Chronic Illness Holiday Survival Guide

Remember when holidays were times of magic and joy? You know, back before you were in charge of bringing said joy to the table? The good old days, when the turkey arrived at the table surrounded but trimmings with but the smallest bit of effort from you, gifts magically appeared under the tree while you slept. Before you knew just how much work goes into creating anything magical, when you could look forward to them with nothing but joy. Those were the days.

Staring down the barrel of what I have come to think of as the holiday gauntlet that is winter in North America, it is easy to become overwhelmed with everything that needs to be done to create that illusion of holiday magic. The hunt for the perfect gifts, hours in the kitchen prepping delicious foods that take longer than you imagine they will, cleaning, decorating, attending parties, visiting relatives, preparing for visitors…the list just goes on and on and on. Add in a chronic illness that limits your ability to keep up with “normal people” and it is easy to see why so many chronic illness sufferers feel like they are not up to the task. The truth is, they probably can’t do it all. The good news? They were never meant to.

Searching the history books (okay, I used google) and the brain of my history/anthropology buff eldest son, I have discovered something really important that all of the high holidays and feasts have in common. They are rooted in community. Each and every one of them began as a community celebration, a time to come together and share. Traditionally, the days leading up to those festivals were spent working together to prepare for the festivities, whatever they may be. The key word here is, together. Not one of the upcoming holidays began as a one woman sprint to do it all. Not one. Which leads us to the first step we will take for holiday survival with chronic illness.

Stop Trying To Do It All

Repeat after me, “this isn’t a one woman show”. Know how I know? You are preparing to celebrate with people, those people, should also be preparing for celebrations with you. Time to work on two skills everyone with chronic disease needs to master, delegating and asking for help. Start by assigning the things that really don’t need your personal touch to someone who can get them done. Yes, the wreath needs to hang on the door, no you don’t have to personally place it there. Sure, someone needs to run to the post office to mail packages, certainly doesn’t have to be you. Next, take a look at your to-do list, choose the hardest things on the list for you to accomplish, and ask for help. Invite your kids and spouse into the kitchen to help with the prep work, hand the vacuum to the teenager and let their version of cleaning be good enough for today, ask a friend to come help you dig out the holiday gear. You might be surprised how helpful your loved ones can be, once they know you need their help.

Simplify

While you are pondering that holiday to-do list, consider if you will, an alternate world where half that list doesn’t even exist. Lightens the load doesn’t it? What could you do with the time and energy you will spend at the neighbors’ annual party that you dread every year but attend anyway because it is expected? Would ordering the cookies from the bakery leave you in better shape for attending the event you don’t want to miss?  Consider the things you are expected to do, invited to do, and want to do, and make a plan that makes more room for the latter. It is okay to say no. Even during the holidays. Even to your family. Something many of the makers of magic seem to have forgotten, its is YOUR holiday too. It should feel like it!

Get your free printable symptom journal here.

Pace Yourself

Speaking of feeling like it, you will feel much more capable of surviving the season if you pace yourself. Trying to do it all at once will only lead to pain and failure, so set yourself up for success. Planning to space out the things you need to do will make you much more likely to get them done. Avoid the pain and suffering of an all night gift wrapping session by wrapping a few at a time over a week. Do a little bit of several different projects a day to avoid physical burnout. Remember that your daily energy and strength are limited resources and make a plan that respects them. Limping into the holiday feeling miserable because you overdid it getting there is not the goal! Enjoying the time with those you love, that is the goal here.

Don’t Forget Self Care!

With that goal in mind, be sure to leave time in your holiday schedule for self-care. 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 energy to get through it.  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 holidays will be so very much more enjoyable if you do.

While there is no doubt that this holidays can be challenging to get through, it doesn’t have to feel like an uphill battle. Taking time to care for you, pacing yourself, delegating, asking for help, 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 washing your hair.

What gets you through the busy times in life? Drop your holiday survival tips in the comments! Looking for the perfect gift for a loved one with chronic pain/arthritis? Keep an eye out for the 2021 gift guide!

