Help: A Four-Letter Word

Patients For A Moment (PFAM) is a patient-centered blog carnival to build connections within the community of people who blog about illness, disease, and disability. Hayzell, of possibilism.org, is hosting the April edition of the PFAM blog carnival. This month's topic is: "Is help a four-letter word?"

Hayzell writes:

But nothing is simple with pain or illness. Help becomes a complicated "damned if you do, damned if you don't" scenario laden with conflicting emotions and mixed messages. When your predicament isn't obvious to others, people may not recognize that they can or need to help. Likewise, when your problems seem like everyday nuisances rather than full-blown catastrophes, you may avoidasking for help or recognize that you should. Why is it that asking for too much help makes you "helpless." but not asking enough makes you guilty of "not verbalizing your needs?" Where is the sweet spot between "toughing it out" and "being dependent?"

I've always been a very independent individual. I never wanted to be one of those women that needed a man. I wanted to be able to provide for myself... to be able to stand on my own two feet and take care of myself. However, chronic pain put me face-to-face with some things in life that I've always struggled with.

Sharing with others. I've always had trouble letting others get close to me. For example, I used to never let other people read my writing because it's so personal. It's actually been a strange occurance, since my chronic pain began... I've found myself shutting off around people that I perceive don't understand or care (I'm working on being more forgiving and not just shutting down). But, with people that I feel really care or at least somewhat understand (especially those that I've met through the online blogging community), I've been much more real and open with. I feel more comfortable in sharing a glimpse into what my world is really like. It's such a good feeling to share your heart and your world, and allow others to see such a vulnerable side of you... it's still a little scary... but I feel that God is calling me to write, and the only way I know how to write is from my heart.

Asking for help. I've never been "good at" asking for help. I like to be able to do things "on my own." But, there are times that I simply cannot do things for myself, and I have to ask for help. I'm getting better at asking my husband for help, when I need it; but asking others for help is more of a challenge. I really hate needing to ask for help. I appreciate my husband so very much. He takes good care of me, and he never makes me feel like I'm weak and dependent (though that's how I sometimes feel). He knows where my limits are... sometimes better than even I do. He helps me respect and stay within my limitations, so that I don't have to pay dearly later for it.

Asking for help can be even more difficult because I have an invisible illness. Since people cannot see my illness (as they would a visible illness), they think I look "fine"... capable of doing things without needing any help or assistance. It's difficult enough to muster up the courage to ask for help, but it's humiliating to be looked at with disbelief and treated as though you're making up the pain in order to get attention or something. I hate having to try to defend that I even have an illness or disability; and at some point, I guess I just stopped even trying.

Helping myself. I'm even worse at helping myself than I am at asking for help from others. However, chronic pain has made it clear that it's incredibly important to help and take care of myself. One of the main obstacles that I've had to overcome is simply to allow myself to ask for help (from myself and others). This is definitely an area that I'm going to have to continually work on.


"Refusing to ask for help when you need it is refusing someone the chance to be helpful." ~ Ric Ocasek

Update:  The PFAM Carnival is live. Check it out here.

HAWMC Prompt 3: Health Q&A

I'm participating in WEGO Health's Health Activist Writer's Month Challenge (HAWMC) in April.

Today's challenge is to write a health question and answer it. I've decided to share a question that I'd be thrilled to never be asked again:

Why don't you just take a few Acetaminophen (Tylenol) for your migraine, and continue on with your day?

This question irritates me to my very core. I just want to answer by saying,

"Wow! That's a wonderful idea! I can't believe I never thought to try Tylenol. I'll definitely have to give that a try (for my chronic debilitating migraines)."

OR

"Because taking Tylenol would be just as effective as eating Tic Tac's. I can't even 'continue on with my day' after I take my prescription medication... you really think that Tylenol is going to do the trick?!"

Instead, though, I respond by simply (and briefly) saying that Tylenol doesn't help my migraines.

HAWMC Prompt 2: Word of the Day

I'm participating in WEGO Health's Health Activist Writer's Month Challenge (HAWMC) in April.

Today's challenge was to look up the word of the day on dictionary.com, and then write a post inspired by the new word. There's an "Ambitious Activist Challenge Add-on," which is to pick 5 new words and work them all into your post (and try to link them to your condition). I've always been an over-achiever, and I love taking on new challenges... so, of course, I'm going for it. I chose my words by looking up previous words of the day for my birthday (March 31).

• bivouac [biv-oo-ak, biv-wak] - a usually temporary encampment in the open; also, to encamp
• contretemps [kon-truh-tahn] - an inopportune occurrence; an embarrassing mischance
• xenophobia [zen-uh-foh-bee-uh] - fear or hatred of what is strange, foreign, or different
• edacious [ih-dey-shuh s] - devouring; voracious; consuming
• approbation [ap-ruh-bey-shuh n] - formal or official approval, sanction, or commendation; also, praise; an obsolete word for conclusive proof

When I first started getting migraines, I sheltered myself in a sort of bivouac - finding relief in random dark, quiet spaces. However, a bivouac can only stand so long before it gets tattered and can no longer provide protection from the enemy... in my case, migraine.

Then, the migraines became an edacious monster that disrupted every part of my life. It's hard to believe that a single contretemps could lead to so many changes. My relationships are different... many of my relationships have ended because of my chronic illness.

Dealing with so many changes in one's life (especially if they occur in a short time) can lead to xenophobia - not necessarily being afraid of or hating all strangers or foreigners, but having a fear or dislike for things that are strange or different. When you have chronic pain, you often try to surround yourself with things that make you comfortable... things that are familiar. It can be difficult to step beyond that comfort zone.

