I always had my heart set on having four children. When I was told I would never be able to have children because of recurring cysts, endometriosis, and other issues with my reproductive organs, I was crushed. However, a part of me hoped that if having babies was really in my destiny, then it would happen all in good time. Fast forward decades later, and now I’m the little old lady in a shoe as my friend likes to call me. What I didn’t see in the cards was a chronic illness diagnosis, and how I would learn to shift from parenting to chronic illness parenting.
What kind of parenting is chronic illness parenting?
Living with a chronic illness has challenges. Being a parent has its own set of challenges. Being a chronic illness parent combines the two sets of challenges to give you an entirely new parenting style. It breaks the mold of all those other parenting styles. In fact, it should be listed as a style of parenting in addition to the ‘attachment’, ‘helicopter’, ‘free range’, and other styles listed here.
Chronic illness parenting does not fit into one category of parenting, but rather encompasses the ones listed above and then some. The ‘then some’ includes:
- Plan Bs (and Cs and Ds and Es…),
- creativity (how to keep the kids quiet and entertained simultaneously when a flare strikes),
- quick thinking (know where the closest exits are located for when stomach issue/anxiety/sensory overload/tantrum occurs without warning),
- and last – but definitely not least – a dark, quiet closet to cry in when it just gets too much. (This is your cue to pass the Kit Kat, please – oh, and make it the dark chocolate Kit Kat because dark chocolate is healthier).
Where are other chronic illness parent bloggers?
When I was diagnosed with fibromyalgia, anxiety, and depression in late 2012, my kids were 6, 5, 3, and 11 months. Yeah – WHOA! I was also finishing up my bachelor’s degree online, homeschooling my two oldest kids, and living at the top of Apple Mountain during the winter. Needless to say – it was difficult.
I scoured the website looking for blogs written by other parents living with fibromyalgia. None were found. It was baffling. I knew there were parents living with fibromyalgia, so why couldn’t I find them?? I was desperate to know how these parents were juggling their family life and a fibromyalgia diagnosis. It was feeling as though my world was in a chaotic rubble of mess at my feet and I couldn’t find help. Without realizing it, I was becoming resentful of my life and my illness. I knew this couldn’t continue.
This is where Being Fibro Mom enters the picture, although it wasn’t Being Fibro Mom at first. Originally it was Being the Imperfect Mom. Then I switched to Fibro when I realized that is what I was doing – being a fibromyalgia mom. In my determination to share my experiences of living with fibromyalgia as a mom, I stumbled into a blessing of sorts. I later coined the term ‘fibro parenting’ and have been focused on helping parents just like me ever since.
With each new fibro parent I meet, I see me in some way. No, not the former me, the present me. Because, in essence, they are one and the same. It’s the one learning to thrive, trying to make it through each and every day as strong as I can. The mom/dad trying to do the best for her/his kids while managing symptoms that wax and wane each hour of the day. The me wanting to find other chronic illness parents that understand just how difficult this chronic illness parenting really is. All the other ‘mes’ not passing judgment, not looking for excuses, not looking for pity. The other ‘mes’ looking for support, openness, acceptance. The me that will pass the dark chocolate Kit Kat in the quiet of my closet while I cry it out.
Chronic Illness Parenting Websites
My point of this post – there is a point I assure you – is to give you a list of other chronic illness parent bloggers. I will add to the list as more are discovered, but here’s what I have so far. To give a little insight to each website, I’ve copied the website’s “About” page.
40 & Over: Living with Fibromyalgia
Writer/journalist. Partner. Head over heels Mommy to Junebug, 4 & Rosebud, 6. Feminist. Empath. Fibro advocate. Charleston born, New Orleanian by choice, New Yorker at heart. Self-taught gourmet cook. Former yogini, future water aerobics pro. I pine for my Mom every day. Life is too serious not to have fun. Feline fanatic. Fiction fiend. Khaleesi of pop culture. Budding gardener. Punny. True Cancer Crab. Fibrowarrior since Winter 2018. So much more than a paragraph can sum up: aren’t we all? I turned 40 in 2018 and my life as I know it is over. Or, I’m literally 40+. My viewpoint depends on the day. Welcome to 40 & Over.
Some of 40 & Over’s imagery and general mood comes from these lyrics: “I’ve got my ticket for the long way ‘round/The one with the prettiest of views/It’s got mountains, it’s got rivers, it’s got sights to give you shivers/But it sure would be prettier with you” -Anna Kendrick’s Cups/When I’m Gone, from “Pitch Perfect,” which piggybacks on a folk song from the 1930s.
Click here to visit 40 & Over: Living with Fibromyalgia.
It took twenty-five years for Ashton to be properly diagnosed with a genetic connective tissue disorder, Ehlers-Danlos Syndrome, with multiple co-morbid conditions. It was Ashton’s life experiences and gained knowledge that led her to a career in patient advocacy. Ashton went to college and became a teacher but was only able to pursue her childhood dream for a short time before teaching was not an option due to the reality of her unpredictable and demanding health needs.