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Finding your new normal

Remember the good old days? The days when you could do anything you pleased without having to worry about the fallout? You know, back before everything became a massive daily struggle? When you could make a list of things you wanted to do, and actually do them? Those were the days huh? I miss those days. The days before chronic disease started calling the shots.

If you thought I was referring to pre-pandemic life, it’s no surprise. Much like the new national normal, the new normal of a person who has been handed a chronically debilitating disease diagnosis is often a bleak, lonely, shadow of the old normal with a big spoonful of suck and a side of struggle. It’s not a good time. I don’t recommend it. But,much like the 2020’s, if you’ve found yourself afloat in the sea of suck that is chronic illness, the only way through is through. There is no turning back, no time out, no rewind. It is what it is. So now what?

Now, as you’ve probably heard, its time to find your new normal. Before you panic thinking about recent examples of new normal and how much that tends to suck, take a deep breath and remember, this is still your life, you call the shots, and change is good. (No, really,I promise.) If there is any hope at all that you will find your way out of this sea of suck and back to the shores of something that resembles a normal life, you are going to have to make some changes. After all, doing what you have been doing has brought you here and, as you may have guessed, the sea of suck is a whirlpool, its going to take some effort to pull away. The great news is, you absolutely do not have to row this boat alone. In fact, now that the disease has a name and treatment options, you can build an entire team of doctors and support staff to help get you to that new normal.

First, the hard part. It’s time to consider what you are going to have to let go of to get out of here. Some of it may, unfortunately feel like precious cargo. You are going to have to let it go anyway. I’m sorry. Letting go of the things you used to do is one of the most challenging aspects of living well with chronic disease. “Used to be able” has become a jagged bit of metal you will only wound yourself with. No good comes of wallowing in “I used to be able”. Thank it for being there for you when it was and bid it a fond farewell. Something new will fill that void, promise. You may no longer be able to do everything, but what you choose to do will be that much more precious because you have decided it deserves to stay in the boat.

Now, the only thing left to do is chart a course. (That’s pick a direction, for you non-seafaring folk)

What do you want your new normal to look like?

What parts of your old normal do you want to keep?

Which parts are you stuck with?

Make a list, a dream board or some other visual representation of the life you wish to be living. Something you can turn to when the going gets extra rough and you are struggling to remember what you are even trying to do. Now is a good time to consider some of the precious cargo you tossed as well. Is there a version of that you can do? Maybe you had to let go of the job you loved because it was destroying your feet to be on them so much…could you do it part time instead? Is there a way to do what you want in smaller, easier to manage chunks? Can it be adapted to the new you? If you think it can, add it to the wishlist.

Click here for your Free Printable Symptom Journal!

Now, step back and take a look at your new normal, not nearly as bleak as you thought it was, is it? Okay, so maybe its only the plan for your new normal. Getting there is of course an entirely different story. Not sure where to start? Check out our Living with Autoimmune Disease section, learn Five Keys to Managing Your Autoimmune condition, or browse our blog articles for more helpful tips and information. Need support? Pop on over to the Chronically Tenacious group on facebook for understanding and community.

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Gardening with RA

Do you love the idea of a garden but cringe when you think of the body ache inducing work it takes to create and maintain one?  If you could enjoy the fruits of your labors without the pain of the labor, would you?  Gardening, even with a body riddled with arthritis and prone to exhaustion, can be a relaxing and rewarding process.  A few changes to the way you approach the task can make it a (mostly) painless process.  As painless as anything with an angry body can be.

1.  Raise It!  Gardening on the ground means stooping, crouching, reaching, and bending, all things cranky joints hate to do.  Raising the height of your gardening efforts can greatly reduce the strain on your body.  Raised beds, hanging planters, and patio pots are all wonderful options to help reduce the strain of gardening.  Place patio planters on stands or overturned pots to raise them to an easier to reach height. 

Planters that are mounted on walls, railings, or fences are also a wonderful option. When you are working with bags of dirt or fertilizer, place them on a chair, cart, or other higher surface to make reaching them easier. If you cannot raise your garden, get on its level with a stool or garden seat.

