Tenacious ME
Tackling disabling autoimmune disease with obstinance and humor.
Best Gifts for Rheumatoid Arthritis 2020 Edition
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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.
Looking to really wow them? The dream gift among those surveyed was a hot tub! Hot tub a little out of your budget? How about a nice hand spa or foot bath instead?
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.
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What Your Loved One With Rheumatoid Arthritis Wants You To Know
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.
It isn’t arthritis
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.
Treating RA is complex, frustrating, and frightening
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, weight gain, 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,
There is no cure
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.
They want to be able to do it all, they just can’t
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.
What they can do today, they might not be able to do tomorrow (and it frustrates them more than you)
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.
Everything is more challenging than it used to be
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. Heels 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…
They hate asking for help
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
Pain rules their world and sometimes their attitudes
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.
Fatigue is more than feeling tired
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.
The thing they need most from you is understanding
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.
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Chronic in a Crisis-
Getting through unexpected situations with chronic illness
When life suddenly hands us a crisis it can be a lot to handle, especially if you are already juggling chronic illness. Getting through the disaster without completely toppling your health can be a huge challenge when life turns upside down. Having a plan to manage your health during times of crisis just might help. Whether you see that sticky situation on the horizon or it has just landed in your lap, taking a little bit of time to plan to be as healthy as possible while you face it will leave everyone in better shape on the other end.
Step 1- Consider your most critical health needs and plan to meet them. This sounds like a no-brainer, obviously if you need certain things to stay alive, it will be important to keep doing them to keep being alive during a crisis. However, if you’ve ever been so stressed out you forgot to do things like eat and drink, you know that distraction can cause us to forget even our most basic biological needs. Making a plan that includes having the things you need packed and ready to roll out the door when necessary can mean the difference between having what you need to keep moving and adding to the situation with a health emergency of your own.
Step 2- Breathe. By far the simplest, cheapest, quickest tool in your arsenal, taking a few minutes to focus on breathing exercises can be a big game changer in times of extreme stress. Calming and centering, deep breathing exercises can slow your racing heart and quiet your frantic mind, allowing you to focus. Reducing the physiologic stress response also means less impact on stress aggravated chronic illnesses. Keeping the stress from overwhelming you with symptoms can be a huge help when life becomes chaotic.
Step 3- Get help. This is no time to be an island. Phone a friend, reach out to your family, let someone know you are in the middle of something big and could use some support. Have a list of things that you can use help taking care of when your focus must be elsewhere. When they ask what they can do to help, you will know what to ask for. Maybe the cat needs feeding, maybe you just need someone to remind you to eat something, consider the needs in your life you are likely to lose track of and plan to get help meeting them.
Step 4- Take good notes (or recruit a friend to record for you.) It is easy to become mentally overwhelmed during a crisis. If you happen to also struggle with memory issues and brain fog as part of your chronic illness, it tends to be worse when stress levels are higher. Taking notes or having someone there with you to keep track of the important details will make figuring out what action to take much easier. Keep a notebook or note-taking app in your emergency kit. Be sure to write down questions and ideas as they come to you so you can refer to them later.
Step 5- Make time to rest and recharge. Perhaps the most challenging part of crisis management with chronic illness, respecting your need to recharge is essential to getting through any situation in good shape. Chances are, whatever is happening has disrupted your normal routines. It is easy to become so involved in dealing with the new stress that you lose sleep. Sometimes it feels entirely out of our control. Thanks to our modern world, it usually isn’t. There are many different options to help achieve a restful sleep, even during a crisis. Whether you prefer pharmaceutical or more natural remedies there are things that can help your body and mind to get a bit of restoration, reach out to a trusted professional for guidance on what is appropriate for you.
6. Be gentle with yourself. Chronic illness doesn’t step aside for anything, certainly not because life is suddenly overwhelming you with stress. Be mindful of and respectful of your physical limits. Treat your body with kindness. Be forgiving of the unhelpful ways it may act up due to the stress and loss of routine. Show it a little love when you can. Take a walk while you phone a friend, sit and watch the birds in the tress for a few minutes on your way out the door, take time to enjoy something that soothes you. It is amazing what a tiny bit of self-love can do to help us through rough times.
