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Living with a Chronic Illness such as Fibromyalgia, Multiple Sclerosis, Lupus, Ehlers-Danlos, etc. can be a challenge. So much of your time is taken up with medical appointments, tests, daily pain and discomfort, mobility issues and more.
We sometimes forget to take time to spend on positive, “non-medical” moments. Maybe it’s because we have to look for them, rather than have them always there. Maybe it’s because we’re so tired from being ill that it’s too much effort.
I believe it’s important though, to find those good things in the day or to create moments when necessary. I’d like to share a few ideas with you today to help you fill your time with positives.
Our pets bring us so much comfort, whether you live with Chronic Pain or not. If you do live with an Illness of some sort, this is especially true. Pets seem to have a way of knowing when we need an extra cuddle or two, and they’re always there for us. I have a wonderful cat named Dorie, who loves to lay on my legs when I’m on my laptop (like right now)
I can feel my stress dissipating as soon as Dorie lays with me. It’s a tangible and therapeutic benefit of cat ownership and a wonderful feeling period. If you don’t currently own a pet, it’s something to consider.
I love to read and a good book can completely transport me away from a painful day. I get so caught up in the story I’m reading that everything else fades into the background.
My personal preference for books is stories of people who have overcome challenges, especially Chronic Illness of their own. I also love autobiographies and biographies in general, and books on True Crime. Ann Rule is a favourite author in that category.
A couple of suggested books and authors I adore:
Salt In My Soul is a wonderful book about a young woman who lived with Cystic Fibrosis. Mallory’s story is both joyous and sad as she talks about being a young woman with a fatal disease. Her mom takes up the story when Mallory can’t and shares her daughter’s life and dreams.
Let’s Pretend This Never Happened is by one of my favourite author’s, Jenny Lawson. This is a true account of her life growing up with mental illness and is absolutely laugh-out-loud hilarious. I also recommend her second book, Furiously Happy as a follow up!
Everyone has their own preferences when it comes to music that makes them feel better. I have one friend who loves to rock out to death metal and another who prefers classical music.
I find that listening to the old classics is what works best for me, to distract me from pain and discomfort. I love Led Zeppelin, Pink Floyd, Queen, Electric Light Orchestra and so many more. When I can sing along with the songs, it’s easy to put pain behind me.
Choose a gendre that suits your style, or even your particular feelings for the day. Light and upbeat or dark and moody, the goal is to move beyond pain so your focus is elsewhere. Living with Chronic Illness is never easy, so music can often be a great distraction.
Living with Chronic Illness often leaves you with a lot of free time. Some people are more visual than others and find that movies and/or TV are what helps them best. With services such as Cable, Hulu, Netflix and more, there’s an endless variety of content available.
One new thing that’s all the rage is ASMR videos. ASMR stands for Autonomous Sensory Meridian Response, and is a sensation of tingling that you get in the head and spine after viewing/hearing certain sounds or sensations. Hair brushing can bring this on, along with many other stimuli.
This Wikipedia article sums up ASMR nicely and you can find many videos on YouTube to help you experience the sensation. I haven’t personally tried it yet, but if you have, I’d love to hear about it…just leave a note in the comments section.
Another way of relaxing is by sitting outside and soaking up the sounds of nature. Birds, crickets, frogs…all of these can be peaceful and induce a sense of calm in the body.
I am just starting a new hobby of “Paint By Numbers” and have been given this kit by a company called Winnie’s Picks. I will be doing a full review of this product at a later date, when my painting is complete, but I wanted to share with you here what a wonderful kit this is.
Inside the solid mailing tube is everything you need to complete a full size painting. There is a canvas as well as a paper copy of the painting, several different sized brushes and all the paint you can possibly need to complete the work. You do need to frame this yourself when it’s done, but everything else is there. The prices are incredibly low for the quality of product too!
There are many hobbies that you can do when you live with Chronic Illness. You want to be able to work on things that you can pick up and put down when needed, but that still give you a challenge at the same time.
Some of the best hobbies to consider are needlework, knitting, crochet, felting, colouring, painting and working with paper, such as cardmaking. You can also get into more detailed work, such as embroidery, jewelry making, candle making, soapmaking and so much more. Tell me about your hobbies in the comment section. I’m always up for learning new things!
