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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. Here’s what they asked for! From gifts to keep them warm and toasty to gadgets that will help them get things done, our readers had a ton of great ideas! Read on to find out what your arthritic loved one would be overjoyed to unwrap this year!
Topping the wishlist this year, and hitting this writer right in the feels, the number one requested gift in 2020, by a landslide, is time with the ones they love! The prolonged isolation from grandchildren, adult children, parents, friends, and all of their people has taken a toll. Holiday traditions have taken a hard hit. The result? What they’d like most of all is the magical gift of your presence.
Since the….let’s just call it 2020 chaos, shows no sign of slowing before year’s end, and many RA patients take immune suppressing medications that leave them vulnerable to that which shall not be named (look I am willing to try anything to weaken it’s power at this point), they understand that an in person visit might not be possible. That said, it’s still at the top of the list, so consider how you can be there (safely) for them.
Consider planning a visit if at all possible. The love you share and the memories you make will be well worth the time and effort it takes to make that happen, even if you have to spend 2 weeks hunkered down at home first to be sure you’re not contagious. If that’s not possible, consider ways you can visit from a distance; video call, write letters, have food delivered and have dinner “together” online, plan a virtual family game night. You may have to get creative to create the “togetherness” they are yearning for.
If you can’t be there, because realistically that is going to be the case for a great many people, consider sending your loved one the gift of warmth. While not quite as lovely as a hug, rheumatoid patients agreed the thing they wanted most was a heated wrap, bonus points if it is portable!Beautyrest Ultra Soft Sherpa Berber Fleece Electric Poncho Wrap Blanket Heated Throw with Auto Shutoff, 50″ W x 64″ L, Tan Plaid
Knowing that nothing ticks arthritis off more than getting “chilled to the bone” in chilly winter weather, there were many other wonderful gifts on their wishlist to keep them warm, including these cozy heated gloves, heated socks, or a nice heated carseat cover.
To help soothe chilled bones at home they asked for electric blankets and heating pads, or how about this amazing portable sauna? (Yes please!) Basically, if it makes heat to make you warm and cozy, it’s a great gift for all of the arthritis sufferers on your list.
Considering their obvious love of all things warm and cozy, it is not at all surprising that the next most frequently asked for gifts included a pile of warm and cozy socks and slippers. Leaning into the 2020 lougewear trend, leggings and pj’s were also at the top of their list.
For those increasingly rare times they need to leave the house, RA patients asked for warm gloves and mittens and comfortable shoes like these Clarks CloudSteppers, hands down my personal favorite shoe, I like them so much I have them in three different colors.
If your loved one struggles with bulky winter coats, consider a nice warm poncho, for ease of wear. It is essentially like wearing a blanket, and as we already know, they LOVE blankets!
Speaking of things they love to wear, consider picking them up some compression gloves, knee sleeves, or other compression gear. Whatever body part they have that could use a little extra love and support, there is probably compression wear for that.
Chronic pain being one of the primary symptoms of rheumatoid arthritis, anything that will offer them a bit of relief would be greatly appreciated. The remedies that RA patients swear by include many mentholated creams, like Biofreeze. The most frequently asked for topical remedies were CBD oils and creams. Other great gift options for pain relief included bath soaks like this delightful mango soak from Scentsy or Dr Teal’s epsom salts.
To chase away the pain, those surveyed also asked for hand and foot massagers, massaging chairs, and therapy balls. Want to really make their day? A gift certificate for a massage is sure to bring them comfort and let them know you want them to feel their best.
Life with RA often involves a good deal of struggle with getting the little things done. Pain, inflammation, and changes in joint structure can make the simplest things a big challenge. Gadgets that can help to make those things easier will be greatly appreciated.
At the top of that wishlist were electric can openers and jar openers. I love this jar opener so much I bought a second one to keep at my Mom’s so I don’t need to ask for help there either. Other great kitchen gadgets include electric pepper mills, a Kitchen Aid stand mixer, and this amazing Rotato peeler!
For help outside of the kitchen, a lifting seat or recliner would be a great gift for your loved one who finds getting up to be a struggle. Other wonderfully helpful tools include chunky ergonomic pens, lever doorknobs, and this cool pen mouse.
