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

Thursday, November 11, 2010

Is the ‘W word’ really that bad?

“Is the ‘W word’ really that bad?”
October 22, 2010
2:26 pm

I’m looking out the window and I can see some teenage boys tossing a ball around in the street.  I am ashamed to find myself jealous of these boys.  I used to move like that.  I used to toss a football, run in track & field, jog in the mornings, throw discus and shot put, think nothing of being tackled in a friendly game of football, walk barefoot to the park…  The thing is that when I did all of these things I didn’t appreciate my ability to do so.  Am I out of shape?  Definitely.  That isn’t my problem though.  The pain and loss of balance are my hurdle.  I would, though, love to be that way again.  I notice myself flinching when the boys catch the ball, as if it was aimed at and caught by me. 

I’m feeling a bit melancholy, usually I try to have an excellent outlook on life, but today it is really hard for some reason.  DH seems keep telling me I will be in that shape and in a lot less pain again soon.  I feel like if I don’t then I will be greatly disappointing him.  I know he doesn’t mean it that way, but that is how I feel. I have accepted the possibility of being in good health again as well as the possibility of a wheelchair, and of course anything in between.  I can usually look forward to each day knowing it could be better than today, but lately I feel like a failure because I can barely walk and must use a cane.  Sometimes I need both my cane and DH to even help me to the bathroom.  Every time we have a talk about my future health I just want to cry because we’ll have the same discussion once again.  The doctors said that there is no possibility of me ever being in a wheelchair but then again most of the doctors I have seen are quacks, yet DH believes them, asking each doctor to tell me I will never be in a wheelchair.  Right now I just want to be happy and whether it will happen or not isn’t a big concern for me.  I’m too busy trying to get through today.  I was very afraid of what would happen when I was first diagnosed with EDS.  I am happy knowing that whatever the future brings I can handle it, no matter how good or bad my health gets.  What DH is so afraid of is that I’ll no longer want to try and the whole wheelchair thing will be a self fulfilling prophecy.  The thing is, I feel best knowing that I am doing my best, rather than trying to avoid mentioning the “W word” and worrying about what DH will think of me if I fail.  He said that he doesn’t care that I’m disabled because he loves me very much.  I just feel like if he’d accept that whatever the future brings we can handle and that life does not revolve around negative prophesies but rather positive ones  (and that I am aware and know all of this) then we’d both be at ease.  I try my best, I clean house while I am often crying in pain.  I try my best, I really do.  I don’t like being afraid of failure, when in my eyes it isn’t even a failure.  I’d like to get a wheelchair for when we go on trips and so that I can go outside more than a few feet away from the car before hobbling back in extreme pain.  I’d rather use one once in awhile for long distance walking to save the energy levels I have and to reduce my pain.  If I got a “W word” I’m afraid DH would see it as throwing in the towel and that I gave up.   That is the opposite of how I feel.   I feel like I’d be saving some spoons so that I can use those spoons later.  I thought about having DH read my blog but I think he’d still see it as me giving up.  I wish I could make him understand but every time one of us brings up the subject we both fight.  He talks a lot about whether my EDS causes me pain or not.  He thinks my pain is just fibro pain.  I’ve tried telling him that fibro and EDS cause the constant, unrelenting pain.  I’m not sure if fibro or EDS cause the worst of my pain, but I do feel it’s likely that they work together to cause it.

I’ve been so lonely lately.  I can’t talk to my friends online because I have no internet. (I’m typing this in Word to put into my blog when I can get online.)  I can’t hear from my pen pals because I can’t mail the response letters I’ve written because we don’t have the money for postage.  I feel so very alone.  I’ve been watching some movies and trying to lose myself in books.  It only works some of the time.

1 comment:

  1. Sending huge hugs and loads of spoons! I too have EDS and fibro, my EDS came 1st though so my DH totally ignores the fibro and is still pretending it doesn't exist.

    I understand your feelings about the w word. I was in the same boat up until recently. My counsellor and my best friend both agreed it'd be best for me to use the W outside & crutches at home. But getting DH & rest of family to accept that?! To make them see it's not giving up but it's in-fact taking my life back?! Nearly impossible!

    I wish I had some more helpful advice for you. In my case I had a minor stroke at start of September & tbh I've used that as an excuse to use the W. I'd never dare admit that in real world, but it's true. The only advice I can offer belongs to my counsellor - "ask those around you if they would prefer you to use sticks & be in lots of pain; or use a W & be in less pain AND able to do more?!!"

    I wish you all the best sweetheart & will be praying for you. I hope that things work out for you. xxx


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