Interview October – Jamie Pirtle

It’s time to meet my next guest, the lovely Jamie Pirtle. Enjoy her story!

Introduce yourself and tell us a bit about you…


I was born blind in one eye and with a condition called nystagmus, where my eyes continually move.  The doctors are not sure why, but have suspicions that it could be because my mom smoked and had mono while pregnant.  

I grew up in the south eating meat, potatoes, gravy and biscuits almost every meal. My way of eating was pretty much carbs, carbs and more carbs. A meal without a potato was pretty much a sin.

As a teen, I started to eat junk food, including diet coke and snickers for lunch and the diagnoses started coming in during my late 20’s. 

Conditions you have been diagnosed with:

  • Mitral Valve Prolapse
  • High Cholesterol
  • Arthritis (in remission)
  • IBS 
  • Lupus (in remission)
  • Ankylosing spondylitis (in remission)
  • Endometriosis (had hysterectomy)
  • Thyroid cancer (removed and now take meds)

I can remember staying in the bed all day one Mother’s Day crying because I couldn’t play with my 2-year-old daughter or go see my mom.  The pain and unpredictable bowel movements were just too much.  

I didn’t get to take vacation from work because I used all my time off going to specialist and staying home sick.

I can’t wait to hear about YOUR progress!

At about age 49, I started following a health coach on Facebook and listening to him talk about how what we eat results in autoimmune diseases.  This coupled with returning from a cruise so sick I missed another week of work, I decided I had to do something 

I first went gluten free and started eliminating junk food and diet cokes. Next, I cut out all aspartame, high fructose corn syrup and most fried foods. This helped, but there was still something missing. 

Then I was diagnosed with thyroid cancer. When you hear these dreaded words, your world stops.  I remember sitting in the parking lot of the doctor’s office talking to my husband on the phone and saying, I have to figure out what is causing this. 

I started studying everything I could get my hands on and decided the only way to go was to eat whole, mostly organic foods. I also cut out as many carbs as I could and cut way back on sugar. 

After improving my lifestyle, I feel SO much better in my 50’s than I ever did in my 30’s and 40’s. I went from taking 9, yes NINE daily prescriptions to just ONE (my necessary thyroid medicine) and eliminated the pain associated with several autoimmune diseases.

One fascinating fact about me is:

I went back to school at age 53 and became a certified health coach so I can help others get healthy and not have to live in pain like I did.  I also beat cancer and plan to stay cancer free! 

My symptoms/condition began…

In my late 20’s. (born with the eyes) 

My diagnosis process was… 

Long and tedious. The doctors just kept telling me I was too stressed at work and I needed to learn to relax. I also knew something was wrong with my thyroid and it took almost 2 years for doctors to finally find the cancer after I insisted on a sonogram and biopsy. 

The hardest part of living with my illness/disabilities is…

People think I am ignoring them when I cannot see them out of my bad eye or they think I’m drunk or high as my eyes move. When I was in school the teachers thought I was day dreaming because it was easier for me to focus on them by turning my head and creating a null point that made my eyes stop moving. It is also hard to do fun activities like bowling due to some joint pain from time to time. 

A typical day for me involves…

Eating healthy and making sure I drink lots of water, take my supplements, use essential oils and remember the food makes a HUGE difference in how I feel. I work a demanding manager job with a large aero defense company and have a side gig as a heath coach and blogger. 

The one thing I cannot live without is…

My glasses for sure!  But also, healthy foods and supplements – I take lots of supplements. 

Being ill/disabled has taught me…

That life is precious and we really are what we eat.  I have also learned not to push myself and to try to destress as much as possible. 

My support system is…

My husband, family and friends.  I have also found joy now in my health coaching clients.  It is such a great feeling to see them losing weight and regaining energy. 

If I had one day symptom/disability-free I would…

Go watch a 3D movie! They don’t work for me with my bad eyes.  

One positive of having a chronic illness/disability is…

It has made me strong and made me a lifelong learner.  I can no longer rely on others to make medical decisions for me and research everything a doctor tells me. 

One final thing I want people to know is:

Food is a HUGE factor in your health and how you feel. Unfortunately, many doctors want to give you a pill and not educate you on the importance of good nutrition. 

My links are: 

Healthywithjamie.com

https://m.facebook.com/healthywithjamie/

https://www.instagram.com/healthywithjamie1/

https://www.facebook.com/groups/2109386845847472/?ref=share

https://www.linkedin.com/in/jamiehyatt1

Free recipe book with 23 gluten free and Keto friendly healthy recipes: 

https://healthywithjamie.com/free-recipe-book/#

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Interview October – Jenny Jones

I’m delighted to introduce my next guest to you. This is Jenny Jones and here is her story:

Introduce yourself and tell us a bit about you…

I’m Jenny and I share my story of rare disease and chronic illness on my blog Life’s a Polyp. I have a Master’s in Social Work and provide behavioural health services to dialysis patients. 

One fascinating fact about me is:

 I started a research fund through National Organization for Rare Disorders (NORD) for the rare disease of Familial Adenomatous Polyposis (FAP). Life’s a Polyp shop has several designs across a variety of merchandise that helps to raise awareness of rare disease but also supports the FAP Research Fund through NORD.