Since we started out our list talking about how isolated your vulnerable loved ones are feeling this holiday season, it seems fitting to wrap up our gift guide with a list of things to help them stay entertained at home. Topping that list were gadgets that make reading easier on the hands like the Kindle Paperwhite, this amazing bookstand, and these adorable page holders. Consider keepiong those readers entertained with a subscription for a magazine, audiobook, or book of the month club.
Other great suggestions include gifts to pamper them through the long months ahead. Perhaps they would enjoy a selection of delicious teas/coffees, there are even subscription services for that. Think about the things they enjoy, you’ll likely find someone, somewhere who offers a monthly subscription box. Not sure what they would like? How about a Spoonie Box Subscription? Loaded with goodies for chronic illness fighters, it is sure to be a big hit month after month.
While the 2020 chaos might change everything, including your traditions, this year, that doesn’t mean we cannot show our isolated loved ones how very much we appreciate and care for them. A little creativity and extra effort is sure to go a long way. May your days be merry and bright and may all your test results be negative. Happy Holidays from the TenaciousME family.
One of the most frequent troubles Rheumatoid Arthritis (RA) patients struggle with is being understood. If you don’t have RA, it is a little hard to imagine what it is like. The morning stiffness that sometimes sticks around all day. The painful swollen joints, the deep fatigue, the stress of finding treatments that work and the load of side effects that often come along with treatment, make for a complex life. A life that is often also lonely as mobility becomes a challenge. Loneliness that is even deeper when friends and loved ones do not understand what they are dealing with. We polled hundreds of rheumatoid arthritis patients to find out what they wish their loved ones understood about RA. Here are a few things your loved one with Rheumatoid Arthritis wants you to know.
A common misconception due to the name and a general lack of knowledge about the disease, Rheumatoid Arthritis is much more than arthritis. While stiff joints, joint pain, and joint deformities are indeed a big part of how RA shows its teeth, that is far from the only area this autoimmune disease impacts.
RA is a systemic disease; this means that it attacks the entire body. Heart and lung tissue, tendons, eyes, vocal cords and muscles are also on the possible hit list for RA. It brings with it increased risk of cardiovascular disease, lung disease, various forms of cancer, wasting sickness, blindness and so much more. Unchecked, Rheumatoid Arthritis is deadly.
Managed, it is still chronic. The most common and persistent symptoms of disease activity are pain, stiffness, fatigue, depression, and brain fog.
Fighting a chronic, debilitating disease like RA can sometimes feel like a full-time job. Medical appointments, treatments, diet and exercise regimens to keep the disease in check often dominate the lives of patients. Because even among professionals, there is a great deal of misunderstanding about the scope of the disease, patients often have to fight for the medical care they need. Successful management takes a team of professionals including rheumatologists, orthopedic doctors, physical therapists, massage therapists, psychiatrists, and various other sorts of doctors when heart, lung, eyes etc. become impacted.
Medical treatments involve medications that shut down various immune reactions, leaving patients vulnerable to a host of issues. (If your loved one with RA cringes when someone in the room sneezes, this is why!) Frequent battles with infections and microbes are par for the course.
The possible list of side effects on these medications include increased risk of cancer, nerve damage, liver failure, kidney failure, hair loss, fatigue, blood sugar abnormalities and even destruction of bones. Treating the disease often feels as dangerous as letting it do what it will. Patients are forced to choose which side effects and symptoms they can live with, and to hope none of the ones they ignore kill them in the end.
There is no one treatment that works for all. It is all a process of trial and error. Unlike many of the symptoms humans commonly face, there is nothing that eliminates symptoms for everyone. Every body responds differently to treatment. It quickly starts to feel like a game of medical roulette, will this help, or will it destroy a vital organ? Only time and trial will tell.
There is no one treatment that works for all.
This medical mystery and frustration is doubled when faced with those who, with the best of intentions, fill them with false promises of miracle cures. The fact is,
Knowing all the dangers associated with active RA, you’ve likely poked around online, talked to friends, maybe even health professionals, about how your loved one could feel better and be safer. Probably more than a few have suggested diet, exercise, herbs, various medications and supplements, all with promises to cure Rheumatoid Arthritis.
Something that you really need to understand and come to terms with is THERE IS NO CURE. This disease is chronic, it is not going anywhere. While it is true that many of the recommendations will make life with Rheumatoid Arthritis and disease management easier (If you consider restrictive diets and piles of supplements easy), none of those things will ever cure RA.
