Coping with summertime blues and chronic illnesses

Summer—when the sun shines bright, the days stretch long, and the world seems to burst into an endless celebration of activity. For those of us living with chronic illnesses, however, summer can feel more like a cruel joke under a relentless heat lamp, especially if you identify as a proud “Spoonie.” As the season kicks off, the pressure to embrace every sparkling moment in the great outdoors can make you want to crawl under a pile of blankets, preferably air-conditioned. But fear not—this blog post is here to help you navigate those summertime blues with a dash of humor and a pinch of sarcasm, because who says embracing the chaos of spoonie life can’t also be a riot?

In the spirit of turning those sultry summer woes into waves of laughter, we’ll explore some downright hilarious tips and creative coping strategies designed for spoonies facing the season’s many challenges. Prepare to don your most fashionable sunhat (or perhaps your comfiest pajamas) as we embrace the heat, revel in our unique narratives, and share some crafty ways to keep your spirits high—even when your energy levels are low. With sarcasm as our self-care ally, let’s dive into the lighter side of living with chronic illness and make this summer a little brighter, one sarcastic quip at a time!

Embracing the heat: Finding joy in the chaos of spoonie life

Ah, summertime—the season of sunburns, heatwaves, and chaotic family barbecues that you never quite signed up for. For those of us living the spoonie life, this heat can feel like an unwelcome party crasher. But why not flip the script and find a way to embrace the chaos? Whether it’s feeling the warm sun seep into your bones on a lazy afternoon or indulging in the sheer pleasure of a popsicle that doesn’t judge your choices, summer can still be our playground. Living with a chronic illness might make us more selective about our activities, but it can also encourage us to find joy in the smaller, slower moments—like celebrating how cool it feels to finally enjoy the shade of your favorite tree while sipping an ice-cold drink.

Of course, it’s not all sun-kissed bliss and frolicking in the park. The reality of spoonie life during summertime often includes a meticulous dance with discomfort and fatigue. But what if we considered ourselves the artists, painting our spoonie lives with shades of resilience? The heat can certainly be used to our advantage—call it a “light sauna” experience when you need a quick recharge (while convincing yourself that sweat is just glitter). Let’s embrace the less glamorous parts of summertime, too, like the fabulous combination of sunscreen and sweat that lingers on your skin after a failed attempt at outdoor enjoyment. After all, if we can learn to laugh at ourselves and the absurdity of summer expectations, we might just find a sliver of joy hiding in the shadows.

Sarcasm as self-care: Hilarious tips for navigating summer with chronic illness

Who needs a tropical vacation when you can experience the thrill of summer right at home, complete with air-conditioning and maybe a nice ice pack or two? Let’s face it; summer can feel like a festival of heat waves and unexpected flare-ups for those of us living the spoonie life. But instead of throwing ourselves a pity party (though cake is always a valid option), let's sprinkle some sarcasm on our situations. Embrace the absurdity of lugging around a water bottle that could double as a weapon and mastering the fine art of sunscreen application with one hand while the other clings to your mobility aid. Who said we can’t find humor in this glorious mess? By flipping the script on the struggle, we can laugh in the face of those pesky symptoms that love to crash our summer plans.

Now, onto the glorious art of socializing—or shall we say, the experience of dodging well-meaning friends who think it’s a great idea to plan a beach bonfire at midday. If you ever need a conversation starter, just mention your extreme sensitivity to heat and watch the awkwardness unfold. “Oh, I’d love to join that outdoor barbecue, where’s the nearest shaded area and healing crystal?” Don't worry about following the typical summer playbook; your adaptation skills are top-notch! Channel your inner drama queen and engage in some lighthearted sarcasm about your condition. Trust me, nothing fosters camaraderie quite like sharing stories filled with inflatable pool toys, ill-timed naps, and the enduring quest for the perfect shade tree. Who knew that summer could become an excellent source of laughter and absurdity when you embrace the silliness of spoonie life?