Remember, this too shall pass. No crisis lasts forever. When you get to the other side (and you will get to the other side) the care you’ve taken will leave you feeling much less rundown. Reducing the impact on your health, reduces the amount of time you will need to bounce back from that challenging situation. In a body that makes up its own challenges, that can feel like a huge win.
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Infection Frustration
Well, here I am again, putting off infusion because I’ve got an infection. If not for the fact that I just did that two weeks ago for a different infection, I might not be feeling so frustrated. But, here we are, frustration station once again. In the middle of February…while mother nature flings endless mixed-up weather our way. The past few weeks have had me wishing I was a migratory bird, or at least one of the critters who is smart enough to sleep through this mess. Unfortunately, my bank account won’t support my nomadic lifestyle dreams and I can hardly sleep through the night, let alone an entire season, so suffer through it is.
A common issue for folks with rheumatoid arthritis, especially those whose immune system has been turned down by biologics/DMARDS, infections are part of managing life with ra. Knowing it comes with the territory, of course does little to make one feel better about the situation, but it does help to be aware that they are indeed more likely to occur in patients like us. The sooner we notice an infection, the faster we can get medical intervention to get it under control. In a body that is preoccupied with attacking itself, with an immune system that is also suppressed, early intervention can mean the difference between clearing the infection quickly at home and a long stay in the hospital. As someone who loves her own space and hates hospital stays, I try to pay attention to my body and identify infection symptoms early.
Several years in on this treatment regimen and I have gotten used to the way my body reacts, including the types of infections it happens to be prone to. For me those are UTI’s, vaginal infections and sinus infections, and often, as now, one follows treatment of the other. Likely a cascade effect as the first antibiotic treatment knocks down beneficial bacteria, leaving the door open for the next nasty bunch to come along. Had I been a bit more vigilant about replacing the good bacteria, I might not be in this situation. Then again, as out of balance as my body has been the past few months, there may have also been no stopping this train. Some things are inevitable with any chronic illness. Going off meds because you have an infection, happens to be one of those things for many rheumatoid patients.
With a bit of luck and a boatload of antibiotics, this will hopefully clear up quickly so I can get back on track and calm my rheumatoid symptoms. Until then, I’ll be praying for mild weather and upping the self-care game to keep my body as happy as possible. Thankfully, my ra toolbox is packed with remedies and relief, some of which you can find in 10 Tried and True Natural Pain Remedies.
Do you struggle with frequent infections? What are your tips and tricks for getting over them fast? What do you turn to for relief when your normal routine is off the table? Please share in the comments, we can learn so much from each other!
(Before I finished editing this post, I caught yet another cold!! Please, send me all the good juju that I kick it quickly with no infections to follow!)
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We Made It! (a holiday recovery plan)
Is it just me or was the holiday season we just slid through a bit on the challenging side this time around? Everyone I talk to seems to say the same, chaos and confusion were the theme of the season. The theme of my entire December, if I’m honest. The result of all the extra challenges? Stress, pain, and exhaustion. I don’t know about all of you, but I feel like I need a vacation to recover from the entire fiasco. One without any chance of travel delays, breakdowns or problems to solve. Someplace warm and weather free. Since that is clearly a fantasy, I’ll have to settle for recovering at home, problems and all.
Starting with, getting some rest. Having done everything I planned and a load of stuff that had to be done, I am beat! Completely and thoroughly physically exhausted. Bone deep tired. Naps and early bedtimes will definitely be a theme for me this week. As will asking for help with the things that have to happen and letting go of the things that don’t. Anyone bothered by our half decorated disaster is welcome to tidy it up, this maid is taking a break.
Using some of the time and energy saved not folding laundry, I can focus on managing the stress of being in my life. Taking some time to sink into a good book, binge a great show, listen to some tunes and create something just for fun are all definitely on my to do list this week. Adding in some more intentional stress management like breathing exercises and journaling should get me back to a normal, able to cope level of stress.