2. Get the right tools for the job.  Using adapted tools can greatly improve your gardening experience.  Long handled tools that eliminate the need to hunch or crouch, chunky handled tools that are more friendly to arthritic hands, electric weeders and trimmers that take the labor out of the work, there are tools to fit just about every need.  Struggle to use rakes and shovels with straight handles?  Check out these amazing offset handles, which change the grip and give you leverage at the same time.  Amazing!

3.  Eliminate watering woes.  One of the biggest challenges of gardening can be keeping up with the needs of thirsty plants.  Watering used to require dragging heavy watering cans, wrestling with unruly hoses, squeezing spray handles and generally just a whole lot of challenges.  Thankfully, there are now many ways to take the struggle out of keeping plants hydrated.  Instead of wrestling with heavy, awkward hoses, invest in a collapsible hose, they are not only lighter but also much more flexible and easier to move around.  Ditch the more common squeeze trigger style spray handle for one with an easy to push lever handle.  Eliminate the need for hoses altogether by investing in an automated watering system.  There are many different types of irrigation systems on the market now. 

4. Get ahead of weed control.  Planning ahead will greatly reduce the number of hours you have to spend defending your garden from invaders, aka the dreaded weeds.  Using a commercial weed barrier is a great first line of defense. Mulching with bark, shredded paper, or placing cardboard or newspapers down as a weed barrier also work well. As an added bonus, mulches and paper barriers also help prevent water loss, meaning less watering for you.  Planting ground cover plants near taller plants is also a great strategy to edge out weeds.  The fuller your planters are with things you want, the less space there will be for things you don’t. 

5.  Start small.  It can be tempting to go all-in when it comes to gardening.  After all there are literally hundreds of plants you could grow.  Planting more than you can manage however, leads to failure and disappointment.  Starting with a small raised bed or a few pots on your patio is a wonderful way to ease into gardening and gauge your ability to keep up.  Keep in mind, each plant needs weeding, watering, fertilizing, perhaps occasional pruning, and a bit of love to thrive.  Growing one amazing tomato plant is far more rewarding than watching an acre of garden being swallowed by neglect.  Keep it simple, start small.

6.  Pace yourself!   Rome was not built in a day, nor were the gardens of Versailles.  Reaching your gardening visions will take time.  There is no reason to do it all at once.  Break the job down into smaller chunks.  Get the soil ready one day, plant another day.  (Or many other days.)  Mulching, weeding, even watering can be done some at a time.  Keep in mind that overdoing it today might take you down for several days, you will survive it, but your garden may not.  Plan for consistency by not biting off more than you can chew today. 

7. Last but never least, ASK FOR HELP!  I know you hate asking for help, especially with things you choose to do for entertainment or recreation.  The fact is, bags of dirt are heavy, sometimes things that should turn won’t turn, and you will just plain run into things you can’t do alone.  That is fine, there are other humans, ask them to give you a quick hand.  You can reward them with yummy veggies or pretty flowers later. 

With the right tools and a few adaptations gardening with RA and other physical challenges can be a rewarding and relaxing hobby. What tips and tools have you discovered that help make gardening more of a joy for you?

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Chronic Illness Struggles- What Will They Think of Me?

Have you ever worried that you don’t measure up?  Do you feel like your ability to do all of the things falls far short of the expectations of your friends, family, boss, or society in general?  You are not alone.  Especially within the chronic illness community, humans spend a great deal of time worrying about how they are viewed by others.  Also, especially in the chronic illness community, they are often right, they are not meeting ALL of the expectations of others, but seriously, how could they?  Have you taken a look at the size of that list lately? 

Spoiler alert, you will never, even on the very best of days be able to be exactly who everyone needs you to be.  If tomorrow you woke and your illness had magically disappeared, trust me when I assure you, you would still without a doubt be an odd disappointment and failure by someone’s standards.  But wait, there is hope…because guess what?  You don’t have to meet any standards you didn’t set for yourself, and even those are negotiable. 

