Some days I feel so good I almost forget about the battle happening inside my body. Today is not one of those days. Today I woke up feeling like yesterday’s birthday pinata, cracked and beaten. It seems my body is reminding me who is boss here, and unfortunately, it isn’t me. A perfect time for such a reminder as I plan a vacation adventure with loved ones. RA (rheumatoid arthritis) steps in and says ‘hey don’t forget about me.’ Oh don’t worry, I won’t, you’re coming along for the fun, whether I like it or not. I just hope my traveling companions are as willing to compromise with you as I have become.
Life with RA sometimes feels like an impossible algebra equation, with far too many factors to weigh and things to consider to predict the outcome. Will a busy day and a few drinks tip the scale from okay to why me? Perhaps, did I factor in the weather, hormones, that seriously crappy meal I just ate, and the conversation I can’t stop obsessing about? If not, the whole body seize might be surprising. To be honest, this one is not. I definitely helped create this bad day. Recognizing the part I play will hopefully help my vacation be full of more good days than bad.
So how did I get busted and battered this time? Well, it all starts with pushing back my infusion because I caught a cold. Not taking the blame for that bit, it is what it is, I had to shake the cold before stepping into the arena to knock out my immune system. Nobody wants pneumonia. So, I pushed my infusion back a week. No biggie. Okay, maybe a little biggie. Had I behaved myself, I might be just a little stiff and achy right now. I didn’t.
Instead of taking it extra easy, knowing my meds were overdue and I am just now getting over the cold I delayed them for, I carried on like normal, doing whatever I wanted. Big mistake, I do wish I could take it back.
Instead of being extra gentle with myself I just spent two busy, late nights with friends and loved ones. Days full of activity, shopping, and housework, nights filled with bad food choices and alcoholic beverages. As that pretty much describes my vacation plan (minus the housework) I’m realizing I may have to adjust the plan a little.
I’m going to have to behave and pace myself, or risk spending most of my vacation in a painful, grumpy state. Something I already knew and have thought a lot about, as I prepare to see some of the world with a fun and busy group of people. I’ve even spoken up about my limits during the planning stages, making it clear, I hope, that I can’t go all day and all night and still have a good time tomorrow. Today is my personal reminder, I also can’t eat and drink whatever I like and continue to have a good time.
Noted, all things in moderation, especially alcohol and cheese.
Today may be a bad day, but it is a good day to think about those vacation plans. A great day to plan times to rest, times to behave. A perfect day to look at that 10 day itinerary with my limitations solidly in mind. To plan down-times before excursions I know I won’t want to miss, to consider which days I might be best to take the sober friend role, and which nights I need to get to bed at a reasonable hour so tomorrow isn’t spent in a painful fog, always searching for the next rest stop, or worse, unable to leave the room.
It’s also a perfect day to look at the mobility aids I’m going to need to enjoy this trip, as my feet remind me what happens when I walk as far as I think I can. As much as I didn’t want to be, I’ll be the way too young to need a cane/walker lady everyone is staring at and maybe sometimes the chic in a wheelchair, because I’m not missing that ghost tour. Now if I could just figure out how to keep the weather stable and lovely for the entire trip, I just might get to do everything on that new, more reasonable trip bucket list.
What helps you have a good time when you travel? Do you plan for success or wing it and pay the price? What remedies and items do you bring along when you travel to keep RA symptoms in check? Give me your best travel tips, I’ll take all he help I can get.
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It’s that time of year once again. Time to welcome in the new year and resolve to make big changes in the coming year. As you consider all the things you might wish to change, your weight, your relationship with food, exercise habits, letting go of that bad habit, I invite you to think bigger. Why chose to change one thing, when you can change everything by making a commitment to taking steps toward better health? So, skip that big resolution, and set intentions this year. Intentions for better health, for healing, for happiness. Intentions that will lead to a better you at the end of 2020. Not sure what to focus on? These five little shifts are guaranteed to lead to a healthier you.
Nourish your body
The first and most important intention to set is an intention to nourish our bodies. Please don’t run out and purchase the latest fad diet book for this. No going to extremes, no starvation, no foods you can never touch again, just a little simple shift. Take a good look at what you are eating now. Are you getting a rainbow of fruits and vegetables each day? Are you filling up on empty calories with foods high in sugar and refined carbohydrates? Don’t feel bad, most of us are, in fact, that is the standard American diet, low in essential nutrients, high in sugar and fats. Let’s shift that standard a bit.
Include fruits and veggies with every meal. Easy right? I promised it wouldn’t be tough, I meant it. Those fruits and vegetables are loaded with the nutrients our bodies need to run smoothly; resources autoimmune bodies tend to run through very quickly with all the extra side projects they create for themselves. All that self-destruction and rebuilding takes resources. Resources you can get from a well-balanced diet. Next time you reach for a snack, reach into the crisper instead of the pantry.
