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"For many people, the holidays and all the festivities are a wonderful time of year," says Noelle Chelli Lopez.

"But for those of us who are chronically ill, holidays can cause an increased level of stress, and often leave us feeling even more isolated and left out from normal life."

Many hidden challenges of living with chronic illness and pain can so often be magnified at this time of year.

"While chronically ill patients struggle with sharing feelings, loved ones are confused on how to offer support," says Lana Barhum.

"There are many things a chronically ill person wants their loved ones to know but are hesitant to share."

—We think we let you down: "Chronically ill people often have to cancel plans or are unable to follow through on promises. Even though your loved ones tell you that they understand, you still feel bad," says Lana.

It's never because we don't want to, we long to connect with others, to get out when it's so rare, to keep our word, and enjoy this time too, especially when all are celebrating.

But articulating this, explaining that we cannot do as planned creates its own kind of pain.

It can feel as if our illness has let others down, while if they are less than understanding, it can make us feel guilty for being sick.

"Chronically ill people may also apologise to explain that they are just as upset about their inability to participate," adds Lana.

—Our grief is ongoing: "Grief comes in waves. One minute, you are accepting the changes and challenges that chronic illness brings, and the next, you are overcome with sadness," says Lana.

This is of course, magnified at Christmas. "It is a lot more complicated when you are sick during this time of the year," says Annie Perkins.

"The holidays can be a trigger, a timeline, a reminder of how long you've been sick, and of all that has gone on throughout the year.

"It can feel defeating when you are at the same place." Equally, if things have changed for the worse, this too creates complex feelings.

—Over-Stimulation Flares Pain: Central sensitisation and allodynia can make even the briefest time in company exquisitely painful.

"Whether it’s stress, big crowds and noise, or simply the excitement of the holiday, over-stimulation is quite often the cause of a flare,” says JoJoisms.

Keep in mind that stimuli increases pain dramatically, and that we may need to take frequent breaks to escape and calm the pain.

—It is hard to communicate feelings: “The holidays can bring family and friends who you do not see regularly, people who care and have many questions," says Annie.

It's hard to articulate a life so vastly altered, so limited by disability and pain.

"People who live with illness, pain, and loss of independence often struggle to find the words to describe how they are feeling," says Lana.

"Sometimes they don’t feel comfortable talking. When there is much you can no longer do, there are plenty of times you just don’t know how or want to talk about it."

"It is fine to say, 'I don’t want to talk about my disease today, maybe we can get together after the holidays'," adds Annie.

—We Still Need to Manage Symptoms: "One of the hardest things is the disruption of routine. Many are on strict regimens. Having a few days out of that routine can really throw them off.

"It is not as easy as throwing back pills and going on with the day. It is deeper than that.

"This is one of the things that is hard to explain to others who are not chronically ill so it's important to let others know when I am at my limit."

—Ask how you can help: "People who are chronically ill can struggle with completing basic tasks, and during the holidays, those tasks increase exponentially," says Noelle.

"The best gift you can give to someone who is sick is the gift of assistance. Stop by and vacuum, drop off a meal or offer to pick up some groceries."

—We often don’t say if we're struggling: "They may struggle alone because they hate to make people feel uncomfortable or obligated in any way," says Sarah Turner.

"Many times, you might notice they disappear for a time. This is often when they are trying to manage their symptoms and are too sick to do much else." If you notice a friend's absent, send a thinking of you note. It means so much.

—We are grateful: It may sound contrary but living with pain and such limitation gives you a profound gratitude for so many things many take for granted.

"Living with illness and pain gives you a different perspective, you can find gratitude in the simplest of things," says Lana.

"You are grateful when well enough to spend time with a loved one, outside or reading a book. Mostly for the people in your life."

—Send invites even if you don’t think we can come: "Feeling left out is incredibly difficult. Sending us an invite and letting us know there is no expectation, makes us still feel included," says Noelle.