Chronic illness(es)/disabilities I have…

I have two rare diseases – Familial Adenomatous Polyposis (FAP) and Short Bowel Syndrome (SBS). FAP is a hereditary, rare disease that causes 100s to 1000s of pre-cancerous polyps to develop in the colon as well as extracolonic manifestations. SBS results when too much of the colon and even the small intestine is damaged or removed resulting in malabsorption of nutrients and fluids that is often complicated by severe diarrhea and dehydration.

My symptoms/condition began…

FAP is a genetic disease that I was born with but I also developed Short Bowel Syndrome due to my colon and part of my small intestine being removed as part of my treatment for FAP.

My diagnosis process was… 

I was diagnosed when I was about 8 years old after having stomach pain from a pre-ulcerous condition which led my GI doctor to complete genetic testing due to my family history of FAP. It was difficult to obtain a referral to a GI doctor as my PCP told my parents I was “just a whiny child” and nothing was wrong with me.

The hardest part of living with my illness/disabilities is…

Never knowing what the day will be like or what the future will be. Working to be able to support myself is my primary goal in life and the best physical health years of my life are behind me now. I am terrified of the day that I will no longer be able to work and support myself. 

A typical day for me involves…

I work full time – 5 days a week but after work and on the weekends I require a lot of resting time to recuperate from the work week so that I may work the next week. Sometimes I enjoy outings with friends and family but I have to balance all of my activities with rest periods in order to continue functioning.

The one thing I cannot live without is…

My parents – they are my foundation and support in life. They help keep me going while providing assistance as needed to care for myself. I would be lost without them. 

Being ill/disabled has taught me…

 The importance of taking physical and emotional care of myself and advocating for myself so that I may continue to maintain optimal functioning ability.

My support system is…

My parents and a few select friends make up my support system. I also receive encouragement from online groups for FAP and SBS.

If I had one day symptom/disability-free I would…

Probably spend the day engaging in all the activities I typically am unable to complete or am leery about completing due to my SBS symptoms.

One positive of having a chronic illness/disability is…

Chronic illness teaches us perseverance and empathy – both qualities that are important in caring for ourselves and understanding others.

One final thing I want people to know is: 

Chronic illness is hard to live with – both physically and psychologically. Counseling can be a key component of learning to accept and cope with chronic illness in a healthy way. It is also essential to be proactive in one’s care to ensure the best treatment possible from all medical providers.

My links are:

www.LifesaPolyp.BlogSpot.com

www.Youtube.com/LifesaPolyp

www.cafepress.com/lifesapolyp

www.facebook.com/lifesapolyp

www.twitter.com/lifesapolyp

www.instagram.com/lifesapolyp

www.pinterest.com/lifesapolyp

Interview October – Sam Moss

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.

Bone Fractures…

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…

Morning…

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.

Afternoon…

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.

Stoma…

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…

My husband

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

My links are:

Blog:  https://mymedmusings.com/

Online Support Forum:    https://www.facebook.com/groups/1074726565969551/

Pinterest: https://www.pinterest.com.au/mymedicalmusings/

FB Page: https://www.facebook.com/mymedmusings/

Twitter: https://twitter.com/My_medmusings

Interview October – Keiran Potter

It’s time to meet my next guest, the fabulous Keiran Potter! I’m excited about what he has to share!

Keiran Potter

Introduce yourself and tell us a bit about you…

Hello, my name is Keiran Potter, I am 21 years old and I am from the South West of England. I am currently studying English Literature and Creative Writing at University and hope to pursue a career as a writer if all goes to plan. But you know what they say, best laid plans of mice and men often go awry. 

One fascinating fact about me is:

Not sure how fascinating any of my facts are but I am 22 this month and still often get mistaken for a 12 year old at my local shops. Oh and I’m gay, not fascinating but definitely a fact. 

Chronic illness(es)/disabilities I have…

Celiac Disease and Various Mental Health problems but for the sake of this interview I’ll focus on the former

My symptoms/condition began…

The symptoms of Celiac were present for an awful long time before I recognised them as something that could be potentially sinister. The stomach pain, migraines and bleeding had been such a regular thing for me, that it became the norm and I failed to question it for a long time. So I’d say as long as I remember I have had the issue but it wasn’t further explored until May 2018 

My diagnosis process was… 

 I had to have blood tests and several other samples. Celiac Disease can share some symptoms with other serious conditions like intestinal cancers, so my doctor was pretty concerned. Once they came back I got referred to a specialist on a 9 month waiting list. In the interim they told me to research about Celiac Disease and cut out Gluten from my diet. They failed to tell me that by doing this it would also put other aspects of my health at risk. Such as my heart. 

When I was referred I was then asked to eat Gluten again after being gluten-free for 9 months, in order to have an upper endoscopy and biopsy of my intestines. 

So all of my symptoms got more aggressive and I was in constant pain as my body had began healing in the 9 months that I had known about my potential diagnosis 

The first biopsy was inconclusive. I had to wait another 3 months and get another one done. It was quite a hellish experience to be honest but I finally got the 100% confirmation of the disease. Which in many ways was a blessing as I finally had some answers 

The hardest part of living with my illness/disabilities is…

The constant vigilance and endless fatigue and stomach pain. Even when doing everything you should be doing. Sometimes you have issues for no apparent reason and there is literally no answer to appease your concerns or pain. 

A typical day for me involves…

 A lot of thinking ahead about the risks of everyday living. Such as eating or spending the day out of the house in an unfamiliar place. A lot of time spent on or near a toilet. University, I study English and Creative Writing. Lots of medication but thankfully a lot of laughs 

The one thing I cannot live without is…

 Not really a thing but my support system and the people who help and love me the most. I quite literally would not be alive if it wasn’t for them. 

