Author:
Nadine (On Twitter: @TheOnlyMinx)
Living with: Nadine (On Twitter: @TheOnlyMinx)
- Depression
- Fibromyalgia
- Chronic fatigue
- Immune Dysfunction Syndrome (CFIDS)
The Artist Known as The Minx, She's Chronically At Home
I have an alarm clock by my bed, even though I can count the number of times I've needed to use it on one hand in the last seven years. Many people may consider this to be a luxury, being able to sleep until my spirit or my cat awakens me, I don't think of it this way. In fact, it has taken me a long time to accept that I most likely will never work as a librarian again, even though I still have to pay off $13,000 in student loans for my Master's Degree in Library and Information Science. I'm one of many people with a chronic illness, mine is a combined mix of fibromyalgia and chronic fatigue and immune dysfunction syndrome (CFIDS), who can not work; so we adapt our lives to be the fullest possible while we are chronically at home.
My day starts slowly, as I urge my stiffened and achy body to get out of bed and eat breakfast. The temptation to stay in bed is strong-- as many nights are spent restless, or the muscle relaxers that stop the spasms in my neck and shoulders leave me very tired and mentally slow. I am lucky, my husband has already fed my cat, Zoe Luna, so she does not need to stand on my head to demand her breakfast. I stretch for a bit, then shuffle into the kitchen to make my "Super Extra Doctored Up Oatmeal". I also take my morning medications and vitamins, along with a can of Red Bull. The caffeine is a very much needed thing for me, otherwise I may fall asleep right into my oatmeal bowl.
I move along with my routine, cleaning up the kitchen and cleaning up myself. I dress very comfortably, generally keeping my clothes loose. Many days the feel of clothing on my sensitivity-heightened skin is torturous, so no itchy fabrics or items that are too tight for me. I'd prefer to be naked (maybe I can talk my husband into moving into a Nudist Colony, at least for the warm weather months), but then I tend to forget that I'm not wearing clothes and have had way too many close calls with Jehovah's Witnesses almost catching me "au natural".
Before I do anything further, I generally check-in with friends on Twitter. Social Media has been an amazing lifeline for me. I've been able to become friends, close friends, with so many Chronically Awesome people, and this has become so important. I can explain what fibromyalgia and CFIDS is to non-Chronically Awesome friends, using the usual "Imagine that you have the flu, with all of the tiredness and add to that shoulder pain so severe that you want to cry" metaphors, but there is truly no substitute for someone who really understand what you are going through. I then clean out my e-mail and check on various blogs. I also use this time to do some stretching and gentle yoga so my muscles loosen up a bit for the day. If the weather is good, I go outside for a walk. It's so important for me to get out of the apartment, see the world outside and catch up with my neighbors.
After that, I continue my work on organizing the apartment. This is in addition to the usual jobs of laundry, dishes, sweeping and so on. I am the biggest offender with regards to clutter, I will admit it. The main challenge is that I love to create art, all kinds of art, from jewelry making to mixed-media collage to ArtJournaling. All of this creativity requires a TON of supplies, with the collage being the worst offender. Just about anything can be used in a mixed-media collage piece, so I save lots of rather strange items like aluminum foil, old hardware, fabric, trim, paper of all kinds, magazines for pictures. I try to spend at least an hour or so each day, with breaks, in weeding and organizing my art supplies. Of course, there is also clothing to be tried on and sorted, since I have lost some weight over the winter (it wasn't by choice, I've called it The Doom and Depression Diet). Again, I try to do some work on these projects as well. With all of this stuff to try to get done, the temptation to go beyond the limits of what my body can do is very real. My saving grace has been an ordinary kitchen timer. By using this handy item, I have an audible reminder to STOP so I don't have to spend the next day in bed.
My afternoons are simple, I generally nap for 2-3 hours with Zoe. I try not to go longer than that, otherwise I won't be able to sleep that night. Dinner is generally simple, my husband and I dance around our tiny kitchen to make dinner together. On the nights that he has to work, I grab a frozen dinner, add some veggies to the entree and make a salad. I'm not a huge snacker, but I adore any kind of ice cream that has chocolate and cherries.
By the time dinner is done, I'm generally done too. I may watch some TV or play with the art applications on my iPad. To end my day, I do some reading. If the book is excellent, I will stay up to finish it, so I try to keep the really good page-turners for daytime enjoyment. Then it's time for to curl up with Zoe in the bend of my knees and hope for a good night's rest.
I vowed to myself, when I was forced to retire, to make the best out of my life; and I've discovered that it is a day-to-day work of art. I need to be in intimate communication with my body so I know what I can do with my day and when I need to rest. Keeping in touch with friends, both on-line and in real life protects me from the isolation that can be more debilitating than my pain.