However, that did not stop Ashton! Her passion to educate and support others came easy when she felt called to help those who experienced similar health situations. Ashton obtained her birth doula certification and began attending births which led her to co-founding Hagerstown Birth, a non-profit childbirth advocacy organization. Ashton went on to found Tri-State EDS, an EDS support group in 2015 which currently has nearly 300 members. She has more recently become one of the 149, first, National Board Certified Patient Advocates. Among being a member of many other patient advocacy organizations, Ashton also sits on various committees and boards within those organizations.
A lover of both, reading and writing, Ashton is currently writing her own book and has two published pieces in current medical literature. Ashton also speaks on behalf of CampaignZERO – Families for Patient Safety as one of their Community Educators and lobbies on behalf of chronic illness and rare disease patients as a legislative advocate. Between spending time with her family and friends and what life has to offer around her home in the Eastern Panhandle of West Virginia, Ashton continues to stay up to date on the latest medical research by conducting her own research and participating in research studies. She enjoys furthering her education and expertise by attending continuing education classes, medical conferences and patient advocacy events. Ashton lives to make every day count as she’s committed to ensuring that others never have to experience what she’s endured.
Becoming informed and having a strong support system has quite possibly saved Ashton and her daughter’s life…a few times! Therefore, she has realized that we are our own best advocates. She strives to help patients and/or their families/caretakers navigate our complex healthcare system by becoming their own best advocates.
Click here to visit Ashton BCPA.
Hi, I’m Becky Connolly, a married 30-something mum. This is my journey through motherhood & parenting and life with mental & physical chronic illness. Based in North Yorkshire, UK.
Click here to visit Becky’s Boudoir.
My perspective of life changed drastically when I became chronically ill. Before Arthritis my schedule was filled with work, friends, underground heavy metal concerts and the music scene, drinking beer, to suddenly doctor appointments, treatment, isolation, medications and juggling single motherhood with my new very confusing disabilities both physically and mentally.
Chronic illness turned my world and me completely apart then around.
I became an Ambassador with The Arthritis Society, the largest non-profit registered charity in Canada for Arthritis in November 2016 which embarked the start of my patient advocacy journey over the next year as I prepared my blog and healed the emotional wounds I was traumatized by.
1 in 5 Canadians live with a form of Arthritis, at any age. These numbers are expected to increase.
My purpose is to raise awareness and support for those living with Arthritis, push for more research and treatments in hopes of a better future for the many suffering from this debilitating disease in Canada and worldwide.
Click here to visit Chronic Eileen.
Chronic Mom Life
Hi, I’m Marya.
I’m a midlife special needs mom with several chronic illness diagnoses including cervical dystonia, ulcerative colitis and chronic fatigue.
And if that wasn’t enough, I’ve also been living sober since 1986.
In an age where “mommy needs wine” seems to be everywhere, I know that you don’t need to drink to handle whatever life throws at you. Seriously, if I can do it, anyone can!
Join me as I share the best faith, mindfulness, self care and journaling tips I’ve learned through the years via The School of Hard Knocks.
No matter where you’re at on your journey, you can find joy one day at a time!
Click here to visit Chronic Mom Life.
Crazy Creole Mommy
The Crazy Creole Mommy Chronicles is a blog for all mommies around the world to come together to share, laugh, cry, vent and learn without obligation, stress or judgement. Created by Brooke Abbott, a single mother to a little boy affectionately called, Hippo. She once worked in entertainment, but is now a dedicated advocate & WAHM (Work At Home Mom) who lives without a colon, and still battles her Inflammatory Bowel Disease & Arthritis daily. Armed with a mommy bag and a new lease on life, she shares her stories, tears, triumphs and quick tips with other mommies with autoimmune diseases.
The Crazy Creole Mommy Chronicles is a place to share her passion for art, philanthropy, cooking, advocacy, living with an autoimmune disease & motherhood. There are a lot of women like Brooke that are full-time moms with challenges, but they live a life not defined by them. These women are more than pacifiers, briefcases and a medicine cabinet overflowing with meds! This is the place for them!
Click here to visit The Crazy Creole Mommy Chronicles.
Fibro Mom Blog
My name is Suzanne and I want to thank you for dropping by my blog. I am going to be very honest…..I intend to use this blog as therapy. I am a person that is driven with passion; I like to set goals and achieve them. Besides being a wife and mother of three beautiful children ages 22, 16 and 9, I am also a psychology student working towards my BA. In 2014 I was diagnosed with Fibromyalgia. Learning to modify my life has been a great challenge. In my blog posts you will find comfort in that you are not alone in the challenges of marriage, raising kids, working full-time, and working towards big goals (like going back to school as an adult). I think whether you have a chronic illness or not, you will be able to relate and find encouragement in my blog posts. I look forward to getting to know you and making some new friends.
Click here to visit Fibro Mom Blog.
Free From Farmhouse
Welcome to the Free From Farmhouse!