Being ill/disabled has taught me…

To value every aspect of your life for what it is. You never know when those simple joys may be taken from you. It has also made me more appreciative of health in general. Our bodies are not as indestructible as we may like to think sometimes  

My support system is…

My Family, my mum specifically. I don’t think I would show up to half of the appointments I have if it wasn’t for her dragging me there by the ear. I’m very grateful for all the help and care she gives me 

If I had one day symptom/disability-free I would…

 Eat some Chinese food and go do something productive and just enjoy the day without the illness. I would take advantage of some of the freedoms that I feel I don’t have as much access too since my illnesses have truly taken a hold on my life

One positive of having a chronic illness/disability is…

I think one positive is how you can then use your knowledge of your own body and conditions to educate and help others. There is also a sense of community instantly when you find people who struggle with the same illnesses and experiences. It’s important that all voices are heard, so I’m glad interviews like this amplify the voices of disabled or chronically ill people. 

One final thing I want people to know is:

 Only because a person may not look ill, it doesn’t mean they are not struggling everyday to live their life as normally as possible. Always be kind to everyone you meet as even if you can’t physically see it, that person could be in pain and/ or mental strife. A smile could always brighten up their day 

My links are:

Https://KeiranCrying.com/blog

Instagram.com/keirancrying

Interview October – Melissa Temple

I’m pleased to announce that Melissa Temple is my next guest for Interview October. Let’s read what this lovely lady has to say:

Introduce yourself and tell us a bit about you… 

Hi. My name is Melissa Temple. I am 40 years old. I am a disability, fibromyalgia, chronic illness and Disney blogger. I am married and have 1 child. I had a blog called HappyFibroGirl but wanted to do more than fibro. So with my husband of 19 years we started Disabled Disney. 

Chronic illness(es)/disabilities I have…

Osteo-Arthritis, Fibromyalgia, Depression, Anxiety, Type 2 Diabetes, Asthma, Endometriosis.

My symptoms/condition began…

I had arthritis symptoms in my 20’s but wasn’t diagnosed until my 30’s. My fibro symptoms really started after having knee surgery and a hysterectomy from severe endometriosis. 

My diagnosis process was…

I went to my primary care and told her about all my pain. She said she was pretty sure I had fibromyalgia. She sent me to pain management. The pain management doctor agreed. 

The hardest part of living with my illness/disabilities is… 

Not being able to do everything I used to be able to do. I can’t hardly walk or stand anymore. I used to dance, hike, swim, and do so many physical things! I used to be a Certified Nursing Assistant (CNA) but I had to stop because I couldn’t stand anymore for long periods.

A typical day for me involves… 

Medications when I wake up..doing some posting on social media for my blog..and eating breakfast…then a nap…then more meds and some more work on my blog and lunch…then another nap…then some more work on the blog if I’m feeling up to it…then more meds and dinner….then watching tv until bed….then more meds…then bed…

The one thing I cannot live without is… 

My husband, my cell phone and my muscle relaxers. My husband is my reason to keep pushing and going, he is my light in the dark and the love of my life. My cell phone is where I do a lot of my blog stuff. It also keeps me connected to the outside world when I am very isolated at home. My muscled relaxers…if I don’t take them I can’t move. 

Being ill/disabled has taught me… 

Really enjoy everything because you may not always have it and you won’t know your about to lose it!

What advice would I give someone recently diagnosed…

Be an advocate for yourself. Yes the doctors have gone to school but you know yourself and you have to live your life…they don’t. 

My support system is…

My hubby, my daughter and all my fibro friends on Facebook and my blogger friends on Twitter.

If I had one day symptom/disability-free I would… 

I would dance, go hiking, run and jump…I would go walking around a mall….I would volunteer and be out!

One positive of having a chronic illness/disability is…

It really shows you who cares about you. 

My social media links are:

Website/blog: www.disableddisney.com

Instagram: www.instagram.com/disableddisney

Twitter: www.twitter.com/disableddisney

Pinterest: www.pinterest.com/disableddisney

Facebook: www.facebook.com/disableddisney

Interview October – Michelle Curtis

It’s time for the annual series I run on There Is Always Hope called Interview October. I have spent time asking questions about health conditions that these amazing people are living with, and their replies help bring education and hope to my readers.

Today, we’re meeting my dear friend Michelle Curtis who runs the blog site The Zebra Pit. Let’s hear her story!

Include a photograph of yourself:

Introduce yourself and tell us a bit about you…

Hello! I’m a 47 year old queer disabled woman living in greater Cincinnati. I live a housebound life due to my conditions. Though I am completely disabled by my conditions, I work from home doing freelance writing and managing two websites. Lately, I’ve been working on reviving my creative writing career as a poet and fiction writer, as I’ve managed to improve my cognitive deficits enough to go back to writing and editing some shorter works.

I have been happily married for over 13 years and have a grown stepson whom I love very much, but get to see very little. I am an avid fan of the arts (both high brow and pop), music and nature and consider myself a lifelong learner. I am a huge fan of sci-fi and fantasy, love to learn about astronomy, archeology and science, and spent much of my life protesting the abuse of marginalized peoples and our planet.