I love watching the hummingbirds that come to our feeder. They bring me such joy as they sip at the nectar I’ve left for them, and I can almost feel my blood pressure going down as I observe them.
Finding ways to live with Chronic Illness doesn’t have to be difficult. We generally have everything we need for distraction in our own homes. Sure, there are days when we just feel too ill to watch a movie or play around with a hobby, but for the most part, we can use the above techniques to distract ourselves.
What sort of things do you do on a daily basis, to manage your Chronic Illness? Share with me in the comments so we can all benefit. Remember,
My next guest is the amazing Sam Moss from Australia. She has a fascinating story so I hope you enjoy reading about her!
Introduce yourself and tell us a bit about you…
Hi, I’m Sam and I live with my beautiful husband in Australia. I have been living with a series of complex medical conditions for over 9 years now. In 2014 my health deteriorated to the point of needing to medically retire.
I had lived life in the fast lane for 30 years with a successful management career in financial services. Prior to medically retiring I was an Executive Manager in the Financial Services Industry. A career I loved as it predominately involved coaching and developing a Leadership team.
I also enjoyed various change management consultancy roles for not for profit organisations. I loved every minute of those able bodied years and am very grateful for the experiences I have had.
My career highlights include;
Contributing to creating an award winning customer experience culture in the various Banking and Insurance departments I’ve managed.
Leading an inspired and motivated team of people, many of whom are now lifelong friends.
Receiving the inaugural Banking Leader of the Year Award just before I medically retired (such a special parting gift)
Restoring an historic church building to its former glory,
Appointed as a management consultant in the Anglican Church, and assisted Senior Church Leaders (Clergy and Lay) to bring about exciting reformative change.
Now I’m medically retired I’m exploring my long term passion to be a writer. I’m a member of the Chronic Illness Bloggers Network and an ongoing contributor to “The Mighty”.
With time on my hands I decided to start a blog called ” My Medical Musings” as a way to reach out to others dealing with life changing health episodes. I also founded a Global online support forum, “Medical Musings with Friends”. It’s a place for those living with chronic illness or their carers, wanting the hand of friendship, as they journey an often lonely and difficult path.
It is a place to laugh, cry, share and vent together. It’s my absolute passion and honour to walk daily with others who understand exactly what it is like living with chronic illness.
When health gets complex, it’s really important to find others who are also battling multiple issues to share the never-ending complexities that arise and share all aspects of life living with chronic disease.
One fascinating fact about me is:
Not sure there’s much fascinating about me at all. My husband and I have moved 17 times in 24 years of marriage!! Some of those moves have been interstate and we have seen a lot of Australia as a result. That part has been a blessing.
Yes we are expert movers and this last move is definitely it. The combination of my husband’s work as an Anglican minister and my work in the Bank, was the reason for the majority of the moves. We have just settled into a lovely Lifestyle village which works perfectly for my disabilities, so hopefully no need to move again…EVER!!!
Chronic illness(es)/disabilities I have…
The list is way longer and complex than I would like, but here goes:
Rheumatoid Arthritis ( diagnosed 2010)
Sjogrens Syndrome ( diagnosed 2011)
Prolapsed Rectum ( diagnosed 2011)
Permanent Colostomy ( 2013)
Progressive Rare Bone Disease which causes my long bones to pathologically fracture. This includes both my femurs, 7 foot fractures, spinal fractures and severe Lumbar Spinal Stenosis with compressed spinal cord. Fractures won’t heal and surgery to fix my spine constantly fails as the bone disease continues to attack it.
My symptoms/condition began…
In 2010 I was in my mid 40’s, at the height of my career as an Executive Manager in a major bank.
In April of that year I was getting ready to take 6 weeks long service leave to spend some quality time with my beautiful husband. We were going on a road trip through South East Queensland down to the Hunter Valley in Northern NSW and I was so looking forward to having a break.
On the way home I started feeling really unwell and I just couldn’t shake off an extreme tiredness, joint pain like I had never experienced and abdominal pain. My hands were so sore that even the slightest touch was excruciating. I couldn’t hold my husband’s hand or pick anything up. My hips were so painful that walking normally was becoming difficult unless my husband supported me. We knew something was not right.
