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Monday, August 23, 2010

Selena Writes: A Letter to the Healthy People In My Life

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Dear Healthy Person In My Life,

I live with chronic illnesses: fibromyalgia, myofascial pain, thoracic outlet syndrome, dysautonomia, chronic Hepatitis C infection and type 2 diabetes.

They are called chronic illnesses because currently there are no cures for them.

Without a cure, these chronic illnesses will be a part of all my days.

The only thing I can do is manage my chronic illnesses.

Managing my illnesses takes a team effort between my doctors, my supporters and myself.

The most important way I have found to manage my illnesses is through self-help techniques (like pacing, planning, resting, asking for help, setting limits and saying no.)

Managing chronic illnesses is like having a job, except I work 24 hours a day, 7 days a week without pay or benefits.

There is no vacation, no escape from chronic illnesses.

Having chronic illnesses means that my life has been forever changed.

For example, I can no longer remember what it feels like to have a day without chronic pain or chronic fatigue.

Having chronic illnesses doesn't mean that I am a bad person or did something horrible; they are not a punishment for past sins, weak character or lack of action on my part.

Having chronic illnesses doesn't mean I can't do anything, but it does mean that there are some things I can no longer do and changes the way I approach doing everything else.

Having chronic illnesses means that I will disappoint you with my lack of ability to be an average, normal, healthy person.

You may feel frustrated, angry or upset with me--know that I feel all those emotions and more when faced with my physical limitations.

Know that my goal is to live my best life despite chronic illnesses.

Know that I have not given up hope that maybe one day things will be better for me.

Until that day, managing my chronic conditions has to be my number one top priority.

The best ways you can be there for me and back my efforts to manage my chronic illnesses are:
  • to love me
  • to listen to me
  • to believe me
  • to support me
  • to help me
  • to respect my limitations
  • and to be patient with me
.
Thank you for reading my letter.

Sincerely,

Selena


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3 comments

Tazzy said...

Dear Selena,
Doesn't it feel good to set the record straight? I know for me, the hardest thing is others not understanding the gravity to which this disease will go to, to stop you from doing what you want to get done. Man is that a run on sentence or what. But suffice, just kick it in the chins and do what you can, when you can with a whole heart and fresh mind. Hugs. Tazzy

Don't forget my GIVEAWAY.

elisabeth said...

So clear and simple! I hope you don't mind if I steal this- sometimes it's so hard to say (and hard not to feel hurt that it needs to be said at all). *hugs*

Jaliya said...

Hi, Selena,

I've just found your blog today. Thank you so much for this letter. I too live with chronic illness and the effects of grave injury ... In my situation, the chronicity lies in major depression and complex post-traumatic stress disorder. Twenty-two days ago, my husband of 8.5 years told me that he wants out of our marriage. Shock, injury, illness and stress have taken too huge a toll on us both ...

I wish you well and thank you for being there,

Jaliya

http://www.postcynicalseer.blogspot.com