I hold a BA in women, gender and sexuality studies with minors in ethnic studies and creative writing and a master of fine arts degree in creative writing. Prior to becoming disabled by my conditions, I worked as everything from a cab driver to a college instructor and have experience in the fields of education, communications, business administration, human resources, healthcare and non-profits, not to mention my illustrious career in retail and banking prior to going to college. 

One fascinating fact about me is:

This is always a hard question for me. I think all people are fascinating when you get to know them. I guess the thing that people are usually fascinated the most with is that almost nothing about me is considered conventional: I have disabling genetic disorders, I am neurodivergent, atheist yet spiritual, pansexual and feminist.

Chronic illness(es)/disabilities I have…

I am what is known as a Trifecta Zebra, as I have a trio of rare illnesses that are often seen together; Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS). I also have gastroparesis, IBS, Fibromyalgia, ME/CFS, Dystonia, cognitive dysfunction with significant memory loss (both long and short term), coronary arterial spasm,  degenerative disc disease, osteoarthritis, CRPS in my right leg, endometriosis, and intractable migraine. I strongly suspect and am seeking diagnosis for chairi and/or craniocervical instability and autism. 

My symptoms/condition began…

As a child, though my symptoms wouldn’t become really apparent until early adulthood.  

My diagnosis process was… 

Fraught with misdiagnoses and errors. Despite my many health problems which I reported to every doctor, I was not diagnosed with EDS until I was almost 45. I was first diagnosed with fibromyalgia around age 40 and CSF a couple of years later. A couple of years after that, I was diagnosed with POTS. I had to find EDS and MCAS, figure out that I had them and then find doctors to diagnose and begin treating them. 

The hardest part of living with my illness/disabilities is…

The cognitive dysfunction. I had developmental delays as a child and everyone thought I was just plain stupid and wouldn’t do much in life. I had terrible self-esteem and no faith in my abilities. I didn’t figure out I was probably pretty smart until my mid-twenties and finally went to college because I simply couldn’t manage doing the only sorts of jobs I could get, those with a high level of physical labor.

I spent years working toward a career I thought would save me and that I loved more than I could ever imagine allowing myself to love anything. By the time I was done, I no longer had the cognitive ability left to actually do the work I’d been trained for, even if I could find ways to accommodate my deteriorating tissues.

I’m glad I’ve found new things to consume my life with and I can’t say I regret the journey. But the knowledge that I could have had a brilliant career had I the capacity to go on is sometimes too much psychic pain to bear. These days I try very hard to focus on what I can accomplish and find focusing on the present helps me to avoid these hard truths.

A typical day for me involves…

I like to say I live on tilt, because I quite literally have to. If I spend too much time in the upright position, I suffer terrible pain and cognitive symptoms and sometimes have seizures. If I’m flat on my back, I develop pain in the back of my head. So I spend much of my day tilted back in a recliner, working on my blogs and writing, trying to avoid the pain caused by being completely upright or completely prone.

Most of my time spent upright is to cook (I cannot tolerate processed foods at all), do therapies and keep up my movement routines of recumbent bike riding and strengthening exercises. In the evening, I try to relax in front of the TV or with a good book. 

 The one thing I cannot live without is…

Myofascial therapy! I’d be in so much pain if not for it!

Being ill/disabled has taught me…

Never to judge other people’s lives or make assumptions about why someone does something.

My support system is…

My husband is my primary source of support, but we both have chronic health conditions so things can get pretty hairy from time to time, but we usually manage! The remainder of my support comes from within the chronic illness/spoonie community.

I know there are any number of people I can turn to for emotional support or needed advice regarding my health and wellness. I would be lost without them, as I have few others in my life.

If I had one day symptom/disability-free I would…

It would be a lot like Ferris Buehler’s Day Off without the teen angst! A great deal of sightseeing, dancing and celebrating of life, topped off by an exciting and romantic evening of a show, an amazing dinner, more dancing and a carriage ride around Fountain Square. 

One positive of having a chronic illness/disability is…

It’s made me take responsibility for my mental health and taught me what real support looks like, allowing me to walk away from all the toxic people in my life.

One final thing I want people to know is: 

No matter how bad things get, there’s always the possibility that things will get better, as long as you keep fighting. I spent years so inundated by symptoms and disabled by my health that I could no longer see the point of living. I nearly took my own life.

I’m so glad I managed to pull myself out of that deep depression, because it turns out I have quite a lot of life left in me. How did I succeed? I started saying yes to anything that I thought could help, searching exhaustively for solutions. It worked! I found my correct diagnoses and ways to treat my pain and symptoms that affords me a life I can live with.

Now I also have some joy and a sense of my own strength. I may not have beat chronic illness, but I am doing a pretty good job of not letting it defeat me and helping others to also find things to help them.

My links are:

https://zebrapit.com a health and wellness site for spoonies and zebras

https://mykiewritesit.blog a site to display my writing services, poetry and short stories, and discuss writing and blogging strategies and techniques.

7 Conditions That Can Mimic Fibromyalgia (And Getting The Right Diagnosis)

Fibromyalgia is a condition that consists of widespread muscle pain, cognitive failures and fatigue. Because there is no standard blood test or other medical test to identify Fibro, doctors rely on Patient stories and history to make a determination, along with using the “tender point” test.

When you have Fibromyalgia, there are particular tender points that may be inflamed in 18 areas of your body. If you have pain in 11 of these areas, you are considered to have Fibromyalgia.

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What happens if you are experiencing symptoms of Fibromyalgia but you DON’T have the tender points? It could be that something else is going on in your body that isn’t Fibro but is a different condition all together.