Our home is full of fun, laughter, a Labrador and two allergic children. We are a travel loving, country dwelling family – you will usually find us covered in flour or mud! We share our lives – the adventures, the struggles and the strategies – to help others survive and thrive as a food allergy family.
My book ‘Living With Allergies: Practical Tips For All The Family’ is endorsed by Allergy UK and is being published by Pen & Sword on 30 March 2019.
It all started when our son J was born. He was an unhappy baby. He cried, he didn’t sleep and by 10 weeks old he was covered in severe eczema and losing weight. He was eventually diagnosed with multiple allergies and our journey began. After he had an anaphylactic reaction to milk at 15 months old, I set up this blog.
A few years later, Miss A was born and we were hoping she wouldn’t follow the same pattern. Unfortunately she did and we have now have two allergic adventurers to keep safe and bake egg free cake for!
Click here to visit Free From Farmhouse
Grace Under Pressure
Sarah Forbes is a Christian homeschool mom with ADHD. She is married to her college sweetheart and homeschools her two teenage sons. She writes about her faith. ADHD, mental health, chronic illness, and homeschooling.
Click here to visit Grace Under Pressure.
Hello! We’re the Hollybobbs family and here you will find tales of Holly and Jack, with an occasional appearance from mummy and daddy. We hope we make you smile!
Click here to visit Hollybobbs.
Click here to visit IBD Moms.
Ice Cream & Sticky Fingers
In early 2018, I decided to start a blogspot on blogger because I wasn’t sure how I would manage writing for more than one blog on a regular basis. Every since we had to sell my first blog, I have always had the tug to start another parenting and lifestyle blog. Finding the right blog name is critical to creating a brand that attracts readers is one of the most important aspects of building a blog.
My first blog, I spent several days brainstorming and writing down names that I thought would align with my vision. This go around, the process wasn’t as tedious. One night while I was laying in bed, it came to me and I knew that it was meant to be.
Ice cream is one of my favorite desserts and we all know that it is something that kids enjoy too. I started envisioning a young child with an ice cream cone in hand. The ice cream started melting and running down the ice cream cone faster than the young child could eat it. As the ice cream ran down the ice cream cone, it got all over the child’s hand.
Then I envisioned the child walking around with messy and sticky hands. Those sticky hands are now touching everything around them and leaving a mess behind them.
There are messes in the kids room, a pile of laundry on the floor in front of the washing machine, a laundry basket of clean clothes waiting to be folded and put away, dishes overflowing from the sink, Cheerios in the floorboard of the car, you haven’t had a date night with your spouse in ages, and the list could go on and on. Life was meant to be messy like a young child eating an ice cream cone.
Social media misleads us to believe that our lives are supposed to be perfect from preparing the kid’s lunches to your relationship with your spouse, that everything is neat and tidy in your home, and that you are living the dream life. Nobody posts when things go haywire or when life isn’t perfect. Instead, we try to hide those messy moments and we don’t dare post them on social media for everyone else to see.
Even though I have been a blogger for over 5 years, I am even guilty of portraying that I have a perfect life. However, that is far from the truth. I created this blog to share life’s messy moments and do my best to portray what goes on behind the scenes.
Click here to visit Ice Cream & Sticky Fingers.
Ain’t No Shame in Chronic Pain
I am a chronic pain/illness warrior who currently has multiple diagnosis and is also working on trying to live healthier. I recently have had to adjust my life and make changes due to pharmaceutical side effects that make the benefit no longer worth it. I advocate for numerous diagnosis and volunteer with the International Support Fibromyalgia Network , US Pain Foundation, MS Society and a few others. I coordinate a local in person and online support group, as well as an international online group and several other social media platforms. I believe we as patients need to be the advocates to make an impact on the world and bring our issues to life.
I am an ambassador for the US Pain Foundation, a brand ambassador for IVYE clothing, a webe warrior for Health be me, and a member of the Breakthrough Crew at Clara Health.
Click here to visit Ain’t No Shame in Chronic Pain.
Life in the Loop
Hi! I am 32 years old and live with my husband and our dog Cooper on Long Island. I am a special education teacher currently on disability due to living with chronic illnesses (you can read my full story on how I was diagnosed). I love spending time with loved ones, the beach (especially at sunset and sunrise), reading, sports, traveling and video games.
Although my body forces me to sit still often and prevents me from doing some of the things I love most, I found my way to writing which has become a passion. After instagramming my life away, blogging was suggested to me by some family and friends. Writing and connecting with others has become extremely important to me and has found a special place in my heart. I feel incredibly fortunate to have found something that helps me cope with a life of chronic illnesses. Not only does it help me cope, it is a vehicle through which I hope to inspire and help others living with chronic illnesses. I can’t wait to continue down this path of meeting amazing people through writing.
Click here to visit Life in the Loop.
Lights Camera Crohns
Natalie (Sparacio) Hayden, 35, is a former TV news anchor living in St. Louis. Her mission in life is to be an advocate for those battling inflammatory bowel disease and to show that a chronic illness doesn’t have to dull your sparkle. Natalie was diagnosed with Crohn’s disease in July 2005. After several hospitalizations, countless medications and flare ups she underwent her first surgery in August 2015. Natalie and her husband Bobby welcomed their first born, Reid, in March 2017. They are expecting a baby girl in January 2019.
