The Sort of Hope Who Waits

The countdown to K has begun! My Philadelphia Freedom as I have come to call it is waiting for me.

19 days til my next treatment. The closer I get the harder things get for me. It gets harder to get out of bed. It gets harder to eat, harder to move. It gets harder to function basically. I get so very tired so quickly.  So I wait. I wait for the world to become more accepting of people who are “sick but don’t look it” . I wait for understanding from friends and family who can’t see my invisible disease or my swollen *insert whatever internal organ you chose here*. I wait  for the world to become more tolerant of those who are different from each other and I wait for a cure.  I guess you could say I am “waiting on the world to change.”

“Nerve-mber” our fearless leader has chosen to call it. In honor of how RSD/CRPS destroys our nervous system. It is our responsibility to continue to raise awareness of this disease in order to educate the public, each other, even medical professionals and hopefully to someday find a cure. To that end, I share the following… in the meantime, I wait.

Elle and the Auto Gnome

That blog ( above) contains the  best description (ever) that I have found of what dysautonomia is , written by another CRPS suffer. What *is dysautonomia* you ask? Just more joyful issues that some of us with CRPS have to deal with. (copied from Elle and the Auto Gnome) these issues are due to our faulty Autonomic Nervous Systems. These issues are also some of the reasons why I get so very irritated when people say ” WOW. You look great, you certainly don’t look sick.” And though I truly appreciate the compliment, as I do go to great lengths for my (vain)self and for the sake of my family, my children to make certain I *don’t* look sick, I wish I knew what sick was supposed to look like. Or how you could see all these things in someone.  The closer I get to my treatment, the harder these symptoms seem to be to deal with. Thankfully I don’t have all of them. As Elle’s blog mentions, not all of us have every one. Thank heavens. But many of us have many of them. I was trying to think of what I would consider to be the worst affliction  and I really can’t.

Far worse for me than any of these symptoms is the lack of understanding that surrounds those of us who suffer. Far worse for me than any of these horrible things mentioned below is watching my fellow RSD friends die due to the ignorance and lack of knowledge of the world around me. 

  • Tachycardia (very fast heart-rate)
  • Bradycardia (slow heart-rate)
  • Arrhythmia
  • Chest pain or discomfort
  • Dangerously low blood pressure
  • Sudden drops and irregularities in blood pressure (as a result of inappropriate dilation and contraction of blood vessels)
  • Blood pooling (on standing up the blood vessels do not constrict as they should, gravity naturally causes the blood to then pool in the legs, reducing returning blood flow to the heart).
  • Trouble staying upright (orthostatic intolerance)
  • Weakness and excessive fatigue (not the same as depression. Minor activities can lead to extreme exhaustion)
  • Fatigue after reading or concentrating
  • Heaviness of lower limbs
  • Unsteady gait
  • Slurred speech (aphasia)
  • Cognitive impairment – memory problems
  • Cognitive impairment – ‘brain fog’
  • Cognitive impairment – comprehension difficulty & confusion (understanding individual words but not making full sense of the overall concepts or context of the words in a sentence)
  • Cognitive impairment –  concentration, losing focus when conversation takes an unexpected turn
  • Cognitive impairment – speech disturbances (inability to finish a sentence, losing train of thought)
  • Cognitive impairment – memory
  • Cognitive impairment – word recall
  • Intelligence normal when blood flow is sufficiently normal
  • Adrenaline issues with over-activation of ‘fight or flight’ mode
  • Dizziness
  • Lightheadedness
  • Fainting (syncope)
  • Near-fainting (near-syncope)
  • Exercise intolerance and syncope
  • Gastrointestinal problems [DINET says these are very common] (including Irritable Bowel Syndrome, constipation, diahorrea, abdominal discomfort)
  • Bladder related issues (e.g. overactive, neurogenic – lacking control, different at night)
  • Blood sugar issues
  • Pupil dilation issues
  • Nausea, sometimes vomiting, bloating
  • Sleep disturbance
  • Insomnia
  • Needing more sleep to function
  • Breathlessness
  • Yawning
  • Anxiety
  • Convulsions
  • Blurred, tunnelled or dimmed vision
  • Migraines and headaches
  • Inability to regulate body temperature
  • Heat intolerance
  • Cold hands and feet
  • Decreased sweating
  • Increased sweating
  • Joint or muscle aches
  • Myofascial (muscle) pain
  • Nerve pain
  • Neuropathic pain (amplified pain signals to the brain)
  • Tremulousness (tremors, shaky etc)
  • Sexual dysfunction (impotence, loss of libido, dry or retrograde ejaculation)
  • Bowel dysfunction (intermittent diarrhoea, night-time diahorrea, rectal incontinence)
  • Increased emotions
  • Noise sensitivity
  • Generally feeling unwell on a daily basis (severity of symptoms can vary day-to-day)
  • Temporomandibular joint problems (TMJ), also known as myofacial pain dysfunction, and Costen’s syndrome (can include stiffness, pain, headaches, ear pain, tinnitus, neck pain, bite problems, clicking sounds, restricted jaw motion or locked jaws)
  • Panic attacks – induced by faulty ANS responses (including dyspnea – breathlessness, palpitations, chest pains and discomfort, sensation of being choked or smothered, dizzness/vertigo/unsteadyness, paresthesias – abnormal skin sensations e.g. burning/prickling/itching/tingling with no apparent physical cause, hots and cold flashes/sweating/faintness, trembling/shaking, fear of dying/going crazy/uncontrolled behaviour)

~ waiting ( not so patiently) on the world to change.

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2 thoughts on “The Sort of Hope Who Waits

  1. Been having a devil of a time myself lately. Even reading all these symptoms and being reminded that it’s the disease, it isn’t just my weakness or failure of will, helps. It’s hard enough to be disbelieved by others. I also tend to doubt myself after a while.

  2. Hi Hope, thanks for your message the other day, it is sooo lovely to meet you. I am really glad that you find the Dys’ info’ useful to share. I’ve tried to pull information together from a variety of sources in the hope it will be useful to gather it into one place for our fellow patients, so hearing that you think it’s handy is a really fabulous, thank-you, x

    I love your blog, love your attitude and your writing style, too. I shall be back to read more during my sofa hours. And I’m cheering you on from here, 😀

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