Living a life with chronic pain can be very lonely sometimes. I know that my emotions are often up and down like a roller coaster. Even though I don't need approbation, it's nice to be recognized and feel acceptance at least in an informal manner.

HAWMC Prompt 1: Acrostic

I've decided to participate in WEGO Health's Health Activist Writer's Month Challenge (HAWMC). I've been out of the writing/blogging world for a little while, so I hope I'm able to keep up. Luckily, they're providing a daily blog prompt. I'm looking forward to seeing what prompts there are and challenging myself to write in ways that are out of my comfort zone.

Today's challenge is to write an acrostic using the letters in the word HEALTH or for my condition (MIGRAINE), so I've decided to do one for each. An acrostic is a "form of writing in which the first letter, syllable, or word of each line, paragraph, or other recurring feature in the text spells out a word or a message."

HEALTH

History - It's important to know your medical history. And, especially if you're experiencing chronic pain, you should consider keeping a pain diary/journal.
Endurance - Being chronically ill often results in your mind and body enduring a lot. It can be very exhausting and discouraging, but it can also be a chance to learn and grow.
Assistance - Needing assistance (from other people, as well as from various tools and resources) can be very embarassing and humbling. It can be hard to ask for help... it's definitely a learning process.
Limitations - Learning to function around the limitations imposed by one's health issues can be incredibly difficult, but it's an important step toward acceptance.
Tested - Relationships, identity, emotions, faith, financial security, etc... can all be tested during times of illness. These tests can be very difficult, but they're opportunities for growth.
Hope - There is always reason to have hope for a better tomorrow... working toward an increased acceptance of one's health issues and situation.

MIGRAINE

Medication - Migraine is often treated with medication. Preventive medications are often used (in addition to abortive medications) in the treatment of chronic migraines.
Invisible Illness - Migraine is an invisible illness. This often leads to mis-conceptions and mis-understandings.
Genetic - Migraine is a genetically-based illness.
Routine - It's important to have and keep to a routine. Changes in eating and sleeping habits, for example, can be a trigger migraines.
Aura - Some people with migraine experience an aura, which is usually a visual (though it can be sensory, motor, or verbal) disturbances, prior to a migraine attack.
Incapacitating - Migraines can be debilitating, leaving the individual incapacitated for varying stretches of time.
Nausea - Many people with migraine experience nausea (to some degree) with their migraines.
Empathy - Experiencing migraines can lead to a stronger empathy and understanding for others. "Be kind, for everyone you meet is fighting a hard battle" ~ Plato

Letter to My Mind & Body

I haven't posted in quite a while... partially because I was busy and out of town, and partially because I just haven't felt inspired to write. Phylor wrote a letter to herself and suggested it to her readers, so I thought I'd give it a go...

Dear Mind & Body:

I want so badly to help you feel better, but I don't know or understand what you want from me or what you're trying to tell me. Why do you keep sending me mixed / unclear signals?

Why do various treatments seem to work for a short amount of time, and then they stop? After years of trying so many different medications (I hate putting so many chemicals into you!), we had the neurostimulator trial, which resulted in zero migraines for a week - successful (yay!). But, since I had the permanent stimulator implanted, you've had a difficult time recovering and working with the device.

How do you expect me to eat well and exercise at all, when you're constantly in a state of panic? I know that you're sensitive to light, so we have dimmed lighting, dark curtains, dark sunglasses, tinted windows, etc. I know that you're sensitive to sound, so we have volumes turned down and I limit exposure to crowded or loud areas. I do my best to stay away from smells (such as perfumes and candles) and tastes that bother you. I know that you ache all over, so I sit/rest/take breaks/etc. much more often than I used to. I do all of these things to make you feel better, but you don't respond well at all. Am I not making enough changes? ...not making the right changes?

Why do you not enjoy the things you used to? I know you had problems with depression before all of this pain, and I know that the depression is worse now; but that doesn't mean that you just shouldn't feel positive things anymore. You seem fine feeling anger, sadness, depression, fear, guilt, etc. Why do you block joy, happiness, excitement, etc?

Why are you preventing me from being able to read and write? I used to love reading and writing. I used to be so smart, and now I can barely follow a short article or conversation. My cognitive functioning seems so impaired that I feel stupid a lot of the time. Have you lost the ability to do the things I'm struggling with...or is it the illness...or the medications?

But, with all that said... I admire you for all that you've been through! The past 2.5 years have been horribly challenging, and you've endured so much. I'm doing my best to take care of you. I'm continually learning more about migraines and possible treatments (both conventional and complimentary). I promise to keep trying to improve, and to be more appreciative of how much you constantly endure.

Me

Mirrors (Feb 9)

I've never really ever had many mirrors in my house or apartment... I've never really seen the need to. I've never enjoyed gazing endlessly into a mirror at myself, though I mostly didn't mind looking at myself for a moment or two. There were times, when I was depressed - I would look into the mirror for a long time and cry endlessly for no real reason - but depression is its own beast.

Since my car accident and the onset of my chronic migraines, I've lived my life very much in the dark. Dark curtains shield me and all my belongings from the outer world and light. One day, I noticed that none of our decor included mirrors - of all the things hanging on our walls, none were mirrors, and most were canvas (so no glare from glass front). I decided that my migraines were the reason for not having mirrors - reduce reflections of light, etc.

But, tonight, for the first time in a long time... I looked at myself in the mirror. I mean, really looked at myself. I almost didn't even know the woman in the mirror. Who am I? Who have I become?

Everyone says that 'I am not the pain,' but... Who am I?!