Here are some of the conditions that can mimic Fibro and a brief description of what each of them are:

Conditions

1. Multiple Sclerosis

MS is currently classified as an autoimmune disease of the central nervous system (brain, spinal cord). The disease attacks myelin, the protective covering of the nerves, causing inflammation and often damaging the myelin. Myelin is necessary for the transmission of nerve impulses through nerve fibres. If damage to myelin is slight, nerve impulses travel with minor interruptions; however, if damage is substantial and if scar tissue replaces the myelin, nerve impulses may be completely disrupted, and the nerve fibres themselves can be damaged.

MS is unpredictable and can cause symptoms such as extreme fatigue, lack of coordination, weakness, tingling, impaired sensation, vision problems, bladder problems, cognitive impairment and mood changes. Its effects can be physical, emotional and financial. Currently there is no cure, but each day researchers are learning more about what causes MS and are zeroing in on ways to prevent it.

2. Lupus

Lupus is a systemic autoimmune disease that occurs when your body’s immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart and lungs.

The signs and symptoms of lupus that you experience will depend on which body systems are affected by the disease. The most common signs and symptoms include:

  • Fatigue
  • Fever
  • Joint pain, stiffness and swelling
  • Butterfly-shaped rash on the face that covers the cheeks and bridge of the nose or rashes elsewhere on the body
  • Skin lesions that appear or worsen with sun exposure (photosensitivity)
  • Fingers and toes that turn white or blue when exposed to cold or during stressful periods (Raynaud’s phenomenon)
  • Shortness of breath
  • Chest pain
  • Dry eyes
  • Headaches, confusion and memory loss

3. Arthritis

Arthritis is the swelling and tenderness of one or more of your joints. The main symptoms of arthritis are joint pain and stiffness, which typically worsen with age. The most common types of arthritis are osteoarthritis and rheumatoid arthritis.

Osteoarthritis causes cartilage — the hard, slippery tissue that covers the ends of bones where they form a joint — to break down. Rheumatoid arthritis is a disease in which the immune system attacks the joints, beginning with the lining of joints.

Uric acid crystals, which form when there’s too much uric acid in your blood, can cause gout. Infections or underlying disease, such as psoriasis or lupus, can cause other types of arthritis.

The most common signs and symptoms of arthritis involve the joints. Depending on the type of arthritis you have, your signs and symptoms may include:

  • Pain
  • Stiffness
  • Swelling
  • Redness
  • Decreased range of motion

4. Complex Regional Pain Syndrome

Complex regional pain syndrome (CRPS) is a chronic (lasting greater than six months) pain condition that most often affects one limb (arm, leg, hand, or foot) usually after an injury.  CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems.

The central nervous system is composed of the brain and spinal cord; the peripheral nervous system involves nerve signaling from the brain and spinal cord to the rest of the body.  CRPS is characterized by prolonged or excessive pain and changes in skin color, temperature, and/or swelling in the affected area.

The key symptom is prolonged severe pain that may be constant.  It has been described as “burning,” “pins and needles” sensation, or as if someone were squeezing the affected limb.  The pain may spread to the entire arm or leg, even though the injury might have only involved a finger or toe. In rare cases, pain can sometimes even travel to the opposite extremity.  There is often increased sensitivity in the affected area, known as allodynia, in which normal contact with the skin is experienced as very painful.

People with CRPS also experience changes in skin temperature, skin color, or swelling of the affected limb.  This is due to abnormal microcirculation caused by damage to the nerves controlling blood flow and temperature.  As a result, an affected arm or leg may feel warmer or cooler compared to the opposite limb.  The skin on the affected limb may change color, becoming blotchy, blue, purple, pale, or red.

Other common features of CRPS include:

  • changes in skin texture on the affected area; it may appear shiny and thin
  • abnormal sweating pattern in the affected area or surrounding areas
  • changes in nail and hair growth patterns
  • stiffness in affected joints
  • problems coordinating muscle movement, with decreased ability to move the affected body part
  • abnormal movement in the affected limb, most often fixed abnormal posture (called dystonia) but also tremors in or jerking of the limb.

5. Depression

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Depression is a mood disorder that causes a persistent feeling of sadness and loss of interest. Also called major depressive disorder or clinical depression, it affects how you feel, think and behave and can lead to a variety of emotional and physical problems. You may have trouble doing normal day-to-day activities, and sometimes you may feel as if life isn’t worth living.

More than just a bout of the blues, depression isn’t a weakness and you can’t simply “snap out” of it. Depression may require long-term treatment. But don’t get discouraged. Most people with depression feel better with medication, psychotherapy or both. Although depression may occur only once during your life, people typically have multiple episodes. During these episodes, symptoms occur most of the day, nearly every day and may include:

  • Feelings of sadness, tearfulness, emptiness or hopelessness
  • Angry outbursts, irritability or frustration, even over small matters
  • Loss of interest or pleasure in most or all normal activities, such as sex, hobbies or sports
  • Sleep disturbances, including insomnia or sleeping too much
  • Tiredness and lack of energy, so even small tasks take extra effort
  • Reduced appetite and weight loss or increased cravings for food and weight gain
  • Anxiety, agitation or restlessness
  • Slowed thinking, speaking or body movements
  • Feelings of worthlessness or guilt, fixating on past failures or self-blame
  • Trouble thinking, concentrating, making decisions and remembering things
  • Frequent or recurrent thoughts of death, suicidal thoughts, suicide attempts or suicide
  • Unexplained physical problems, such as back pain or headaches

6. Lymphoma

Lymphoma is cancer that begins in infection-fighting cells of the immune system, called lymphocytes. These cells are in the lymph nodes, spleen, thymus, bone marrow, and other parts of the body. When you have lymphoma, lymphocytes change and grow out of control.