The rest and stress management will both help calm my immune system down and with it, the pain. Meanwhile, my heating pad and I will be spending alot of quality time together, right after I dip my entire body in cannabis salve. Rounding out my pain management plan with cannabis flower should keep my pain quiet enough for resting (and help with the creating of fun art!)
Taking a few days to focus on those three things will have me feeling better, faster than pushing through and ignoring it ever did. What helps you get back on track when life as run you over?
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Tackling the Holidays, Chronic Illness Style
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. When 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, 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. 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 allow 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!
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 things at a time over a week or two. 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 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 2022 gift guide!
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Handy Arthritis Tools That Reduce The Struggle
Do you find yourself struggling with tasks that used to be simple? Have you ever stayed in pj’s simply because putting on clothes sounded like too much work? Cursed and cried in frustration when you couldn’t get anything open to quench your thirst? Panicked when you couldn’t open your own front door? If you live with chronic inflammatory arthritic conditions, you likely have experienced one or all of the above as your previously agile joints become cranky and uncooperative, I certainly have. The struggle to do the simplest tasks can become very real, and very frustrating.
Luckily, we live in age chock full of gadgets and aids that help make everyday tasks simpler. From bathing to dressing, cooking, cleaning, driving, and everything in between the number of clever gadgets to help get things done is truly baffling. Since it would be impossible to cover them all, let’s start with the ones that solve the most common issues arthritis patients struggle with.
Bathing and Dressing-
An area people with arthritis often struggle with is self-care tasks, like bathing and dressing. Luckily, there are a wide variety of tools that can help with the special challenges these tasks present. Look for wide handled and long handled brushes, combs, bath sponges and even lotion applicators. This is also where you will find my second most used tool, the dressing stick. Handy for taking off and putting on clothes, along with dozens of other tasks around the house (like fishing laundry out of the bottom of the washer), I’ve got these in every area of my house.
Because it is foolish (and sometimes dangerous) to waste all your energy standing in the shower, a shower chair is a wonderful energy saving item to have in your bathroom. On days when balance or a crabby body part are making standing up extra challenging, they also can make the difference between worth it to take a shower and not. A second seat somewhere outside the shower can also be a big help, giving you a place to rest while you groom and dress/undress.
If reaching your feet has become a struggle, stop fighting it and grab a sock helper. I prefer a soft, flexible one because I don’t have to struggle to pull the sock onto the tool. While you are searching for tools to help dress those feet, be sure to pick up a long-handled shoehorn, to take the struggle out of putting on shoes. (Handy for pushing off socks or leggings as well, I own 3!)
Around the house
Keeping up with household tasks can be a struggle, with or without arthritis in the picture. Cooking, cleaning, laundry, taking care of children and animals, there is a massive amount of work that goes into cleaning up from daily life. If you are also physically struggling to do all of the things, it can start to feel completely impossible to keep up. Luckily, we humans have invented handy tools and gadgets to help out with most of the day to day household things we all have to get done. Because it would literally fill a book to share all of the amazing (and sometimes odd) inventions out there that can make household tasks easier, let’s focus on a few that solve the most common arthritis struggles.
First up, bottle and can openers. Let’s face it, getting into some food and drink packaging when you have arthritic hands feels like an impossible task. If you’ve ever struggled to get into a bottle of water just to give up, it is probably time to invest in a few handy bottle openers. Look for one that opens a variety of sizes of bottle and has a nice chunky grip to hold onto. While shopping for items to help you bust into bottles, do yourself a favor and grab an electric can opener too. Your wrists will thank you.
Next up, the most used item in my house, for gaining access to everything from food to deliveries, is scissors. Seriously, these are scattered throughout my house, car and purse. Look for big chunky handles for better control and easier grip.
Speaking of grips, when it comes to improving your ability to get things done in the kitchen, considering the handles of your most used tools is a great place to start to make some simple changes. Either replacing spoons, knives, and other utensils for models with chunky handles, or using handle adapters that come in a variety of sizes and styles to accommodate whatever kind of hand grip you have to work with, can make kitchen tasks both simpler and safer.
Continuing the handle theme, simplify cleaning tasks by grabbing long handled tools. Scrub brushes, dusters, and mops with long chunky handles can help take some of the bending and stretching out of daily chores, easing the impact on your cranky body. Not a tool, but a change of attack, choosing to sit while you work is another great way to reduce the toll of cleaning and cooking.
