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Working With Chronic Illness

working with chronic illness“How can I work?” is one of the hardest questions I get. My own experience hasn’t given me much advice to share, so I’ve been researching. Here are some resources for keeping a job you have and for finding a new flexible job. If you know of any others, please share in a comment.

If you already have a job and are trying to figure out how to make it work given your illness, Women, Work, and Autoimmune Disease: Keep Working Girlfriend is a great resource. Don’t let the women and autoimmune disease thing scare you off. The book has useful information for men and women with any chronic illness. Rosalind Joffe, the author, also has an informative blog.

If you’re looking for a job, here are some sites that post flexible, work-at-home, or freelance jobs. I’ve chosen only the sites that appear to be reputable, but do not have first-hand experience.

FlexJobs consistently gets rave reviews as a source for legitimate, usually professional, flexible job opportunities. Many are telecommuting positions, but the site also lists jobs with flexible hours or that are short-term engagements. There are more than 50 categories of jobs and Fortune 500 companies are on the roster of companies posting jobs on Flexjobs. The downside is a monthly fee required to search the job listings. While I have no personal experience with the site, reputable media sources say the fee is reasonable given the high quality jobs on the site.

Rat Race Rebellion screens work-at-home jobs and shares legitimate offerings in a daily email and on Facebook. Most jobs pay up to $20 and the number of jobs are limited each day. Work-at-home job offerings often seem like scams; Rat Race Rebellion claims to only post jobs that they have verified to be on the up and up.

You have many choices if you’re looking for freelance work. These are typically short-term or project-based jobs and do not offer benefits like health insurance. You’re best off poking around different sites to see if the opportunities would work for you. Sites run the gamut from focusing on niche professions to offering opportunities across a wide spectrum, some handle the payment processing and others don’t, some have freelance jobs you can pursue and others allow freelancers to post portfolios or resumes. Some freelance websites include:

Have you found a job you can do from home or that accommodates your need for flexible work? Have you tried any of these websites (with success or without)? Please leave a comment sharing your experience so readers can learn from one another.

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Win a Pair of TheraSpecs or a Coaching Session With Kerrie!

MHAMgiveawayThe 30 Things meme is all about raising awareness of migraine and headache disorders… and you can win a prize, too!. Answer 30 questions about what it’s like to live with migraine or a headache disorder and submit your answers in the form at the end of the questions. By submitting your answers, you’ll be entered to win a 30-minute phone or Skype coaching session with me or your choice of any pair of indoor TheraSpecs. Your responses will be given a URL, which you can share to raise awareness. You’ll get an extra entry each time you share your 30 Things on Facebook or Twitter and tag The Daily Headache or @tdhblog (be sure to tag The Daily Headache so I see your entry!).

To be entered, simply submit your responses to the 30 Things meme by midnight June 29 (Pacific time). For extra entries, share your URL on Facebook or Twitter as many times as you wish before midnight June 29 (don’t forget to tag The Daily Headache or @tdhblog). On June 30, I will announce a randomly select a winner. To preserve anonymity of those who prefer it, I will only announce the winning entry, not the winner’s name.


Rules summary: Giveaway valid in the US and Canada only, except Quebec. (Sorry, the variation in local laws makes it too difficult to do elsewhere!) No purchase necessary. Winner will be randomly selected from all entries. Entries can be made through the 30 Things meme on The Daily Headache and sharing your answers on Facebook or Twitter (be sure to tag The Daily Headache so I see that you shared!). You can also enter by emailing kerrie[at]thedailyheadache[dot]com with the subject “Giveaway Entry.” Entries will be accepted from June 1 through midnight on June 29, Pacific time. The winning entry will be announced on June 30 on The Daily Headache, Facebook, and Twitter. The winner will have until midnight on July 3 to contact me to claim the prize. If the winner does not contact me, I will draw another winner. Email kerrie[at]thedailyheadache[dot]com for complete giveaway rules.

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What Are YOUR 30 Things About Living With Migraine or a Headache Disorder?

Migraine and headache disorders 30 Things memeYour early response to the 30 Things meme is so exciting! I love learning about how you all cope with migraine, CDH, and NDPH and know that other readers will learn much from you (and hope people with other headache disorders will be represented, too). Some responses have even brought me to tears, like:

“My life is not defined by my migraine disorder. Though it is a daily part of my life, I refuse to give it the upper hand. I demand that, if it is going to take from me, and it does, it will also give to me – wisdom, strength, faith, and compassion to walk this life better than I was before it came along.”Take & Give

This reader’s insistence on gaining something from migraine is a wise approach to retaining the upper hand. So often, refusing to give the upper hand is synonymous with barging through life as if in perfect health, which often leads to worsening symptoms. Instead, this reader recognizes the loss and limitation of having migraine, but also what can be learned and gained from it. It is wisdom I try to live by, though I’ve never described it so eloquently.

