By wendy, on October 5th, 2012%
 Moving Truck (Photo credit: netmonkey) http://www.flickr.com/photos/netmonkey/2749646355/sizes/m/in/photostream/
Moving sucks, and it’s even harder when you have a chronic illness, but it’s finally done (although it’s going to be a while before everything is unpacked and put away.) It wasn’t nearly as bad as it could have been, considering the fibro and all the stuff that goes along with that.
Moving is actually why I’ve been “missing” for so long. Between the packing, the actual move, and waiting for the cable company to get my net hooked up; I’ve been gone for a while, but I think it’s going to end up being worth it . . .
I’m loving the apartment and having so much more space, but I think the best part is just being able to cook and take a bath any time I want . . . The cottage didn’t have a kitchen, and only had a half bath, so for cooking and bathing we had to go up to the main house, and sometimes that just wasn’t an option.
Hubby and I both work nights, so we’re up at weird times of the night, and since our roommates kept more “normal” hours, a lot of the time I’d want to cook or take a bath when they were asleep. Now if I want to take a bath or boil an egg after I get home from work, I can, and I don’t have to worry about waking anyone up while I do it.
Of course, there are disadvantages to moving out, too. For one thing, getting to work now involves at least an hour and a half to two hours on public transit, instead of a 15 minute walk. Between getting to the bus stop, then walking to the train and back out to the other bus, I actually walk further than I did from the cottage to work. (The walk from the bus stop to the apartment is almost as long as the entire walk from work to the cottage was . . .)
The biggest disadvantage, at least as far as I’m concerned, is having to deal with the utilities and all. All that stuff was in the roommate’s names, so all I had to do was hand over the rent, and they took care of the rest. Now I’m the one that has to make sure everything gets paid when it’s supposed to, and make the calls when something screws up.
Like everything else in life, it’s a trade-off. There are advantages and disadvantages, but overall, it’s mostly a positive experience, and I’ve learned a lot about managing a move without triggering a flare. I’ve learned that:
- Pacing is the key to minimizing the physical stress of a move. If you can afford it, hiring a moving company to come in and handle the move for you is ideal. They’ll even do all the packing, for an extra charge. (If you can only afford for them to load, move, and unload; it’s still more than worth the cost to avoid having to lift and carry all that stuff.)
- If you can’t afford to hire someone, recruit all the friends and family you can. Although more than two or three people can be hard to coordinate, it’s way better than having to spend the week after the move in bed recovering. Coordinating will be easier if you stay in the house and direct what goes out when; put one or two people in the truck to supervise where things get loaded; and everyone else packing, fetching, and carrying.
- Start packing early! As soon as you know you’re going to be moving, start packing things you don’t use very often. I started the packing process in May, even though I knew it would be months before we moved. Out of season clothes, holiday decorations, knick-knacks, books you don’t read regularly (like seasonal cookbooks,) etc. can all be packed months in advance.
- Packing is an ideal time to throw things away. You’re going to have to touch everything you own to get it packed; so if it’s broken, worn out, doesn’t fit, or isn’t used anymore, throw it away and save yourself the work of packing and unpacking it.
- Label everything! This is one that most of us slack on, because it’s a pain to do; but it makes a huge difference when you get in the new place. “Miscellaneous” is not a helpful label! Useful labels include the room the box belongs in, plus the general category of things inside (books, dishes, winter clothes, etc.) and any specific items you’re likely to want within the first week or so. For things like toothbrushes, towels, the bedding you’ll need to put the bed together, and other things you’ll need right away; add “Open First” to the other labeling on the box. I spent three days looking for my cookie sheets because they ended up in a box that only said miscellaneous on it, and were buried under a bunch of random bits and pieces.
- When writing the contents on your boxes, makes sure that you put it on at least two sides, not just on top. If the only place you put your label is on top, you’ll have to constantly rearrange stacks of boxes to find what you’re looking for, because you’ll only be able to read the label on the top box.
- Medications, hot packs, heating pads, and anything else that is used in treating your illness should all be packed together, no matter which room they belong in. These boxes should be labeled on all four sides, and the top. Mark them as “Open First;” keep them separate from the other stuff; and even if you’re hiring a moving company, make sure you have these boxes in your possession at all times.