Better than doing it yourself, there are also a ton of products on the market that will do the job for you! With both wet and dry versions now available from several manufacturers, floor cleaning robots are perhaps some of the more popular of these items. Stand mixers, food processors, peelers, grinders, juicers, scrubbers, vacuums…whatever the task you are trying to do, chances are there is a gadget for that.
Getting around
Since RA can flare up in any of the 360 joints in the body, 60 of which are in your feet…it is no surprise that walking and general mobility can become a challenge. Luckily, there are plenty of things out there to help with walking, balance, or even a lift to get you where you need to go. At the top of my list is my handy collapsible walking stick, great for helping me balance on rough terrain, but also a huge help when even flat surfaces are a challenge to walk on. Paired with a lightweight, portable tripod stool for taking a break along the way, it also helps me get farther on my expeditions. Other options include canes and forearm crutches, both of which reside in my emergency mobility tool stash. Great for longer outings, balance and a seat on the go, rollator walkers are another extremely handy mobility device. Having a rolling seat with you can seriously improve the experience of a long shopping trip!
If your arthritis has progressed to the point that walking with assistance is just too painful, consider picking up a wheelchair or electric ride on device of some sort. Not only for those who cannot walk at all, these handy ride on tools can make getting around simpler and allow you to go on much longer trips and excursions.
One of the keys to living a full, able life with RA and other arthritic conditions is to lean on the available tools that make getting things done simpler. The energy saved not struggling to do the little things, is a precious resource, especially when you have a limited supply for the day. Leaning into arthritis tools means you will be able to do more, also precious when life can be a struggle. What tools do you find most valuable in day-to-day life with RA? I’d love to hear about the handy gadgets that help you get things done!
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Tackling Trigger Foods
If you have spent much time in the rheumatoid arthritis community, or researching natural remedies for chronic illnesses, you have no doubt seen the claims that a change in diet can do everything from improve symptoms to cure the disease entirely. While I’ve personally not found any evidence that food can cure RA altogether, I have both seen and experienced the often talked about reduction in inflammation that a proper diet can give.
The fact is, there are many foods that can and will increase the level of inflammation in your body. The list of potential “trigger foods” (things that increase pain and inflammation by causing an immune response from the body) is long and somewhat perplexing. Common trigger foods include such things as sugar, gluten, dairy, nuts, and various fruits and vegetables, and depending on who you ask, meats and many oils and fats as well. Upon compiling a list of potential inflammatory foods, in fact, one might end up with the impression that all food is inflammatory. Luckily, not all “trigger foods” trigger symptoms in all people, great news as food is an essential part of staying alive and variety is rather nice if not entirely essential to one’s survival.
Unfortunately, the variety of possible trigger foods paired with those individual responses to said foods, can make it a rather daunting challenge to sort out what foods are doing you more harm than good. As a firm believer that plants are indeed the best medicine for many ailments and that your body is only as good as the blocks you build it from, sorting out what foods I personally should and should not eat has been at the top of my list of ways to help manage RA from the start. Several years, and many different anti-inflammatory diets and elimination trials later, I can solidly say that sugar, gluten, corn, some dairy, sweet potatoes and bananas should not enter my body. Notice I say should and not don’t, because, well I am human, a human with a complex relationship with food, as many people have.
Ask me for a list of my favorite comfort foods and the problem quickly reveals itself. I have developed a habit over my lifetime of taking comfort in the things that feed the fires of my body. As it turns out, this is, in the long run, not so comforting. Unfortunately, old habits die hard, and old crutches are easily picked up when life smacks you in the face. Doubly so if those smacks from life result in stress and an increase in inflammation, making dietary restrictions to slow that down feel futile and not worth the willpower. Since you feel like hell anyway, might as well eat the cake, right?