The blog covers everything from overcoming struggles to celebrating small victories. Stay tuned for weekly articles. Keep swimming, friends!
Click here to visit Lights Camera Crohn’s.
Lupie Homeschool Mama
Hey there! Welcome, I’m so glad you are here! I am Cara. I am a wife, a mom – a homeschool mom, a christian, a book lover, an art fanatic, an organization freak, and a mom with chronic illness.
Why I started this blog: I started homeschooling in 2014. I was diagnosed with chronic pain in 2014. I never planned on homeschooling, it just happened. In short, my daughter needed to be home – so I brought her home. Everyone thought I was insane. Obviously, everyone had the typical homeschool doubts, but on top of it I was sick. I heard many times “How are you going to homeschool her if you are in pain?” Honestly, I had no idea. I felt called to do it, so I just did it.
This blog was created because I want to help other homeschool mamas that do this with chronic illness, low energy, depression, anxiety, etc to know that you are not alone.
The truth is: I have Lupus and I homeschool – and I homeschool well. But only through the strength of the Lord! (and coffee.. so much coffee!)
Therefore, I can tackle each day with confidence. I have really bad days, but we have SO many joyful days. Even on bad days I try to stay confident and know that God has got this. He will help me homeschool my children to the best of my ability even through chronic illness. It has taken me awhile to get here; to a place of peace, rest, and confidence, but nonetheless, I am here.
On this blog you will find posts about homeschool, motherhood, life and health, quirky kids, organization tips, and more.
Most importantly I pray that you will find posts that will empower you here.
Mama, you can homeschool through chronic illness!
Click here to visit Lupie Homeschool Mama.
Mamas Facing Forward
The internet is teeming with advice for moms and moms-to-be, but when it comes to the unique challenges faced by moms living with chronic illnesses, the resources seem to be few and far between. Mamas Facing Forward is dedicated to addressing this very important unmet need.
While not meant to replace the advice and guidance of doctors on these topics, Mamas Facing Forward endeavors to be a “one stop shop” for moms and moms-to-be who are living with chronic illnesses and have questions or concerns about pregnancy and motherhood. We want to make existing resources easier to find and work towards creating additional resources where they are needed. We want moms with chronic illnesses to know they aren’t alone and that help is available.
To help moms and moms-to-be living with chronic illnesses embrace the unique challenges we face and learn to find strength from them. To provide resources, support, and encouragement to keep facing forward – for our children and for ourselves.
Click here to visit Mamas Facing Forward.
Melissa vs Fibromyalgia
Hello and welcome to my corner of the internet. My repository of everything I have researched and experienced in order to fight Fibromyalgia – chronic pain, chronic fatigue and insomnia.
I blend research, anecdotal evidence and personal experience in order to help you fight chronic pain/chronic fatigue/insomnia and the many disorders that cause these.
Are you wondering if pregnancy will be more difficult with Fibromyalgia? If you’ll experience a flare up postpartum? How to nurse despite the pain? I write about this and more in Pregnancy and Fibromyalgia book. There’s also an entire Pregnancy Resources page for you.
Are you looking to fight Fibromyalgia? Maybe learn how I went from miserable to thriving in several years (spending a lot of time and energy researching and trying things out)? It’s all in my Melissa vs Fibromyalgia: My Journey Fighting Chronic Pain, Chronic Fatigue and Insomnia book. There’s also an entire resources page here with a heap of blog posts and printables I’ve written.
Are you wondering What it’s Really Like to Live with Fibromyalgia? Or What Works for Me: 9 Things to Fight Fibromyalgia?
I’m a mama who’s been fighting Fibromyalgia for more than a decade. After struggling through the first half of my twenties exhausted and miserably sore without any doctor interested in helping me, I decided to begin fighting for myself. I moved to a warmer climate with my parents and brothers and reduced my work hours from full time to 27.5 hours per week. That’s when life began to slowly get better.
Thoughts become words, words become actions, actions become habits – paraphrased from Margaret Thatcher – let’s think of positive things we can do to influence our health, let’s do the things we have identified that help and let’s build healthful habits to enact when we need them the most.
Click here to visit Melissa vs Fibromyalgia.
My Chronic Dreams
Grit and Chronic Illness.
My name is Angela. I was diagnosed with Crohn’s disease when I was just 19 years old. Like many others, I’ve struggled to overcome and live with my illness, but despite it, I have managed to achieve many of my dreams- finishing my Bachelor’s and Master’s degrees, achieving the job of my dreams, mastering my personal finances, traveling the world, marrying my best friend, among many others.
I am first and foremost a dreamer that believes anything is possible, given enough grit. My chronic illness brought many challenges, but it also shaped me into the person I am today. Regardless, I couldn’t have achieved many of my goals without the support of my family, especially my husband who still puts up with my struggles.
