Rolling with the Punches: PJ from Pajama Daze on Living with Multiple Chronic Conditions

What’s it really like to live with chronic illness every day? How do you deal with the physical symptoms, emotional turmoil and practical problems? In this interview series, real life ‘spoonies’ share their stories and tips.

Rolling with the Punches: PJ from PajamaDaze on Living with Multiple Chronic Conditions | The Health Sessions

PJ runs the motivational and inspirational website Pajama Daze for people with chronic illness, pain and fatigue. She’s currently writing her first book. 

 

Tell us a little about yourself.

I’m 61 years old, retired on disability. I earned a BS Ed and an MA in Communication, am a Certified (PA) Holistic Health Educator, and was a Fellow of the PA Rural Leadership Program. In my previous life I worked in radio and television in both advertising and documentary production. I’ve worked in a couple of independent films, as well having published various pieces of freelance writing and photography. I also worked in community health education for several years.

I am currently writing my first book based on my website Pajama Daze for people with chronic illness. I’m also doing what I can to save pollinators through local projects and my website Posies for Pollinators.

I’ve had asthma all my life, arthritis and minor subluxations at various sites for much of my life, uterine cancer in 2002, three mild heart attacks in 2005, and another in 2008, caused by vascular spasms. It was discovered in 2010 that I have an uncommon disease called Fibromuscular Dysplasia (FMD), which causes abnormal cell growth in my carotid, vertebral and renal arteries, as well as other problems with connective tissue. I suffered with Chronic Fatigue Syndrome for 10 years after my heart attacks, but went into remission last summer, thankfully.

 

When did you first get sick?

I first became noticeably symptomatic with FMD in my mid-30’s, though it would be more than 20 years before I was diagnosed. I suffered from severe, debilitating migraines and dizzy spells which, thankfully, have become less prolonged and severe, but still crop up from time to time.

Read more >Rolling with the Punches: PJ from Pajama Daze on Living with Multiple Chronic Conditions



Is Your Health Really in Your Own Hands?

Is Your Health Really In Your Own Hands? | The Health Sessions

 

“Your health is in your hands.” 

It’s supposed to be an empowering phrase, meant to encourage you to take good care of your body and mind. And yet, there’s a kind of accusation hidden in there that so many chronically ill people face: have you done enough to stop this from happening to you?

Over the last decade or two, the way our society thinks about health and happiness has changed a lot. Thanks to a growing body of research on how our lifestyle affects our health – in good and in bad ways – and the widespread availability of information via the Internet, our mindset has gone from trying to control (chronic) disease with medication to actively preventing illness through healthy nutrition, exercise, stress management and positive thinking.

And that’s a good thing: with all the present-day knowledge, why wouldn’t we avoid serious risk factors and learn about how we can feel as fit, strong and upbeat as possible?

Read more >Is Your Health Really in Your Own Hands?



In Sickness and In Health: How to Keep Love Alive When You’re Chronically Ill

Love

“If I lay here, if I just lay here,

would you lie with me and just forget the world?”

— Chasing Cars, Snow Patrol

 

Love can be complicated under the easiest circumstances — let alone when chronic illness comes into play. 

When “in sickness and in health” becomes your daily reality instead of a promise you once made, it can put a serious strain on your relationship. And if you’re single, dating and finding a loving partner might feel totally undoable if you’re dealing with debilitating symptoms, unpredictable flare-ups and an uncertain future.

This article from The Atlantic eloquently describes the kind of dilemmas and obstacles chronically ill people face in their love life. Because, how do you even meet a potential partner when you’re housebound and struggling to do the simplest things? When do you tell your date about your health issues, fearing you might scare them off? How do you adjust to a new way of life when you or your spouse become severely ill with little chance of a full recovery?

Love in times of chronic illness requires open communication, understanding and a willingness to make it work from both parties. And even then it can be challenging. But with the right partner, love can also carry you through the toughest times.

So how can you keep love alive in the midst of hospital visits, a rollercoaster of emotions and all kinds of practical problems? I don’t have all the answers, but this is what I know:

Read more >In Sickness and In Health: How to Keep Love Alive When You’re Chronically Ill



How to Cope with a Neurological Condition: Rhiann Johns on Pain, Pacing and Positivity

What’s it really like to live with chronic illness every day? How do you deal with the physical symptoms, emotional turmoil and practical problems? In this interview series, real life ‘spoonies’ share their stories and tips.

Coping with a Neurological Condition: Rhiann Johns on Pain, Pacing and Positivity | The Health Sessions

 

Rhiann Johns is a chronic illness blogger from South Wales. On My Brain Lesion and Me, she writes how she copes with her neurological condition.

 

Tell us a little about yourself.

My name is Rhiann and I am nearly 30 from a small town called Pontypridd in South Wales. I was diagnosed with a neurological condition, known as a long-standing brain stem lesion which causes dizziness, vertigo and a symptom known as spastic paraparesis which causes severe stiffness and weakness in the legs. I have a 2:1 degree in Psychology and currently live with my parents and dog called Honey. I write on my personal blog called ‘My Brain Lesion and Me’.

 

When did you first get sick?

This is a really interesting question and one which we cannot answer! Funnily enough, when I was first born the doctors thought that there was something wrong with me, and I had a brain scan at 2 days old. Looking back there were little signs throughout my childhood that there wasn’t something quite right, but they were easy to brush off as part of growing up. Throughout my late childhood and teenage years, the dizziness was a big part of my life, which only deteriorated as I became older, along with all my other symptoms and especially the problems with my mobility.

Read more >How to Cope with a Neurological Condition: Rhiann Johns on Pain, Pacing and Positivity



Living with Lyme and POTS: Sophia Galpin on Limitations and Listening to Your Body

What’s it really like to live with chronic illness every day? How do you deal with the physical symptoms, emotional turmoil and practical problems?  In this interview series, real life ‘spoonies’ share their stories and tips. 

Interview with Sophia Galpin: How to Cope with Chronic Lyme Disease and POTS | The Health Sessions

 

Sophia Galpin is a food, health and lifestyle blogger battling with chronic Lyme disease and Postural Orthostatic Tachycardia Syndrome (POTS). On her blog Spoonie Sophia, she shares her thoughts on coping with chronic illness as well as her passion for creating delicious healthy recipes.

 

Tell us a little about yourself. 

I’m Sophia, I am 26 and suffer from chronic Lyme disease and Postural Orthostatic Tachycardia Syndrome (POTS). Despite my illness I am a keen baker and a health/food blogger. I live in beautiful Cornwall with my boyfriend and little dachshund pup, Copper. I enjoy nothing more than little trips to the beach; feeling the sea air on my face whilst sipping a hot chocolate!

 

When did you first get sick?

I have suffered from chronic neuropathic pain from the waist down since 2008 (when I was 18). I January 2013 I started getting new symptoms including migraines, muscle pain, weakness, crippling fatigue, joint pain, insomnia, heart problems (tachycardia), and became very sick.

Read more >Living with Lyme and POTS: Sophia Galpin on Limitations and Listening to Your Body