Being Chronically at Home has been a learning process for me. I've had to find my limits, know when I can try to push them a bit and when I should pull back and rest. But by far, the best thing that I have learned is to be content with my own company. That is a lesson that would have taken far longer to learn if I wasn't Chronically at Home, and it was one that I never anticipated, but it's the one that I cherish the most.
[Original Post Location: http://whatthejules.com/index.php/chronically-at-home/chronicallyathome/57-homeblogs/298-the-artist-known-as-the-minx-shes-chronically-at-home]
My day starts slowly, as I urge my stiffened and achy body to get out of bed and eat breakfast. The temptation to stay in bed is strong-- as many nights are spent restless, or the muscle relaxers that stop the spasms in my neck and shoulders leave me very tired and mentally slow. I am lucky, my husband has already fed my cat, Zoe Luna, so she does not need to stand on my head to demand her breakfast. I stretch for a bit, then shuffle into the kitchen to make my "Super Extra Doctored Up Oatmeal". I also take my morning medications and vitamins, along with a can of Red Bull. The caffeine is a very much needed thing for me, otherwise I may fall asleep right into my oatmeal bowl.
I move along with my routine, cleaning up the kitchen and cleaning up myself. I dress very comfortably, generally keeping my clothes loose. Many days the feel of clothing on my sensitivity-heightened skin is torturous, so no itchy fabrics or items that are too tight for me. I'd prefer to be naked (maybe I can talk my husband into moving into a Nudist Colony, at least for the warm weather months), but then I tend to forget that I'm not wearing clothes and have had way too many close calls with Jehovah's Witnesses almost catching me "au natural".
Before I do anything further, I generally check-in with friends on Twitter. Social Media has been an amazing lifeline for me. I've been able to become friends, close friends, with so many Chronically Awesome people, and this has become so important. I can explain what fibromyalgia and CFIDS is to non-Chronically Awesome friends, using the usual "Imagine that you have the flu, with all of the tiredness and add to that shoulder pain so severe that you want to cry" metaphors, but there is truly no substitute for someone who really understand what you are going through. I then clean out my e-mail and check on various blogs. I also use this time to do some stretching and gentle yoga so my muscles loosen up a bit for the day. If the weather is good, I go outside for a walk. It's so important for me to get out of the apartment, see the world outside and catch up with my neighbors.
After that, I continue my work on organizing the apartment. This is in addition to the usual jobs of laundry, dishes, sweeping and so on. I am the biggest offender with regards to clutter, I will admit it. The main challenge is that I love to create art, all kinds of art, from jewelry making to mixed-media collage to ArtJournaling. All of this creativity requires a TON of supplies, with the collage being the worst offender. Just about anything can be used in a mixed-media collage piece, so I save lots of rather strange items like aluminum foil, old hardware, fabric, trim, paper of all kinds, magazines for pictures. I try to spend at least an hour or so each day, with breaks, in weeding and organizing my art supplies. Of course, there is also clothing to be tried on and sorted, since I have lost some weight over the winter (it wasn't by choice, I've called it The Doom and Depression Diet). Again, I try to do some work on these projects as well. With all of this stuff to try to get done, the temptation to go beyond the limits of what my body can do is very real. My saving grace has been an ordinary kitchen timer. By using this handy item, I have an audible reminder to STOP so I don't have to spend the next day in bed.
My afternoons are simple, I generally nap for 2-3 hours with Zoe. I try not to go longer than that, otherwise I won't be able to sleep that night. Dinner is generally simple, my husband and I dance around our tiny kitchen to make dinner together. On the nights that he has to work, I grab a frozen dinner, add some veggies to the entree and make a salad. I'm not a huge snacker, but I adore any kind of ice cream that has chocolate and cherries.
By the time dinner is done, I'm generally done too. I may watch some TV or play with the art applications on my iPad. To end my day, I do some reading. If the book is excellent, I will stay up to finish it, so I try to keep the really good page-turners for daytime enjoyment. Then it's time for to curl up with Zoe in the bend of my knees and hope for a good night's rest.
I vowed to myself, when I was forced to retire, to make the best out of my life; and I've discovered that it is a day-to-day work of art. I need to be in intimate communication with my body so I know what I can do with my day and when I need to rest. Keeping in touch with friends, both on-line and in real life protects me from the isolation that can be more debilitating than my pain.
Being Chronically at Home has been a learning process for me. I've had to find my limits, know when I can try to push them a bit and when I should pull back and rest. But by far, the best thing that I have learned is to be content with my own company. That is a lesson that would have taken far longer to learn if I wasn't Chronically at Home, and it was one that I never anticipated, but it's the one that I cherish the most.
[Original Post Location: http://whatthejules.com/index.php/chronically-at-home/chronicallyathome/57-homeblogs/298-the-artist-known-as-the-minx-shes-chronically-at-home]
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