The next step we are going to take to nourish our bodies is also a very easy one, add vitamins to the daily routine. A good multivitamin, calcium, and vitamin d are all highly recommended for adults, women especially need to be sure they are getting enough calcium and its helper D to ensure bones remain healthy and strong as they age. Others that are commonly recommended for people with overactive immune systems that really burn up the nutrients are magnesium, vitamin B12, and vitamin C. All of these are essential for healthy immune system function, making them twice as important if your immune system tends to overdo it.
Be sure to always discuss any supplements you wish to add to your routine with your doctor. With your doctor’s help and a blood test to check for common deficiencies, you can better target the nutrients your body is missing.
The final step we need to take for nourishing ourselves is the easiest of them all. Drink water. So simple, yet many people do not get the recommended 2+ liters a day. Making up 60% of our body by weight, and carrying out many important functions, it is easy to understand why dehydration can cause serious problems in our bodies. Water is needed to keep cells healthy, lubricate joints, regulate body temperature, and eliminate waste from our bodies, just to name a few of its important tasks. So up that daily water intake. Skip the soda and opt for water instead. Your body will thank you.
To recap intention one, nourish your body, you’re going to do three simple things. Eat your fruits and veggies, take your vitamins, and drink water. Sound doable? Good, we’re ready to tackle the next intention, moving!
The second thing we need to do to have happier, healthier bodies is to commit to moving them, every day. Yes, even on the days you feel like you can’t possibly get out of bed. I know it is tempting to lay still as a statue to keep joints from crying out. Unfortunately, playing statue too often can lead to joints freezing up and holding that pose long after you are done pretending to be made of stone. Joints, muscles, and even bones require movement everyday to stay healthy and strong. Exercise also increases energy and stamina, as well as providing pain relief through the release of endorphins. So, get moving! Again, there is no reason to go to extremes here, as a matter of fact, if you have health issues of any kind, slow and steady is the way to go when it comes to exercising. No need to join a gym or even leave your bed, check out these great exercises for some ideas. Take a walk, do some yoga, chair aerobics, ride a bike, whatever floats your boat. You may be surprised how great daily movement can make you feel.
As always, check with your doctor before starting any new physical activity. Working with mobility limitations, cranky joints, and body parts that just don’t cooperate? Seek out a qualified physical therapist to help develop and modify exercises so they fit your body. So, check with your doctor, make an appointment with a physical therapist, find a few exercises you can commit to, and set an intention to move that beautiful body every single day.
Get Enough Rest
Sleeping when you have chronic pain can be nearly impossible. That is precisely why the next area we need to focus on is not sleep, but rest. Yes, this includes sleeping, but let’s face it, due to the restless nature of sleep in chronic illness, we’re also going to need to find other ways to recharge. So, we will set intentions to rest more. The first, and maybe most important thing I want you to try is sleeping when you are tired. Stop pushing through the fatigue, go take a nap. Stop putting off bedtime to watch one more episode, close those gorgeous eyes and rest when your body is asking for it. It really is the most likely time to catch a few z’s. If falling asleep and staying asleep is a challenge, you are not alone, that is the number one complaint of autoimmune patients. Check out these tips for getting a better night’s sleep.
Since sleep is elusive and we are not likely to get enough, resting during the day is going to be necessary to replenish our exhausted bodies. This does not mean crawl in bed for the day and stay there until you feel refreshed. Remember, frequent movement is really important, but so is frequent rest. Build downtime into your day. A great general rule of thumb, for every hour of activity, you need 15 minutes of recovery time. This may mean changing the way you do things a bit. Instead of doing chores or working until you are completely toast, try taking a 15-minute rest break every hour. Have a seat, drink some water, read a book, meditate, whatever helps you feel calm and relaxed. This rule applies to seated work and hobbies as well. If you spend 2 straight hours hunched over that crochet project, you will pay for it later (ask me how I know). Set a timer, take a stretch break, get up and move if you’ve been sitting. With a little bit of attention to taking breaks and sleeping when we are tired, our bodies will be much more rested and agreeable.
Ask for Help
The next intention we need to set is probably going to be the hardest to stick with. It requires a shift in how we think and behave, a combination that is never easy. It’s time to think about when we ask for help and when we don’t. Time to be honest about our needs, and that starts with being honest with ourselves. Stop pretending to be fine, you aren’t, it’s okay that you aren’t. It’s okay to let other people know that as well. Some of them deserve to know. Your family can’t and won’t help you if you never let them know you need help. Personally, this is one of my biggest roadblocks. Admitting you need help requires a couple of things that many people struggle with, being vulnerable and recognizing our limitations. Some of us are particularly bad at recognizing our limits.
