By Guest on October 30, 2009
Guest post by Natalie Ziegenbein – Thank you!
Independence: Natalie's First Trip Away From Home
Most of my time prior to now has been spent writing articles and talking about how sick ME/CFS made me to make people realise how much it affects people’s lives. I’ve written endless articles, emails and spoken on YouTube videos about how sick I was and how terrible ME/CFS is. ME/CFS is terrible, but if the extent or severity you suffer to starts to decrease, life becomes this wonderful, magical place.
My name’s Natalie and I am one of those people that experienced the severe end of the spectrum and got ‘lucky’ enough now be experiencing a slow incline towards feeling ‘normal’.
When I was bed bound I constantly wondered why I didn’t appreciate things more when I was healthy. Why didn’t I pay more attention to what grass felt like under my feet? Why didn’t I look at the birds flying around? Why didn’t I listen and embrace the sound of music rather than getting annoyed it wasn’t a song I liked? Why didn’t I get that being able to operate the huge machine that is my car enabling me to travel over 100kph was absolutely amazing? I could go on forever…
Although I am still unable to do a lot of things healthy people would consider ‘normal’, (work, study, drive, go out dancing), I am insanely happy to be able to say I can do a lot of things that make life feel amazing again. Improving from chronic illness is about a billion times more awesome than you imagine it to be. Today I wanted to share some of my experiences with you. Continue reading “Recovery: Breaking Out Of The Four Walls”
Posted in Recovery
By Guest on September 23, 2009
With a job title, society can label you
When a child is asked, “what do you want to be when you grow up,” the expected response has to do with a career. Many adults equate who they are with what they do for a living. Nobody blinks when they hear, “I am a lawyer”, rather than, “I work at a law firm as one of the partners.”
But what happens when you can no longer manage a paying job? Do you suffer from an identity crisis? Are you not you any more?
I was fortunate enough to be raised with the knowledge that a person is more than what they do for a living, handy when you end up changing careers several times. But I was also brought up with the belief that once you are of legal age, you become self-sufficient, holding down a job no matter what its status (stay at home parents also qualify). In other words, you earn your keep.
So when it became apparent that I would not recover sufficiently from my ailments to return to my job, I became depressed. Oh, I had no illusions that the world of newspaper publishing would suffer from my absence, but I definitely felt guilty about no longer being able to earn my keep, financially speaking. And I could not even do enough around the house to qualify for the old-fashioned title of housewife. I did some talk therapy sessions with a clinical psychologist and discovered that what I needed was a new sense of purpose apart from a paying job. Continue reading “The “Usefulness” Factor”
Posted in General, Social Issues | Tagged career, job, loosing a career, loosing a job, not being able to work, too disabled to work, work
By Ricky Buchanan on August 23, 2009
Holidays From Home logo
I recently conducted an email interview with Claire Wade, who runs
Holidays From Home.
Ricky: Let’s start off with some background – who are you, where do you live, what does your life involve?
Claire: My name’s Claire Wade, I’m 26 and live in Norfolk, England. I’ve had ME for 16 years, bedbound for 6, now slowly improving. I’m mainly housebound; but starting to get out and about a bit, mainly using my wheelchair.
What got you interested in doing things for homebound and bedridden people?
Despite being so ill I was still really mentally active which meant I got bored very quickly. I wanted to find things that I could do; but there often weren’t many options so I had to come up with my own. I also discovered that there was a serious lack of information and I wanted to help other people in a similar situation so I used my experiences to write books and put together websites. Continue reading “Holidays Without Travelling”
Posted in Cabin Fever, Interview | Tagged get away, getaways, holidaying when you can't travel, holidays, how to travel when ill, travelling when ill, vacations
By Ricky Buchanan on August 10, 2009
A home can be confining
Welcome to Four Walls No Limits!
The name Bedbound/Unlimited is no more – as much as I loved the name personally, it didn’t actually reflect the fact that this blog is relevant to anybody who’s couchbound, housebound, or even “just” mostly housebound, as well as those of us who are bedridden. Continue reading “Welcome to Four Walls No Limits!”
Posted in General | Tagged admin
By Guest on July 2, 2009
Guest post by Pamela Dodd – Thank you!
I never appreciated being a homebody until I found out I had Lyme Disease. Healing from Lyme can be a roller coaster ride. Having a supportive home base really helps.
I’ve probably had Lyme since I was a kid in the Philadelphia suburbs in the 1950’s. My parents were always puling ticks off the dog and my brother and me. However, I don’t remember getting the classic rash or flu-like Lyme Disease symptoms. Continue reading “The Realities of Lyme Disease”
Posted in General
By Ricky Buchanan on May 30, 2009
Scanner Buttons Can Be Dangerous!
The scanner that I have is out of my reach across the room. It’s all connected up to my computer but I can only use it when there’s somebody here to change the images for me while I use the scanner software.
Still, I have become the family’s unofficial archivist and am slowly, very slowly, scanning all the old shoeboxes full of images my family has. There are slides and negatives and photographs dating back as far as the 1940s, as well as very very many from the 1980s and 1990s when the kids in my family were growing up. So far I’ve scanned more than 13,000 images over several years, and it’s still progressing.
But recently there’s been a problem – my cat has discovered that my scanner is often warm and has taken to walking over it and sitting on it. Continue reading “Cat Scans”
Posted in Humour | Tagged cat scan humor, funny cat picture, pet humor
By Ricky Buchanan on April 18, 2009
If you need to use your computer in bed, using a laptop in bed is easiest. But if your existing computer is a desktop computer, don’t despair – there are still plenty of options.
Ricky using her desktop computer in bed
My first “computer in bed” setup was simply to put the computer right beside the bed, so I could see the screen easily, and put the usual keyboard on my lap! No cost involved and it worked for years. Continue reading “Using A Desktop Computer In Bed”
Posted in Computing | Tagged computer in bed, using a computer in bed
By Ricky Buchanan on April 16, 2009
There’s a new question up at the Experience Project website:
Does anyone have some good coping skills [for] when you are chronically ill and mostly bedbound?
I figure there’s a bunch of people around here qualified to give them some advice! The question can be answered for the next 48 hours, you need to log in to the EP but it’s free to join.
Ricky
[Photo adapted from Question Mark Sign On Hobson's Old Building, Corner Of Henry & Main (Honor, MI), taken by takomabibelot. Used with thanks.]
Posted in General | Tagged coping
By Ricky Buchanan on April 8, 2009
The Hoyden About Town blog has a fantastic post about Representations of Disabled Bodies in Logos.
The post is especially relevant to readers of this blog, and I recommend you read it carefully; view the logos and try to figure out the answer for yourself before scrolling further down to see what Lauredhel has concluded. Did you spot it?
And to all new readers coming here via Hoydens! There aren’t a lot of posts, so you may want to subscribe to make sure you catch new things.
- Ricky
Posted in Advocacy/Politics
By Ricky Buchanan on March 21, 2009
Long hair on the left side, short on top and on the right
I had my hair washed this morning! This might not seem like a big deal, but the last time it happened was several months ago. I feel absolutely heavenly.
Having my hair washed takes a lot of energy – partly energy for the physical movement involved, even though it’s done in bed, and partly energy to cope with the sensory input caused by all that’s done. I have 3/4 of my head in a crew-cut to avoid needing much washing. All my hair was a crew-cut until a year ago, but I’d had it short for nearly a decade and really wanted some long hair so I’ve let part of it get long. Continue reading “Happiness Is Clean Hair”
Posted in Personal Care | Tagged hair, hair washing, shampoo
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