As soon as we got home we headed for my GP and a whole list of Specialist appointments followed. Long story short, 2 months later I was diagnosed with Rheumatoid Arthritis (RA) after being first diagnosed with Q fever, Ross River Virus and a list of other false positive diagnoses.
My body was not behaving normally and my Doctors and I were to discover over the next 6 years just how abnormal it actually was. I had no idea what lay ahead.
As time went on…
With RA medication on board, I continued to work for another 12 months before my body began to basically break down bit by bit. My last day in the office was Melbourne Cup Day 2011. I was trying to push through the day and getting ready to judge my Departments “Fashion on the Fields” when my Personal Assistant found me in agony in the ladies bathroom and rang my husband to come and pick me up.
From that day my life was never to be the same again.
In 2011, I was diagnosed with a prolapsed bowel which refused to mend despite 3 attempts at conservative surgery. By mid-2013 we knew we had no choice but to accept that I needed a permanent stoma.
In November 2013 I medically retired and became the “proud” owner of a permanent colostomy. It has been quite a journey with my medical team including a Clinical Immunologist, Colorectal Surgeon, Endocrinologist, Orthopaedic Surgeon, Gynaecologist, Ear Nose and Throat Specialist, Infectious Disease Specialist, Neurologist and Dermatologist, all trying to work out what is causing my health issues.
I have been called “special”, “unique”, “one of a kind” but really they all believe overall, aside from Rheumatoid Arthritis, I have a rare idiopathic disease (a disease of its own kind).
I have lost count of the number of times I have been hospitalised over the past 8 years. I have had 14 surgeries since October 2010, with the prospect of more ahead.
I thought Rheumatoid Arthritis and a permanent colostomy would be an end to what my body was going to challenge me with. I hoped I could settle comfortably into medical retirement with my husband but I soon came to realise that my life was going to be an ongoing medical adventure.
In October 2014 my left femur (thigh bone) broke spontaneously. Yes, all on its own, I didn’t fall from a great height or have a major car crash, which is apparently the type of accident I should have been involved in to have the strongest bone in my body break. Mine just broke as I was opening my bedroom door!
It is called a pathological break and my Specialists believe I have a rare genetic bone disease. My bones are extremely dense and marble like and my bone turnover is almost non-existent. We also now know that my bones are dying and much of the soft tissue around my bones is also dead tissue.
12 months after my leg broke, my right femur was also showing signs of disease on MRI with bone marrow involvement so a rod had to be placed in that to prevent an imminent break and repeat medical emergency like we had with my femur break in 2014.
I am constantly dealing with multiple foot fractures and none of my broken bones in my legs or feet will heal. My bone pain is excruciating on a daily basis. My left femur which snapped in two is still broken nearly 5 years later and has been diagnosed as a non-union break. I have been on two crutches or a walker since the femur broke and also have a mobility scooter. The disease is now attacking my spine and causing excess bone to grow into the spinal cord. Despite surgeries to try and remove the bone, it grows back so quickly the surgeries are deemed as “failed”.
My diagnosis process was…
Complicated to say the least. As above it was a long process but also quick in the sense that I was referred to the right Specialists and soon had a team working on my case to try and work out what was going on. Some diagnoses were by chance. 6 months prior to my femur snapping in two, my Clinical Immunologist had sent me for a Bone Density Scan.
His concern was low bone density (Osteoporosis) because I had been on Prednisone for 4 years. He was so surprised to find I had extremely high bone density, really high. That just shouldn’t have been the case. He quickly referred me to an Endocrinologist who began monitoring my bone blood markers. All was not good. High Bone Density and low bone turnover meant new bone was being laid down but the old bone wasn’t being replaced. Bone was being added to bone and my skeleton was getting thicker and thicker.
I remember my Endocrinologist saying, “hopefully it will just settle and you won’t get any broken bones”.
I was suffering with terrible bone pain and within 6 months of her comment she was by my hospital bed in a state of shock as my left femur had snapped in two so spectacularly. I was so blessed to be alive as I was told it could have severed my femoral artery. I was also the pinup girl in the hospital…well, my x-ray was!!
The hardest part of living with my illness/disabilities is…
For me it’s the constant daily pain and exhaustion that accompanies it.