Take a few minutes to write down the tasks you do each day/week. Now, split them into two lists, in list one write down all the things that are simple and achievable for you most days. In list two, write down all the tasks that are a struggle. Next, add to that second list anything you have given up doing because you just can’t, that isn’t already being done by someone else. The second list is obviously the “need help” list. It’s probably also the longest list.
Now, before you panic, thinking there is no way I can ask someone to do all these things for me, take a deep breath and relax, we’re going to break that list down a bit more. We’re going to make three lists from that “need help” list. First things first, go down through the “need help” list and move every single household chore onto a new list, the “things we all need to do” list. Unless you live alone, there is really no reason at all that these tasks should fall to only you. In fact, go back to that list of things you can do, any household chores on that list? Move them to the new “things we all need to do” list. Now go down through the household chores list and put a check-mark or your name beside the ones you can easily do, or do with a little help. Distribute the rest among the other people who live in your house. And, just like that, your life just got more manageable. Now let’s see what we can do to help get the rest of that “need help” list under control.
The next list we’re going to create from our massive “need help” list is a list of self-care tasks that we struggle with. Bathing, dressing, brushing our hair, all of these things tend to be more challenging with chronic illness. You are going to need help with some of that. Move it all to a new, daily self-care help list. Again, don’t panic, I am not about to suggest you ask your spouse to start dressing you every day! I understand more than most how much you value your independence and do not want to have to rely on others for seemingly simple things like bathing. This is where living in an age full of modern conveniences and brilliant inventions is really going to make all the difference. For every task on that list, there is a tool to make it easier. Grab that list and take to the internet, search for assistive devices for each task on the list. You’re going to be surprised how many are out there. For a great starting point, check out our gift giving guide, loaded with great tools for getting things done with limitations.
At this point, you should have your original list, a list of household chores, and a self-care list. Now we are ready to make the final list, the list of things we actually need to ask for help with. Hopefully, now that you’ve eliminated the stuff everyone is responsible for and found tools to help with the things you are responsible for, that list is going to be pretty small. Move everything not on the other lists, and any self-care task you couldn’t find a tool for to this list. These are the things you need help with ask a family member or friend, hire it out, or just take it off your plate, those are your options.
Now that you’ve thought about all the day to day stuff, it’s time to set intentions for asking for help as needed. Time to think about how you approach the bad days and consider how much being honest and asking for help could improve them. Stop pretending to be okay and putting on that brave face. Be honest. Ask for help. Say no when you just can’t. For your health and well-being. This is a lifelong battle. Don’t burn out and become disabled because you are too stubborn to recognize your limits and ask for help. Everyone needs help from time to time.
Be gentle and Kind to Yourself
The last and possibly most important intention for healing we are going to set this year is to be kind and gentle to yourself. Be forgiving of those limits. Allow yourself to be not okay sometimes, don’t wallow, there is no need to wallow, but don’t keep that brave face on all the time. It’s okay to be vulnerable. It’s okay to be frustrated, it’ not okay to take that frustration out on yourself. Allow yourself the space and understanding to be a little broken. Forgive yourself for the days when you just can’t get up and exercise. Forget the garbage you chose to eat yesterday, it’s in the past. Let yourself off the hook for all the times you’ve failed. Promise yourself you’ll do better next time and mean it. Our bodies are already attacking themselves, no sense in adding to the barrage. Treat yourself with the kindness and understanding you give those you love. With loving intention and gentle care, our bodies will be more capable of doing the things we ask them to.
With a few small shifts in the way we care for ourselves and the expectations we put on ourselves, we can make 2020 the healthiest year yet. I’m ready for a year of healing. Who’s with me? What steps are you going to take to be a healthier you in 2020? Drop your answers in the comments. Looking for support and understanding on your healing journey? Join the tenaciousWE community.
It’s almost here! The most wonderful time of the year, or so the song says. If you have rheumatoid arthritis it may look more like a danger laden obstacle course than a time for joyous celebration. Filled with stress, commitments, and expectations, Christmas is by far the most challenging holiday. Between the search for the perfect gift, the energy needed to turn your home into a magical Christmas wonderland, the cooking, cleaning, baking, wrapping, holiday parties…it can all become a bit overwhelming for those of us who have limited resources for getting it all done. Whether that be money, time, energy, or all three, it can leave an RA warrior feeling anything but triumphant. While we can’t cancel this busy holiday (or can we?) there are a few ways we can make it more manageable.
