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.
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 With Psychotic Features ~ 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) ~ Self-Harm ~ Bilateral Piezogenic Pedal Papules ~ Hashimoto's Thyroiditis ~ Irritable Bowel Syndrome (IBS) ~ Seasonal Affective Disorder (SAD) ~ Specific Phobias ~ Chronic Daily Headache ~ Eczema
Saturday, March 20, 2010
"I'm Frightened"
Labels:
Ehlers-Danlos Syndrome,
hypermobility,
scooter,
wheelchair
Monday, March 8, 2010
The first warm day of 2010
Ahh, the first day you need air conditioning. It takes me back to a time when things were simpler, well some things were simpler. Today I am reminded of lazy summers filled with swimming at the river and jogging laps around our trailer. I used to do a lot of crunches and lunges every afternoon, summer was the best time to exercise. There is something renewing about summer sweat. I can still smell the grass and dirt, when I used to play with Togy. I'd play tug-of-war with him until we were both exhausted; then I'd lay in the cool grass while he'd lay next to me. There is something about the first warm day that brings back a lot of good memories. At the same time I remember the good things I do so in a wistful manner. The times of waking up knowing that the day is mine for the taking is over. Now I wake up with the knowledge that I'll be in pain today. Some mornings I wake up hoping for a low pain day, while other mornings I wake up from pain.
I guess today I'm a bit depressed at what I used to have. I know I should be thankful that my new fibro medicine, Lyrica, seems to be working, and most days I am very grateful. That doesn't mean my pain is gone, though. I have less bad days, two or three a week rather than six or seven a week; which I am thankful for. Most likely I will feel better later today after a shower and my tramadol kicks in.
I am just slightly concerned about a lump in my neck that I've had for four years. Doctors dismiss it but I think it's slowly growing and I wish someone would just look at it. It's kind of annoying.
I do have an appointment with a new rheumy, one that comes highly recommended for EDS by a friend on Facebook. I hope that goes well. I would like to get custom braces. That would be really nice.
I'm sure this mood will pass shortly, but right now...
I guess today I'm a bit depressed at what I used to have. I know I should be thankful that my new fibro medicine, Lyrica, seems to be working, and most days I am very grateful. That doesn't mean my pain is gone, though. I have less bad days, two or three a week rather than six or seven a week; which I am thankful for. Most likely I will feel better later today after a shower and my tramadol kicks in.
I am just slightly concerned about a lump in my neck that I've had for four years. Doctors dismiss it but I think it's slowly growing and I wish someone would just look at it. It's kind of annoying.
I do have an appointment with a new rheumy, one that comes highly recommended for EDS by a friend on Facebook. I hope that goes well. I would like to get custom braces. That would be really nice.
I'm sure this mood will pass shortly, but right now...
Labels:
Ehlers-Danlos Syndrome,
fibromyalgia,
hypermobility,
Lyrica,
memories,
rheumatologist,
spring,
summer,
tramadol,
wistful
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