Identifying the Thief That is Stealing My Life
Until writing this particular column, there had been an aspect of scleroderma that I still had not managed to come to any place of peace with since my diagnosis five years ago. It tormented me terribly, particularly when I had new results coming in from my regular tests, or had a review appointment scheduled with my rheumatologist.
It has been the question of my prognosis.
How many days months or years is scleroderma going to steal from me? I had thought a great deal about this, but I remained torn. I wasn’t sure if I should even ask the question, or if I should choose to remain blissfully unaware. Did the doctors have the answer? And what will I do if I ask and don’t like the answer? Once you’ve heard something you cannot un-hear it.
Some days, I felt that I should just stay focused on what I had accomplished that day, and be thankful for my small achievements. Other days, I’d notice a new symptom. Next thing, I’d find myself searching the internet relentlessly until I was exhausted and overwhelmed with information. Almost every time I’d have drafted an email to my rheumatologist begging her to test me for several complications I probably didn’t even have, convinced scleroderma was sneaking around inside of me, finding new ways to rob me of more time. I didn’t end up sending these emails most of the time, for fear she would have found me to be slightly paranoid (although I think that in reality she would have realized that I’m just really frightened).
Scleroderma is rare, and as a consequence there is less research and information about it than is generally available for more common diseases. Recently, when I dared to ask vague questions about a general prognosis, my team of specialists were very wary to talk about what to expect long term. It seems they actually don’t really know clearly what might happen with my scleroderma. “Every case is different,” they told me. It must be very tiring to be assigned the role of God by their patients, and questioned accordingly!
The simple truth is that none of us actually knows the answers to what life will bring to us, when and how we will die, and how enjoyable our experience is going to be along the way, whether we are chronically ill or not. Living with a disease like scleroderma really just presents more reasons and opportunity to ask these questions. I believe, however, that it isn’t really the disease I’m afraid of, it is the unknown. That is something everyone faces, regardless.
I find a strange comfort and soothing reassurance in knowing that I could be run over by a bus tomorrow. Because none of us, chronically ill or otherwise, really knows when and how our time is up, do we?
Life is there, waiting for us with each new day. Even if we do know the number of those days we have to go, each one is to be lived out, regardless. It just makes much more sense to use the hours in each one for enjoying the living of them, rather questioning how many are left.
In a strange kind of plot twist, it turns out that fear is actually the thief that is stealing the days I have left to enjoy my life, not some lousy disease.
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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.
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Comments
claire
;) I think I could have written those words... It made me smile, humor is a good remedy!! The funny thing is that when (sometimes) I talk about my illness, I usually end up saying that anyway noone knows when their time is up and that I could be hit by a truck anyday sick or not, so everyone should enjoy life when it is still on ;) At least I am aware of it, it is a gift after all!! ;)
Jeanna Crockett
Thank you for your story. I needed to read this. I need to somehow put my mind into thinking this way. I just found out I have Systemic Sclerosis Scleroderma less than two months ago . And I am a roller coaster of emotions. But your story helped . Thank you again and good luck with your health and journey .
Christine MacKay
Such an excellent reminder! I feel like I should print it and put it where I can read it every day! Once diagnosed, I feel like I could "just be sick". I think that I am so tuned into the Scleroderma that I'm blind to other possibilities. I really need to find some balance, and your article has really helped. Thank you!
Joss
Yes, avoid fear
But how to deal with what is already present, the huge restriction of life in months?
I can no longer taste or enjoy food,my body hurts constantly, l look unlike myself, hard to recognise my face, my hands look and feel different
I cannot participate in any of my friends activities
Socialising is almost over- too much pain,discomfort,burn skin,freezing feet,
I haven't found a way.
I will keep reading your post thank you but just now feel so devastated by this
Edith McKinsley
My sentiments exactly! We can either wait to die.Or live the best we can within the confines our diseases place upon us.I can be positive most days. Other times I feel defeated and afraid.But I am mostly positive. What frustrates me the most, and steals my energy are all the judgemental people I come across. If you look ok therefore you must be ok. I am bombarded with questions like What's wrong with you? Why do you need those sticks? Why are you using a wheelchair? I seen you walking yesterday! Most are not interested in my explanations.They are way to busy deciding that I am a faker.All of that is bad enough, but when family members join in it becomes soul destroying.
Joe
Joss
I feel just like you
It is devastating indeed.
It is too rapid. Life irrevocably changed.
The diffuse form is so rapid and scary.
I think that it is hard because the changes are almost daily in this early phase.
But so profoundly disquieting
I wish you all a break from this devastating illness,just some good days!
And thank you for writing inspiring articles which l will return when less distressed.
Holly M
Having this disease for a year now, I have some good days and think, yay!, this is the turn around I'm looking for and bam, two weeks of bad days. Looking for the blessing each day; a toilet available (can you imagine living in a 3rd world country and having this horrible disease?), wonderful support system (can't imagine not having a caregiver and having this); and a good day without pain on a 9.5 level (not being able to even take aspirin is frustrating). My previous life is over, but good can be found in the current pain with a positive attitude.