Be sure to check the 30 Things Meme category and Twitter and Facebook for more insight from readers. To keep you from being overwhelmed by 10 times as many posts as usual, reader submissions are not going out by email, in RSS feeds, or on the homepage of The Daily Headache. I’ll be highlighting comments throughout Migraine and Headache Awareness Month, which starts June 1, but there’s no way I’ll be able to share them all with you.

Will you share your 30 things? Here are the instructions and links to questions: Migraine and Headache Disorders 30 Things Meme. You can tell your story and remain anonymous, if you choose. (You need to put your name and email in the form to post, but I’m the only person who will see them and I won’t send you spam.) It’s a great chance for a short reflection on your life with a headache disorder. And, each story has it’s own URL, so you can send the link to friends and family, if you wish.

P.S. I’m putting together a contest from Migraine and Headache Awareness Month and will draw winners from 30 Things submissions. I’ll share details next week.

 

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A Malfunction in the Brain’s Software

software_malfunction“I often say that the software system of the brain now is impaired. And all of the functions that software runs — like your thinking and your behavior, your emotions and your sleep — can potentially be impaired as well.” Although neuropsychologist Gerard Gioia was talking about the brain’s recovery following a concussion, it’s an excellent metaphor for migraine.

I’ve often said that my brain function is at 30% (or some other percentage) during a migraine attack. I’m not confusing mind and brain here (though my mind malfunctions, too). Every bodily function that the brain directs works less effectively than usual during a migraine. You become clumsier, maybe dropping things or walking into walls. Thinking is impaired, so it can be difficult to find words, make sense of written language, or understand what someone else is saying. You may experience vision changes, like blind spots, seeing flashing lights, or blurred or double vision. Your mood swings can be so substantial that you’ll wonder where all this emotion is coming from. Sleep may be impossible or unavoidable. You might even perceive objects—including your own your limbs—to be larger or smaller than usual (Alice in Wonderland syndrome).

These (and many other) symptoms are familiar to people with migraine, but it’s hard to explain it to people who don’t have migraine. Perhaps the software metaphor will make this weird illness called migraine easier to describe.

I’m curious to hear from those of you who have cluster headache, NDPH, tension-type headache, or another headache disorder—do you also feel like your brain is malfunctioning?

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Your 30 Things Headache Disorder/Migraine Meme

Your response to the 30 Things About My Invisible Illness You May Not Know meme from Invisible Illness Awareness Week last year was so enthusiastic that I’ve adopted and adapted the idea for Migraine and Headache Awareness Month. Since not all headache disorders are the same, I’ve come up with slightly different lists for different types. If you fit multiple categories, you’re welcome to respond all those categories. Links to each set of questions are available at the end of this post.

You can submit your responses to be published on The Daily Headache. Each one will have a unique URL so you can share it any way you’d like. Directions follow. I’ll be highlighting some answers through Migraine and Headache Awareness Month, which starts June 1.

Even if you don’t wish to share your answers, answering them is a helpful way to think about how having a headache disorder has affected your life in both good and bad ways. Filling mine out made me cry happy and sad tears. It also reminded me of the incredible feat of living with a headache disorder, which made me feel proud.

To post your 30 things on The Daily Headache…

  1. Follow the link below to the set of questions you wish to answer.
  2. Enter your name and email address (neither will be published and I promise I won’t send you spam).
  3. Fill in the title field—it can be as simple as “30 Things About Mike’s Life With Chronic Daily Headache.”
  4. Read through the questions
  5. Find the submission form at the bottom of each list of questions.
  6. Copy and paste the questions and your responses into that form.
  7. Before clicking “submit post,” be sure you’ve filled in every field. Your post will not be submitted unless every field is filled in.
  8. Within 24 hours, I will moderate your submission (to prove it’s not spam) and it will be published as an individual post with a URL you can share. Check the 30 Things Meme category for your post then click on your post title to get the URL.

Links to questions…

30 Things About Your Life With Migraine

30 Things About Your Life With Cluster Headache

30 Things About Your Life With New Daily Persistent Headache 

30 Things About Your Life With Chronic Daily Headache

30 Things About Your Life With Tension-Type Headache

30 Things About Your Life With a Headache Disorder

I hope I haven’t made this too complicated in the name of inclusivity! Please let me know if you have any questions. Many thanks to Invisible Illness Awareness Week for this great idea.