Showing posts with label A day in the life. Show all posts
Showing posts with label A day in the life. Show all posts

Sunday

Living with Rheumatoid Arthritis: A Personal Journey

The morning begins with a familiar ache, a deep, gnawing stiffness that settles into my hands and knees like an uninvited guest. Rheumatoid arthritis (RA) doesn’t just wake up with me; it dictates the rhythm of my day. Diagnosed ten years ago at 35, I’ve learned to navigate a life shaped by this chronic autoimmune disease, one that attacks my joints and, at times, my spirit. This is not just arthritis, as some might assume—it’s a systemic condition that reshapes every facet of existence, from the mundane to the profound.

Living with Rheumatoid Arthritis

The physical toll is relentless. Mornings are the hardest, with stiffness that can last an hour or more, making simple tasks like buttoning a shirt or holding a coffee mug feel like Herculean feats. My fingers, once nimble enough to type furiously or sketch intricate designs, now swell and protest, sometimes curling into shapes I barely recognize. Flares—those unpredictable surges of pain and inflammation—can derail plans without warning. A good day might mean a walk in the park or cooking dinner; a bad day means choosing between showering and eating because my energy is too depleted for both. Fatigue, a constant companion, isn’t just tiredness—it’s a bone-deep exhaustion that no amount of sleep can cure.

RA doesn’t stop at the joints. It’s systemic, insidious. I’ve learned to watch for signs of its reach beyond my knuckles and wrists: the dry eyes from Sjögren’s syndrome, a sidekick to RA, or the subtle chest tightness that reminds me of the heightened heart disease risk I carry—50% higher than those without RA, as I’ve read in patient blogs and medical sites. These realities force me to live with a heightened awareness of my body, always scanning for new symptoms, always weighing the cost of pushing through pain.

Emotionally, RA is a thief. It steals spontaneity, replacing it with calculated decisions about energy and mobility. I’ve canceled plans with friends, not because I don’t want to see them, but because a flare left me too drained to leave the house. The guilt of those cancellations piles up, and the isolation creeps in. I’ve seen it echoed in online communities like RA Chicks or posts on X, where patients like @Darcy2988 vent about the misconception that RA is just “stiff joints.” It’s not. It’s a degenerative disease that chips away at your sense of self. There are days I mourn the person I was before RA—someone who hiked trails, worked long hours, and never thought twice about opening a jar. Depression and anxiety, common among RA patients, have knocked on my door more than once.

Yet, there’s resilience in this struggle. I’ve found solace in digital tools like MyVectra, an app that lets me track my symptoms and flares, helping me spot patterns and communicate better with my rheumatologist. It’s empowering to see my pain quantified, to have data to back up my experience when I sit across from a doctor. Online communities have been a lifeline—through RheumatoidArthritis.net and X threads like those from @OGreat6, I’ve connected with others who understand the frustration of a bad day or the triumph of a good one. These spaces remind me I’m not alone, even when RA makes me feel like I am.

Treatment has been a journey of trial and error. Methotrexate, a cornerstone RA drug, tames the inflammation but brings nausea that lingers like a bad hangover. Biologics have helped, but the fear of side effects— infections, or worse—looms large. Physical therapy keeps my joints moving, and I’ve learned to love low-impact yoga, though I’ll never be the person doing headstands. These interventions don’t cure RA, but they’ve pushed me toward periods of low disease activity, moments where I feel almost normal. I cling to those moments, knowing a flare could be around the corner.

Socially, RA has reshaped my relationships. My partner has become part caregiver, part cheerleader, patiently helping with tasks I can’t manage. Friends have learned to adapt, meeting me for coffee instead of late-night outings. But there’s a sting in their well-meaning comments—“You don’t look sick”—that underscores how invisible this disease can be. Work is another battleground. I’ve scaled back hours, relying on accommodations to keep my job as a graphic designer. 