- Pack the most important stuff last, and either load it separately, like in the car, or make sure it’s the last thing to go on the truck, and the first thing to come off.
- Set up a staging area for the stuff that has to be unpacked immediately. Whether it’s one corner of the living room, or a separate section in each room, you’ll want the stuff you’re going to need right away somewhere you can find it.
- If you’re renting a truck, choose at least one size larger than the rental company says you’ll need. We were living in one room, so I rented the size U-Haul said would handle a one-bedroom apartment in one trip, and we had to make two, plus there was still stuff that didn’t fit.
- Get at least twice as many boxes as you think you’ll need, and lots of packing tape. You can always throw away extras, but if you run out, you’re screwed. You won’t have the time or the energy to run out and get more right in the middle of loading and moving things.
- Allow plenty of time for all stages of the move. It always takes longer than you expect, even for healthy folks; and those of us with chronic illnesses have to allow plenty of time for rest breaks. Remember that no matter how well-planned and well-organized a move is, there are always going to be unexpected delays.
Bonus tip: If you have clothes that need to go to the dry cleaner, drop them off the day before the move, and pick them up the day after. It will keep you from having to pack them, and save a bit of space in the truck, too.
Finally, do some research. There are tons of helpful articles and checklists online with tips to streamline and simplify the process, and help you make sure you get all the stuff you need to take care of done. I’m including some articles below to help you get started.
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If you’ve found the content on this website helpful, and you can afford to, please consider making a contribution to help keep the content coming and the site online.
By wendy, on July 3rd, 2012%
By Wendy Burnett
I wish I’d had this book years ago! When my husband and I met, I was in a period of remission and low stress, and even though I did my best to explain what it would be like if (when) that ended, it was still a shock for him when the flares started again.
I didn’t have the words (or the knowledge) to be able to give him a picture of what the partner of someone who is chronically ill goes through. This book is unique, because it’s the only one I’ve read that is co-written by the caregiving spouse (and even better, that spouse is the husband. Although that situation is actually pretty common, it’s much less common to find a resource that provides the perspective of the male caregiver.) It’s a great resource for BOTH partners; because it gives the patient insight into their partner/caregiver’s experience; as well as providing support, validation, and acceptance for the caregiving spouse.
A Husband, A Wife, & An Illness: Living Life Beyond Chronic Illness
by Dr. William July and Jamey Lacy July is a must have resource for any couple facing a debilitating chronic illness. Not just a “feel good” book, it’s full of practical tips and advice for both the caregiving spouse and the ill partner. Part 1 is written by William, and is full of chapters like: Continue reading A Husband, A Wife, & An Illness – Review »
By wendy, on February 29th, 2012%
By Wendy Burnett
Have you lost friends because of your chronic physical or mental illness? I have. Actually, I’ve lost quite a few friends since I got sick, for a lot of different reasons, but the only ones I really regret are the ones I’ve lost to chronic illness burnout. Those, I could have prevented, if I’d known back then what I know now.
 Chronic Disease (Photo credit: tamahaji) I used to have a very small group of friends that I talked to, and everyone else got the “everything’s fine” act. There’s not anything wrong with giving people the act, if they’re only acquaintances or coworkers, and they don’t NEED to know what’s going on with you, the problem actually comes in with the people you really talk to. We all need someone to talk to when we’re having a high pain day, or the depression is so bad that all we want to do is curl up and die, but loading it all on just a few close friends can be a bad thing for them and for you.
Whether you have a physical illness, a mental illness, or some combination; if you only share your pain and negative feelings with a few people, there’s a danger that it will be too much for them. Overloading your support network can cause them to have to pull back so that they can take care of themselves, especially if that is all you ever talk to them about. This is not selfishness on their part, it’s self protection. You HAVE to deal with your chronic illness every day, but your friends can get burned out if you lean on them too heavily. (We can get burned out ourselves, too, but it belongs to us, and it’s a lot harder to step back from when it’s yours.)
Don’t freak out!
I’m not saying you can’t tell your friends how you feel, or that you’re having a hard time. What I AM saying is don’t depend only on one or two close friends for all of your emotional support. Everyone has their own crap to deal with, and sometimes they can’t deal with your stuff too; Continue reading How to Avoid Burning Out Your Support Network »
By wendy, on February 2nd, 2012%
By Wendy Burnett
I hate the “court shows” that have taken over daytime TV, but I get stuck watching them on a regular basis because my husband likes them . . .