A typical day for me involves…
Wake up around 6.30am, from a generally broken night’s sleep;
Take pills before I try to get out of bed. Crutches await my descent from my bed….the first effort to get out always fails. I just can’t weight bear until the pills help a little. My back often paralyses my legs and I simply can’t move until anti-inflammatory meds help take the pressure off my spine. When I first get up I only get as far as the ensuite and then straight back to bed;
Eventually I make it to the kitchen and put the kettle on. Depending on how I am feeling and if I need to stand rather than sit, I’ll make a simple breakfast of cereal with banana and a cup of tea. If I can’t do it my husband does. We sit and eat breakfast in the lounge room and watch the morning news and chat together. I also check in on my online support forum, emails and messages;
I take my second set of morning pills with food. These help but they fatigue me for the first 2 hours of the day making it even harder to coordinate movement;
I rarely cry. I don’t feel sorry for myself. I’ve become used to my circumstances, although I still make plans in my head of all I’d like to do during the day, knowing that I’ll be eliminating items from that list constantly. Staying perfectly still the leg hurts but it’s a duller pain.
The slightest movement and it’s like I’ve broken it all over again. Fractured feet and stress fractures in the opposite leg add to my overall disability. The stenosis is by far the most crippling. Even lying down only brings temporary relief and I soon have to get up and try and move;
I’m determined but after breakfast I have no energy to get dressed just yet. I leave showering until the evening after dinner. So much easier to shower then knowing I can collapse into bed straight away.
In the morning I want to run around and stack the dishwasher, dust the furniture, get dressed and do my hair and makeup all before 7.30am. Ha! Not happening! I used to move at such a fast pace. I miss that. I will do all those things but it will take me 3 or 4 hours at a ridiculously slow pace.
I get told others should do those tasks for me but it is so important for my well-being that I keep as much independence as I possibly can. My husband does all the washing and cooking as that is outside of my capabilities.
I still have goals to get better and resume those activities, even though I know it’s unlikely. There is no cure for my disease, it’s progressive and my prognosis is unknown.
After lunch the fatigue from battling the pain is beyond belief so I need to lie on the bed for at least an hour, if not longer. I’m not a day time sleeper so I just relax as best I can, read, watch TV, blog, write articles and manage my online forum.
In the late afternoon my husband and I will have afternoon tea on our back patio. The fresh air and sitting in our little courtyard/garden brings me so much joy and is so relaxing. We’ve set it up like our own private cafe and I arrange our afternoon tea as if it were served at a boutique coffee shop or tea house. The simple things bring such joy.
I sit in the lounge room for dinner while we watch the news. I take my evening pills, shower and am back in bed by 8pm. My husband joins me by 9pm and we watch TV together. We love our evenings.
I rarely leave the house aside from medical appointments but I still have goals to get out a little more and we’ve started to achieve those once a fortnight.
All of the above is my normal routine unless my stoma becomes over active. I then have to manage changing my stoma appliance, putting all best laid plans out to pasture.
(I have a permanent colostomy due to a severe rectal prolapse. A ‘colostomy’ is a stoma formed by bringing part of your colon (large bowel) out on to the surface of your abdomen).
I do actually love my stoma, which I’ve had for 6 years on the 11th November. The pain and disability from having a severe rectal prolapse was horrific. My stoma restored some quality of life and I’m so grateful for it.
The one thing I cannot live without is…
Being ill/disabled has taught me…
Life isn’t over with a chronic illness diagnosis and disability. It’s just different. New opportunities to connect with others and pursue new passions and goals, is achievable. It’s all about our mindsets. It’s about choosing to embrace new ways of living. I’ve learned to focus on enjoying moments, rather than planning ahead for good days/weeks or months.
In many ways so much of my life has changed, but nothing has changed where my faith and trust in God is concerned. I am resolved to make the best of each and every day I am blessed with.
I love each day, as I know despite my unrelenting pain, I will have moments within the day that bring joy, laughter and connection with others in some small way. Just writing this has been something I’ve enjoyed. I will definitely be collapsing on the bed straight afterwards but it’s been a delight and an honour to collaborate with Pamela on her blog.
My support system is…
My Husband is my full time carer and my main support.
My Online Support Forum Members provide me with so much love and encouragement on a daily basis
Close Friends who stay in touch with a text, email or a visit (for those who live close enough)
Our family all live interstate or a few hours away so we don’t get to see each other in person much but they are amazing in their care and concern, and also regularly text, email and phone my husband and I.