Despite the challenges, I’ve found unexpected gifts in this journey. RA has taught me patience, forcing me to listen to my body and respect its limits. It’s deepened my empathy for others with chronic illnesses, and I’ve become an advocate, sharing my story in support groups and online, hoping to educate others about RA’s reality. Like Lene Andersen, an RA advocate I admire, I believe in the power of patient-doctor partnerships and the strength of community.

Living with RA is a balancing act—between hope and pain, limitation and defiance. Some days, I’m angry at my body’s betrayal; others, I’m proud of its resilience. I think of patients like Linda Martin, who’s lived with RA since childhood, or the rare stories like @SakalliNuretdin’s on X, where remission came unexpectedly after years of struggle. Those stories fuel my hope, even if my path is different. RA has taken much, but it’s given me a new lens on life—one of gratitude for small victories, connection through shared struggle, and a stubborn refusal to let this disease define me.

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Living with Rheumatoid Arthritis


Actress Tatum O'Neal Opens Up About Living With Rheumatoid Arthritis

Actress Tatum O'Neal Opens Up About Living With Rheumatoid Arthritis

Actress Tatum O’Neal opened up about her struggle with rheumatoid arthritis - and the toll its taken on her body - i
n an Instagram post. O'Neal, 56, shared a photo of her back, covered with surgery scars and bruises, to demonstrate what it's like to live with rheumatoid arthritis (RA).

Watch Have you heard about Rheumatoid Arthritis? 

Tatum is no stranger to adversity. A child of Hollywood, she has had “such a difficult life in some respects, although such a great life in others,” she says. After receiving an Oscar for the role of Addie, which she played alongside her father, actor Ryan O’Neal, she went on to star in Bad News BearsLittle Darlings and International Velvet. A young fan, like I was then, would have assumed she lived a happy, glamorous life. But in her 2004 book, A Paper Life, Tatum revealed a childhood of neglect and emotional and physical abuse and a family immersed in drugs and plagued with addiction. She, too, has struggled with addiction.

She described how her RA seemed to come on slowly and then all at once. She was already in what she describes as a “low state,” dealing with pain from several neck and back disc surgeries in recent years and unhappy knees – one kept ballooning, refusing to heal after meniscal repair surgery. But this was different. “The pain changed in nature and location. It was scary,” she says. She had difficulty walking, and thought, “Wow, something is so bad.”

Then one night it hit her hard. Her right hand swelled and ached “unbelievably.” A rheumatologist diagnosed RA, and an MRI revealed damage in her ankles. “That was a sad day,” she says.

Tatum began taking a biologic drug, giving herself shots in her stomach once a week, and methotrexate. Not long after, she was hospitalized with pneumonia three times in four months. Doctors were puzzled. Finally, a pulmonologist realized her lungs were reacting badly to methotrexate. “It’s been a tough road,” says Tatum, “very, very scary for my children and for all of us.”

READ THE FULL ARTICLE AT Arthritis Foundation

Tatum O'Neal Living With Rheumatoid Arthritis


3 Millennials On Growing Up With Rheumatoid Arthritis

Rheumatoid Arthritis: 3 Millennials On Growing Up With Chronic Pain

"Be mindful of judging people when you can’t see anything going on."
By Natasha Hinde HUFFPOST
rheumatoid arthritis pain in millenials

During his worst flare-ups, Daniel Morley lies in bed wondering if he should just go thirsty. He desperately wants a glass of water, but his body is in so much pain, he can’t bear to move the five metres to the sink. His joints are on fire.

Rheumatoid arthritis (RA), which Morley was diagnosed with at the age of 19, is a long-term condition that causes swelling and stiffness in the joints – usually the hands, feet and wrists. The immune system mistakenly attacks cells lining the joints, causing intense pain that makes it hard for some sufferers to leave the house.


He first noticed something was wrong as a teenager when his knees swelled up and his ankles started causing him pain. During this time he took almost nine months off work. Morley was eventually referred to a specialist consultant, who drained fluid from his joints and gave him steroid injections.