That disclaimer being made, Judge Judy happened to be on my TV the other day while I was getting ready for work. The case doesn’t really matter, it was just another group of folks making themselves look stupid until Judge Judy came out with something to the effect of:
“if he was able to go pick up money at Western Union, twice, he doesn’t sound very disabled to me!”
This is a perfect example of the total ignorance of what a disability IS, and the complete lack of understanding that people with disabilities face every day from the “healthy” population.
Does Judge Judy perhaps think that if we are not totally confined to our homes, we don’t qualify as disabled? Has she forgotten that even those among us who use a wheelchair, and therefore are VISIBLY dealing with some form of disability, are still able to leave our homes? Continue reading Judge Judy and (the Lack of) Disability Awareness »
By wendy, on January 20th, 2012%
 Image by blmiers2 via Flickr By Wendy Burnett
When you have a chronic illness like fibromyalgia, every season has its challenges, but I think winter is the hardest to cope with. Not only is it cold, which tenses up muscles and increases pain levels; but there are so many other issues as well. Basically, winter with fibro sucks, and here are just a few of the reasons (if you have more, leave me a comment and I’ll add them):
- It’s cold, and frequently damp
- The weather changes all the time, which means barometric pressure changes and more aches and pains
- Shorter days and lower vitamin D levels that increase depression
- Being cooped up indoors without being able to open windows and doors increases exposure to indoor molds, toxins, and contagious illnesses; increasing allergic responses and physical stressors
- The weather makes exercising more difficult. Between higher pain levels and less ability to exercise outdoors or get to the gym we can slip into a vicious cycle of exercising less, which increases pain levels even more, and makes it even more difficult to exercise.
So how do we deal with all this “stuff” and keep our health from slipping? There are a ton of ways to minimize the winter “blahs,” but the most important one is: don’t give up! You may need to change some routines, but winter doesn’t have to be a miserable, depressing experience. I try to look at it as a challenge to my ingenuity, looking for new ways to get where I need to be and accomplish what I need (and want) to do.
Winter Survival Strategies:
Dealing with the cold (and damp): Layer, layer, layer! Several light layers of clothing, topped with a blanket; will keep you more comfortable than wearing one heavy item. Layering your clothes traps air between the layers and increases the amount of insulation they provide. If one pair of socks isn’t keeping your feet warm, add another light pair instead of taking off the ones you’re wearing and changing to a heavier pair.
If you’ve read much of this blog, you know how much I love hot packs . . . They’re even more wonderful in cold weather. Even if you don’t have a specific ache that needs heat (not likely, but it happens,) putting a hot pack in the chair or bed with you will help you stay warmer all over.
Flannel sheets are warmer than smooth cotton blends, and an electric blanket or mattress pad can make a huge difference in your ability to stay warm at night. They also provide gentle, all-over heat for the more general aches that tend to come with winter weather.
Shorter days and depression: Using full spectrum light bulbs will help, and so will adding a vitamin D supplement (low vitamin D increases depression, and with shorter, gloomier days our body doesn’t make enough.) Adding B vitamins can also help, either through supplements or more veggies.
Isolation is something else that can increase depression levels, and winter weather frequently keeps us at home. Finding online support through Twitter, Facebook, or forums can make a huge difference.
Being cooped up indoors: Adding a few potted plants will increase indoor air quality (if you have pets, make sure they’re safe if they get nibbled or keep them where your pets can’t munch them.) English ivy is an excellent plant for reducing indoor toxins, and it’s pretty easy to take care of too. There are many more options as well, and Treehugger has an excellent article on the subject, based on a NASA study on which plant is best for various pollutants.
To reduce the chances that I’ll catch something, I make sure I wash my hands regularly (with plain soap and water, antibacterials don’t help against viruses and increase the number of resistant bacteria,) get plenty of vitamin C and eat more onions and garlic. This last one is a bit controversial, because I also avoid vaccines like the plague. (The ONLY times in the last 15 years or so that my husband and I have actually had the flu were the two years we got a flu shot, and I’ve only gotten a cold once.)