Things to Keep in Mind About Chronically Ill Loved Ones During the Holidays—more links below <3 Gentle hugs x x x ... See MoreSee Less

5 Things to Keep in Mind About Your Chronically Ill Loved One During the Holidays

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"I wished there was something that let other people know it is a lot more complicated when you are sick during this time of the year. Something that could show it from our side."

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The Princess in the Tower

“You’re lucky you’re young,” casually comments the older woman sitting next to me, “You don’t have to worry about arthritis in your hands.” I knew it was an innocent comment intended as a lighthearted joke," says patiet-advocate Christina Carrell.

"An attempt to be friendly, or even as a compliment of sorts. But I also knew how the observation, however well-intentioned it may have been, was wrong at best and hurtful at worst.

"I knew all too well that young does not mean disease-free, worry-free, or especially pain-free. I knew that pain could strike at any time, and for me, had begun its assault on my body at the ripe age of twenty."

No matter how long you've lived with chronic pain and invisible illness, one thing that forever complicates and creates tension for all of us is the incongruence between our looking well and how we actually feel.

It creates an equally vast gap in the understanding of others, even those we're closest to, and despite the prevalence of invisible illness and chronic pain, also even our doctors, in turn producing another kind of pain, that of being misunderstood.

"Not only do you have to put up with challenging, often painful, and sometimes debilitating conditions every day," says Wyatt Myers.

"But on top of that, you may have to face skepticism from people — friends, family, and co-workers, as well as strangers — who don't understand what's wrong with you."

It adds to the stress of living with invisible illness and disability when you have to also try to convince the world that your symptoms and pain are real.

Though even if heartwarmingly empathetic, it is of course, impossible for others to truly comprehend without direct experience, something so complex, a life so vastly altered, and the unending process each of us faces in every moment of everyday.

To manage the pain and avoid flares as best we can, and, of course, endure those flares when they happen.

Every act is assessed for potential threats and consequences, each one paced and measured, and likely done at the expense of another task, no matter how essential.

Before all else this is a completely different way to live life, and one that widens the gap of others' understanding, especially when this too is as hidden as the chronic illness(es) and pain.

In the spirit of raising awareness, hopefully a little empathy and compassion too, here Christina offers five reasons we should never assume another person isn’t in pain. Here are some excerpts:

—Many people with chronic illness look healthy: "Chronic illness doesn’t always come with a walker, a wheelchair, a cane, a cast, a brace, or any other assistive device," says Christina.

"Of course, the absence of these items can be both a blessing and a curse. Among people with multiple sclerosis, a whopping 75 percent will never need a wheelchair. But that doesn’t mean they aren’t suffering."

—Chronic pain patients are good at pretending: "Although I never deny that I’m in pain, I don’t enjoy the pity that comes from admitting to everyone I meet that I’m in pain every day. I’m also the mom of a toddler, and I don’t want him to always witness me suffering every day," says Christina.

"So when I’m able, I’ve learned to put on a happy face and ignore my pain the best I can. Many other chronic pain patients with all sorts of ailments, especially invisible ones, learn to do the same thing in order to carry on with their normal lives."

—Disease and pain can strike at any age: "Many people falsely imagine disease and pain as afflictions confined to old age. Sadly, many diseases affect people of all ages, including children," says Christina.

"Over 90 percent of people suffering from Lupus are between the ages of 15 and 45, for instance. The average age of onset for migraines is twenty. And Juvenile Rheumatoid Arthritis is just one example of many diseases that affect children under the age of seventeen."

—Chronic pain patients have good days and bad days: "Many diseases and ailments that cause immense pain involve flareups and remissions. On my good days, when I’m out taking my son for walks in his stroller.

"You’d find it hard to imagine that there are many days where getting out of bed is a goal I can barely attempt.

"Just because someone looks good today doesn’t mean they look good every day. There can be significant consequences involved with assuming things about other people."