We all need help every once in a while. I hope that my stories prove helpful, but if there is something else, please let me know- what can I do to help you? Send me a message on the contact page- I’d love to hear from you!
Click here to visit My Chronic Dreams.
My Meena Life
Hi there, I’m Ava Meena. I created this blog to share my life as an expat when I moved to Germany in 2015. I discovered my insatiable love for travel during the year I spent living in Germany with my husband, Mr. Meena. Unfortunately, I also became very sick throughout that year, and I was diagnosed with lupus shortly after returning home to the USA. While lupus has limited my life – and travels – in many ways, it’s also given me a passion to share my life with an autoimmune disease and chronic pain. I’ve connected with so many people around the world who are going through the same thing and I am honored to share my journey with them. So this blog has evolved to the point where I now create content about my life and travels with chronic illness.
I currently live in Charlotte, North Carolina, with my husband, Baby Meena, and two birds.
Click here to visit My Meena Life.
My Migraine Life
Thank you for visiting My Migraine Life, my name is Sarah. I am a Chronic Migraine and headache sufferer. I am a mom of two and wife to an amazing man. I have suffered tremendously since I was 5 and have memories of migraines at every stage of my life. It has shaped the person I am today.
Around the time I taught in severe special education I turned chronic (more than 15 migraine days a month). The stress with work, time, environment, diet, sleep, and more seemed to put me into a constant migraine.
I have run the gamete on medications, procedures, natural remedies and lifestyle changes. I focus on being positive. Migraines can be depressing and surrounding myself with a positive support system and mindset helps me enjoy life. Understanding that my migraines are a disease and something I need to be consistent and proactive about has been a journey.
My blog is intended for Migraine, headache disorder and invisible illness sufferers. I also encourage parents, children, friends, significant others, co workers, bosses, and people who know those who suffer. Reading my experiences may teach you about yourself or someone you love.
I also write about being a mom, teacher and animal lover (specifically my Golden Retriever). My dog and children are such lights in my life. They teach so many lessons through their innocence, growth and love.
Click here to visit My Migraine Life.
My Stripy Life
Hello, my name is Sarah. I’m a mum, wife, writer, blogger, advocate and occasional public speaker. This is my blog, where I share our life with the world, my passion for raising awareness of Ehlers-Danlos syndrome and Charcot Marie Tooth disease and how I raise my children to be happy with their perfect imperfections. I started My Stripy Life to provide you with regular fresh ideas about chronic health, wellness and navigating the ‘systems’.
True strength is not just about overcoming obstacles it is helping others to overcome them. This is the true essence of My Stripy Life.
I’m a daughter, a sister, a mum, a friend, a wife. I’m definitely addicted to tea. I love a good book… and to tell a story. I’m born in the sign of Libra. I love to eat good food (all gluten free). This Christmas I developed a taste for champagne cocktails. White wine makes me drunk very quickly.
I’m an educator and I love to learn. I’m a problem solver. I thrive on a challenge. I am a lover not a fighter (but I can stick up for myself when I need to). I can talk for England! I like to walk in the woods and spot butterflies. I have learnt to love pilates. If I’m honest I’m slightly addicted to Facebook and Twitter is quickly following suit.
I have no agenda. I am an open book. I look at the world through rose tinted glassed. I love to dance around the front room with my children and will make the most of it before it starts to embarrass them. I love to sing really loud in the car. I am forever tripping over dogs toys, picking up (odd) socks and chasing the dog to retrieve table tennis balls.
I would love to change the world. I am and EDS and CMT warrior. I sing when I dislocate because it helps with the pain -try it! Most days I run out of spoons. I am afraid of things becoming hard for my babies. I find writing on the blog a surprisingly cathartic experience. I believe that laughing and crying at the same time is good for the soul. I try to be a good friend… a good wife… a good mum… and to teach my babies to be happy with their perfect imperfections.
Click here to visit My Stripy Life.
Hello and welcome to nicolajogston.com. I created this site to share, interact and hopefully inspire others with stories of living with disability & chronic illness, parenting and generally chit chat.
You’re possibly thinking at this point So who is Nicola?
I’m a mother to an amazing little boy Alex, he’s so full or energy with a smile that’s probably going to melt many hearts. It’s amazing seeing him develop into his own person with a character that matches his smile.
Slowly approaching the big 4-0, although half the time I feel that I have the mental age of a someone in their late teens early twenties but the physical age of an OAP. Thanks for that chronic illness. I’ve been married to David my baby daddy for almost 5 years but we’ve been together for 10. It hasn’t always been a smooth ride but it’s been an amazing one.
I am a spoonie thanks to a variety of illness including fibromyalgia, chronic costochondritis and chronic fatigue, depression and anxiety.
I was born visually impaired and try not to let it stop me growing up but after a case of acute angle closure glaucoma my vision for a little worse, combined with that and the onset of my chronic illnesses I had no option but to give up employment as it was becoming increasingly hard to carry out my job.
