My Journey With:

Hypermobile Ehlers-Danlos syndrome (hEDS) ~ Postural Orthostatic Tachycardia Syndrome (POTS) ~ Focal Impaired Awareness Seizures (Complex Partial Seizures) ~ Fibromyalgia ~ Chronic Myofascial Pain (CMP) ~ Polycystic Ovarian Syndrome (PCOS) ~ TMJ Dysfunction ~ Bipolar Disorder Type I ~ Migraines ~ Obsessive Compulsive Disorder ~ Keratosis Pilaris (KP) ~ Complex-Post-Traumatic Stress Disorder (C-PTSD) ~ Panic Disorder ~ Generalized Anxiety Disorder (GAD) ~ Social Anxiety Disorder (SAD) ~ Non-suicidal Self-Injury (NSSI or SI) ~ Painful Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis (Autoimmune Hypothyroidism) ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Multiple Phobias ~ Chronic Headaches

Saturday, March 20, 2010

"I'm Frightened"

I've been putting off writing this blog for obvious reasons.  I'm frightened.  My health is deteriorating so rapidly and I feel confused and scared.  I don't know what is going to happen to me.  I'm grieving the loss of my health, but as it declines I feel I am lost in more grief as I fall down a bottomless pit.  The pit is dark and there is nowhere to hold on.  When I do find a place to hold on it hurts too bad to do so, so I continue free falling.  I'm tired of people telling me "it will get better," when I don't know that that is at all true.  I know that some days are better than others, but will it ever "get better?"

Three days ago something very scary happened.  I couldn't put any weight on my right foot without my ankle slipping out of the joint.  I can't get it back in by myself, so I had to lie in bed and have Jim jerk as hard as he could on my foot until we both heard and felt a snap and then the bones moving into the joint.  The reason that scared me so bad is I was (and still am) afraid that may be the first step in many to being wheelchair bound.

I think that day Jim finally got it that things may not get better and a wheelchair is possible in my future.  I asked him if I end up in a wheelchair if we could make the chair pretty.  He promised me I'd have the prettiest chair in the world.

I have to admit that lately things like traditional wheelchair vs. a scooter and ramps have been in my mind.  I try not to think of them too much, but I still do think of them some.

I don't know where I'm going but I'm afraid I'm getting there too fast.

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