Once it is activated, there is no stopping it. The best any medical treatment or natural approach is likely to do is slow it down. In a small percentage of patients, times of “remission” may occur. Some are even able to stop medications and continue to be in remission. These cases are few and far between, and so far, none have lasted. RA always flares up eventually. Even on the most restrictive diets. Even when you do yoga daily. Even on medications with terrifying side effects.
So, while they appreciate that you want to help them feel better, please keep that miracle cure to yourself. They have heard it all before, they have probably tried it all. They are doing their best to manage their disease. What they need from you is understanding and support, leave the miracle cures to strangers on the internet. Trust me, they will get that little tidbit somewhere, and they won’t be annoyed with you for suggesting kale can cure RA.
Probably most important thing for you to know is that they are still the same person they were before RA came calling. They have the same dreams and desires, love the same activities, and truly want to live the life they lived before diagnosis. Sadly, quite often that life quickly becomes out of reach as managing RA and all the physical challenges it brings, forces them to change their lives.
They don’t have the same stamina, the pain wears them out, their bodies don’t function like they used to. Its more than pain, its debilitating muscle weakness, exhaustion, and remodeling joints. Whenever you feel annoyed that your bestie just can’t now, imagine how badly she feels about that.
Imagine you woke up tomorrow barely able to shower and dress yourself. Still think they need to just suck it up and go out with you anyway? Imagine you also woke up to find out you’d been injured by a hit and run driver in the night. That is life with Rheumatoid Arthritis.
Perhaps the most challenging aspect of managing autoimmune diseases like RA is the way symptoms can change so much from one day to the next, or one end of the day to the other. Pain and inflammation flares and calms in sometimes completely unpredictable cycles. A knee that works perfectly in the morning may be stiff and useless by afternoon.
To an outsider, not living in a body that can now and truly can’t later, it is hard to imagine why rheumatoid patients cancel plans when they do. Yesterday you saw them at the gym, and they were fine, it is easy to understand why you find their claims that they can’t walk today suspect. But this is the reality of life with RA.
When they say they can’t, they mean it. Believe them and try to be sympathetic. They wanted to join you, they really did plan to enjoy that day out, but they are not in control of when they can and when they can’t. They live their lives at the mercy of unpredictable bodies.
The fact is, cancelling plans disappoints them more than it disappoints you. They do it all the time and its never because they don’t want to leave the house. They have cancelled dinners, dates, shopping plans, medical appointments, days of work, showers, projects they wanted to do. The list of times they have felt the guilt of cancelling because they woke up in a flare are endless. It makes them feel weak and useless. They never feel as though they are in control. It is unimaginably frustrating. Let them know you understand their frustration, be disappointed alongside them, not disappointed in them. They have the self-disappointment covered.
It is hard to imagine life with RA unless you’ve lived it. A systemic disease, it impacts every aspect of life. Unlike the more common Osteoarthritis that comes with wear and tear as we age, RA can impact even the least used joints in the body. Joints you don’t even probably realize are joints.
It does so in a very chaotic manner. There is no real rhyme or reason to what it hits and when it hits. Inflammation can pop up at any time, leaving joints swollen, hot to the touch, stiff, and painful. Anywhere in the body. From jaw hinges to the tiniest of toe joints, any body part can suddenly become useless and painful to attempt to move. This causes every aspect of life to become a challenge.
From brushing your teeth to walking out the door each day, you move a surprising number of joints. Imagine if each of them felt as though they were welded shut. If you’d like to see what that is like, take a long rope, wrap it around your dominant hand so it cannot open all the way, now, wrap it around your elbow, then secure it to your waist. Be sure not to leave enough slack to raise your arm. Now, go ahead and get washed and dressed. Did I mention that you also cannot reach your feet today? Hope you have slide on shoes and don’t mind going without socks, otherwise you better leave 30 minutes to figure out how to get those feet dressed. If you had RA, all those restrictions would also be punctuated by pain.
Since we are getting dressed, let’s take a look in that closet for a minute. Remove every item with buttons or snaps. Hands ravaged by RA, the number one symptom of the disease, cannot manage buttons and other fine motor tasks. Many an RA patient has made the mistake of struggling to button their pants only to find themselves unable to unbutton them at the crucial moment. Yes, sometimes we pee ourselves, trapped in pants we cannot undo. There is nothing much more humbling than being trapped in pee soaked pants. So, let’s just remove those from the wardrobe. Also, remove anything with a small zipper pull, also a fine motor skill, zippers are another great way to become trapped in your own clothing.