Exercise: This is the toughest one for me because most of my exercise comes from walking to work, and in the winter that’s harder to do. If it’s too cold, or it’s raining, my husband and roommates make sure I have a ride, so I have to get a bit more creative. I’ll frequently do a couple of laps of the store I work at, or, on bad days, just get up and walk across the room a couple of times every hour or so. There are also videos on YouTube for fibromyalgia exercises that can be done while sitting down, which is especially helpful during flares because they’re very gentle and put less stress on your body.
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By wendy, on November 24th, 2011%
 Ed Schipul via Flickr By Wendy Burnett
Day 13 – The Health Activist Writer’s Month Challenge Prompts (#HAWMC) for today is “Open a book. Point to a page. Free write for 10-15 minutes on that word or passage. Post without editing if you can!” When I opened my book, the word I got was “acceptance,” so here goes.
The first step toward acceptance of a chronic illness is admitting that I’m powerless to make that illness go away, or to force my life back to the way it used to be. If I deny that I’m ill, or refuse to admit and adjust to my new limitations, I eliminate possibilities from my life.
This doesn’t mean that I’m powerless to make my life with illness better, or that I have to give up on being happy. Once I’ve admitted I can’t make it go away, and that my life is different; I can look for ways to reduce symptoms and find new ways to do the things I don’t want to give up.
Denial is a “stopper” though. Continue reading Accepting Chronic Illness – It’s NOT “Giving Up” »
By wendy, on November 24th, 2011%
 martha_chapa95 via Flickr By Wendy Burnett
It’s Thanksgiving, what are you thankful for?
Living with chronic illnesses can make it very difficult to find your gratitude sometimes, and we all struggle with that on a regular basis. One of the things you learn eventually is that there is always something to be grateful for . . .
By wendy, on November 24th, 2011%
 By NJR ZA (Own work) [CC-BY-SA-3.0 (www.creativecommons.org/licenses/by-sa/3.0) via Wikimedia Commons
By Wendy Burnett
It’s that time of the year again. Thanksgiving, Christmas, cooking, shopping, decorating, parties and other holiday activities can lead to over-doing things. Throw in the expectations (and demands) of family and friends and you get higher stress levels, too. Add it all together, and you get the perfect recipe for a serious flare, which can totally ruin your the season for you.
It doesn’t have to happen though. There are dozens of ways to cope with the holidays, and I’ve collected five posts and articles full of helpful tips for simplifying your celebrations, pacing yourself, and coping with the physical and emotional stresses of the season. Continue reading Top 5 Posts: How to Prevent Holiday Flares »
By wendy, on November 7th, 2011%
 Image by ParkerSav via Flickr
By Wendy Burnett
The Health Activist Writer’s Month Challenge (#HAWMC) continues with the day 7 prompt: “Case of the Mondays. Write about something that gets you down, burns you out, or makes you sad. Purge it in a blog post. Turn it around at the end. Tell Tuesday why you’re ready for it.”
Mondays for me come more than once a week. Actually, I have a “Monday” anywhere from 3 to 6 days a week, because every day I have to go to work at the “awful place” is Monday.
If you haven’t already figured it out, I hate my job. I would literally prefer that someone shoot me than have to go into that place, but I’ve missed a grand total of one day in the last 18 months. I don’t have a choice, I have to work, or we don’t eat . . .
I work retail, part-time, because retail stores won’t hire full-time workers any more (and I couldn’t survive working full-time at the awful place anyway.) I spend my evenings standing on my feet slicing meat in a deli for anywhere from 4 to 8 hours at a stretch (usually after walking about a half mile to get there,) then walk home. 
I actually don’t mind waiting on customers and doing the cleaning when I close. Honestly, on the nights I actually have time to get all the stuff I’m supposed to do done, I enjoy the job. My customers are mostly nice, the regulars will come by and just kind of “hang out” for a few if I’m not busy; and the people I work with are pretty cool, too. Even my department manager is a sweetheart, and does all he can to not give me a schedule I can’t handle.
The issue is corporate, as usual. They demand more work than any THREE people could do in the amount of time they give us to do it in, then raise hell if it doesn’t get done. (I swear, I think it must be a requirement to get a lobotomy to be promoted to corporate. If it wasn’t, those people would have to know it’s not physically possible for one person to do what they expect.)