Sunshine and shade: Creative coping strategies for spoonies during summer blues

When the summer sun blares down like it's auditioning for a role in a cheesy action movie, spoonies often find themselves in a precarious situation. The trick lies in embracing the shade—figuratively and literally. First on the agenda, seek out air-conditioned havens wherever possible. Whether it's your favorite coffee shop or a local library that smells faintly of old books and better times, find solace from the sweltering heat. Bonus points if you can locate a café serving iced beverages stronger than your will to leave the house. Bring a book, don your best airport sunglasses, and let that cool air wrap around you like a warm, fuzzy blanket—just don’t forget to set a timer to avoid overdoing it!

Now, let’s talk about creativity. Who says you can’t have a summer of fun while managing chronic illness? Organize a series of indoor picnics, complete with artisanal snacks and cozy corners in your living room. Get your friends to join in from afar by having a virtual picnic party—even if they show up in their pajamas, at least you’ll know they’re comfortable. And why limit yourself to traditional summer activities? Host a movie marathon where you critique summer blockbusters with a sarcastic flair. Because if you can't battle the heat, you might as well roast the characters who are having too much fun in it! Embrace creativity and shade, and you'll find that the summer blues might just retreat into the background, leaving you with laughter as your ultimate sunscreen.

Why after 2000 years we still don't know how tickling works

How come you can't tickle yourself? And why can some people handle tickling perfectly fine while others scream their heads off? Neuroscientist Konstantina Kilteni from the Donders Institute argues in a scientific article published on 23 May that we should take tickle research more seriously. She researches these questions in her tickle lab at Radboud University.

Socrates wondered 2,000 years ago, and Charles Darwin also racked his brains: what is a tickle, and why are we so sensitive to tickling? 'Tickling is relatively under-researched,' says neuroscientist Konstantina Kilteni. She argues that tickling is a very interesting subject for research. 'It is a complex interplay of motor, social, neurological, developmental and evolutionary aspects. If we know how tickling works at the brain level, it could provide a lot of insight into other topics in neuroscience. Tickling can strengthen the bond between parents and children, for instance, and we usually tickle our babies and children. But how does the brain process ticklish stimuli and what is the relationship with the development of the nervous system? By investigating this, you can learn more about brain development in children.'

Research also shows that people with autism spectrum disorder, for example, perceive touches as more ticklish than people without autism spectrum disorder. Investigating this difference could provide insight into differences in the brains of people with autism spectrum disorder and people without and could help with getting knowledge about autism.

'But we also know that apes such as bonobos and gorillas respond to ticklish touches, and even rats have been observed being so. From an evolutionary perspective, what is the purpose of tickling? What do we get out of it?'

The fact that you cannot tickle yourself is also interesting from a scientific point of view: 'Apparently, our brain distinguishes ourselves from others, and because we know when and where we are going to tickle ourselves, the brain can switch off the tickling reflex in advance. But we don't know what exactly happens in our brain when we are tickled.'

Tickling or tickling

Kilteni argues that these questions have not yet been answered because it has not been clearly defined what tickling actually is within the scientific community -- there is a difference between when you tickle someone hard someone on the armpits, for instance, with your hands and tickling someone's back lightly with a feather. The first sensation is understudied while we know much more for the second feather-like stimulation. It is also difficult to compare between existing studies: when someone is tickled by another person, it is difficult to replicate that form of tickling exactly with another test subject.

Tickling lab

Kilteni has a tickling lab for this very purpose: it contains a chair with a plate with two holes in it. You put your feet through the holes and then a mechanical stick tickles your footsoles. That way, every tickle experiment is the same. The neuroscientist records exactly what happens in your brain and also immediately checks all other physical reactions, such as heart rate, sweating, breathing, or laughter and screaming reactions. 'By incorporating this method of tickling into a proper experiment, we can take tickling research seriously. Not only will we be able to truly understand tickling, but also our brains.'

Story Source:

Materials provided by Radboud University Nijmegen. Note: Content may be edited for style and length.

Journal Reference:

Konstantina Kilteni. The extraordinary enigma of ordinary tickle behavior: Why gargalesis still puzzles neuroscience. Science Advances, 2025; 11 (21) DOI: 10.1126/sciadv.adt0350

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Radboud University Nijmegen. "Why after 2000 years we still don't know how tickling works." ScienceDaily. ScienceDaily, 27 May 2025. .