There are two main types of lymphoma:

  • Non-Hodgkin: Most people with lymphoma have this type.
  • Hodgkin

Non-Hodgkin and Hodgkin lymphoma involve different types of lymphocyte cells. Every type of lymphoma grows at a different rate and responds differently to treatment.

Warning signs of lymphoma include:

  • Swollen glands (lymph nodes), often in the neck, armpit, or groin that are painless
  • Cough
  • Shortness of breath
  • Fever
  • Night sweats
  • Fatigue
  • Weight loss
  • Itching

7. Growing Pains

Growing pains are recurring pain symptoms that are relatively common in children ages 3 to 12. The pains normally appear at night and affect the calf or thigh muscles of both legs. The pain stops on its own before morning. Growing pains are one of the most common causes of recurring pain in children.

Growing pains usually cause an aching or throbbing feeling in the legs. This pain often occurs in the front of the thighs, the calves or behind the knees. Usually both legs hurt. Some children may also experience abdominal pain or headaches during episodes of growing pains. The pain doesn’t occur every day. It comes and goes.

Growing pains often strike in the late afternoon or early evening and disappear by morning. Sometimes the pain awakens a child in the middle of the night.

Consult your child’s doctor if you’re concerned about your child’s leg pain or the pain is:

  • Persistent
  • Still present in the morning
  • Severe enough to interfere with your child’s normal activities
  • Located in the joints
  • Associated with an injury
  • Accompanied by other signs or symptoms, such as swelling, redness, tenderness, fever, limping, rash, loss of appetite, weakness or fatigue

Conclusion

As you can see, there are several conditions that can mimic the symptoms of Fibromyalgia, which is why it’s important to see your doctor as soon as possible, to get the proper diagnosis. Don’t let pain linger…if something doesn’t seem right in your body, get it checked out. Remember,

There Is Always Hope

chronic pain and addictions (2)

Chronic Pain And Addictions

I want to talk about a difficult subject today…Chronic Pain and Addictions. When you live with Chronic Pain, you can find yourself spiraling in a dark hole. Sometimes depression becomes as big of a problem as the physical pain you live with, and in a desperate need to feel better, you find yourself turning to your medications too often, or you resort to drinking or eating as a way of filling the gap.

Addiction is easy to fall into, as often, you are not receiving adequate treatment for your pain to begin with. You find yourself taking your medictions sooner than directed, or you take more than recommended and then suddenly, you’re in withdrawal at the end of the month when your prescription has run out.

Instead of abusing your pain medications, you may turn to alcohol to increase the “buzz”, or food may become the drug of your choice. “Anything to dampen the pain” is what you might be thinking, and sometimes, it works. Other times, it feels like nothing can fill the unending gulf of pain you live with and so your depression deepens and you’re left feeling worthless. Thoughts of suicide may plague you but you resist telling others for fear they will see you as weak.

Let’s examine this problems in more detail.

Medications

Opioid abuse is an epidemic in the United States. In 2016, approximately 11.5 million Americans 12 years and older misused opioid pain medications, and 1.8 million had a substance use disorder involving prescription pain medications. From 2000 to 2015, more than 500,000 persons died from opioid overdoses, with deaths generally increasing as prescription opioid sales increased. In 2012, clinicians wrote 259 million prescriptions for opioids, enough for every U.S. adult.*

Chronic Pain and Addictions

There are a variety of medications that are used in the treatment of Chronic Pain. As you probably know, there is a current push from to cut back on Opioids like Oxycodone and Hydrocodone because of perceived over-prescribing and the number of deaths linked to the mis-use of Opioids. The number of deaths from illegal Fentynal overdoses has increased dramatically, yet the people who actually require the drug for their Chronic Pain are being turned away by their physicians or are having their dosages cut back significantly.

PreGabalin, Gabapentin, and mixed drugs like Tramacet (Tramadol and Acetaminophen) are now being used more frequently, but not always to great benefit. This is one of the reasons the use of illegal Fentynal is increasing – people aren’t getting adequate relief from their doctor-prescribed medications and so they’re looking to the streets for solutions.

Alcohol

Throughout the ages, people have used alcohol to manage their pain. A swig of whiskey after a bullet wound in the old Westerns, or to numb the pain of a teething baby are two minor examples. A study done recently showed that 28% of people with Chronic Pain used alcohol to help control their pain**

Chronic Pain and Addictions

Although alcohol has been shown to reduce pain, it’s a temporary solution and has potential and possible fatal risks. When you drink, you are more likely to abuse your prescription medications, resulting in furthering the sedative effects of both. You also increase the possibility of liver damage or gastric bleeding. Using alcohol as a pain medication often ends up with exceeding the recommended amount that you should drink and overdose of alcohol and/or prescription medications can be fatal.

Other points to note:

  • Withdrawal from chronic alcohol use often increases pain sensitivity which could motivate some people to continue drinking or even increase their drinking to reverse withdrawal-related increases in pain.
  • Prolonged, excessive alcohol exposure generates a painful small fiber peripheral neuropathy, the most common neurologic complication associated with alcoholism.