I’m sure some of you are baffled that I would choose to eat something knowing full well it will cause me pain later, I’m just as sure many of you agreed wholeheartedly, eat that cake and take the short-term comfort. Having lived all my life in the latter group, I am finally, after years of work on self-love and building healthy stress responses, leaning toward the more reasonable, less damaging choice, leave the cake and take a walk to clear my head. That shift, and the trials that lead me to know for certain that the cake was not helping me, were not simple, straightforward journeys. Like every journey worth taking it has been full of ups and downs, and more than a few dense thickets that I had to chop my way through. So, when my most recent foray into figuring out how to better feed myself ended in a briar patch , it was not entirely surprising. What was surprising, was how well I’d done up till then.
When people talk about elimination diets like the oft touted AIP, they go into great detail about all the things you remove from your diet. What they tend to gloss over is, how much of a challenge it is for many of us to change our daily eating habits. My first several toe dips into sorting out my trigger foods ended quickly and pathetically, leaving me feeling like a failure. They made it sound so easy, you just eat what is on the list and avoid what isn’t. Without any need to calorie count or limit the amount of food you eat; it sounds simple enough to fill up on foods that should be good for you. I’m sure for some people it is, however, those people obviously have a different relationship with food than the rest of us.
For the rest of us, filling up on good for us food does nothing to diminish our longing for that forbidden fruit. When food has become much more than nourishment for you, when it has also been a security blanket you use to soothe the wounds of day-to-day life, breaking those habits and sticking to the plan can be a massive challenge. A challenge I have circled and poked at most of my adult life. The key, it turns out, was learning how to treat myself with love and value my independence. I’m pleased to say, my most recent foray into sorting out food triggers proved to me that I have finally climbed to the top of that mountain. I know how to keep loving myself and caring for my needs even in crisis. A huge shift from my former smother it in sugar and keep moving self.
My most recent attempt to determine what I should eat and shift into more healthy eating habits, a 6-week run at Keto, went better than any previous attempt at giving up foods that include cake. Having figured out that substitutes just make me crave things more, I shifted into a whole foods diet free of “treats” and, after the adjustment period, enjoyed several weeks of reduced inflammation and increased energy.
Just how much it was helping proved itself around week 5 when my husband’s rare autoimmune blood disorder attempted to take his life, as I stuck to the plan through the entire harrowing journey and 10-day hospital stay that followed. Knowing my stress level was through the roof, my routine was blown all to hell and my activity level was walking the halls trapped in a hospital…I was amazed at how alright I felt. Leaning into the things I could do to support myself, was getting me through the most stressful experience of my life, without so much as a limp to show for it. I stuck with it, right up to the end of our stay, when I finally thought to check my own patient portal. There I discovered a message from my doctor expressing her concern over my latest liver and kidney function numbers, which had drastically spiked in the past month. A short email conversation with her later, we felt fairly sure of the answer, ketosis added to the strain of medications, tipped the scale and landed me in the danger zone. The following month’s blood results confirmed that suspicion.
As good as it was making my joints feel, it seemed keto was not going to work for me after all. The good news? I had affirmed that I could feel better if I avoided certain things. More importantly, I had learned that I could avoid the things that caused me pain, even in a crisis. Unfortunately, I still landed in the briar patch at the end. This time, though, I didn’t feel like a failure, because this time, I didn’t falter, though I did have to give it up in the end. One great thing about facing a problem proud of how you got there, knowing you can handle it makes the task ahead feel less enormous. I may not know what diet my entire body will tolerate quite yet, but I have many new clues. More important, now I know I can let go of what is not helping me. With a little work and the right tools, I feel sure I can sort this out. So, back to the food and symptom journal I go. Having trouble sorting out what is helping and what adds to the fire? Download my free printable symptom journal today.
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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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The Problem With One-Size-Fits-All Solutions
If you have ever needed to lose a few pounds, get in better shape, or solve a health related issue, chances are you have met them. The one size fits all solution givers. You’ll recognize them by their claims that their system/product solves the problem in question for everyone. The fact that that is a biological impossibility will do nothing to derail their belief that it is true, this is the answer, they know exactly what you need to fix your life. Honestly, it is hard to blame them. The information they are seeing supports the idea they have been sold on. A combination of their own positive experience, literature about the magic solution in question, including the compelling science behind it, makes it seem legit enough. There is just one little critical detail that the science may have skipped over, something the one size fits all solution holder has missed. You are not them.