What would you add to this list? As always, feel free to add your thoughts below. <3

5 Reasons We Should Never Assume Someone Isn't in Pain

Invisible Illness: When Others Can't See Your Pain

From the Tower's blog: But You Look Good: Living with Disbelief of Invisible Illness and Chronic Pain <3 Gentle hugs x x x ... See MoreSee Less

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5 Reasons We Should Never Assume Someone Isn't in Pain

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"If I could be suffering and still look fine on the outside, what else could other people be silently enduring?"

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The Princess in the Tower

Although our lives are so often already stripped to their barest bones with complex chronic illness and pain, when immobilised by a flare-up or setback, it can feel entirely paralysing, as if all life has stopped.

When you're stuck in bed and in so much pain that even baring weight induces fear, with allodynia translating even the most innocuous stimuli to pain — from sound to a cool breeze that sends your pain levels soaring — it’s hard to think of anything at all beyond the moment, beyond that pain.

“Things can get crazy during a bad pain flare," says C. M., who wrote the first post. "The “pain brain,” as I like to call it, is in full effect and vastly limits my capabilities.

"My attention span and patience are nonexistent. Every day of a flare presents challenges, emotions, limitations and frustrations that many with chronic pain have to deal with regularly.”

With their exacerbated pain and symptoms, increased disability, isolation, and of course, the uncertainty, anxiety and stress of not knowing when they’ll abate — lasting as they can from days to weeks to months — flare-ups are perhaps the hardest of all to cope with.

As it’s not only the flare or the guilt and helplessness these times engender, nor even the depression, loneliness and loss, but also the consequences, and the longer it goes on, the greater those consequences.

Living with a condition that can halt everything in an instant, especially if denied enough recovery and rest, creates the most complex feelings of all, which are then fused with the greatest pain and limitation.

In the spirit of helping others understand, here are some excerpts from C.M.'s post:

—Sometimes There's No Cause: "I try to figure out how much things will cost me in advance and plan accordingly. Then there are the flares that are unexpected, unwarranted.

"There isn’t always a moment where I know, “Oh this is going to send me into a bad flare." Sometimes, I just wake and don’t know if it is just a bad day or the start of weeks or months of debilitating pain.

"Other times I am in the midst of something where I just know the next few days or weeks will be bad. There is nothing quite as bad as knowing that whatever I am doing will cost me for weeks to come."

—We Don’t Know When it Will End: "I have flares that last two weeks and others that last upwards of three months. Sometimes I wake up and the pain has lessened and I am left with the “flare hangover” of severe fatigue and brain fog.

"Give me a few days and I can be back to my 100 percent. (Please note: my 100 percent, which is not the same as a healthy person’s). Other times, I get admitted to the hospital. I receive infusions or treatments in an effort to break the cycle. I try new treatments or medication combinations. Other times, my doctor just tells me to rest."

—It Can Go Away As Quickly As it Came: "Sometimes, I wake up and return to my baseline pain. Why? I don’t know. But, I am so grateful when those days happen, however they happen."

—We Don’t Want to “Waste” Medications in Case Tomorrow is Worse: "Say I wake up at a 8/10 pain. I have medications that can lessen that pain and make it more tolerable but I am only allowed to take them so many times each week or day.

"What if tomorrow is a 10/10? I will be kicking myself for using the medications when I was at an 8."

—We Won’t Eat: "I have no energy to do anything except exist. The thought of getting to the kitchen to cook something is excruciating. Calling takeout would require making coherent sentences to order and then answering the door. Sometimes, all I can do is breathe."

—Everything Takes Far More Spoons: "When I have no choice but to do something, it is far more taxing than normal. And if I am not back in my bed at my time of expiration, you can expect me to collapse right where I am. Literally.

"Like, when the clock strikes midnight and the carriage turns back into a pumpkin, the gown back into rags... My body goes from capable to incapacitated in the blink of an eye."