First and foremost, you’re going to have to pace yourself. Rome wasn’t built in a day, neither should the monumental undertaking that is Christmas. One of the bigger challenges we face as RA warriors is a limited amount of energy and strength to tackle projects. Recognizing and respecting this fact will go a long way toward making the holiday less draining. The biggest key seems to be not trying to do it all, whatever IT is, in one day. So, wrap a few gifts, then walk away, take a break, go prep some food. Varying the task is always going to make our bodies happier than chaining ourselves to the giftwrapping station or kitchen for half the day. So, switch it up, take your time, and remember to rest and stretch. This is a cross country race, not a sprint, you’re going to need to pace yourself to cross the finish line.
Crossing the finish line is going to require a lot of carefully planned work. Some of which, you really don’t have to do. Wait, what? There are things that don’t have to be done you say? Well then why am I doing them? Great question, why are you? Take a few minutes and jot down your Christmas to do list. Now, give it a good long look. Are there things on the list that aren’t really necessary? Anything that can be skipped? Is there something that you know is going to take every ounce of energy you’ve got? Cross it off and move on. Yep, I said it, you don’t have to get it all done. If you can’t do it, don’t.
If you can’t skip it, delegate. Let’s face it, as much as we’d like to just cross off that entire to do list and crawl back in bed, Christmas is coming, ready or not. There are things that are going to have to get done. You still don’t have to be the one to do them. As a holiday that is entirely about family, giving, and sharing love, there is really no better time to tackle something as a family. Delegate some of those challenging tasks. Recruit a family member to help with the wrapping, cleaning, and decorating. Invite them to join you in the kitchen to bake and prep holiday meals and treats. Remember, many hands make light work. No one ever said you have to do it all to get it all done. In fact, you don’t, delegate and move on. And don’t feel bad about asking for help, this is everyone’s holiday, there is absolutely no reason everyone can’t share in the work needed to make it happen.
If you can’t delegate it to a family member, hire it out! Give yourself the gift of a more enjoyable Christmas, hire someone to come tidy before guests arrive, get that meal catered, hire a local teen to help with decorating. The energy and pain it saves you will be well worth the expense.
Your going to need that energy to enjoy the festivities. Remember to pace the enjoyment. Christmas can be packed with parties, concerts, gatherings, and trips to see Santa. Plan to be able to enjoy them. That means scheduling down time in that hectic schedule. One thing we cannot do, is enjoy life when we are running on empty. So, don’t sign up for a schedule that will take all your reserves and then some. Save that energy for the things that matter most. Say no to the parties of acquaintances, skip the office party if it is not convenient. Don’t be afraid to turn down holiday invites and save the energy for the ones you most enjoy. It’s supposed to be a joy filled holiday, don’t spend it in misery because you’ve said yes to all of the things.
When you do choose to attend an event or gathering, do it from a comfy seat. Sit down, take a load off, sit back and take it all in. Even if you are the hostess. You’ve prepped it all, delegated the rest, it’s time for the fun, let yourself enjoy it. Grab a plate of food and your holiday beverage of choice, sit back and watch it unfold. You’ll enjoy it just as much as you would being up in the middle of it all, and you just might catch a glimpse of some magic from that comfy seat.
Last, but certainly not least, don’t forget to take care of yourself! This is no time to skip all the self-care rituals that keep you moving! If anything, it is a time to double down on self-care so you can find the spoons to get through it. (Spoons? Not sure what I mean, look here.) So, take the supplements, build downtime into that hectic schedule, take a nap, eat real food between all those lovely treats, and try to get some sleep at night. The holiday will be so very much more enjoyable if you do.
While there is no doubt that this is the most challenging holiday season to get through, it doesn’t have to feel like an uphill battle. Taking time to care for you, pacing yourself, delegating, saying no, and paring down on the things you have to do will make it much less of a battle. Save the battling for the really tough stuff, like tying your shoes.
What do you do to get through the holidays? Drop your holiday survival tips in the comments! Looking for that perfect gift for your loved one or dear friend with RA? Don’t miss our Gift Guide for Rheumatoid Arthritis.
Merry Christmas from TenaciousME!
If you have a loved one with Rheumatoid Arthritis (RA), you have probably noticed that it comes with its own set of challenges. Aching joints, exhaustion, and physical limitations are likely to rule their lives. Give them the gift of relief this year! We polled 100’s of RA patients to find out what they wish for this year. Here’s what they asked for! At the top of the list, by a landslide were gifts for staying warm and toasty, with electric blankets being the number one top requested item! Read on to find out what else your arthritic loved one would be overjoyed to unwrap this year!