Humans are not all the same. All it takes is a quick look around at the humans you are sharing space with to know that is true. Our obvious physical, genetic differences are too plentiful to count. Add in the differences in our behaviors, backgrounds, experiences and exposures, and even within a single family unit we see that we are similar but certainly not the same people.
Thanks to a little thing called biological diversity, humans are not all the same. A term usually heard in wildlife management circles, biological diversity refers to the variety of life in an area or population. In this case, we are looking at population level biological diversity, in other words the genetic differences that can be seen among humans.
All those differences? They add up, creating your personal biological system, your body. (magical, isn’t it?) Because each of us is a unique biological system, with unique chemical and biological needs and responses, each body reacts differently to whatever we decide to do to it. The spicy tomato based sauce that has you up all night with heartburn, may not bother your spouse at all. The exercise routine that melts the pounds off your friend might be nothing but pain and misery for you. The point is, our bodies, and the way they respond to the things we expose them to are all different. This means the solutions to the things we wish to correct will undoubtedly look different as well.
Unfortunately this means that few and far between are the answers that work for everyone. Whether or not a product, diet,or workout works for you will depend entirely on your individual needs. The bad news, finding what works for you is going to be a process of trial and error. The good news? You don’t have to jump on that trendy band wagon just because everyone claims it is the answer, instead you can find the solutions that work for you.
Need help sorting out what works for you and what does you more harm than good? Grab a copy of our free printable symptom journal today!
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Learning to Lean-How Adaptive Aids Improved My Life
I used to look at adaptive equipment and see it as a flashing neon sign, complete with an arrow pointing at the user (me), “This person is weak” the sign flashed, “can’t do normal things” it sometimes proclaimed. I avoided using tools made to help ease the stress of daily life. After all, those arthritis aids were for people who couldn’t and I could (kinda, with a lot of struggle, okay and maybe occasional tears) but I wasn’t so bad off that I really needed assistive devices, or so I thought. I thought I was fighting to remain independent. It turns out I was just fighting the use of tools that would make tasks simpler for me. Yep, that’s me alright, stubbornly chopping down the trees with a hatchet because I can’t have people seeing me use a chainsaw. The irony? Before diagnosis, I would not hesitate to pick up a tool to make a job simpler. In fact, my creative use of tools was always one of the things I was most proud of, Yankee ingenuity is in my blood. So why the tool avoidance after diagnosis? It turns out, I was more afraid of appearances and the labels they bring than I am stubbornly independent. (Even I was surprised by that one!)
The result of my stubborn tool avoidance? Struggle, giving up, and more tears than this stoic Maine girl is used to shedding. After a few weepy pity parties over the things I couldn’t manage and a complete breakdown involving a water bottle which may still to this day live under the bush I hucked it at, I began to realize I did have a choice. To struggle or to get help. Finally starting to come to terms with the limitations RA had been putting on my body, I began to consider how I could work around them. That acceptance, that RA was hampering my ability to do, was essential. It turns out it is essential to every part of the RA journey, but that is a much longer story. My first assistive device purchase? A bottle opener, if you have ever lost your shit over an inability to get a drink of water, you know why that was my first toe dip into the world of arthritis tools.
Cut to a few years later and my house is loaded with handy little things that make my life less of a struggle. Bottle openers, dressing sticks, shoehorns, various electric kitchen gadgets, scissors and a whole slew of other helpful aids now live in my home making it safer and more accessible for me, and surprise, giving me more independence. Most of those tools were picked up willingly, some even came with some excitement as I knew they would make me more able. In the fight against disabling disease, that is priceless. Giving myself permission to make that fight easier, shifted things in a small but crucial way.
That is not to say it just shifted all at once and I was able to seamlessly accept all sorts of helpful tools. Quite the opposite. Each set of tools purchased followed an acceptance of their necessity, my need to do. This meant accepting the need for help over and over. If you have followed me long, you may know my stubborn independent nature made that tougher than it probably needed to be. It certainly did when it was time to pick up a cane and eventually a walker.