—Sometimes, We Don’t Leave the Bed for Days: "I get up to use the bathroom and that is the extent of my physical activity. I will carry an armful of water bottles to my nightstand so I don’t have to repeatedly get up for water."

—I Cry...a Lot: "I am not saying this to make you feel bad [but to show] how difficult flares are, not just physically, but mentally. I am overly emotional and charged so the tears come far easier."

—It’s Not You, It’s Me: "If you speak or see me on a bad flare day, I am antisocial at best. It isn’t anything you said or did. It is 100% me. I am tired, hurting, frustrated, possibly guilty and/or angry depending on what landed me in this situation.

"It isn’t your fault and I am sorry if I seem grumpy. I promise you did nothing. My body did."

15 Things I Wish Others Knew During a Pain Flare-Up

How to Cope with Setbacks & Flares of Chronic Pain

What I Wish I Had Known About Complex Regional Pain Syndrome Flare-Ups

What do you wish others knew? <3 Gentle hugs x x x ... See MoreSee Less

15 Things I Wish Others Knew During a Pain Flare-Up

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"Every day of a flare presents challenges, emotions, limitations and frustrations."

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The Princess in the Tower

“No matter what happens, or how bad it seems today, life does go on, and it will be better tomorrow.” ~ Maya Angelou

Just a little quote and note to say that I've not got lost in the Tower, though you'd be forgiven for thinking such. Sorry it's been a little while since I posted an offering for you.

In true princess style, trying to do far too much with too few spoons sent the CRPS/my hands/back/royal person in a spin, so that lead to a little delay.

It's two-years since the CRPS' simultaneous spread from wrists to fingertips, and still profoundly hampered by these embers for hands (they feel as if on fire, constantly severed and crushed, allodynia in full force too).

And as it's both, and as hands are incredibly useful devices, and as I still cannot open them, use or tap keys for more than seconds (humble improvement though that joyfully is), adapting to this while improving this is taking longer than hoped (ever feel like someone keeps moving the goal post?), but will get there.

So perhaps this quote is a reminder for me as much as it is for you, because it can become so easy to slip into darker places, to a state of loss and limitation, wherein every thought is tainted by such.

Because it's never just the illness that you struggle with, but the emotional toll of dealing with it all alongside severe, constant pain that wears you down.

It's hard to keep going when pain weighs heavy on every act, when each attempt at improving, each exercise, practice, therapy or treatment, and of course, pacing, falls short, or worse, causes a flare.

When our body doesn’t serve us, when it doesn’t ‘get better’, we can feel a sense a failure, no matter how unjust.

Be kind to yourself not hard on yourself for even the strongest are weakened by pain, whether it’s hidden or not.

When deep in depression, it's crucial to remember that these thoughts are often the voice of it, that they frequently feed off each other with their own version of events, keeping you under their spell.

If you're reading this while steeped in sadness, do not give up hope. Even the darkest, hardest, most painful and debilitated days pass, not that it ever seems possible in the moment.

In fact, those rare moments of less pain, the 'better' days, do often appear out of nowhere. We're so busy simply trying to survive, but this survival mode can mask that which remains, make us lose hope, lose ourselves a little too.

Even if dark clouds obscure your view and depression has returned or worsened, remember just how much you are surviving, are coping with, and are managing against such difficult odds.

So however bad it seems today, however painful, heartbreaking or sad, and however farfetched a 'better' day may currently seem, here's to life going on, and it being far better tomorrow. <3 Gentle hugs x x x

P.S. New post to follow, I hope you enjoy. <3 ... See MoreSee Less

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The Princess in the Tower

"When you see me out in public, you think this is what I am capable of doing on a daily basis," says Lindsay Karp.

"But you don’t realize that some days I do not have enough strength to be here. You can’t see that my legs are weak and wobbly and that I’m praying through the smile on my face that I can make it.