Welcome June 2025

Happy Tuesday My fellow Spoonies!

I’m hoping everyone enjoyed their weekends. Let’s jump right into it! As summer vacation is starting for a lot of you, please be mindful of the rising temps and flare-up triggers.

The following are just a few tips on how to hopefully, avoid a flare-up while enjoying time with family and friends:

Stay Dehydrated: You already know that, in the summer, it’s even more crucial to drink your eight glasses of water a day. You lose more water from your body through perspiration in warm weather. It’s important to replace that water so you don’t become dehydrated. Dehydration can lead to headaches, muscle cramps, fatigue and heat exhaustion – which can all exacerbate fibromyalgia symptoms.

Don’t Forget Electrolytes: an often forgotten aspect of dehydration is replacing electrolytes lost by sweating. Electrolytes are substances that carry an electric charge and are responsible for nerve and muscle function, and regulating blood pressure, blood pH and other vital bodily functions. Electrolytes include sodium, potassium, calcium and magnesium. You might think of sports drinks like Gatorade as the best source of electrolyte replacement, but these drinks cause their own problems. The added sugar will only cause energy crashes after the initial sugar high, as well as long term harm to your liver, pancreas, and teeth.

Try to carry a water bottle with you so that you can stay hydrated throughout the day. If you don’t like plain water, or haven’t infused it with fruit, try adding  lemon or cucumber to plain iced water, or making iced tea (think herbal or de-caffeinated if making a large pitcher).  Avoid more than 1 to 2 cups of coffee, because caffeine is diuretic, which can worsen dehydration. Ditto with alcohol.  If you have trouble remembering to drink water, try to tie this new habit to something you routinely do, such as having a glass of water before each meal, as well as when you wake up and go to bed.

Stay Cool on the Go: try a cooling fitness towel when you are out and about. When wet, these towels are designed to feel cooler than the air temperature, and  provide relief from the heat (but don’t drip). They can also wick away moisture from perspiration. Run the towel under cool water, put it around your neck, and feel cool for 2-3 hours.

One of my favorite gadgets is a fan that can plug into your smart phone! This helpful little fan plugs into your phone (where the charger goes) or power bank and provides instant relief for your face and neck in the heat. They typically weigh less than an ounce! This is such a life saver in a hot waiting room, vehicle or sidewalk. You can also buy chargeable electric handheld fans to take on the go.

Keep Cool at Home: it’s important to try to maintain a constant, cool temperature during a heat wave. You already know that air conditioning and fans can help to maintain a cooler indoor temperature.  Put a damp cloth in the freezer for several hours and then wipe your face, neck arms and legs with it to cool off.  Applying an ice pack to the back of your neck or the inside of your wrists can also help. If humidity worsens your pain, consider running a dehumidifier in your home. The temperature can be less of a factor causing your pain than dampness in the air, especially if your have joint pain. Blackout blinds/curtains are vital for keeping your bedroom cool for resting on hot summer days.

Sun Protection: this is key to avoid flare-ups that could be caused by sunburn or heat exhaustion. Try to stay out of direct sunlight, use sunscreen, and wear a hat; basically everything your mother told you to do in the summer. Sun protection clothing that blocks harmful UV rays can really help to lower the risk of sun burn and heat stroke. UV protection sunglasses can also help reduce the impact of brightness on your eyes, which is a migraine trigger for some.

Replace Heat Therapy with Cold Therapy: if you routinely use a heating pad for your pain, try replacing it with an ice pack, especially during a heat wave!

Pacing is particularly key during the increased activity levels we often associate with summer months. With the additional physical stress from heat,  it’s especially important to stick to your boundaries, no matter what expectations friends or family members may place on you.

Log Your Symptoms: if you are unsure what effect the weather has on your pain levels, try keeping a daily log of the temperature and weather conditions, along with your pain levels. This might help you to identify pain triggers. You can also note any strategies you have tried to reduce your pain levels, and what impact they may have had. Overtime this will help you to identify more effective solutions for coping with pain in the summer months.