After a few years of being home all day long I decided to try my hand at blogging. Growing up I had aspirations of becoming a journalist and novelist. My blogging style and name has changed over the years. Finally I settled on my own name for my site.
Click here to visit Nicola Ogston.
Not Just Tired
Hello, I’m Emma, wife and proud mum to a toddler, and I have been living with ME/CFS for the past five years. I decided to start this blog to raise awareness of ME/CFS and help people understand what it is really like to live with this illness, as well as being able to connect with other people living with the same or similar conditions and share thoughts on how to live well with it.
Previously I was someone who lived an active and fast paced life as an avid gym goer, keen traveller, busy corporate employee, with a great social life. Something people may find surprising is that I’m also a qualified Personal Trainer!
In May 2013 everything changed when I was hit by a nasty virus which completely floored me and life as I knew it came to a standstill. Following the virus I was left with some pretty scary symptoms, and after lots of appointments and scans I was told this was post viral fatigue syndrome. I was then diagnosed with Chronic Fatigue Syndrome (with Fibromyalgia symptoms) further down the line. You can read more about my story here.
It’s a condition that can be pretty much ‘invisible’ and so other people can’t see how you’re feeling and struggle to understand it. I may often look well but on the inside it’s a very different story.
So often I find people (friends, family, folk in general) don’t really get it and think I’m simply ‘just tired’. Not that I think it’s their fault, as this condition tends to be poorly understood and the name itself (Chronic Fatigue Syndrome) leads people to think you are just tired all the time. However, this is very misleading and can be incredibly frustrating when you’re living with such a debilitating condition that dramatically changes your life.
I want others to know that living with ME/CFS is so much more than just being tired. Every single day is unbelievably tough, and the unpredictably of the illness means you never know how you may feel from one moment to the next.
Recently I have met and heard of more and more people who are suffering with ME/CFS and I felt that now is the time to speak out and raise awareness by sharing my experience of living with this illness. I kept a journal soon after I started with the illness, so I have documented how I felt at various stages of my journey and now I feel ready to share it with you!
I believe I am a positive person, and as someone who has always had a passion for health and wellbeing, I want my blog to reflect this by sharing some of my learnings on what has helped me over the past few years. However, I also want it to highlight the reaIity of what it’s really like to live with ME/CFS, Fibromyalgia and other fatigue related illnesses.
My hope is that by writing this blog more and more people will gain a better understanding of these conditions, and by sharing my experience hopefully others who are suffering will realise they are not alone on their journey – as well as joining me on my mission by learning how we can live as well as possible with it!
Click here to visit Not Just Tired.
Not Much Ordinary
Welcome to my blog, this is my own personal experience of the illness I have NMO NeuroMyletitis Optica. My blog is just my own personal thoughts, feelings, experiences, of things that went well, wrong, treatments I have had and medications, this may not be the same for everyone.
I hope you enjoy my ramblings as I get three years and counting of getting stuff off my chest and letting go of what happened to me, as I continue to learn and hopefully you will find this an enjoyable read.
Hold on tight….cos here we go…..lets ‘ave it…bring it on NMO…..
Click here to visit Not Much Ordinary.
Aged 18, to everyone’s surprise, I made a decision to completely change course and thus applied for Nursing college. My top 3 choices were all London teaching hospitals and I’m proud to say that after a rigorous interview process I was offered places at all. One odd thing did happen at St Thomas’s when we had our medical examination – occupational health by today’s terminology. After showing the rather scary matron both sides of my hands, on turning around to be viewed from behind I was tapped on my shoulder. “You have a weak back, my girl” she barked. For an 18 year old that was enough to make the decision between Tommy’s and Bloomsbury School of Nursing (University College and the Middlesex) and I duly moved into the nurses’ home on Foley Street at the Middlesex hospital. How many times do you think I’ve heard the words of the battleaxe matron in my head over the years? Would I change my career choice with hindsight, particularly now I know that disc problems are common with Ehlers Danlos Syndrome? No, I loved it and I miss nursing every day. I might have made some slightly different choices though!
So, my first encounter with the surgeon’s knife came in April 1991 following nearly 6 months off work with back and leg pain. I had taken my nursing finals lying on a mattress, had waited the obligatory 12 weeks on the NHS before a physio referral and had undergone traction at the hands of a private physio. By the time I had a private CT scan, I was in Cauda Equina Syndrome. A local physio had told me that “we nurses were all the same complaining about our backs” when no improvement was seen under her care, and that “it was all in my head”! I was incontinent of urine, had non functioning bowels, footdrop and extreme pain!! The surgeon who ordered the scan and the radiography consultant were so horrified by the ruptured disc that they saw, that they rushed me in on a private list for the following evening at the Royal Masonic hospital. A “slipped disc” describes when the tough exterior of a disc cushion separating 2 spinal vertebrae splits and the soft jelly interior bulges out. In my case the whole jelly interior had ruptured out of the disc and the radiographer actually showed me my scan as he couldn’t believe I was walking. The theatre staff all gave their time for free and I was the youngest patient on the orthopaedic unit. I made a really good recovery and went back to work several months later. At the time a young Australian senior registrar warned Duncan that this back problem would come back to haunt me.
