Would the Real Lucifer Please Stand Up?

Would the Real Lucifer Please Stand Up?

Scleroderma and the Ordinary Girl

Living with scleroderma has been interesting lately, to say the least. Expletives, curses, profanities, call them what you will … my week has been full of them, right to the brim! I’ve been so full of nastiness that it has been overflowing from my mouth at any given time.

The final straw was when my husband Max and I were driving home from the supermarket after a lengthy shopping expedition. I try not to go grocery shopping very often, as my lungs and heart have had enough and all my joints ache by the time I’ve been all the way around the supermarket. I prefer to order online and have them delivered. But this week was the exception, as we ran out of almost everything and couldn’t wait for delivery.

A woman pulled in next to Max and me as we were exiting the supermarket entranceway, her unnecessarily large SUV blocking our way for a moment or two. It is best I don’t repeat what I said. I am not proud of the names I called her. As Max stared at me in disbelief, I wondered if demons had taken over me. I was behaving like this for almost a week and secretly loathing myself for it, and now I’d finally let it show to my nearest and dearest.

On arriving home, I actually checked the bedroom mirror. No … I still looked exactly like me. No red horns or fiery pitchfork to be seen.

What I did see, was a face wracked with pain — physical pain. It isn’t hard to spot people who are physically suffering. The furrowed brows, tension-filled faces, and wretched look in their eyes give them away. They move stiffly and wince a lot. Exactly the things I discovered when looking at myself.

I have important tests coming up in another week and to prepare, I have been unable to take one of my pain medications as having it in my system may interfere with the results. I was unprepared for the increase in my pain levels and the resulting additional fatigue coupled with lack of sleep. I should have rested instead of pushing myself. I should have spent days at home instead of trying to cope with normal activity. I should have practiced plenty of loving self-care instead of demonizing myself to the point of self-loathing.

Clearly, it was not OK to behave the way I did. However, condemnation of myself rather than recognizing the real issue is a clear mistake.

Scleroderma pain can be extremely hard going. For me, it usually involves most of the joints, chest tightness with pain, dizziness, and nausea. All this on top of secondary discomforts caused by medications. Some of this can be masked by strong pain relief, but I have learned the hard way that this must be taken regularly and without breaks to be most effective.

I am surprised I didn’t anticipate the complications that going without a portion of my meds would bring. And I am a little cross with myself for not preparing better. A fortnight of extra good self-care was called for, rather than carrying on as normal and thinking I would cope.

At the end of the day, it is a great relief to find that underneath the angry red fiery flame-ball exterior that is pain, I am actually still myself. What a consolation to realize that the real Lucifer here is scleroderma and not me!

***

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.

One comment

  1. Andi says:

    I need help with mood changes too
    Also completely lost appetite and motivation to get up
    Just very frightening this illness,body feels out of control
    So good to hear from other who are surviving and flourish with it
    I will get there!

Leave a Comment

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