I will attach a link to download a journal to help you keep track of your daily spoons and to-do lists, water intake, energy and mood levels, appointment logs and journaling pages. Living with a chronic illness often means navigating in a world of tracking symptoms, medications, appointments and fluctuating energy levels. It’s not just about managing your health; it’s about managing your life around your health. That’s where the Spoonie Planner comes in - a thoughtfully designed tool specifically for those living with chronic conditions and it’s free to download and print!

That's where the Spoonie Planner comes in – a thoughtfully designed tool specifically for those living with chronic conditions. And the best part? It's entirely free and printable!

Click to Download “Spoonie Wellness Planner & Journal”

Remember to log your symptoms and water intake. If you feel tired, it’s ok to stop and take a break.

So, my Spoonies, until next time, we may be low on spoons, but we are high on standards.

-Jessica

Warriors Among Us: Married to the Enemy

In 2013 my husband who was a police officer stole my children and moved them to the border of a foreign country. We fought for ten years in open court about the children but he always won. I had a severe nervous breakdown and tried to commit suicide. They say that grief is like having a scream deep down inside of you and no one else hears  it. It is very much like that only I felt like I was on fire as well and not dying but experiencing all of it 24 hours a day. It took a very long time to be able to say I had made it through the hardest thing in my life. It's hard when your reasons for life are not present but u have to keep going. I've missed out on so many hugs and so much love the giving and receiving over the years. A few years later I got into a relationship that I thought was going to be ok, but as it turned out it was significantly abusive physically and mentally. I fought back and stood trial after being arrested for defending myself. I narrowly escaped death by the end of that relationship with the help of a neighboring county and their crisis and domestic violence employees. I lived in a shelter for a year getting tossed around between different roommates and mental illnesses. Finally I got an apartment and was independent again. All that only to meet a man, that held me hostage for three days and choked me twice almost to passing out. It all happened in my new apartment and the police have since been u able to find that man and he is on Texas most wanted fugitives list still today. I have a lot of simple trauma and a lot of complex trauma. I have a lot of post traumatic stress. I hear voices from the mental breakdown that get worse with stress. I get scared being alone and I lose a lot of sleep at night. I don't trust people and I no longer trust myself to judge people's characters. My children are older and did not want to move back from the border and now instead of them being little and in an after school program in a border town, they are running the roads,wanting to go to nightclubs in a border town. The more trauma you go through the more u feel like you shattered a long time ago and you are just carrying the tiny pieces of yourself around in a little basket. I struggle with getting out of bed, with washi ng my hair , and with a sense of purpose. Friends don't know how much it means to have a ten minute conversation with them on the phone just to have a little laugh and lighten the mood of your life. I live in fight or flight and it's exhausting. Sometimes I use my spoons and can't even get the energy to wash them and start again the next day. I'm dreadful to have a place where people can relate to things I go through. 

"Warriors Among Us: Stories of Strength and Resilience in Living with Chronic Illness"

I’m starting a new series that focuses on an actual person living with a chronic illness. I’ll have someone submit their story and have it published here on the website. I’ll be looking forward to hearing from all of the “Warriors Among Us”.

LST Updates

Hey Spoonies! Hope everyone is good and taking care of yourselves! Got a few things to share with you:

Misty Phillips Tyler won the 200 member t-shirt giveaway!

GofundMe is up and running @ https://gofund.me/c94a571e

Almost a week away from The Great Spoonie Giveback giveaway so engage, engage, engage! Winner will be announced here.

Once we reach 300 members, I'll do another giveaway! Invite, invite, invite!

Website is getting lots of traffic! Thank you! Any suggestions, questions or comments, please fill out a contact form, we'd love to hear from you!

Welcome!

Hey Spoonies!

I wanted to personally welcome and thank each visitor, customer, donor and/or contributer for supporting an idea I had one night! The idea mainly was just an outlet for me but it has turned into all of you and it's continuing to grow!

Limited Spoons will hopefully become LST’s newsletter in the future, 🤞🏼sooner than later!

And again, from the absolute bottom of my medicine bottle, thank you!

Memorial Day

As Memorial Day approaches, let's remember what it stands for, the MEMORY of those who made the ultimate sacrifice, their lives while serving our armed forces. The thousands of men and women who volunteered to protect us. Thank you to the families and to the brave soldiers who have gone before us.