You are battling your body daily, doing the best you can to do the things you have decided are important.  There is no time or energy left for worrying if your mother-in-law thinks you are lazy and don’t know how to clean.  I mean, she probably does, but who cares, mothers-in-law are notoriously displeased, don’t sweat it.  You could hire a secret team of maids and she’d still find a way to pick you apart, some people are just like that.  (Not my mother-in-law mind you, I’m one of the lucky ones, but I have heard the horror stories!) 

Whether it is your in-laws, your spouse, boss, co-worker, or that annoying lady at school drop off who always seems to know exactly what everyone else should be doing, you are under no obligation to please anyone. Will they sometimes wonder why you do the things you do? You bet, and you will likely often wonder why in the world they do the things they do as well.

Life is too short to worry that others think you are not enough.  You are enough.  Even in whatever cracked form you find yourself in today.  You are enough.  Perfectly imperfect just the way you are, flaws and all.

Looking for other perfectly imperfect chronic illness fighters? Pop on over to the Chronically Tenacious community. Want to help support the tenacious blog? Click the button below to donate today!     

Chronically Behind

Does your to-do list seem to just keep growing?  Does it stare at you tauntingly from the desk or wall, knowing you will never defeat it?  Is it more of a growing list of things you can’t seem to get done than a list of things you will realistically get done today?  I’ve started to think of mine as a list of shit I probably won’t get done today or this week, but plan to try to do one day when I feel like I can fit it in.  As that is an insane length for a title, I call it my “want to-do” list, an always growing list of chores, projects, and brilliant ideas that I will tackle, just as soon as I have the energy and brainpower needed to do that.

Unfortunately, especially in winter, checking things off the list is slow.  As my body reacts to months of pain inducing weather changes, reduced activity, and lack of fresh air and sunshine, my ability to get things done shrinks.  That’s how it is with chronic disease, the more active your symptoms have been, the harder the normal stuff becomes. If those symptoms include reduced mobility and dexterity, some things become temporarily physically impossible.  Since the must do list doesn’t get any smaller, that means less energy for the stuff I’d like to get to.  Rather than constantly beating myself up for being chronically behind, I decided to change the name of the list.  From ‘to-do’ to ‘want to-do’, ta-da, pressure removed, bliss restored, stress reduced, ahhh.

Now I can get back to ignoring the things I cannot do, knowing they are safely stowed in my notebook for a day when I feel capable of doing them justice.  When I find I have spare energy and time, I can pull it out and find something to check off, until then, it’s not taunting me from my desk, making me feel like a complete and utter failure because I am currently incapable of getting it all done.

Do you struggle with feeling chronically behind?  What has helped you deal with those always changing limits and abilities?  Find support and understanding in the Chronically Tenacious Community

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Are You Okay?

As the new normal continues to be anything but normal and the strangeness of 2020 stretches on into the foreseeable future, it seems like a mental health check in is in order.  How are we holding up?  A quick look around at yourself and your loved ones might be a bit alarming. (How long has he been wearing that pair of lounge pants anyway?  Is hair brushing actually essential?)  Among my tribe I’ve begun to notice that even the toughest are starting to crack a bit under the pressure of doing the right thing in a world where the right thing depends on who you ask. 

The effects of the long-term suspension of our normal outlets and activities are really starting to show.  Depression, frustration, anger, and addictive behaviors of all kinds are becoming all too common in “the new normal”.  We are consuming more alcohol, binge watching more television, hitting the add to cart button with reckless abandon, spending hours scrolling through TicTok and Instagram.  If it’s a crutch or an escape mechanism, we are holding onto that puppy like a life raft these days. 

Are you addicted to the SIMS like me? There is no 12 step program but find support and yours truly on the community forum. Look for Corallady.

For me that means spending hours with my head in a book or designing dream homes for Sims and running their tiny, old-normal lives.  It means smoking more than I should and drinking more often.  It means allowing my younger son to spend waaaay too much time on his latest video game obsession, after all, he’s at least communicating with people on there, so that’s something, right?  Like the rest of the country, we are here holding onto whatever pieces of normal we have been able to preserve and keeping our eyes on them in hopes we wake to a brighter, normal-er future. Not to spoil a perfectly good escape mechanism but, hiding from our problems has never solved them before and it’s not likely to now. 

