Is a ‘Normal Life’ Possible with Scleroderma?

Is a ‘Normal Life’ Possible with Scleroderma?

This morning I went for a walk. I’m trying to introduce this daily activity into my self-care program in an attempt to claw back some semblance of a “normal” life. Well, at least that’s what my inner voice told me as I pulled on my sneakers and gloves. (It’s winter in New Zealand). This year, my Raynaud’s seems to have extended to my ears in addition to my hands, fingers, toes, and feet, so I decided to try out my new ear warmers.   

I had a bit of a battle to get them to sit comfortably. I put them on the way the instructions told me to, but they felt weird. Straying from the “norm,” I decided to wear them backward. They were a perfect fit that way, so with my ears toasty and my trance music playing through my earbuds underneath, I set out.

I felt like a rebel; a middle-aged, burned-out hippie sallying forth in my harem pants, plugged into my trance music sounds with my earmuffs on backward. Doing life my way — and with no evidence of “normal.”

Normal is a strange word and one I’m not entirely comfortable using in any context. My stumbling block with “normal” is the fact that the word itself seems to be an indicator of some kind of measure. I wonder who sets the limits for what is normal and abnormal in any circumstance, and the context used to set those parameters. Do they base it on their belief system or data from a scientific study of a subset of people? Or do they make it up according to the latest trend or what may suit them as a company, businessperson, or organization, all with different sets of ideas and motivations?

Science informs us about how things should be in a typical situation. But when it comes to my blood tests it becomes confusing. On paper, specific numbers in my complete blood counts show extremely high levels — not normal at all. However, my doctors don’t do anything about those results, because, as they explain, there is an acceptable reason for the high levels — a combination of the medicines that I take and other causes associated with scleroderma. The results make sense to them. As they say, “Oh … that’s normal for you.”

Those last two words seem to be the crux of my entire “what is normal and what isn’t” debate, and particularly so when it comes to living with a rare disease like scleroderma.  

Being rare immediately sets me apart from the norm, although many of the symptoms of scleroderma that I experience are normal — for a patient with the disease, that is. Then I have issues that do not follow the typical pattern of the disease; my tachycardia and breathlessness, for example. The jury is still out on that one, but unless you are my cardiologist who knows those symptoms are currently normal for me, I may be considered to be at the abnormal end of the scale.

I have realized that I can self-generate anxiety that things aren’t “normal” — blood tests, how much I can exercise, wearing my ear warmers backward in public. However, the vital point I’m missing is that my concern is based on a measure for “normality” that could come from a variety of sources.  

Living with a rare disease won’t line up with many of the normality measures that have been set by most of those sources, and sometimes not even within the scleroderma grouping.

I’ve always been a “bit different” anyway, and I am determined to shift my measure to focus on what is normal for me. I have realized that those two words put everything into perspective — well, for me, anyway. 

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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.

4 comments

  1. Kim Wright says:

    What about those of us who don’t have support and a life less than ordinary but is fully well conversed in the issues associated with having scleroderma. Our life is fraught with lonely fear because no one cares enough to want to understand what you are going through so one has to take extreme measures to survive which necessitates more discipline than the majority of people have and one does so silently. I think you are extremely lucky to have the support you do and wouldn’t want to take that away but sometimes we have struggles beyond what most people even with the illness comprehend. Nice article by the way. I should start writing a blog but am out of my jurisdiction.

    • Kim Tocker says:

      Hi Kim – awesome name by the way 😉
      Support from those others close to us is really important, and I agree I am so lucky in that respect. I do really feel for those who don’t have this support, particularly from those close to us (family and friends). I think being able to come together as a Scleroderma Community, either in person on online through blogs such as mine or all the other talented Scleroderma writer/bloggers out there. Although it isn’t a replacement for family/friends, it can help fill the gap a little. I’d really encourage you to write a blog, it’s both therapeutic and helpful for yourself and others. If you do decide to do so, let me know and I’d be honoured to follow you!

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