I have Government Funded support for Physio, Podiatry, Occupational Therapy, Carers, transport, home modifications, plus permanent approval for Residential Care if my health progresses to the stage of need 24 hour around the clock care.
Our Church, although having just moved to a new suburb, we are still in the process of forming new connections.
If I had one day symptom/disability-free I would…
Go for a long drive with my husband in the country. Visit little towns, stop at gorgeous cafes and walk for miles around country shops.
One positive of having a chronic illness/disability is…
I think having true empathy for others suffering with chronic illness/ disability has been a growing experience for me. We think we understand what it’s like but when you’re relatively healthy, life is busy and we don’t take enough time to look outside of our own world, to truly understand another’s needs and struggles.
Ultimately the one positive….. the gift of time
One final thing I want people to know is:
That moment when the focus shifts to the possible, rather than looking at the impossible, is a life changing moment. It’s the moment a cheerful heart has room to emerge, despite our chronic illness
Fibromyalgia is a condition that affects millions of people in North America. While typically thought of as an “everyday person”s condition, there are a number of celebrities who live with Fibromyalgia who have talked about it in public. It’s helpful to know we’re not alone, and because of these people, Fibromyalgia is starting to gain more recognition.
Here is a list of 10 Celebrities who live with Fibromyalgia.
Lady Gaga is perhaps the most well-known celebrity with Fibromyalgia. After struggling with chronic pain for many years, she confirmed in September 2017 that the cause of her pain was fibromyalgia.
In her Netflix documentary “Gaga: Five Foot Two,” released on September 22/18, Gaga opened up about the challenges of finding treatments and coping techniques to help manage her symptoms. She is seen using ice packs and trying deep massage and dry needling as ways to help manage the pain.
“I am praying that more and more people come forward and we can all share what helps/hurts so we can help each other” Gaga said in a recent tweet.
Morgan Freeman is the actor best known for roles in The Shawshank Redemption, The Bucket List with Jack Nicholson and for winning an Academy Award for his role as a beaten up cornerman for Clint Eastwood in Million Dollar Baby.
In 2008, Morgan Freeman was involved in a car crash that left him with multiple injuries, including a shattered left arm. He went through a 4-hour long surgery to save his arm and has talked in several interviews since he continues to experience “excruciating” nerve pain and now lives with fibromyalgia.
In 2015 he told The Daily Beast he treats the pain with marijuana. “Marijuana has many useful uses,” he says. “I have fibromyalgia pain in this arm, and the only thing that offers any relief is marijuana”.
Though she had previously been vocal about her struggles with endometriosis and chronic pain, Lena Dunham revealed in an Instagram post in October of 2018 that she has fibromyalgia. She described what it’s like to have an “invisible” illness like fibro, writing, “I appear to be totally able-bodied but it’s complex, and I am just trying to do everything required to maintain a life of joy and service. My work costs everything I have. This is fibromyalgia. It’s little understood and so even though I have a lot of knowledge and support it’s hard to shake the feeling I am crazy. But I’m not (at least not this way!) and you’re not.”
Dunham continued to say that pain, however it presents — whether it has a visible culprit or not — is valid. She wrote, “Your pain, whatever shape it takes, is yours and so it is real. I believe you when you say you hurt. I have learned time and time again how important it is to believe.”
Sinead O’Connor is an Irish singer-songwriter who stepped away from music in 2003 because she was struggling with fibromyalgia and wanted to take care of her children.
“Fibromyalgia is not curable. But it’s manageable,” O’Connor said in a 2005 interview with HOTPRESS. “I have a high pain threshold, so that helps – it’s the tiredness part that I have difficulty with. You get to know your patterns and limits, though, so you can work and plan around it. It is made worse, obviously, by stress. So you have to try to keep life quiet and peaceful.”
Sinead returned to the music scene in 2005. Despite numerous setbacks, she said she hopes to continue singing and doing what she loves but stays away from the parts that cause her excessive stress, which can exacerbate fibromyalgia symptoms.
“The Waltons” actress Mary McDonough has been very open about her battles with fibromyalgia, lupus and Sjogren’s syndrome. She believes she developed the conditions after having an adverse reaction to breast implants she had inserted in an effort to reinvent herself following the series’ end.