Whether the goal is to warm up aching arthritic joints or to keep them warm and toasty, these gifts are sure to give the arthritis sufferers on your Christmas list some cozy relief. The top choice, by a landslide is an electric blanket or wrap, it seems everyone finds relief from aching joints in a toasty blanket. Not surprising, they also had a load of other ideas for gifts to keep those joints warm and happy, including heating pads, heated seat covers, heated writs wraps, hand warmers…if it provides warmth, they want it! Also on the list of things they want to stay warm and toasty this year are cozy bathrobes and fuzzy pajama pants, warm socks, and finger-less gloves like these beauties from LoveMeKnotLAM. RA patients additionally asked for warm shawls and wraps to eliminate the struggle to get into a coat, as well as lightweight warm blankets for sleeping and lounging. Looking for toasty stocking stuffers? How about a pair of heated gloves or a few packages of Hot hands– used by hunters and outdoors-men for decades to keep hands warm in freezing outdoor temps, hot hands are wonderful for keeping hands and feet toasty, they are also excellent for relieving aching hands and feet. Portable and inexpensive, these are great to toss in stockings.
The next, and by far largest category of gifts RA patients asked for were gifts for getting things done! There is no doubt about it, RA makes everyday things like cleaning, cooking, and even personal grooming a challenge. Help your arthritic friend or loved one out with some of these great gifts that make getting things done a little easier.
If your loved one enjoys baking and cooking, a kitchen aid stand mixer is a must have! This mighty stand mixer will make creating the baked goods they love to make so much easier. It also has a wide array of attachments for doing all the other prep jobs in the kitchen. Slicing veggies, grating cheese, grinding burger or sausage, you name it, there is a kitchen aid attachment to make it easier! It is also the kitchen item most requested by RA patients polled. Another item that made the list many times is a quality blender for making smoothies, such as the Ninja. Other items that made the list of gifts for getting things done in the kitchen are many little electric gadgets that do the work for you, such as electric can openers, wine openers, kettles, jar openers, knives, and pepper mills. Low tech requests included jar openers, bottle openers, kitchen shears, and scissors, because getting into things is the number one struggle arthritis sufferers face in the kitchen! Other items on the wish list include fat handled utensils, chunky or offset handled knives, and easy grip silverware to make meal prep and eating less of a challenge. Last but not least, grab them an oven stick, this handy little tool makes getting things in and out of the oven much safer and simpler and fits quite nicely in a stocking.
When it comes to getting things done around the house, RA warriors have a few ideas as well. Things that made the list of items that would make cleaning less of a chore include standing dustpans, grabbers, step stools, and long handled brushes. When it comes to cleaning floors, they ask for a lightweight vacuum or better yet one that will do it for them, a Roomba is one of the most requested items on the list. Other helpful items for the house include doorknob helpers, remote control light switches, and grab bars. Think your loved one needs to spend more time not doing things around the house? Grab them a footrest, a book stand and a great book, don’t forget the chocolate!
Some of the biggest challenges folks with RA face involve grooming and dressing. Between hard to reach body parts and impossible to do up buttons and zippers, putting on clothes for the day can be the biggest challenge they face. Make dressing less challenging for them with a dressing stick, a sock aid, or a long-handled shoehorn. Ease grooming tasks with an electric toothbrush, fat handled hairbrush, or a lotion applicator and an adjustable back scratcher for those hard to reach body parts. For easier bathing how about a shower chair, long handled shower brush, or really wow them with a walk-in tub! Don’t forget to throw a few bath bombs and some Epsom salt in their stocking for those long soaks.
Want to let them know you think they are really special? Give them the gift of pampering with a gift certificate for a mani-pedi , a wash and style at their favorite salon, or a spa day!
From germs to mobility needs, your loved one with RA faces a lot when they walk out their front door. Help them prepare for more enjoyable outings with a walker, a collapsible cane, a portable step, car grab bar, or swivel seat. Make travel more comfortable with heated seat covers, a steering wheel cover, and a remote car starter. Armor them with reusable masks, hand sanitizer, and sanitizing wipes to ward off nasty germs. Live in the land of ice and snow? Prevent dangerous slips and falls with ice cleats for shoes and ice tips for canes.
Living in a technology obsessed world with grouchy hands, aching necks, and other cranky body parts can be a challenge. RA warriors had many ideas for items that make using tech more enjoyable. On their wish list are easy grip device cases, a fat stylus, wireless chargers, hands free devices, and this handy tablet couch. Other items that made the list are this pen mouse, an adjustable standing desk, and speech to text software.