Next, let’s take a good long look at that collection of shoes. Remove anything that ties, you can’t reach the laces. Heals are a no, your toes won’t tolerate a heal of any height, toss those to the side. Because your feet are going to swell, and may already be changing shape, also get rid of anything with a narrow toe, pointed toe, or slim instep, you’ll never get them on. How’s the shoe collection looking now? If you’re anything like I was when diagnosed, you’re down to a couple of pairs of clunky slip on shoes. Did I mention you’re attending a wedding this afternoon? Fantastic.
Speaking of weddings, let’s move on to accessories. See that collection of pretty hair ties, barrettes, clips and other things to add a little flair to your hair? In the bin it goes. Don’t worry, the hair will go soon enough, either because it is falling out (a symptom of RA and also a side effect of many RA medications) or because you can’t brush and wash it so you’ll get it cut short and manageable. Speaking of manageable, that jewelry box full of necklaces and bracelets with tiny clasps? Save it for your grand kids, give it to goodwill, you can’t put it on. Same for rings, with fingers that swell when they want to, rings are another great way to get stuck. If you don’t want to have it cut off later, leave it in the box.
At this point, you likely have a massive pile of things you can’t use anymore. Among them, likely some of your favorite things. Frustrated and sad? Welcome to life with RA. That was only what changed in the area of personal care. Notice we never even entered the kitchen or approached any household tasks.
It turns out, life with RA is full of obstacles. Literally every aspect of life is more of a challenge and many things are simply impossible without some sort of adaptive device. The world is full of doorknobs that can’t be turned, bottles and packaging that can’t be opened, stairs that make knees groan, the list is endless, obstacles are everywhere. And chances are…
Now that you’ve taken a walk in their clunky slide on shoes, you probably realize there are many times they are going to need help. So many, in fact, that chances are, they are not going to ask every time they need it. If they are stubborn and independent, they won’t ask for help a fraction of the time they need it. They also might not be inclined to let you help. Even on my worst day, I am not interested in help dressing myself. It feels too personal, too much like something a toddler could do, in short, it makes me feel incapable.
They don’t want to feel incapable. They do need help. Offers of help from you, really make their lives easier and make them feel loved and seen. It may be no big deal to you to bend over and pick up those dirty clothes they’ve been staring at all afternoon, to join them in the kitchen and offer to cut the veggies, to offer to help put on that necklace that makes their eyes sparkle. To your loved one with RA, those offers of help are offers of love. They are understanding and empathy. They appreciate them more than you will ever know. It may sometimes be hard to tell because
There is really nothing that alters someone’s sunny attitude like chronic pain. It is hard to be positive when you hurt literally all of the time. When all you want is a break from the constant ache of your inflamed body. It is not at all uncommon for chronic pain sufferers to lash out, become depressed, or both.
On days when pain is more intense, this can become particularly troublesome as your loved one becomes their least lovable self. Try to be patient and understanding. Know that what appears to be anger and frustration with you is actually anger and frustration at their own body. Possibly at themselves, as they beat themselves up for that sugary treat they ate yesterday, the exercise they aren’t getting and all the other little ways they might be contributing to the symptom flare.
Know that what appears to be anger and frustration with you is actually anger and frustration at their own body.
The truth is, it might be something they did, or it might not. Maybe it was that slice of cake that tipped the scale from a daily pain level of 4 to a holy shit, can we just cut my hand off now 9. Maybe it’s the weather, maybe they did too much yesterday, not enough, slept wrong, didn’t sleep. Possible triggers are everywhere, they don’t understand why they hurt, it is incredibly frustrating.
It’s also exhausting. Imagine walking around with the flu all the time. Body aches, exhaustion, brain fog, these are the most frequent and pervasive symptoms of RA. Sleeplessness due to pain and restlessness brought on by medication side effects are also a factor, as the more tired people are, the less tolerant they are of all life’s challenges.
Even good days are full of pain. It is the most persistent symptom your loved one with RA lives with. And no, Aleve doesn’t touch it. Narcotics don’t even touch it most days, not that those are an option for chronic pain sufferers, the dangers of long-term use are too high. They’re left to fight the pain with various over the counter remedies. They learn to live life in pain, to push through days and nights, hoping tomorrow will be better, as they toss and turn on a sea of pain. It is exhausting and undoubtedly increases the other most persistent RA symptom, fatigue.
