My Journey With:

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness (Complex Partial) Seizures ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I Rapid Cycling ~ Migraines ~ Gastroesophageal Reflux Disease (GERD) ~ Obsessive Compulsive Disorder (OCD) ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Nonsuicidal Self-Injury (Self-Harm) ~ Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Headaches

Monday, April 30, 2012

"Oh, but you DO look sick!"

I'm so worried about DH (darling husband).  He is in so much pain right now, and I know how that feels.  I feel so helpless when I see him in pain.  I want to take away his pain so bad, I want to make him "all better."  I'd rather take on the extra pain than him have it.  I love him so much,.  His face is all swollen on one side with infection and I'm worried about it getting into his blood stream.  He is my life, my soul-mate, The One.

My Soul-Mate

Today I'm going to type up some of the lessons I've learned in Toni Bernhard's book How to be Sick.  I will share a sneak peak tomorrow, but don't want to give too much away, because every spoonie should have this book.

How to Be Sick by Toni Bernhard

For the past week I was in a flare almost every day.  I know that us spoonies are often told we look so good, we couldn't possibly be sick, but there are some days you don't even have to talk to me to tell I'm sick.  See the proof in photos below:

In a severely painful flare - "Oh, but you do look sick!"

On a "but you don't look sick!" day

I was surprised once, when DH told me that he can still tell by looking at me how severe the pain is when I'm trying to hide it.  I thought I was an excellent "I'm a normal person" actor.  I think only he could tell or a another person who suffers severe pain, like my best friend V, can tell.  I think it's hard for people to remember I"m still in excruciating pain, even if I am talking and laughing.  The other option would be to sit and scream all day, so I choose to try my best to be "normal," whatever that is.

There are still thinks I can't do very well, like stairs, standing for long periods of time, cooking, using a walker, or showering without a chair, but when it becomes your new normal and you accept it as that, you don't really think about it very much.  I consider myself a lot more "normal" now that I accept that these things in my life as the present.  They are not the past, nor the future, but the present, the very moment we are experiencing now.  For me, waking up and taking 15 pills are normal.  So are my wrist braces and my Oval-8 finger braces.  Other things that are normal include being a: Tweetaholic, caffeine lover,cross-stitcher, scrapbooker, bibliophile, kittmmommy, introspect ive, sensitive.  Accepting your disability and its effects as a new normal is an important step to acceptance.

1 comment:

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