Debbie Griffin, 32, from north Wales, was diagnosed at just two years old. She recalls realising something wasn’t quite right when she was five. “I was making friends in school and noticed I couldn’t do the things everyone else could do, like sports day,” she says.


Griffin experienced problems with her hips and knees during her early teens, to the point where she struggled to move even a few feet without being in pain. At 13 she had to have a knee replacement, followed by a hip replacement at 17.

“It impacts my life daily,” says the 32-year-old. Some days, she will wake up without any issues; other days she will be in so much pain she can’t leave the house. “Making sure I’m fit for work every day is a struggle,” says the service manager, who works for a national charity.

Louisa Flannery, from Leeds, was diagnosed with RA in the run-up to her GCSEs. Initially, she experienced a pain in her feet, and was told to wear insoles, but when it began to continue up her body to her knees, she was referred to a specialist. She was diagnosed at 15, after a year and a half.

As a teenager, Flannery found it hard being heard by the adults around her. She recalls having to miss PE lessons because of the pain. “I didn’t know what was wrong with me, so it was difficult to communicate with the teachers – I think they thought I was just using it as an excuse,” she says. “The invisible part of it is quite difficult. People forget because they can’t see anything’s wrong with you.”

Now studying for a Masters degree, Flannery, 25, struggles with constant pain in her ankles and shoulders, as well as her back and knees from time to time. “My hands are swollen and a bit disfigured,” she says, noting that it’s quite hard to write. ”I usually do computer work which is fine.”


READ FULL ARTICLE AT HUFFPOST

Wednesday

Pacing and chronic pain

Pacing is learning to find the right balance between spending time on an activity without pushing yourself so that it significantly worsens your pain. 

Pacing is the opposite to just pushing through and finishing an activity and then being in so much pain the next day that you cannot cope with anything at all. 

It is about breaking activities up into small increments. 

It is about definitely stopping when you start to feel pain or increased pain, depending on your situation. 

Pacing can help prevent flare ups and keep you mobile. 

Some people who are trying to pace themselves find it useful to set a time limit and also a rest time or a change of activity.

Pacing Guide for Chronic Pain & Arthritis

What Is Pacing?

Pacing means balancing activity and rest to avoid flare-ups and fatigue. It’s about doing what you can—without overdoing it.

🕒 Daily Rhythm: The Pacing Cycle

Time of DaySuggested ActivityPacing Tip

Morning

Light tasks (e.g., breakfast, gentle stretches)Start slow. Warm up joints gradually.
Midday

Moderate activity (e.g., errands, chores)Break tasks into chunks. Rest between.
Afternoon

Rest or switch to low-energy tasksLie down flat for 10–15 minutes.
EveningWind down (e.g., reading, TV)Avoid pushing through pain.

 

The Pacing Loop

  1. Start an activity

  2. Notice pain or fatigue

  3. Pause or switch tasks

  4. Rest (short and frequent)

  5. Resume if able—or leave it for later

 “Rest before you need it, not after you crash.”

Pacing Strategies

  • ✅ Use timers: Work for 20 minutes, rest for 10

  • ✅ Alternate physical and mental tasks

  • ✅ Sit or lie down between chores

  • ✅ Break big tasks into mini-steps

  • ✅ Celebrate what you did, not what’s left

Real-Life Examples

  • 🧺 Laundry: Fold 5 items, rest, repeat later

  • 🍽️ Cooking: Prep veggies seated, cook in stages

  • 🧼 Cleaning: One room per day, not the whole house

  • 💻 Typing: Use voice-to-text or take wrist breaks


Here is a site that has helpful worksheets that can help you with pacing: PSYCHOLOGY TODAY

Pacing: Balancing activity and rest PDF Download from Medschoolforyou.com
Pacing instructions with worked examples PDF Download from Cambridge Univeristy Hospital
Pain management diary PDF Download from livingcbt.com
The Pain Toolkit -  for people who live with persistent pain PDF Download from paintoolkit.org