There is no doubt about it, the thing your loved one with RA deals with the most is pain! Not the sort of pain you can pop a couple of Advil for, rheumatoid arthritis patients must turn to an arsenal of pain relief remedies to take the edges off their daily struggle. No surprise, the RA patients we polled had a LOT of ideas for gifts that can help ease the pain! They want wearable pain relief like these handy therapy mittens, copper bracelets, memory foam insoles, braces, and compression wear. They asked for pain relief they can slather on or swallow. Requests included cbd oil, turmeric supplements, biofreeze, deep blue rub, essential oils, hemp cream, golden milk electuary, and peppermint rub. They also asked for gifts to soothe the pain with heat and massage such as hot/cold packs, heating pads, a hand spa, hot water bottle, rice pack, foot spa, foot massager, heated neck massager, massage chair, or a tens unit, Also on the list were items to relieve pain through movement like these therapy balls and therapy putty. Want to really wow them? How about a gift certificate for a spa day or a few massage sessions? RA patients polled said either would be a heavenly gift.
When asked what they would want if money was not a limit, RA patients had some really great suggestions for gifts that would change their lives! Looking to really spoil them with something over the top this year? Spring for a hot tub or a therapy pool! The #1 and #2 requested big-ticket items among those polled. Other big-ticket items on the wish list were a spa weekend, weekly maid service, and a personal chef.
Last but not least, there was one gift that received even more votes than the coveted electric blanket! What does your loved one with RA want most of all? Hands down the number one thing RA patients asked for was the love and understanding of their loved ones. Life with chronic illness is hard, having people who understand that you are struggling and offer their support makes it so much easier to live with. Listen to their complaints, offer to help them with everyday stuff like cleaning and cooking, treat them to a meal in, prepared by you. Offer to join them for a meal prep day once a week. Sit on the couch and hang out with them on a rough day. They will be so very grateful for the gift of your presence and your love.
What’s on your wish list this year? Let us know in the comments, maybe it will be on next year’s list!
The sun shines brightly on the shimmering ice,
Frost bitten and shivering, the world comes to life
The light hits my lids and they begin to open
Then I move my big toe and the spell is broken.
With a crunch and crack, I am startled awake,
Back in my body, and boy does it ache
My toes cry out, my spine starts to moan,
I wiggle my fingers and out pops a groan.
Last night as he painted the windows of homes,
That bastard Jack Frost invaded my bones.
He covered them with ice, that crunches and cracks,
From the tips of my toes to the top of my back.
I don’t want to get up, I don’t want to stand,
But deep down inside, I’ve heard a demand,
Though snug in my bed is where I wish to be,
The undeniable fact is, I need to go pee.
The weather today has me grumbly and groany. I remember when falling snow brought feelings of wonder and glee. Now it’s all pain and annoyance, often served with a helping of self pity and heaps of promises to move to a kinder climate one day. There is no doubt about it, the blanket of snow that my younger self adored now brings with it the worst of my RA (Rheumatoid Arthritis) symptoms. No ifs, ands or buts about it, winter with RA, or any of the other 100+ types of arthritis, is rough. But it doesn’t have to be taming a tiger rough, it can be toilet training a toddler rough. Messy, frustrating, sometimes painfully so, but not likely to cripple you. Since winter has decided to grace us with his presence well before Thanksgiving, its time to do what any good New Englander does, dig out the winter survival gear and hunker down. Over the years, I’ve found a few things that help me keep moving when the world freezes over.
The first and probably most obvious is staying warm. If you have any type of arthritis you know what it feels like when you get too cold. With RA that bone chilled stiffness and pain can invade your entire body. So dress warm, layer up. Develop a deep love for cozy sweaters, fuzzy socks, and all things snuggly and warm. Finger-less gloves are a must for anyone with hand/wrist arthritis. Keep those hands toasty, thank me later. Use hand and foot warmers when you go out into the cold. If you are a sports family and spend any time at outdoor sports, get a padded (or even better, heated) cushion to sit on at games. The toastier you are, the less you will ache later. At home, heated wraps, heated blankets, and heated mattress pads all help beat the cold and ease the aches and pains of arthritis. Other things that chase away that bone chilling cold feeling are hand spas, wood burning stoves, and the ultimate dream, hot tubs! Anything that really pushes the heat into those bones will make you ache less. The number one rule for winter survival with arthritis, the cozier you are, the better you will feel.