“Within 24 hours I broke out into a rash all over my back and my chest,” McDonough told Smashing Interviews Magazine. “But over the course of the 10 years, I just couldn’t put my finger on that. I just didn’t feel right. The chronic fatigue set in, the rashes, the rash across my nose and the bridge of my face which we now know is like a lupus rash, the joint pain, the muscle stiffness, eventually being diagnosed with fibromyalgia, and then the collagen disorder called Sjogren’s syndrome, my hair fell out and I would be tired all of the time.”
McDonough is now a public speaker, author and workshop leader, often talking with young women about their struggles with body image and self-esteem.
“Real Housewives of Beverly Hills” star Kyle Richards said she first became sick while her mom was sick with cancer, but was initially told she was depressed because her mom had passed.
A friend told her she might have fibromyalgia, so she went to a doctor who specializes in the condition who confirmed her diagnosis. “All of a sudden I felt like I had an answer and I felt better because it causes so much anxiety [not knowing],” Richards said.
Richards has since sought out alternative methods for treating her fibromyalgia pain — on “The Healer,” she worked with Charlie Goldsmith, an “energy healer” who aims to help people reduce their chronic pain.
Actress and comedian Janeane Garofalo has been very open throughout her career about her struggles with fibromyalgia as well as mental and emotional issues, including anxiety and depression. She has even incorporated her fibro into her stand-up routine, using humour and laughter to cope with the pain she experiences.
“I had no idea I was chronically dissatisfied,” she saidabout being prescribed an antidepressant for her fibromyalgia.
Michael James Hastings
Michael James Hastings, known for his role as Captain Mike on “The West Wing,” had to retire from being a school teacher at age 35 due to fibromyalgia. It was his chronic pain that led him to move to Los Angeles to pursue a part-time acting career.
Hastings has said that he copes with the symptoms of fibro with natural means, such as supplements, exercise, massage therapy, acupuncture and visits to the chiropractor.
“I also have learned to accept that some days I am not going to be able to keep up with my schedule or other peoples’ schedules and I just need to rest and ‘lighten up,’” he said in an interview with the website Back Pain Relief.
Actress A.J. Langer, best known for her role on “My So-Called Life,” “Seinfeld” and “Three Sisters,” was diagnosed with fibromyalgia as a teenager but continued to pursue acting. After filming “Three Sisters,” Langer took a break to figure out how to manage her symptoms and put her health first. She has experimented with a number of alternative therapies to help her cope with fibromyalgia, including surfing, yoga and meditation.
In an episode of the Aches and Gains podcast with Dr. Paul Christo, Langer said, “There are different levels of learning you go through with fibromyalgia… One is I’m all alone, you know, no one else understands this pain. And then there’s a point you can get to where it becomes universal and you understand that everybody’s got something. I’ve come to terms with the fact that my body has a fragile ecosystem and I’ve gotta tend to it.”
Kirsty Young, a broadcaster on the BBC Radio 4 show “Desert Island Discs,” announced in 2018 that she would be taking a break from the position due to fibromyalgia. She explained: “Casting away some of the world’s most fascinating people is a wonderful job – however, I’m having to take some time away from Desert Island Discs as I’m suffering from a form of fibromyalgia.”
Young indicated that she hoped to spend some time healing and then return to the show.
It’s nice to know that celebrities are just like the rest of us and suffer through the same types of illnesses that we do. I commend all of these people for sharing their stories in the public eye. To them and to you, I say…
I’ve just had a new piece of writing published on the Pain News Network as a guest columnist. I wanted to write about how we grieve when we lose so much of our lives to a diagnosis of Fibromyalgia, Osteoarthritis, MS, Ehler-Danlos, Lupus and other Invisible Illnesses.
Now, I saw information about the Pain News Network on the blog of someone I follow. I looked them up and saw that they accept articles from guest writers. I contacted the Editor to see what the requirements were and he told me that basically anything to do with real life and pain, as long as it hadn’t been previously published. So I sat down, thought for a few minutes and literally banged this out. He thought it was good enough and voíla, it was done!
Here is the link, and I would love your thoughts about it in the comments below. I guess I’ll have to update my “I’ve been published” section…this is my first publication outside of The Mighty!!!
I’m so excited and I’m really damn proud of myself!
There is always hope!