Food

When a person is unable to control the amount of pain they live with, they may turn to food instead, as a way of finding relief. It doesn’t take away the pain, but satiating yourself gives back the illusion of that control that you’ve lost elsewhere. Anorexia and bingeing/purging become huge risks and lead to further medical problems.

Chronic Pain and Addiction

Anorexia is the elimination of food from the diet, until your calorie intake is grossly under the recommended daily allowance for health. It is a psychological and potentially life-threatening eating disorder.

There are a multitude of health risks involved including mood swings, low blood pressure, heart problems, kidney and liver issues, loss of bone density and the very real possibility of death.

Bingeing and purging causes issues such as gastric problems, dental issues from vomiting and bile wearing at the teeth and gums, dehydration and depression issues. The use of excessive laxatives is hard on your bowels and runs the risk of chronic constipation, resulting in a Catch-22 of needing to use more laxatives to alleviate the constipation.

Excessive Exercise is another form of purging. By engaging in obscene amounts of exercise, you expose yourself to potential damage to your joints from overuse, dehydration, weakness and potential heart issues.

Other Addictions

Other addictions to be careful about including smoking, gambling, shopping and sex although I’m sure you can think of even more. Each of these excessive behaviours can lead to damaging consequences so it’s imporant to be aware of them. When you live with Chronic Pain, you can have an “all or nothing” mentality – you simply want to do anything that will help you focus on something other than hurting.

What Next?

The first step to any of these issues is to accept that you have a problem. Professional help is required to allow you to wean off of the drugs or alcohol, or to start a healthy relationship with food.

Support groups are available both in person and online and are highly recommended. To be with people who have gone through the same experiences as you have can be very comforting.

A Pain Management program may be suggested to help you get to the root of your problems, and to help you find solutions to managing your pain more effectively.

Talk to your family physician to start. Now is the time to be honest about what you’ve been going through and how you’ve been coping (or not coping). Accept that seeing a counsellor on a regular basis may be a requirement for your success. Having a safe place to talk goes a long way in setting goals for yourself and achieving them.

Ask about specific books that may help you understand Chronic Pain more completely. Knowledge is power.

Finally, realize that you are not a bad person. You may have made some bad choices, but recognizing them and changing them is what’s important. We all make mistakes, and even if you think you’re the worst person in the world…you’re not. You have value and worth and are deserving of the best care possible. Remember,

There Is Always Hope

*https://www.aafp.org/afp/2018/0301/p313.html
**https://pubs.niaaa.nih.gov/publications/PainFactsheet/painFact.htm

chronic pain and addictions

5 Ways to Handle Fibromyalgia Pain and Stay Energized

I’m pleased to feature this guest post by Kunal Patel, who works with a brand called Copper Clothing.

Fibromyalgia is a disorder characterized by musculoskeletal pain all over the body. It is often accompanied by fatigue, sleep andmood issues, and cognitive concerns like memory problems. There are several ways to cope with the disorder, from having the right diet to wearing the right clothes.

The Pain of Fibromyalgia

Here are 5 practical ways to cope with fibromyalgia.

Exercise Regularly

It may seem impossible to exercise when you have fibromyalgia but it is recommended you do. Exercising will help in relieving symptoms of fibromyalgia, especially with the stiffness and restless leg syndrome.

Light exercises and yoga also help in boosting the mood, reducing fatigue, easing the pain, improving blood circulation and improving sleep. You can go for a walk, do strength training, cycling, water aerobics, and swimming.

However, if you are too fatigued, avoid exercisingthat day.

Good Sleeping Habits

The pain and stress can hinder with your ability to sleep. However, sleep is essential to manage fatigue – the biggest symptom of the disorder. 

Practice good sleep habits like:

    • Reduce the noises and intensity of lights in the bedroom
    • Use light and comfortable bed linens like a copper bedsheet
  • Avoid alcohol, caffeine, and smoking
  • Sleep and wake up at the same time
  • Adopt bedtime rituals like taking a soothing bath or journaling before bedtime

Proper Diet

10 Mental Health Habits to Try This 2019 - Eat Well

Your fibromyalgia diet must include lots of vegetables, fruits, dairy, whole grains, and lean meats. This will improve the overall health, lower weight and energize you. Eliminating sugar, foods containing food additives like MSG, and aspartame will be beneficial.

Wear the Right Clothes

Clothing choices can make a huge difference in managing daily pain and fatigue that comes with fibromyalgia. Those suffering from fibromyalgia suffer from a condition where even the slightest touch can be quite painful. Wearing loose-fitting, non-constricting and lightweight clothing is recommended.

Copper compression clothing is also used to treat fibromyalgia pain and stiffness.This disorder can affect any muscle in the body, however, it is most common in extremities like hands and fingers. Copper compression gloves provide fibromyalgia hand pain relief due to their properties. They fight inflammation, retain warmth, improve blood flow and restore movement in the hand.

Choose cotton or copper socks as they don’t have chemicals, wick away sweat and fight odors. The latter also help in reducing pain in the legs and feet.

Stay Positive

There Is Always Hope

Living with pain and overcoming fatigue is not easy and it can get exhausting. Your mind may play tricks on you and be stuck in a loop that you are not accomplishing anything. However, it will do you no good to ruminate on those things. It is essential that you stay positive.

Do not focus on the things that fibromyalgia is preventing you from doing as it will make you feel worse. It is alright to have a bad day– just focus on getting through each day and celebrate little victories.