"You also don’t see the rest of my day. You don’t realize that this is my big activity of the day, and that I must rest afterwards. You don’t see that I couldn’t prepare dinner that evening."

Every pain patient knows how difficult it is to constantly adjust to unpredictable symptoms and fluctuating pain and disability.

Our limitations may allow us to engage in an activity one day that is impossible to contemplate the next, or even again that same day.

You might be able to walk 10 metres but then it may an hour to recover, or 50 but then need a [painful] day in bed.

Healthy people tend to assume it’s all or nothing: we’re either ill or we're well; we’re either in pain or we’re not. If we’re seen doing anything ‘normal’ most assume we must feel good.

“Unless they’ve experienced it themselves, it’s difficult for people to fathom the debilitating effects — physical and mental — of unrelenting pain and illness," says Toni Bernhard.

This is magnified as people only see you at your best, but even an hour would have taken hours, or even days, to prepare for. They also never see the aftermath, the flares, and consequences.

The reality is that we have not only prepared extensively for every act — and have to pace and prioritise each, often leaving much undone — but can flare once it is over, whether for an evening or a week.

“Healthy people may not understand that chronic illness and pain is not linear. This means that the consequences don’t always match the actions. In fact, they usually don’t," says Kristen Spinola.

It's equally complex given the unpredictability of our pain and symptoms, with us just as uncertain on how we feel.

This is perhaps the greatest source of angst when it comes to our loved-ones' understanding.

Everything is undergoing a constant analysis, the preparation and planning for more demanding activities but also for small ones—we need to assess everything in terms of how it affects pain, energy and symptoms.

But even after years if living with chronic pain and illness, it's never certain. "When I’m faced with a beautiful day and I’m contemplating a walk, my head is calculating its very own spreadsheet of costs versus benefits," says Kristen.

"Will enjoying minutes of walking in the sun mean I’m down for the next day? Three days? Five days? A week? How high is my pain now? Will this help or hinder?

"How high is my stress? How is my mood? How is my fatigue? What do I need to do over the next few days? Will I be able to do it? Where am I in medication doses? Will they last the walk? Will I need more after?

"Finally is it all worth it? Now if you look back at all those questions, there isn’t a single one I can answer definitively.

"At best I can guess and more often than not, I’m very, very wrong. “Don’t you want to go for a walk on a nice sunny day?” seems like a very simple question, but to someone suffering from chronic illness and pain, we left simple behind a long time ago."

Many who live with severe and painful conditions can also only manage one ‘big’ activity a day, especially if it involves leaving the house.

If that day has a medical visit, for instance, everything pivots around that single activity and appointment.

The tiny one or two-hour window in which we see others may have taken the entire day to prepare for and more to recover from. Others may be able to do more, some even less.

Certain acts will always mean exceeding limitations, and consequently, cause the pain and symptoms to flare, sometimes for days afterwards.

"The human mind thrashes against this lack of ability to even vaguely predict the outcomes of our actions," says Kristen.

"Given a total lack of knowledge about the consequences, how do you make these decisions? Think on that for a second. This is how someone in chronic pain lives."

Sometimes, despite the most meticulous planning, prioritising and pacing, it doesn’t work out, or our medication fails, the weather turns out wet, damp or humid, or there’s another unexpected — and entirely unavoidable — reason for a flare.

"Many of us spend our lives imbalanced. We have no idea if what we choose to do now will mean that we can’t move tomorrow or that we will just get to enjoy ourselves," says Kristen.

"It’s hard to fight something you can’t see or even predict. It’s even harder when your mind is struggling under all the weight. And nearly impossible when everyone around you assumes your illness can’t possibly be that bad. Well they are right. It’s much worse.”

The Struggle You Don't Realize When You See Me Out and About

The Unpredictability of Daily Life With Chronic Pain <3 Gentle hugs x x x ... See MoreSee Less

The Struggle You Don't Realize When You See Me Out and About

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"You think this is what I am capable of doing on a daily basis."

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