Life continued – carving out a career in Head & Neck cancer nursing and then palliative care, getting married, having 3 children. My back problem lurked beneath the surface alongside my “double jointed” issues, circulation and gut problems and migraines….but the majority of friends and acquaintances never knew the real extent of it – because I never let them. I underwent 3 caesarian sections as it was uncertain how my back would hold up during labour, and I was told off by the midwife when that upset stomach turned out to be baby number 3 when she told me to stop at 2!! But still things were good…….
Then during a night shift, the night that Obama was elected in for the first time, the searing pain returned. This time the pain didn’t settle, acute became acute on chronic……and so began my life with chronic pain.
Click here to visit Pain Pals.
Holly Bertone, CNHP, PMP, is a #1 Amazon.com bestselling author of the book Thriving in the Workplace with Autoimmune Disease: Know Your Rights, Resolve Conflict, and Reduce Stress.
She is a highly sought-after speaker and wellness expert. After spending over 20 years as a Project Manager in both government and industry, she is now the President and CEO of Pink Fortitude, LLC and runs the health and wellness website pinkfortitude.com.
Holly is a breast cancer and Hashimoto’s survivor and turned these two significant health challenges into a passion to help others. She inspires others with her quick wit, brutal honesty, and simple ways to be healthy in real life.
Click here to visit Pink Fortitude.
Surviving Life’s Hurdles
Surviving Life’s Hurdles has been created to provide some much-needed support to anyone struggling with their own personal life hurdles. I’ve experienced so many of my own hurdles recently that I know just how hard it can be and sometimes how very isolating too. I really hope I can help you to make a positive difference to your life just by sharing some of my own ideas and experiences.
Most importantly, Surviving Life’s Hurdles will offer support with no judgement or assumptions, instead I aspire to provide understanding, thoughtful and sympathetic posts which are genuinely useful and inspiring when you need them the most.
Click here to visit Surviving Life’s Hurdles.
The Chronic Mama
For Chronically ill parents, making life a little easier, a little funnier, and a little more delicious.
Click here to visit The Chronic Mama.
The Chronic Parent
Hello! I’m Lotty and I have type 1 diabetes, rheumatoid arthritis and coeliac disease. This blog is all about how I juggle the challenges of living with these conditions with raising my two lovely children, known as Tiny and Small in my posts.
I really hope my posts will encourage you if you are raising small children, living with long-term conditions, or both! Drop me a line if you’d like to connect.
Click here to visit The Chronic Parent.
The Incidental Parent
A question I find myself asking more and more. I am Erica. I am The Incidental Parent. A school run loathing, swear word using, forty-something mum of two boys. I’m a food-loving vegetarian, I enjoy a tipple and a giggle. Primarily the blog is all about me and my thoughts. My natural habitat is a watering hole somewhere on Facebook.
The two boys in question are Big L, who was born in 2011, and Little L, who surprised us in 2016. Their dad is Vince, or Monsieur Incidental as he is often referred to. He is French and probably wonders how he ended up here. We met in a pub in 2009 and the rest, as they say, is history.
My mum also lives a few minutes walk away (lucky Vince) so she features occasionally, but daily at my house…
Click here to visit The Incidental Parent.
The Life and Adventures of Cateepoo
Proud mom of two young amazing adults and an aging border collie. Wife to a rock star! Educator to adults learning English and/or working on their high school equivalency exams. Strong believer in gratitude, finding positive in everyday life, and leaving a smile everywhere you go. RA Social Ambassador and patient contributor @RAHealthCentral.
Click here to visit The Life and Adventures of Cateepoo.
The Mindstorm: Childhood Mental Illness
The Mindstorm is a blog about my life raising a child diagnosed with Childhood Onset Schizophrenia, and other childhood onset mental illnesses.
Chrisa began blogging when her therapist suggested she journal her feelings and thoughts about raising a child with a severe mental health condition. Her blog, The Mindstorm, catalogs the day-to-day triumphs and tribulations of raising Timothy, as well as articles on fighting mental health stigma, navigating the Special Education system, sibling issues, and parental self-care.
Click here to visit The Mindstorm: Childhood Mental Illness.
The Spoonie Mummy
Hi, my name is Natalie AKA The Spoonie Mummy. I am 31 and have a wonderful boyfriend, two gorgeous sons and a beautiful step-daughter. I love to write, read, spend time with my family, watch movies, cook and play with make-up. I have numerous chronic health conditions including arthritis, crohns disease (for which I have an ileostomy), iritis, high blood pressure and ostopenia.
I started my blog in February 2017. The previous 18 months had been extremely difficult and writing certainly helps me to deal with things. But more than that, I wanted to help others. I want people to see that even with arthritis, you can still have many adventures. That even with an ostomy you can still look and feel good. That you can still be a fantastic parent, even when chronically unwell. I hope to inspire, support and raise awareness using my blog and appreciate everyone who has supported and helped me with this.
