Part 1 of: Accepting chronic Illness

Today, I was challenged; but in a friendly way. I was challenged to do something I’ve subconsciously put-off for years; and that was to come to terms with something I don’t see, but apparently others do. I was challenged to come to terms, to accept that my reality will not be the same as it was 20 years ago.

For so many years, I denied the existence of lupus, the impact that Sjogren’s Syndrome and it’s Shrinking Lung Syndrome and pulmonary hypertension had on my life, the effect that epilepsy and all the medications that I needed to take had on my body, and the effect that osteonecrosis from ‘wherever’ and anti-phospholipid Syndrome (APS) have had on my life.

Okay, that is quite a challenge, quite a large chunk of humble pie to swallow, but being that I like pie (yes, it shows!) and I believed that if I’m telling others that it is best to live within limitations and embrace the challenges posed by one’s chronic illness, I ought to at least do the same myself.

But, where do I begin? Do I take the old route of catharsis and shout from the rooftops, so that everyone can hear me, ” I’m different, you can’t see my chronic illness, but it’s still there and it”s real!” Or, do I take the more subtle approach, pull the people in my life aside who matter and tell them that I am not what they see, that there are chronic illnesses that can’t be seen until the complications are so great? Or do I work on ME and march to the beat of MY drummer?

This posed quite a challenge for me, and I suspect, only for me. My self-identity was tied up in the active life that I USED to live and that life was to be no more. Because of the osteonecrosis in my ankle, I had had an ankle replacement and that called for no running, essential to triathlons.

Because of the Shrinking Lung Syndrome and the pulmonary hypertension I was consistently short of breath, so even though I will soon be able to return to the pool but I was not going to be able to compete. How much will I like the pool if I cant compete? I thrived on competition. I have a way about me of pulling something from deep down inside me and rising to the occasion, because I am not a natural athlete; I am a natural competitor.

I no longer have that the past work that I lived and breathed for, my work as a nurse. So, what do I have? How can I utilize m spare time?

Well, two things have dropped in my lap quite by accident. I always wanted to write, and for 8 years after I left nursing, I freelance wrote about healthcare issues. The boost that is given to a broken self-esteem when your article appears in print, you have your own column, your own by-line and you receive a check in the mail for having done something you like again was rewarding.

I am also a co-moderator ofh a group on osteonecrosis and I receive satisfaction there, too. It is satisfaction from researching and helping others to help solve the dilemmas of their lives with my nursing knowledge. I have also found that the internet is a source of information (I’m constantly learning to separate the wheat from the chaff, though), but I’ve been exposed to worlds I wouldn’t have thought of had I still been working 13 hours a day nursing.

I have found joy in books that I downloaded from the internet, never had time to read, and now, when time is at my free beck and call, I have so many books to read. I also have access to free books that I find in the  Kindle Store. There are more worlds that I want to explore, but those should keep me occupied until I perfect my approach to accepting that I’ll never be like other people whom I assume are ‘able-bodied.

That still leaves much of the challenge unaddressed. What strategies will I employ in MY LIFE that I like, that will become MY LIFE? Stay tuned for part 2 of my route to self-discovery and learning “what I want to do when I grow up!”

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