Some lessons only sink in if we repeat them over and over, accepting help is one of mine. Coming to terms with the fact that my legs were no longer interested in their supportive role, and unable to submit to a life on the couch, eventually led me to accept the need for a cane to help me hobble along. As something I would need outside of the house, making my struggle visible to the outside world, that was not such a simple tool to pick up. In fact, it took extreme need and a moment of desperation for that to happen for the first time. It took a loved one landing in the ICU in critical condition when I had been barely able to walk for a week for me to chose to pick up the cane my doctors had suggested I might find helpful. In the battle between able to get to his side and unable to be there, there was no contest, I had to figure it out, so we stopped and got my first cane on the way.
Since that desperate day, I have made a pact with myself, never let it get that hard before accepting help. Whether that be the assistance of a loved one, or some handy gadget or piece of adaptive equipment, taking help when it is needed, opens life with a disease that often shuts doors to us. It gives us freedom and independence, and perhaps most importantly, it saves our energy for the things we wish to do. Living in a body that can turn the simplest tasks into a struggle, that is a priceless resource.
What handy tools for life with RA can you not do without? Keep an eye out for our upcoming guide, Handy Arthritis Tools That Reduce The Struggle.
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Stress and Chronic Illness
In a world where things are anything but simple, with a body that is anything but well behaved, its no surprise that stress plays a big part in the lives of most people with autoimmune diseases like Rheumatoid Arthritis. Between juggling responsibilities and fighting your own body to accomplish them, the stress can easily reach overwhelming levels. Add in a little worrying about the future with said disease, and some guilt about the tings you aren’t nailing, and its no surprise that many autoimmune patients feel stressed. Realizing stress also increases the activity of such diseases, it’s easy to see how that could quickly become a problem.
Learning that stress is one of the most frequent triggers of autoimmune symptoms is a bit like being told breathing makes your symptoms flare-up. Stress is an inevitable part of life, especially for those with chronic disease. Let’s face it as much as you might like to, you can’t simply eliminate all stress from your life. I mean you can certainly try hiding in your blanket fort and coloring all day between snacks and naps but, eventually you will undoubtedly have to face the reality of your life and deal with the things that stress you out. That is the bad news. The good news is stress management can and should include naps, snacks, and even some time alone in the blanket fort if that is what floats your boat.
While we can’t eliminate all of the things (or people) that stress us out, it is still important to consider letting go of some of the ones you can be done with. If something or someone is constantly causing you stress, consider the ways you might be able to step away from that. Changing jobs, downsizing to a more affordable house/car, taking the time to enjoy life, can all decrease the amount of stress your body is dealing with. Less stress means less disease activity. If you live with chronic illness you already know, less disease activity is the golden ticket.
Because stress feeds disease activity, flipping the stress feedback loop from negative to positive can make a huge difference in the way you feel, which in turn impacts the way you cope with pretty much everything in your life. So, how do we flip the script on stress? The answer is good stress management. While what that looks like will vary a bit from person to person there are a few tried and true keys to successful stress management, and wouldn’t you know it, they are exactly the same as the keys to managing chronic disease!
Sleep
The number one most frequent recommendation for health and healing, it is no surprise that getting a good night of rest is one of the keys to good stress management. If you have ever been faced with an extremely stressful situation on not enough sleep, you’ve probably already guessed, sleep mitigates the level of stress hormones in our body, resulting in better function when we are rested. When stress hormones have had the chance to do their thing while we rest, our reaction to stress is more controlled. If you’ve ever lost it over a missing shoe after being up with the baby all night, that was stress hormones. The unbalanced scale tipped because of the lack of sleep, not the search for the shoe.
Exercise
The second most recommended key to healthy stress management is perhaps a bit tricky for many chronic illness sufferers. After all, for many of us exercise aggravates existing conditions. That said, lovingly moving your body is also one of the keys to continued mobility as well as a great way to keep your stress in check. It is also a healthy way to react to the body dumping stress hormones in, no bears in your woods to run from no problem, use the hormone spike to run for fun. Unless running hurts or is a no for your particular condition, then perhaps consider getting the blood and hormones cycling through in a gentler way, say with a brisk walk, a swim, or some time on a recumbent bike. (Never run from a real bear, one should only run from metaphorical bears.)
