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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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 May 30th, 2012%
 English: MLK Memorial, Washington, DC: Passing through the "Mountain of Despair" to the "Stone of Hope" (Photo credit: Wikipedia)
By Wendy Burnett
(This post was written for the June PFAM (Patients for a Moment) Blog Carnival, which is now live and being hosted on ChronicBabe.com)
“Life sucks, and then you die” – unknown
Normally, I don’t believe this, but lately I’ve been having a SERIOUS “life sucks” period. Things have been extremely difficult since I lost my job, insurance, and home in 2008; but we’ve been surviving, and there have been some pretty good things that have happened during the last 4 years so it wasn’t all bad.
Those of you who have been following this blog, and/or interact with me on Facebook, probably know that we’ve been renting a converted garage from friends since we lost our house. It’s not a great situation, we don’t have kitchen or bathing facilities down here (we have to go up to the main house to cook or bathe;) and it’s small, cramped, and dark. On the other hand; it’s close enough to my part-time job that I can walk to work, our roommates/landlords have been really awesome about letting us pay late if our checks aren’t enough to cover the rent that week and letting us borrow their car to get hubby back and forth to work, and it’s close to public transportation.
Financially, it’s been a real strain though . . . the job situation in the city is really bad, so there’s a lot of competition. For people like us; older (I’m over 50,) with spotty work records due to illnesses, etc.; there aren’t many options except part-time, low-wage retail work that doesn’t pay enough to live on; and even those jobs are almost impossible to find.
Hubby works for a retail crafts store that gives him an average of 11 hours a week. (In other words, he makes $50 to $75 a week, and it took 6 months to find THAT job.) This confuses me – why hire 6 people to split hours between when you could hire 3, give them 20 to 25 hours a week, and they MIGHT actually be able to eat? They’d still be part-time, so you still get he benefits of hiring part-time workers instead of full time ones, but your employees have a better chance at a semi-decent life and the turnover isn’t as high.
My job is a little better, since I average 25 to 30 hours a week, and I’ve been there 2 years so I’ve gone from minimum wage to $8.50 an hour. The problem is, it’s very physical so it keeps my pain levels higher than they are on days I don’t work; and it’s customer service, which is very stressful and also triggers my fibromyalgia. Even worse; we barely manage to cover rent, food and a few OTC remedies for my physical issues; so the financial stresses are HUGE; and because there’s no money to pay anything on debts from before I lost my $60,000 a year job, I’ve been garnished. Even if I was physically able to work more hours, it would make absolutely no difference to my income because every penny I make over $186 a week is taken away. (That does NOT mean I can count on $186 a week though. If I’m sick or hurt and have to call out, I don’t get paid; and there’s at least one week a month that I only get 16 to 20 hours, which works out to a take home pay of $75 to $150.)
So where does the starting over come into all of this? That’s complicated . . . Continue reading Starting Over is a B**ch »
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 30th, 2011%
By Wendy Burnett
Do you do everything you can to ease your fibro symptoms, and wonder why you don’t feel better? If you’re being exposed to the following substances, you may be undoing all the good you’re doing with your diet, medications and alternative treatments.
- Aluminum Hydroxide – An adjuvant added to vaccines to increase antibody production, aluminum hydroxide is a neurotoxin that has been connected to Gulf War Syndrome; as well as cognitive dysfunctions and motor neuron disease, which is virtually indistinguishable from classical amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s disease) except for the age of onset. It has also been linked to the destruction of, and damage to, motor neurons; which are responsible for telling your muscles to contract or relax, thus controlling movement; as well as for receiving sensations from the body.
