I “do life” with scleroderma. If going out, I consider my fatigue levels, seating and parking arrangements, whether I’ve packed enough medications, and whether I have enough clothes to stay warm. I have a backup plan in place in case I need to come home quickly if I become unwell. In my car, I carry a spare seat and a blanket in case of unavailable seats or cold conditions at venues.

The biggest part of adjusting to the disease is that I constantly need to think ahead to ensure I can cope with whatever life throws at me each day.

Now my dream life has also adjusted.

Is that OK with me?

I don’t know yet — it seems to be a mixed bag. On one hand, it feels so unfair that scleroderma can’t even leave me alone in my dreams. I’m also upset that my zest for life has become focused on staying comfortable rather than adventurous and excited.

Realistically, it makes sense that if my daily life has adjusted to living with this revolting disease, then so would my dreams. I’m just sad that there is no longer any escape. The abnormality of life with scleroderma has become the norm.

Nevertheless, it is amazing to know that despite all the challenges scleroderma has introduced, I still have managed to adapt and grow as a person. I handle the changes, adjusting as I go. It has taken courage and sometimes skill, and perhaps has developed my character a little! I have had the strength to do all of this, which has surprised me at times.

Scleroderma has been a huge life-changer. Despite this, perhaps my individuality and uniqueness have risen to the occasion and I have expanded into it — even in my dreams.

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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.

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