Dressing warm helps protect us from the cold, but what about the ice outside? Every winter 1 million Americans are injured in a winter slip/fall accident. In fact, most of the slip and fall injuries occur at this time of year. Icy conditions can make staying on your feet a challenge. Add any kind of balance or mobility issues, like those often associated with arthritic damage, and it is easy to see why so many people unexpectedly find themselves on the ground in winter. Luckily, there are a few great aids out there to help people stay upright. A nice warm pair of winter boots with an aggressive tread are your first defense against slippery ice. Ice cleats, made to slide over your shoes, are made by a variety of companies and help add traction to everyday shoes and winter boots. A walking stick, especially one equipped with an ice spike tip, can help you stay on your feet by providing an extra point of balance and grip. Last, but certainly not least, Walk Like a Penguin! No, I’m not kidding, those tuxedoed flightless birds certainly have perfected the art of the slow and steady waddle. So, don’t rush, pay attention to where you are putting your feet and waddle away. It might take longer to get where you are going, but the time you save healing broken bones will be well worth it.
Finally, and just as important and staying warm and upright, taking measures to stay as healthy as possible will make winter much more tolerable. It is no secret that most colds and flus spread more quickly in winter. It also happens to be the time of year those with arthritis complain of the most inflammation. There are a few reasons for this, and many ways we can combat this pattern. Winter generally means less time outside in the sun, fewer fresh fruits and veggies, less exercise, and holiday after holiday filled with delicious, inflammatory treats. It’s pretty easy to guess why this is the least healthy time of year in the Northern hemisphere. Vitamin depletion paired with higher germ exposure from being cooped up inside allows winter bugs to spread. Being sure you are getting enough fruits and veggies, adding a multivitamin and a vitamin D supplement can help build your immunity and resistance to those nasty invaders. Protecting yourself from germs by washing hands frequently and even wearing a mask in areas with high potential of germ contact, can help you dodge many of the bugs we pass around in winter. Getting exercise daily will also help you stay healthy and keep arthritic joints mobile. So dig out those exercise videos and move it! Or, better yet, bundle up and go try snowshoeing, cross country skiing or some other low impact winter exercise. The fresh air and sunshine will do you good.
Staying healthy when you have inflammatory arthritis disorders, like RA or PsA, also means watching out for those delicious holiday treats and the endless comfort foods available in winter. Being mindful of what you are eating will make your holidays, and the days between, much more bearable. It is an undeniable fact that sugar causes inflammation, this is true even for completely healthy bodies. In autoimmune bodies, consuming sugar is very much like throwing gasoline on a fire. The result will always be a flare up of that unwanted fiery activity, inflammation. So proceed with caution. Keep in mind that those treats you are reaching for come with pain later, and don’t sign up for more than you can handle. Better yet, offset the fuel you add to the fire with some inflammation busters like turmeric, ginger, cinnamon, green tea, and chaga. These powerful plants and fungi are excellent fire fighters, proven to reduce inflammation. Being mindful of diet and including some helpful inflammation busters will go a long way toward making winter less achy.
With a little extra self-care, a bit of caution, and all the warm things you can get your chilly little paws on, winter doesn’t have to be the season of endless suffering. You might even find some pretty great days. Between storms of course, they’ve yet to make a cure for those weather related symptoms every arthritis sufferer lives with. Until they do, I’ll be spending these stormy days snuggled up with my electric blanket and a big steamy cup of chai green tea, plotting my escape to warmer destinations.
What gets you through winter with arthritis?
When I started this blog, I was already well on my way to a brighter, happier, more mobile place. I’d done a great deal of learning, experimenting and hard work over the last few years. Work that lead me out of the dark and back into a version of me I feel like I can live with. So, I started sharing, first by sharing my diagnosis story. Then jumped into the here and now, because that is where I am. Recently it dawned on me that I skipped the best parts of my story. Not the best as in the times I won, the times I stood back up, but the achingly real time that saw disability claim me. The un-abling if you will. I very conveniently skipped right over that chunk of time as though my story is I had a thing, it got diagnosed, and then I was disabled. That short and sweet version skips over all the meat, all the blood and gore. No surprise I chose to do that, its not a wreck I’m comfortable examining, there are bits of me still trapped in that disaster. But I’ve realized, not sharing is not being truthful. It’s time to give it an honest look. Because this struggle we share isn’t all pushing through and winning. Sometimes it is wallowing in the dark, in a pool of tears. So, here we go, into the dark (don’t worry, I packed a flashlight).
The un-abling began before diagnosis. If you’ve read my diagnosis story, you may have guessed that already. By the time I was properly diagnosed, many parts of me where already well on their way to permanent damage. I had no idea at the time, how those stiff and swollen joints were changing. Had I understood RA better, I may have acted more swiftly. Then again, I am me and I do nothing without turning it over for a month so, perhaps not. It’s so easy looking back to see the times you could have chosen differently if you’d only known, but reality is what reality is. Choices are made, time passes, consequences arrive.