Let me give you an example. We’re allowed one person on duty at a time, and are expected to put out stock, wait on customers, make party trays, slice meat for the sub sandwiches another part of the department makes (on busy days, we go through about 40 pounds of ham and 60+ pounds of turkey, which all has to be sliced and weighed out into individual half-pound packets,) help out in bakery and making prepared food, put away deliveries and rotate stock, mark down things that are approaching the last day of sale, scan out outdated food, keep everything cleaned, set up new displays and reset all the stock every time they decide to move things around, and make sure we always have samples out.
We’re open 13 hours a day, and we’re allowed a total of 13 hours a day labor, so they expect us to also do all of the “closing” cleaning while we’re actually open. Now I don’t know about you, but I haven’t figured out how to be in two different places at the same time. Continue reading Moody Mondays – The Worst of It . . . »
By wendy, on November 6th, 2011%
 Image by bayareabaw via Flickr
By Wendy Burnett
Oh, well, looks like yesterday is going to have to be one of my “get out of post free” days. Between the pain levels and the Vicodin hangover (I don’t take that crap very often, so it can have some odd effects,) I slept until I had to get ready for work. I’ll probably make it up later though, because the prompt is pretty interesting.
The day 6 prompt for The Health Activist Writer’s Month Challenge (#HAWMC) is “If I could do anything as a Health Activist… Get aspirational. Money is no longer an option. What is your biggest goal that is now possible? How could you get there? Now bring it back down to size. How much of this can you accomplish now, in a year, in five years?”
This is gonna be fun. I’ve been thinking about all the things I’d like to do if I had the money for a WHILE and a lot of it is just going to be writing it all down, so lets get started.
- First, I’d quit my job at the awful place so I could focus on my writing and research.
- I’d set up an actual office/studio space so I’d have somewhere I could do audios, videos, and decent pictures for my writing and get away from the constant interruptions while I’m trying to write.
- I’d start working on that TV show from day 2 of the challenge.
- I’d start the newsletter that’s been waiting for me to be able to afford the autoresponder for it, upgrade my hosting plan to provide more functionality for my site, upgrade my free accounts on places like HootSuite and Timely, get rid of all the annoying affiliate links on my site, and do some advertising.
- I’d do more experimentation and research on alternative treatments, and get certified as both an herbalist and an aromatherapist.
- I’d add resources to the website, like scheduled chats on various topics with someone actually there even if I had to pay them, beginner’s guides for the newly diagnosed, and whatever else we could come up with that would be helpful.
- Finally, I’d hire some other members of the chronic illness community to do things like find useful links and research, contribute content, and do graphics and website upgrades/maintenance. I know that there are thousands of people out of work, but I think that part of my responsibility as an activist is to help our OWN community first, and only go outside for services if I can’t find someone within the community to do what needs done.
I know from experience that with the flexibility to work from home, when symptoms allow, most of us are able to do a lot more than we think is possible. In addition, the opportunity to be productive and contribute something helps immensely with the emotional stresses of being sick all the time. It’s more complicated to have to manage multiple employees who need flexibility, rather than a single employee that can do the whole job; but that single employee has a chance at a traditional job, where the others have no hope of being hired by a company that only cares about getting the job done as cheaply as possible.
Now for part two . . . what CAN I do with the resources I have available? In the next year I can continue to add more content and develop resources for the community. I especially want to add at least one article on how to tell whether a “member” site for various illnesses is a genuine forum for helpful resources or a “shill” site sponsored by someone with something to sell. I can update my “links” pages, and I can go ahead and start the newsletter I want to do without the autoresponder.
In the next five years? I have no idea, other than more of the above. Most everything else requires money, and I have no way of knowing whether the financial situation will change enough to allow me to do any of those things.
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
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"The moral test of a society is how that society treats those who are in the dawn of life . . . the children; those who are in the twilight of life . . . the elderly; and those who are in the shadows of life . . . the sick, the needy, and the handicapped."
---Hubert Humphrey
Welcome to the new home of Sick and Tired of Being Sick and Tired. I hope you'll enjoy the changes, and the new resources I'll be adding as I have time to work on the site. Things will look a bit odd while I learn where and how to modify the appearance, so please bear with me.
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