I chronicle many different areas of my life – the health stuff, parenting, my hobbies and things we all do daily. I am currently a part time student with The Open University, studying for my degree in Childhood/Child Psychology.
Click here to visit The Spoonie Mummy.
The Zebra mom
31-year-old as Evie Evans-Nevin is a former journalist from west Cork, Ireland. She is mother to Alexander aka Bendy Boy (8) and Olivia aka Ollie Pops N’Clicks (3). In addition to juggling work and family life, Evie was diagnosed with a rare condition called Ehlers Danlos Syndrome (EDS) in 2013, one year after she was married. Other diagnoses include Postural Orthostatic Tachycardia Syndrome, Orthostatic Hypotension and Autonomic Mediated Synope, which are a result of her EDS. She shares her life story about parenting children with special needs children as a mother with special needs.
Evie has spent years advocating for patients’ rights and has spear headed campaigns to raise awareness of Ehlers Danlos Syndrome. She believes that this generation of Zebras need to fight to make life easier for future generations.
Evie loves breastfeeding, babywearing and cloth covered bums.
If it comes in zebra print, she’s gotta have it!
The zebra is the international symbol of rare diseases. Just in case you were wondering about the zebra and zebra print obsession.
She lives by her favourite quote:
“Nil Carborundum Illegitimi.”
If you have any questions in relation to any of the subject matters mentioned in this blog, do not hesitate to contact Evie. Her goal here is to educate and help others.
Click here to visit The Zebra Mom.
Tripping Through Treacle
Welcome to my blog, all about my life with Multiple Sclerosis (MS). My writing is mostly powered by coffee (and wine). This is a place for me to share my thoughts about what it’s like to live with a chronic illness – trying to be a good Mum to my two lovely monsters kiddies, whilst working part-time and trying not to fall asleep.
I share healthy recipes, blog about being a ‘spoonie’ parent (read this if you are unsure what cutlery has to do with MS!) and other random things that I find myself encountering as I meander – or stumble – my way through life with MS.
Click here to visit Tripping Through Treacle.
Write On Fight On
So let’s get the awkwardness out of the way….
I’m Jay Armstrong and I’m a high school English teacher, writer and I’m addicted to storytelling.
The creation of this website has been a strange and winding one. To keep things short I have two rare diseases. In 2013, I was diagnosed with Cerebellar Degeneration, an unpredictable, untreatable condition with no known cure. Then in 2015, tested positive for a treatable but chronic auto-immune disorder that causes bodily inflammation known as Sarcoidosis. By all accounts the two disorders are not related. I’m just lucky.
When I was diagnosed with Cerebellar Degeneration, the doctors scratched their heads and suggested I get my affairs in order. I was 33 years old.
Scared out of my skull I thought a lot about not just the prospect of death but dying without ever doing the thing I really loved…writing. The thought of dying with so many untold stories nestled inside me was– well– killing me.
So at some point I decided that if I was going out, I would make sure my stories weren’t going with me.
Then something funny happened… after all the blood tests, CAT scans, MRI’s, DaT Scans, muscle biopsies and ultrasounds, after all the neurologists, pulmonologists, rheumatologists and physical therapists, after all the quiet waiting rooms with out- dated magazines, after the online support groups, after all the nervous hours scouring WebMD.com and even after a visit to the nexus of the medical universe- The National Institute of Health… I didn’t die.
In fact, after two years of physical and emotional beatings, I began treatment for the Sarcoidosis, read then watched Silver Linings Playbook and am unashamed to admit I’m doing well.
Ironically, it was those beatings that brought me back to life. Those beatings reinforced things I knew all along… I belong reading good books, attempting to write good stories and teaching others about writing.
Having a rare disease is lonely business. Writing is lonely business. Hell, living is lonely business. I want you to know that you are not alone. I want you to know that your story doesn’t just exist…your story matters. And I hope this site gives you the courage to tell your story, to preserve your story.
I want to offer you my stories , my perspective on writing and life and a place to embrace the power of the human story.
So Jay, do I need to have endured or be enduring some medical tribulation in order to enjoy this site?
God I hope not.
If you’re a student struggling through “school writing”, an aspiring author, a lover of literature, lost in life’s wilderness or just looking for a little inspiration with the prospect of a little humor I hope you will frequent WoFo.
Besides just offering advice and perspective, WoFo wants to demonstrate the power of the human narrative. To do this, WoFo also serves as a community outreach program that facilitates Write-a-Thons (think walk- a- thons, without the neon headbands). The purpose of the Write -a-thon is to bring people together, afford those people time create original art while raising money for charitable causes. Be sure to check the Write- a- Thon page for latest happenings and events.
I have learned that stories have the power to change lives, to save lives.
I believe we all have stories inside us just aching to be heard. I hope this site offers you the support, inspiration and courage to tell your story.
Click here to visit Write On Fight On.
Do you have a blog about chronic illness parenting to add to the list?