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Friends, Family & Illness

The canceled plans, dirty kitchens and general grumpiness that go along with having headaches, whether episodic or chronic, puts strain on even the best of relationships. With all my experience, you’d think I’d have some suggestions for dealing with this, but my brilliant strategy is to feel guilty. Not too productive, I know.

The new blog How to Cope With Pain highlights “family issues” once a week. Last week’s post answered questions that family members might have, like “Is the pain real?” Here’s part of her response:

“Faking pain, on purpose, to get out of something or to get a reward is known as malingering. While it does occur, it’s rare. Most patients feel very guilty about not being able to do the things they used to do, whether working at a job or taking care of their family around the house. Very few patients with pain make more money out of work than working.”

On her blog, migraineur Nicole offers tips for friends of chronics, including: “[P]lease do not decide for us what we can and cannot do. If you are having a party, let us know. Let us decide if we can or can’t make it to the party, movie, or what have you.”

This anonymous letter to people without chronic pain begins with, “These are the things that I would like you to understand about me before you judge me.” It goes on to explain what many chronics wish their loved ones understood.

If your friends are wondering what they can do, direct them to 50 Ways to Encourage a Chronically Ill Friend. Many ideas focus on encouraging the sick person talk about things that most people don’t want to hear about, like the massive changes that illness has brought to their lives. [via ChronicBabe]

What I fight with the most is being honest. It’s much easier to say that everything is OK than to admit that it’s not. When I do have the courage to tell people how I really feel, I worry that I complain too much.

I’ve finally accepted that my friends and family understand the best that they can. I’ve lost a lot of friends along the way. Although hard at the time, I’m better off for it. I don’t have the energy to convince other people that I feel terrible or deal with their insecurities when I cancel or don’t call them.

Because of my illness, my faults are in plain view. It’s simply too hard to hide that I’m selfish with my time, can be terribly insecure about the most bizarre things, and have great intentions with little follow-through. My friends and family accept me for what I can give now — which may be different than I gave three years ago or will give two months from now.

That’s the beauty of love.

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The Many Symptoms of Migraine

Is it just a coincidence that you feel foggy-headed, have to pee a lot and always have dark black circles under your eyes every time you have a migraine? Nope. Throbbing head pain, nausea, sensitivity to light and sound, and weird visual effects are the most discussed symptoms of migraine, but the list is far from comprehensive.

Migraine: The Complete Guide, my very favorite headache book, lists the infrequently discussed symptoms of migraine. I was astonished the first time I saw this list — and relieved to know that I wasn’t a freak of nature. Take a look for yourself:

Prodrome (the period before the pain begins)

Visual (aka aura)

  • a bright shape that spreads across the visual field of one eye and appears to block some or all of the vision; can be seen whether the eye is open or closed
  • flashes of light and color
  • wavy lines
  • geometric patterns
  • blurred vision
  • partial loss of sight

Sensory

  • numbness or tingling on the face or upper extremities
  • a sense that limbs are a distorted shape or size
  • smelling odors that aren’t actually present (like natural gas or something burning)

Motor

  • partial paralysis
  • weakness or heaviness in the limbs on one side of the body

Language

  • difficulty finding words
  • problems understanding spoken or written language

Cognitive

  • mental confusion
  • disorientation
  • transient global amnesia (similar to amnesia that follows a concussion)

Digestive

  • food cravings (particularly for carbohydrates, candy and chocolate)
  • stomach rumblings
  • constipation

Fluid disturbances

  • increased thirst
  • bloating/fluid retention
  • frequent urination

Mental/Personality

  • mood changes
  • irritability
  • high energy
  • lethargy

Headache Phase

Sensory

  • sensitivity to light and noise
  • intolerance of being touched
  • heightened sensitivity to odors

Digestive

  • nausea
  • vomiting
  • intolerance of food odors
  • loss of appetite
  • diarrhea
  • constipation

Skin

  • paleness
  • cold, clammy hands and feet
  • facial swelling
  • goose bumps
  • bloodshot eyes
  • black circles around eyes
  • sweating

Fluid disturbances

  • water retention
  • frequent urination

Respiratory

  • frequent yawning
  • sighing
  • hyperventilating
  • nasal congestion
  • runny nose

Mental/Personality

  • irritability
  • depression
  • anxiety
  • nervousness
  • difficulty concentrating

Circulatory

  • changes in blood chemistry
  • changes in blood pressure
  • blood vessel dilation
  • difficulty regulating temperature
  • changes in heart rhythms

Postdrome (24 hour following headache)

Cognitive

  • inability to concentrate

Respiratory

  • frequent yawning

Mood/Personality

  • fatigue
  • depression
  • euphoria
  • feeling of intense well-being
  • lethargy

So you’re not crazy, losing your mind or faking it!

This information is much like that in Not Just a Headache: Migraine’s Other Symptoms, which I posted last December. It’s such an important topic and receives so little attention that I wanted to revisit it.

By the way, Migraine: The Complete Guide is published by the American Council for Headache Education and is a terrific resource for anyone who wants to learn about migraine. It was published in 1994, but the information is so good that its worth getting. And if you buy it through the links in this post, a portion of what you spend will help support this blog.