Like chronic pain, chronic fatigue is a bit hard to imagine unless you have experienced it. I used to think it meant you felt tired a lot. I didn’t understand just how exhausted a person could feel until Rheumatoid Arthritis really reared its head. I still find it very challenging to put into words. Imagine you wake up underwater, but able to breath. Every movement feels as though you are dragging yourself through water or better yet, maybe it’s a good thick syrup. You also feel vaguely drugged, like waking up from anesthesia. You’re awake, but definitely not firing on all cylinders. If you’ve ever battled the all-consuming sleeplessness of caring for a sick newborn, imagine that had been 6 babies, and you were all alone, for weeks, that’s fatigue!
Exhaustion, brain fog, memory lapse, an inability to string thoughts into coherent sentences, all aspects of fatigue from RA. It can occur with or without proper sleep. You can sleep 10 hours a day and still feel fatigue. A kind of exhaustion that is unrelated to how much rest you get, there is little your loved one can do but hold on and wait for it to pass. While taking a nap might help a bit, they will undoubtedly wake up as tired as they are when they lay down. It’s a symptom that will go when it is ready and come back when it pleases. It is one of the more frustrating challenges RA brings to the table.
With a life filled with challenges, fatigue, pain, insomnia, and frustration it is easy to see that what your loved one needs most from you is understanding. They are juggling a rather heavy load, they often have to drop the ball to keep moving ahead, be okay with that. Pick up those dropped balls when you can.
Watch for the things they really struggle with, offer to take them off their plate, or, better yet, surprise them by getting it done while they take a much-needed nap. Encourage them on the hard days. Take time to appreciate the things they accomplish and celebrate the good days with them. Be a sympathetic ear they can turn to when the days are harder. They often feel alone in this disease, be the one they can turn to for understanding.
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.
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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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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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.
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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
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.
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.
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?
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.
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.
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!
When I was little, Christmas was a magical time of wonder. Each year the anticipation would build as we trimmed the tree and baked cookies, preparing for the arrival of the magical man himself, Santa, friend of elves and reindeer, flying through the sky to bring toys to all the good little boys and girls in the world. Christmas Eve we’d gather at my Nanny’s surrounded by the beautiful chaos of a large blended family. It was hugs and hot cocoa, warm gingerbread cake fresh from the oven, and I couldn’t wait for it to be that time of year again.
By my late 20’s the magic was missing, buried under heaps of stress and grief from all of the less magical Decembers past. I continued to go through the motions to make the magic for my kids, but for years that feeling of anticipation, that magical spark of holiday cheer, was gone. I dreaded the turning of the calendar page to December, now littered with landmines of sorrow and mixed emotions. All those happy and sad memories twisted in a tangled heap like discarded Christmas lights. Like the lights it felt like I was half lit. Every year, I slogged through it, faking it, eventually, little bits of joy crept back in, but honestly, Christmas has become a difficult holiday for me, in a good year. In walks 2020…and December damn near shut me down.
Staring down my most difficult month with none of the chaos that I’ve come to rely on to distract me? Terrifying. How would I cope without all the activity and obligations to keep me moving through the molasses that December is for me? What would force me to get up and fake it when there were no holiday parties to go to? My introvert self freaking out about NOT leaving the house to join a crowd, was a pretty big red flag in and of itself. Hold on, what in the hell are we running from anyway? For the first time in my life, I looked at what hurts in December, in one big, messy heap. I discovered two important things, 1) this is the epicenter of most of the most difficult times of my life and 2) I’ve done well to fake my way through it all this time. Splendidly, truly. It isn’t an easy time of year for me, and nobody would expect it to be. Perspective.
After counting the landmines and marking them on the map, I began to consider the ways I’ve navigated them previously, which of those tactics are healthy, and what I could do in the upside down of 2020 to smooth out my bumpiest month. Crafting, giving, reaching out to those I love, all of these fill my cup. They give me joy. So, I made plans around those things. Plans to inject joy into my month, while leaving room to also sit in the feelings when they come. For the first time, it doesn’t feel like I’m trying to sprint through December and slide into January as quickly as possible. I’m not running anymore and that might just be the most magical gift of all.