Consult with your doctor about the best pain management techniques. Take one day at a time and this disorder can become a lot more bearable.

Author Bio –

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Kunal Patel is a young and passionate entrepreneur, fascinated by the workings of the human body and natural solutions for common health problems. He’s single-minded in his aim to make Copper Defence a brand that’s recognized across the globe, by partnering with global brands to make these high-tech materials easily accessible for everyone.

It’s Okay To Be Angry About Chronic Illness (I Am!)

Note: This post contains Affiliate Links which pay me a small percentage of your purchase price at no cost to you.

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Image by Free-Photos from Pixabay

The Beginning

I want to tackle a hard subject today…the emotions that surround living with a Chronic Illness. Every day, we survive the physical pain, but we don’t always talk about the emotional pain that comes with being ill. Let’s change that now. 

When I first started feeling the effects of Fibromyalgia and Osteoarthritis along with my other Chronic Illnesses, I was generally able to function without a lot of changes in my life. I needed some pain medication but found that it helped and didn’t really alter my life, so ended up having some fairly easy years after my initial diagnosis. 

After a period of time, the medication needed to be increased and new drugs had to be introduced to help combat the increasing pain and symptoms. I started taking Lyrica for my Fibro  – a drug that saw me gain 40lbs in 3 months. This is when I first realized that having Chronic Illness was affecting me mentally – I was pissed about the weight gain but resigned to the fact I’d have to live with it. Thankfully my doctor worked with me to find Cymbalta instead and I managed to lose most of the weight I had gained. 

Thus began a pattern where the drugs would work for a while and then lose their effectiveness, necessitating an increase or change in meds, which triggered more anger and emotion. It was a vicious circle…I just wanted to be rid of the pain I was in, but it was getting harder and harder. The side effects of the various meds being introduced were also debilitating and my anger grew at what my body was putting me through. 

As Things Changed

Then came the point where my body had become so broken down that I needed to leave my job and go on long term disability. I can still remember to this day, 10 years later, how incredibly disappointed in myself I was. My body had betrayed me in every way possible. I was at the top of my career with the opportunity to move into some dream roles and suddenly that was all snatched away from me. Devastated doesn’t even begin to come close to how I felt and I ended up in a depression that was hard to come back from. 

It took me a long time to realize that my feelings were valid and I was entitled to feel how I felt. I thought I had to suck it up for everyone around me, and that just wasn’t a place I was ready for. I hadn’t processed my emotions, and they felt just as raw a year later as they had when I first left work. It was only through taking some Cognitive Behaviour Therapy (CBT) classes that I started to see how I could validate my feelings yet work through them and come out stronger. 

Having these strong emotions was scary though because I couldn’t separate them at first from the actions of being in pain, and just feeling like a failure as a person. It took time to realize that I had not failed, but my body had. Two very different things. By recognizing the difference, I was able to start accepting that I was not a bad person and that I had done nothing to cause this to happen.

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Image by Sarah Lötscher from Pixabay 

It’s Not Your Fault

I didn’t ask for Chronic Pain and Chronic Fatigue. I was simply unlucky enough to be a person to have to live with these conditions and that meant I had to find a healthier way of dealing with the emotions this generated. I was not unreliable, my health caused my reliability to suffer. My worth was not just because of my job, but by virtue of simply being here. I was still a good person who had something bad happen to her. 

Do you see where I’m coming from and what I’m trying to say? Just because you have a Chronic Illness doesn’t make you a bad person. This condition has happened to you and changed you, against your will. Learning how to live with it becomes the new normal. Once I recognized this, I was able to take a step back and start taking my life back again. 

Making Changes

I worked with my doctor to find a treatment plan that benefited me. This included some medication changes and additions, as well as adding healthy new components to my life such as meditation, music therapy, gentle exercise, stretching, beginners yoga and balancing my eating habits. I stopped feeling guilty when I had to cancel or change plans because Illness took over. I couldn’t help it when those things happened, so why blame myself? I put the blame where it belonged…on my Illnesses, and left it there. 

I was blessed to be able to start this blog, so I could reach out to others with Chronic Pain conditions and help them navigate their way through their experiences. It was very empowering for me and I gained back huge amounts of confidence as I wrote articles and posts. Knowing I was reaching others and actually helping them was a huge confidence booster. 

I also found myself able to start volunteering again, and now sit on 4 different committees, all devoted to aspects of health care. I am a member of a Provincial Measurement Working Group, creating a survey for patients in BC, Canada about their ER experiences. I continue to seek out new opportunities to volunteer and was recently nominated for two WEGO Health Awards – one for Best in Show: Blog and one for Best Kept Secret (regarding my blog). You can click here for more information about my nominations. 

To wrap this up, I want to reiterate that I think it’s important to sit with your feelings on a regular basis when you live with Chronic Illness. If you need the help of a professional therapist to process what you’re going through, do it. There’s no shame and definitely no harm in learning how to deal with all the emotions that come with a Chronic condition. In fact, I highly recommend it as a part of your overall treatment plan. 

We go through so much on a daily basis that the notion we’re not affected emotionally is ludicrous. Don’t fall into the trap of being “stoic” and taking the attitude that you can handle things on your own if you truly can’t. Reach out for help, whether it be a professional, a friend, or a spiritual advisor. The peace of mind of knowing you’re not alone in your feelings is precious. And remember…

There Is Always Hope