Nutrition
The third key we are diving into for stress management is nutrition. The saying you are what you eat is, unfortunately true. What goes into your body will have a huge impact on how that body behaves. Everything from our weight to our sleep patterns and our ability to manage stress are impacted by the foods and beverages we choose to consume. If you are living on sugar and caffeine and your stress is through the roof, know that your choices are fueling the stress fire. Our bodies need nutrients to make the systems work properly. Without getting into a bunch of complex chemistry, its enough to understand that every action your body takes from beating your heart to moving water into and out of your excretory system requires the movement/binding/presence of specific molecules. If the things your body needs are not being provided it will either fail to complete that process, or more often, get creative with what it has. This can lead to depleted resources and a poorly running system. A poorly running system will give everything it has to the life continuing aspects of your body, keeping that heart beating and lungs working, after that it is all about prioritization. Unfortunately (or fortunately, I’m never sure) our bodies can function pretty well with unbalanced stress hormones on board, making it a non essential fire to put out as far as the brain is concerned. In fact, if things in the body are particularly critical, the stress response may be considered just another alarm to a brain trying desperately to please its cohabitants with whatever can be extracted from Doritos and lattes.
Healthy Relationships
Something I believe should be on every list for healthier living, healthy relationships with the people we choose to spend our time with are essential to stress management and our overall happiness in life. If you are hanging around with people who drive you crazy, stress is inevitable. Spending more time with the people who allow you to get out of that head space and enjoy moments will always leave us in better spirits, and with measurably lower stress levels. Focusing on building those positive relationships and letting go of or limiting your exposure to the ones who drag you down will find you in much better shape stress-wise, and you will also be building the right kind of tribe to get you through life in good company. Essential for everyone, perhaps doubly if you are living with a chronic illness or two.
Talk It Out
Let’s face it, sometimes all the stress management practices in the world cannot outweigh the very real weight of a stress filled life. Especially when the things we are going through feel too big to handle. You may have caught on by now but that old saying ‘that that doesn’t kill me only makes me stronger’ is a crock of shit. Plenty of things leave us standing but worse for wear. Shattered yet functional. While it certainly takes strength to carry on living a normal looking life when you feel like you are barely hanging in there, it definitely isn’t building you up. Don’t allow life to drag you under all that stressful reality. Find someone who you can share those burdens with. Everything gets smaller if you get it out of your head. Rather it takes the form of a therapist or weekly coffee with a trusted friend, we all need someone to share the heavy stuff with. A judgement free zone of understanding and acceptance of us right where we are, can be exactly what we need to gain the perspective to move beyond something that has us trapped in flight or fight mode. Reaching out to people who have been there and done that? Absolutely priceless.
Relaxation
The final key to stress management, and probably the most obvious, is taking time to relax. When life is running you over with stress this idea may seem impossible, laughable even, but it is also essential. Finding time to do the things that bring you calm in the middle of a stressful situation can bring clarity and calm,which lead to clearer thinking and better decision making, and perhaps less stress down the road. Taking time to relax when you are not trying to put out a fire, is even more beneficial. In a relaxed state our bodies function more efficiently. Our heart rate and respiration rate drop, muscles release tension, and everything from brain function to digestive processes run more smoothly.
While yoga and meditation are probably the things most often thought of for relaxation, there are a wide variety of techniques that help people feel more calm. Which method(s) you choose will depend on your personality and what feels relaxing to you. If yoga hurts and distracts you, it isn’t likely to also be your type of relaxation. Perhaps your relaxation looks more like strolling quietly through nature or sitting with a warm cup of tea and gazing into the distance. As the sole resident of your brain, only you will know what brings calm to your mind and body. If you don’t know what that is yet, try some of the following.
Stress may be inevitable, but living in a constant state of stress doesn’t have to be the norm. It shouldn’t be the norm. Taking a bit of time each day to care for ourselves properly can help protect us from the long term impact of a stress filled life. Knowing stress feeds disease activity and may steal literal years from your life, it is worth the effort to manage it well.
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