If we don’t start gaining control of our crutches, we may soon find we can’t do without them.  Crutches are tricky like that.  “Yeah but, Stasha, life still sucks, and I can’t do what I want, and its making me depressed so…”  I hear ya, I feel ya, I am right here with you. I’d like very much to just build the tiny homes all day and not pay any attention to the general state of the world outside my door.  But the building of virtual realities will not make my reality nicer when I emerge.

Life rolls on, whether we are paying it any attention or not.  So, whatever it is you are missing, or stressing about, or afraid of, or uncertain about, it’s time to start looking it over.  Consider the things you can control first, maybe start by taking a bit more control of when you choose to pick up the crutches.  We may not be able to solve all of the problems we see, but we just might be able to take a crack at our own. Overwhelmed or need help to find your way back to okay? Take a look at the this –> list and call or click for help today.

Keep Warm and Carry On- Surviving Winter with Arthritis

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. 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. 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 as 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 wearing a mask, 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?

Chronic Illness Struggles- Is It My Disease Or Do I Need To Seek Treatment?

If you spend much time interacting with the autoimmune and chronic illness community, you may have noticed one of the most frequent types of questions asked is “Is this normal or do I need to call my doctor?” The well-meaning response of the other group members is often a chorus of, “oh yeah that happened to me once and it was X, just do Y.”  A few more cautious types may suggest you talk to your doctor.  While it is very tempting to take the assurance of that first group that is sure they know what you are dealing with, don’t lose sight of the fact that they aren’t you.  The unfortunate truth is, even people with the exact same conditions will react to those conditions, and the treatments for them, differently. 

Sometimes, there is truly no harm in trying out that suggested remedy for what the group thinks you probably have (when they happen to agree.)  Other times, it leads to unnecessary suffering, or worse.  Assuming those chest pains are costochondritis (common among many RA patients) when it may be your heart, is not a safe bet.  Walking around with a broken foot for a week because you think it is just your RA acting up in a new, more intense way, is also no walk in the park.  So why suffer?  Pick up the phone and talk to your physician. They can help you pinpoint the cause, or at least rule out anything dangerous, the issue will also be added to your health record.  Sometimes those little annoying symptoms you aren’t discussing with your doctor are the piece he/she needs in order to fine tune your diagnosis.  Remember, managing chronic illness is a team sport, make sure your co-captain has all of the information.

Since chronic illnesses come with chronic symptoms, and those symptoms rarely all arrive at the party at the same time, you are going to find yourself playing “is this worrying or just how I am now” on a regular basis.  To prevent missing the important symptoms or driving your doctor insane with every little tiny “regular for you” symptom, it may help to ask yourself a few questions before you decide to call the doctor. 

If you’ve got a brand new symptom, even if it is an expected symptom, make the call.  That needs to go in your record.  It is a big part of how your medical team knows if the treatments you are receiving are truly working fr you.  It also often lets them know how aggressively your disease is progressing. 

Sometimes, it might also be the heads up that they need to realize you are having a negative reaction to the medication you are on.  The point is, in order to give you the best possible care, your doctor needs to know what you are experiencing.  Don’t assume they know because everyone experiences x when they have what you do.  They aren’t treating everyone, they are treating you.

If the pain scale number you picked is higher than what you are used to living with, or if the pain is new, or especially more intense than you are used to, or just plain too persistent and making life suck, call your doctor. Chronic illness does come with chronic pain, however, that doesn’t mean you just have to suffer with it.

Pain remedies are made to make people feel better, just because you have extra pain compared to “normal people” doesn’t mean you shouldn’t also get relief.  Also, and this is important (and something you may occasionally have to remind your doctor of), just because you have a disease punctuated by chronic pain, doesn’t mean every pain is related to that disease.  Other things can still go wrong.  You can break things, tear things, organs can misbehave in ways entirely unrelated to your condition. You are more than your disease. Suffering with a kidney stone because you think it’s just your body being its usual un-charming self is senseless. (Ask me how I know.)

