Amanda Thorpe

What's your gain, better by far, since scleroderma?

4 posts in this topic

Besides the obvious gains of knowing wayyyyy more about chronic illness than I ever cared to, knowing how to keep organized medical records and to advocate for myself, and the things the Amanda and Jo mentioned, I have gained understanding of the following::


Acceptance: my life is not what I pictured it to be but I try to make it the best it can be. I am more aware of what others may be going through. No one's life is perfect.


Adjustment: I can't do everything I'd like to do but I do what I can. If I push myself to do a lot at once, I also have to plan for down time.


Gratefulness: Although I grieve for things I've lost, I am very grateful that I once had them and am grateful for the things I have and can do now. 


Kindness to myself: When I find myself aggravated or mad at myself because I can't do something or I've received a negative report I ask myself if this is the way I would treat someone in a similar situation. Usually I would be much kinder to another person and then try to nurture myself the way I would  them.


The reality of change: the ten years since diagnosis have been a roller coaster of ups and downs. I know now I will have good days and bad days, periods of feeling really good and then not. The only thing certain in life is change.


Learning what is important: before scleroderma I put most of my emphasis on my career. When that was taken away I suffered an identity crisis. I learned it is who you are, not what you do, that is what is really important. 


Life is precious: every moment is a gift. Some are better than others. One never knows when a life will end, whether our own or someone we love. Treasure the moments and the people in life. Forgive yourself and others.


I'm not perfect and I have my really bad moments but I think I have become a better person in ways that really matter.







ISN Artist

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"Kindness to myself...Usually I would be much kinder to another person...Forgive yourself and others..."


Miocean, I have taken the above from your post, they struck me the most. Why, oh why, are we the person we are the most severe with? It's ridiculous for sure but sadly true, many things we would let slide in other we hammer ourselves for.


Forgive? You bet! Our unforgiveness has no effect on the unforgiven, they go about their business oblivious to our feelings but we burden and scar ourselves and only ourselves. We refuse to forgive, endlessly recalling the severity of the offence, soon we have translated our unforgiveness into bitterness and resentment. We might as well blindfold ourselves and go play in traffic, real physical and psychological damage is inflicted by unforgiveness, bitterness, resentment and it's inflicted on US by US.


I suspect that your attitude to your illness has a lot to do with your survival, how long and how well you have continued to live is no accident but the result of your determination to live a life of quality.


Take care.

Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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