Each week we are highlighting a different Chronic Illness Bloggers’ member as our ‘Blogger of the Week‘. As well as getting to know each other better, we hope that you enjoy this series and that you find the interviews with each member to be insightful and helpful.
This week our blogger of the week is Marlies of White Padded Room.
1. Tell us a little about yourself.
I was dropped on my head as a child. My sister and I were playing tug of war between our cribs and she pulled me out. I guess you could say I lost a tug of war game at 4 years old which may or may not have altered my entire life course.
I’ve lived in various padded rooms with 4 walls. Sometimes there were no windows at all. When I don’t take my sleeping pills, a white background is scary because I can clearly see outlines of the Seven Dwarves working industrially. I became sick at 16 with some viral thingy (like pneumonia or mono) and started having seizures.
Since then, my unrelenting research, trips to specialists and my Bachelor of Science in Nursing Degree have not helped me in my efforts to acquire a definitive diagnosis. In fact, I might have been in another dimension when I went to school. I may have blocked the whole thing out, but bits and pieces come back to me. Like Helicobacter pylori. Sort of a bad ass microorganism.
I was given a “wastebasket” diagnosis of Chronic Fatigue Syndrome. To be fair, the terminology is confusing. If my diagnosis is in a wastebasket, shouldn’t I just be able to throw it away and be symptom-free? Somehow I don’t think that’s how medicine works.
I have no pets, a year-round Christmas tree, and haven’t managed to keep any plant alive. I am not married and have no kids. I do, however, have a very large life sized bear called Kelto who has been my constant companion for over 15 years. You will see him frequently on my blog, as he is my long-suffering roommate. And occasionally, he sits in the passenger seat of my car, when I can drive.
2. What is your blog called and how do you define your blog’s purpose?
White Padded Room. I wish to network with other people suffering from Chronic Fatigue/ME (and chronic illness in general) who wish to see the humor in everyday life. Laughter is one of the best medicines there is – for whatever ails you!
I am a uniquely disorganized frustrated person who has not learned to adult. I am a writer and blogger with CFS who has not yet learned to adult. I share my majestical daily life in the form of blogs, poems, links and odd pictures I take with my cell phone. Kelto, my long-suffering roommate of 15 years, is a very large teddy bear and graces my blog with his presence. “White Padded Room” is a collection of insane humor and storytelling brought to you by a nearly housebound author. Me.
3. How long have you been blogging and why did you start?
I have been blogging since September of 2016. Primarily, I started because I love to write and because of my illness I am unable to get out of the house very often. Writing gives me an outlet for my joys, frustrations, happy moments, and sorrowful ones. I continued writing, and found that there were many other people out there who had much in common with me, and enjoyed my strange and irreverent humor as it pertained to everyday life with a chronic illness.
4. How often do you post? What made you decide to post on this schedule?
I try my best to post twice a week. Mondays and Wednesdays are good days to post, as well as on important days (Christmas, New Year’s, Easter, Valentine’s Day, St. Patrick’s Day, my birthday, World Thinking Day, and any other official “Day” I can think of). Mondays and Wednesdays are popular for me, as well as Sundays. I know this because I check my WordPress stats often, and those seem to be my best days.
Because my illness causes “flare ups” that are unpredictable, I am sometimes unable to stick to Monday and Wednesdays. So, for example, you might see posts on Thursdays instead of Wednesdays, or posts on the weekend instead of Mondays. I do my best and consistently have 2 posts a week, unless I am hospitalized or there is an emergency.
Wednesday is generally the best day. I think it is because it is “hump day” for a lot of office workers or people who work at computers 9-5 Monday-Friday. People are halfway into their work week and have more time to check “fun” or “non-work related” email than say on Monday, when there is a lot of “catching up” to do.
Again, I’m finding that Monday is also a popular day, not so much for the office worker but for the demographic who are at home and their kids are at school – and they find more time for themselves as the weekend draws to a close. I have also noted that posts get a lot of views on the first and the 15th of the month, perhaps that is a “payday” schedule for many people and they are “happier” and more relaxed, apt to have more fun on those days.
5. Do you feel blogging has benefitted you? If so, how?
Blogging has literally saved my life. I am a very creative person. Right now, if I had my way, and my energy, I’d be doing opera, musical theatre, dance, making my own record demo, painting, and doing long-distance running. But I can write about doing those things. I can write about my joys, sorrows, and frustrations and I find it to be extremely therapeutic. In doing this, I find reading others’ blogs even more therapeutic because, well, we’re all in this together, right?
6. Why do you feel it’s important to blog about chronic illness?
It is cathartic for the writer, and is therapeutic in nature. People need to feel a sense of connectedness, especially given the “housebound” nature of many bloggers. People with chronic illness need to have a sense of being connected to the medical community/holistic practitioners/alternative therapies because they need HOPE. People with chronic illness need to network with each other, sharing what works best for them in terms of relieving symptoms, good doctors to go to, products to try.
People with chronic illness need to also network with people who are doing research (say ME/fibro/autoimmune diseases), to stay abreast of the latest developments. Again, HOPE. All different kinds of chronic illness bloggers need to keep blogging and networking because the general populace and government and policymakers need to hear the sobering facts of underfunded, under-recognized illnesses.
Bloggers help greatly in contributing to increasing public awareness campaigns around a specific illness (e.g. #millionsmissing). Online publications accept personal stories and help to dispel myths and stigmas around certain illnesses (The Mighty) and these publications accept submissions from bloggers.
7. What are your top 3 blogging tips for other bloggers?
1. Write what you know. Even if you think that your day, situation or story is strange, just write it. You’ll be surprised at how many other people can relate to you. Irreverence is ok, as long as you know which lines you do not cross. Use curse words carefully and infrequently. A blog entry is ALWAYS better with original pictures, and they don’t have to be Picassos. A picture of artfully folded towels can be surprisingly popular. Link photos to Instagram and Twitter.
2. Always be aware of the purpose of your blog and be grateful to your followers. Stay within those parameters (e.g. I would never get heavily into politics or religion, as these subjects are often inflammatory). Be respectful of other bloggers, and treat your subscribers well, thanking them OFTEN for dropping by to read. If someone follows you, write to them that you are thankful that they chose to connect with you. Always reply to or like comments that subscribers leave on your blog. People appreciate being acknowledged. Re-blogging some of their content is also a sign that you appreciated their submission so much that you want to share it.
3. The format of your blog is important. Especially for readers who are often ill, tired, and riddled with brain fog. Personally, if I go to a blog page that has not been configured yet, or doesn’t flow well, or has way too much information on it, I get irritated and confused and generally I leave. Before you put up your blog, get help from someone to make sure it is clean, crisp, configured, and that all of your links to other pages and social media are working.
Always make sure that your “follow and subscribe” button is EASY to do and is placed somewhere prominently. Don’t change the format once you have it. Changing it often will confuse readers. If readers can’t find your subscribe button, it will create tension and frustration. Also, I chose bold, bright colors and fonts on purpose because the overall timbre of the blog is cheer and humor. Choose your color themes, fonts, pictures, and overall layout carefully.