Which brings us to the last two questions.  Is it interfering with your life and is it treatable?  Whether it is an expected part of your disease or not, makes no difference when it comes to these answers.  It may be entirely normal for joints to break down and change shape when you have RA, that doesn’t mean you have to just sit by and hopelessly watch as it happens.  If the “normal” symptoms are stopping you from living your normal life, talk to your doctor. 

If there are treatments for your symptoms that someone without your disease would reach out for, you should too.  Again, expected symptoms does not mean things you have to suffer without treatment for.  It seems many people fall into the belief that those chronic illness symptoms are just their cross to bear, that this is just how they have to feel.  Honestly, that is rarely the case, few and far between are the completely untreatable symptoms.  Generally, you will find there is a therapy, medication, or fix for whatever you are suffering from.  Don’t suffer, seek help. 

Need help solving your medical mystery? Get your free printable symptom journal here.

Life with chronic illness is certainly not a walk in the park.  Spending so much time and energy on feeling well can seem like an uphill battle.  Having a well-informed doctor on the team to help get you up those inclines makes all the difference between well managed disease and disaster.  Getting their help to diagnose the root of a symptom is often the first step in finding relief for it.  Once you know what the problem is, those well-meaning chronic illness warriors will be able to offer much more helpful advice. 

New Year New You?

Has anyone else noticed a shift in the tides?  Generally, this time of year we are bombarded with hype about resolutions and crushing those goals to finally change that thing you don’t love about yourself.  I don’t know if it’s because we did so much changing in 2020, or if we finally found the sense and empathy to toss out the whole “It’s a New Year you better be a better person NOW” mentality, but whatever the reason, the shift is nice.

Don’t get me wrong, I am all for self-improvement, in fact, I am quite sure it’s what we are here for, to learn and to grow, to be the best we can in the lives we chose to live.  Whatever that best is.  What I don’t believe in is new year new you type “resolutions.”  In fact, I don’t believe in resolutions at all.  I believe in goals and intentions, that we should always have a few set and be moving toward achieving them.  There is no reason whatsoever that starting the work needs to start January 1, or Monday, or after the next holiday, or after you go do that thing where you know you’ll be tempted.  Change, real, lasting change, happens over time, not at the stroke of midnight on New Year’s Eve. 

To change the habits that left us where we didn’t want to be, we will have to try, fail, revaluate, try again, probably stumble some more, possibly fall off the wagon entirely, look at the wagon for a long time and consider what being on it looks like, consider catching hold and trying to stay in charge of our actions and then follow through.  Repeatedly if it is a longtime habit.  That’s why New Year’s resolutions are like poison to me.  It’s just a set in stone goal that you will fail to meet immediately, which then makes you feel like you couldn’t do it, because it’s a new year’s resolution, everyone has one, and look at those people crushing theirs. 

Change happens after we stumble, and it sticks because we figured out how to stop stumbling.

Keep in mind that the idea of a new you is insane anyway.  We can’t be new.  We can improve, we can get healthier, lighter, faster, be more present, more on time, we can change practically everything about us if we want to badly enough. But, we are still who we are.  We are the sum of all the versions of ourselves we’ve been.  Remembering that while we set goals is a big part of setting ourselves up for success.  When you are setting goals remember, the changed you is in the future, she’s not here yet, so don’t set yourself up for failure by expecting yourself to act like her.  You’ll get there, but for now, being realistic about the person you are working with will make changing more successful. 

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One of the ways you are going to set yourself up for success is to create realistic goals and a plan to get there.  Where many trip themselves up is by making the goal the plan.  If the goal is to eat healthier, the plan can’t be eat healthier…that is where you want to be “eat healthier” is a finish line, a goal post.  A pretty vague one at that.  If the goal and the plan are the same, you’ve left yourself no room to grow and change.  You’re asking for some of that stroke of midnight change, tomorrow I will be a person who eats healthy is what you are saying.  Guess what?  Tomorrow you will be the same person who struggles with healthy eating, so leave space for that. 