My un-abling came slowly. RA began whittling pieces of my body and my very life away before it was even given a name. Within two months of diagnosis I realized that the job I was working at was far too repetitive for my joints to handle. The symptoms were getting worse by the day, as was my ability to keep up with the demands of said job and raising a family. I knew something had to change. So I took a leave of absence, promising myself that with rest, targeted exercise, and the treatment plan my rheumatologist and I made, I would get better and be able to return to work. I thought that until three days before my leave of absence was over. Then reality hit like a ton of bricks. I was not getting better. In fact, I was worse. The medication wasn’t working, my hands were hardly functioning, I would not be able to return to the job I’d come to love. The funny thing? Until my supervisor called and asked how I would be able to keep up with my job, I still had been telling myself I somehow could do it. His words were a much needed reality check. I remember telling him I don’t know, and the tears began to fall, as I realized the truth, I was no longer a person who could do that job. So I resigned, signed the papers later that same week, and then had a good long cry in my car before making the trek home to my new existence.
For a few years, that’s what I had, an existence. I was here, but not here. Looking back now, I realize that losing the ability to work sunk me into a rather deep depression. Ability was such a huge part of how I saw myself, to lose it was devastating. I was the kind of person who never thought twice about tackling hard work. The kind of person who often made her own solution with Yankee ingenuity and a little muscle power. And here I was, unable to open a bottle of water. I was lost, I was broken, I was permeated by a deep sadness, and I was SO mad! Mad at the doctors who misdiagnosed me for decades, mad at the medicine that made me feel worse instead of better, mad at the body that had for some reason decided we were enemies, mad at that water bottle I could not open. For years.
So, I punished myself. Unable to do whatever I wanted, I chose instead to do nothing I wanted. Frustrated by the things I could not do, I slowly stopped doing everything. Part of me was certain I deserved this, earned it, that it was something I had done to myself. Unfortunately, the internet tended to agree. It promised if only I took better care of me, I wouldn’t be where I am. Something that alternatively spawned hope and despair in me. Hope for healing, despair for my inability to do enough to make that happen. I was failing my biggest test. I hated myself for it.
Eventually, all that despair and hatred started to show. Rock bottom was approaching. It would arrive shortly after I was approved for disability. Never has a win felt so much like a loss. Never has relief brought with it such deep, dark grief. Disability meant help in the form of income and health insurance, both of which I desperately needed to fight RA. Unfortunately, being swiftly, without any fight, approved for disability, also meant I really was disabled. The words total and permanent leapt off the page. The system had spoken, recovery was no longer expected for me. Reality was devastating.
I soon began to shrink as my depression continued to grow. Before I found my way out of the dark I would weigh a terrifying 89lbs. A skeletal version of my former self, my outsides now matched my insides, shrunken and hollow. At the time, the weight-loss was a mystery. I had no idea why it had started, even less of a clue how to stop it. The overwhelming hopeless voice that had taken over my psyche was certain I was dying. I will be ever thankful for that thought, whispered in the dark. For finally there was something else blooming in the darkness. Fear. And what does fear do when it awakens in the darkness facing an overwhelming foe? Fear wakes Hope. Needing an ally, it triggers that ever present will to live. Fear rings the alarm and Hope springs into action. Glorious, radiant Hope.
Still broken and battered, I began once again to care, to believe that I had the power to change this destiny. I decided that I wanted this broken life, and started building a ladder to get out of the pit I found myself in. I’d love to say I immediately started gaining weight and feeling better, but that is not how the story goes. It would take many months to begin to see positive changes. At first, I continued to lose. I see now what a blessing that was. How that time allowed Fear to settle in and really give Hope a much needed kick in the ass. How much I needed to fear losing my life to find the will to fight for it. And find the will I did. Slowly but surely, I began to turn things around. I gained weight, strength, and belief in myself. The stronger I got, the more hope there was. As the number on the scale reached a safe zone, I turned my rediscovered will to fight to other things. I began looking for ways to heal again. I finally remembered who I really was. Glass ½ full, anything is possible, question it all, try anything once, never give up, Tenacious, ME.
Do you struggle with depression? You are not alone. Please reach out, seek help and companionship. Together we can light the darkness. For help and understanding call the National SAMHSA Helpline 1-800-662-4357 or the Suicide Prevention Lifeline 1-800-273-8255 .
Life, especially life with a chronic autoimmune disease, comes with bad days. Days when all the stress, troubles and pain life hands out feel a little too heavy. What do you do to unfunk when you feel down in the dumps? For me the answer is always music. I listen to a pretty wide range of musicians, from classical to metal, but when it comes to lifting my spirits? No one lifts me up quite as quickly, or leaves me feeling quite as blissful as soul rocker Michael Franti.
What music lifts you up?