Thursday

Everyday coping with arthritis and chronic pain:pacing

rheumatoid arthritis coping ideas

Rheumatoid arthritis coping ideas

This illness isn’t something I manage easily. There’s no magic pill, no one-size-fits-all cure. But there are ways to live alongside it—and even reclaim some of the joy, energy, and laughter that pain tries to steal. I can’t tell you what will work for you. I can only share what’s helped me. I still have bad days. But now, more often than not, the good days outnumber them.

Over the years, I’ve absorbed advice from books, blogs, doctors, and fellow spoonies. But knowing something and living it are two very different things. The most helpful strategy I’ve learned—besides pain relief—is pacing.

So what is pacing? For me, it means listening to my body and respecting its limits. It’s not about doing nothing. It’s about doing things differently. I try not to push through pain anymore. If I feel a flare coming on or my joints start to ache, I stop. I switch to a gentler task or take a break altogether. That might mean the dishwasher is half-unpacked or the laundry is still in the basket. That’s okay. I’ll get back to it later.

Pacing also means building in rest before I need it. I take short, regular breaks—often lying flat on my back—to reset. It’s not laziness. It’s strategy. It’s how I keep going without crashing.

Pacing Tips for Beginners

Starting to pace can feel strange at first—especially if you're used to pushing through pain or trying to “keep up.” These tips are for anyone just beginning to explore pacing as a way to manage chronic pain or arthritis:

Simple Ways to Start

  • Track your energy: Notice when you feel most tired or sore. Use that info to plan breaks.

  • Set a timer: Try 15–20 minutes of activity, then rest for 5–10 minutes—even if you feel okay.

  • Use a notebook or app: Jot down what you did and how you felt. Patterns will emerge.

  • Rest before pain hits: Don’t wait until you’re exhausted. Resting early helps prevent flares.

  • Switch it up: Alternate between physical and mental tasks to avoid overloading one system.

  • Say “later” without guilt: It’s okay to leave things unfinished. Your health comes first.

Mindset Shifts

  • You’re not lazy—you’re strategic.

  • Resting is productive.

  • Small steps add up.

  • Listening to your body is a skill, not a weakness.

And yes, even writing this post is a reminder. My wrists are starting to ache now, so I’ll pause here. Maybe I’ll finish this later… or maybe I’ll just rest and call that enough for today.

Saturday

The pain just gets to you after a while.

Most days I try to be cheery and perservere through the pain but some days I just can't. I give up and feel bad and take to my bed and leave the world behind. I use to feel guilty about doing this but really no one wants a grumpy person around.

When I was younger and people said they had arthritis I thought "oh yeah, old people get it, it causes a bit of pain in their joints" but you don't really understand until you get it. So painful, it eats away at you. I take plenty of painkillers but am never without pain.

Monday

Food preparation and healthy eating with RA

You wake up one day and realise that how you are eating is being controlled by Rheumatoid Arthritis. 

This is not acceptable but what can you do? 

I can no longer grate vegetables or chop vegetables for very long, due to pain, so the way we eat has changed over time to a less healthy diet. It is easy to pop on a piece of toast or heat up a frozen pie but these are not healthy options especially for someone with a chronic pain disease. 

The hand and wrist have multiple small joints that work together to produce motion, including the fine motion needed to thread a needle or tie a shoelace. When the joints are affected by arthritis, activities of daily living can be difficult. Arthritis can occur in many areas of the hand and wrist and can have more than one cause. - OrthoInfo

I need to consider some healthy and easy to prepare options. This is why I eat lots of yoghurt and fruit and just grab a carrot.
This needs more thought. I am reviewing some dietary options at help immune and I will get back to you on this one. In the meantime, do you have any suggestions for easy to prepare healthy food as I have 3 growing teenagers at home?