Break that goal down into achievable chunks.  Small steps add up and create lasting change.  If the goal is to exercise five days a week, start out with one or two.  If the goal is to “eat healthier” (first define healthier because that is not very specific) consider the small changes you can make to get there.  Maybe you can cut out that afternoon candy bar or trade soda for water.  Maybe you prefer to put your focus on getting one nutritious meal a day. 

You probably know the things you need to change.  Just don’t set yourself up to fail by asking yourself to do it all in one swoop.  If it was that simple, you’d have done it already.  Which brings us to the last bit of advice on creating lasting change.  Habits are hard to change.  A fact we tend to lose sight of during the new year new you frenzy, change is HARD.

Doing whatever you usually do, even if it is causing you actual pain to do it, will always feel like the easier option.  Be prepared for that.  Know that the bad habit will call you like a dear old friend.  Since you are only human, sometimes you are going to listen to that call.  It will be easy and probably comforting to slide back into that old pattern.  When you do, don’t waste time beating yourself up about it.  Know that it is part of the process.  Think about why it happened, plan to avoid it next time if you can.  Then get right back to working on that goal.  No waiting until next Monday.  Start right now. 

GoodBye 2020

What a year! It is probably safe to assume this one will make the history books. Between the virus that shall not be named, the economic and job insecurity that followed, school closures, work relocation from office to home, murder hornets, earthquakes, fires, and social upheaval, we have certainly had plenty of challenges to get through this year.

First things first, let’s all take a nice deep breath, we made it!! Despite 2020 being the year of change, here we are, surviving it all. Proof that we are more adaptable than we give ourselves credit for. As we ease into 2021, hold on to that, hold it tight. You are incredibly adaptable, whatever comes next, you’ve got this, just look at what hasn’t taken you out of the game so far!

Now, I know, many of you don’t feel like you’ve got this. In fact at this moment a good many of you feel like life is a grizzly bear and you are just trying to get the damn thing to leave so you can catch your breath for a moment. And why wouldn’t you? Your head hasn’t stopped spinning from all the change, everything is new and different, your need to do list has never been longer, and you honestly don’t think you are nailing it on any front. Maybe you are doing better than you think, then again, maybe you aren’t but…you are still moving forward, take pride in that. If you were assume the fetal position and stare off into space, nobody would judge you, we have all been there. 2020 was jam packed full of reasons to just call it a day and give up. And yet, that is not what we witnessed as the year continued on its crazy track of change.

Instead of throwing in the towel, we saw people find their way, again and again. Families have pulled together and rediscovered each other. Forced to cram all of life into your four walls, we’ve witnessed incredible inventiveness springing forward to make those spaces work for you. You’ve re-prioritized, de-cluttered, and generally everyone has taken a good close look at the life they have built. Some of us liked what we found, some not so much, most found room for improvement. Without all the distractions of our fast paced lifestyles, there has been time to consider what we need to work on.

Slowing down and turning inward, we have rediscovered dreams long dead and begun to breath new life into them. We have discovered the baggage we’ve been tripping over and started the process of unpacking it. Faced with our very real mortality, we have taken a deep dive into what we need and want in our lives. Many have found ways to make those things happen, in some form, many others now know what they want when “things return to normal”. I hate to burst that bubble, but normal isn’t coming back anytime soon. It can’t get back, you have seen behind the curtain. You cannot un-know the things you discovered there. Carry them forward instead, into a brand new normal, we can build it together.

In fact, that is the beauty of this time of the year. The clean slate. Tomorrow we start an entirely new leg of our journey. What will it hold for us? What will we create there? How do we want 2021 to look? Take a few minutes to make a list of things you wish to see happen in 2021. Be sure to stay in the positive, ask for what you do want, forget the things you don’t want, they don’t fit your bright new normal world, toss them out with the clutter. This is your mission for the coming year, to do whatever you can to work toward the life you want to live. Simple right? After a complex year like 2020, we all need a little simple in our lives.

Hoping 2021 is magical and 2020 is soon nothing more than a bad dream we all shared.

HAPPY NEW YEAR!

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