- Aspartame – Aspartame (Nutra-Sweet) has been linked to headaches, including migraine; higher pain levels, cancer, brain tumors, tinnitus (ringing or buzzing sound in the ears,) noise sensitivity; decreased vision and/or other eye problems such as: blurring, bright flashes, squiggly lines, tunnel vision; decreased night vision; pain in one or both eyes; dry eyes; dizziness and unsteadiness; confusion and memory loss; severe drowsiness and sleepiness; Continue reading 8 Things You Didn’t Know Would Make Fibromyalgia Worse »
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 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 4th, 2011%
 Image by ex.libris via Flickr
By Wendy Burnett
The day three prompt for the Health Activist Writer’s Month Challenge (#HAWMC) is: “Dear 18 year old me. Write a letter to yourself when you were 18. Be sure to tell yourself what to do more of, what to do less of, and what you have to look forward to in the next few (or several) years.” Interesting, but not easy, so here goes.
Dear Me:
I remember what it was like for us, way back when. I just want to let you know that we’re going to be okay. Life is what it is, and there will be pain and sorrow, but there will be joy and love, too.
It’s been a very long time since we’ve been 18, and we’ve been through a lot of shit together, but always know that it’s all worth it. I don’t regret any of the choices we made, because they’ve put us where we need to be. Things are tough, but we’re tough too, and things will work out just like they always do. You’re still a big part of me, with your hope and optimism; just as I was always there inside of you, waiting for us to learn the things that made it possible for us to be who we are now. For the most part, I like who we’ve turned into, and without everything that’s happened, we’d be a different person.
There are going to be times when we’re dealing with some really nasty stuff that feels like the worst thing that could ever happen to us. I need you to know that as bad as it feels while we’re living through it, the worst things we’ve ever experienced have turned out to be the best thing that could have happened because they put us where we needed to be to move to the next stage of our life.
I don’t have a lot of advice to give, because I wouldn’t want to change the past, but I do have a few bits and pieces for you. First, we’re going to have to spend a LOT of time pretending to be something we’re not so that we can survive. Always hang on to who you REALLY are inside, even when surviving requires hiding what you believe or how you feel.
Don’t take it personally when X and his family treat you like you’re stupid or helpless, you know better, and they need to put you down to feel better about themselves. It’s not about you, it’s about them and their inadequacies and insecurities.
Take care of your own needs too, you deserve just as much attention and caring as anyone else, and there’s going to be a lot of times you’ll be the only one who CAN give you what you need. You’ll find the people you need, when you need them, but in between you’re going to have to be there for yourself.
Learn to say “NO!” I know how much you love taking care of the people you care about, that hasn’t changed, but you can’t do everything for them or you make them less than themselves. They have their own lessons to learn. You can’t protect them from the pain that teaches those lessons, no matter how much you want to; and you can’t force them to learn something they aren’t ready for either.
Life is both good and bad, and sometimes we don’t know which is which until afterwards. Remember to be grateful for the good bits, they’re what keep you strong during the bad times; and don’t forget to tell people how you feel, you may not get another chance . . .
This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J
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By wendy, on October 30th, 2011%
 Credit: Free images from acobox.com
By Wendy Burnett
When I was in therapy, my therapist used to tell me I was comparing my “insides” to everyone else’s “outsides.” (Thanks Ginny, it took me a while, but I finally get it.) Intellectually, I understood what she was saying, but I never really “felt” it until recently.
What gave me the push I needed was one day when I was still working fast food. One of the people I was working with said she envied me and wished she had a life like mine . . . My immediate thought was, “darlin, if you knew what my life is really like, you wouldn’t want it.” That’s when it really connected for me.
She only saw what I let her see, the cheerful, funny me with the great friends and strong marriage. Continue reading Are You Comparing Your Insides to Everyone Else’s Outsides? »
By wendy, on August 27th, 2011%
 by Tooley
By Wendy Burnett
I read this awesome post about The Loneliness of Pain and it really made me think about how isolated I feel sometimes. Even though I have people in my life that I CAN talk to about how bad I feel, I frequently choose not to for various reasons.
Have you done that? I’m betting that most of us have, either because we’re afraid that eventually these folks are going to get tired of “listening to us bitch,” or because we don’t want them to feel bad. There are more reasons, but most of them seem to boil down to one or the other of these two. Continue reading (Chronic Illness) = Loneliness + Isolation »
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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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