IBS and Bowel Health with Fibromyalgia

This post was previously published on The Zebra Pit

Fibromyalgia is a multi-faceted disease that affects far more than just your muscles. One of the common conditions that Fibromites experience is problems with their bowels. IBS or Irritable Bowel Syndrome can be a stand alone disease, but is often found in those with Fibromyalgia.

Symptoms

When you have IBS, you can experience some or all of the following symptoms:

  • Abdominal pain and cramping that is typically relieved or partially relieved by passing a bowel movement
  • Excess gas
  • Diarrhea or constipation — sometimes alternating between the two and occaisionally having both happen during the same bowel movement
  • Mucus in the stool
  • Bloating
  • Nausea
  • Back Pain (due to cramping)

The GI Society of Canada says the following:

“Symptoms occurring outside of the digestive tract that might be related to IBS include sleep disturbances, chronic pelvic pain, interstitial cystitis, temporomandibular joint disorder, post-traumatic stress disorder, and migraine headaches. Female patients who have IBS have also reported discomfort during sexual intercourse (dyspareunia). Our survey of 2,961 respondents showed 32% have some form of mood disorder, 27% have gastroesophageal reflux disease, and 27% have anxiety disorder.”

Common IBS Symptoms Graphic

It’s important to seek medical care when you experience bowel issues, to ensure that nothing more serious is going on. Don’t let embarrassment stop you. If you are experiencing any of the following, call and make an appointment:

  • Weight loss
  • Diarrhea at night
  • Rectal bleeding
  • Iron deficiency anemia
  • Unexplained vomiting
  • Difficulty swallowing
  • Persistent pain that isn’t relieved by passing gas or a bowel movement

Seeing The Doctor

When you seek medical care for your IBS symptoms, the following actions may occur:

Medical History: A physician reviews the patient’s medical history, considering bowel function pattern, the nature and onset of symptoms, the presence or absence of other symptoms, and warning signs that might indicate some other diagnosis.

Physical Examination: During a physical evaluation, the bowel may have involuntary jerky muscular contractions (spastic) and seem tender; although the patient’s physical health usually appears normal in other respects.

Investigative Testing: A physician might request tests to rule out other possible diseases. In performing a scope, physicians view the intestinal tract with an instrument that enters the body via the mouth (gastroscopy) or the anus (colonoscopy/sigmoidoscopy). The scope is made of a hollow, flexible tube with a tiny light and video camera.

Doctor Writing Notes

The physician may also request routine blood and stool tests to rule out known organic diseases. Some symptoms of celiac disease overlap those of IBS, so a family history of this disease might be a reason to test for it.

After other conditions have been ruled out, your doctor is likely to use one of these sets of diagnostic criteria for IBS:

  • Rome criteria. These criteria include abdominal pain and discomfort lasting on average at least one day a week in the last three months, associated with at least two of these factors: Pain and discomfort are related to defecation, the frequency of defecation is altered, or stool consistency is altered.
  • Manning criteria. These criteria focus on pain relieved by passing stool and on having incomplete bowel movements, mucus in the stool and changes in stool consistency. The more symptoms you have, the greater the likelihood of IBS.
  • Type of IBS. For the purpose of treatment, IBS can be divided into three types, based on your symptoms: constipation-predominant, diarrhea-predominant or mixed.

Treatment

Treatment of IBS focuses on relieving symptoms so that you can live as normally as possible. These suggestions below come from The Mayo Clinic:

Mild signs and symptoms can often be controlled by managing stress and by making changes in your diet and lifestyle. Try to:

  • Avoid foods that trigger your symptoms
  • Eat high-fiber foods
  • Drink plenty of fluids
  • Exercise regularly
  • Get enough sleep

Your doctor might suggest that you eliminate from your diet:

  • High-gas foods. If you experience bloating or gas, you might avoid items such as carbonated and alcoholic beverages, caffeine, raw fruit, and certain vegetables, such as cabbage, broccoli and cauliflower.
  • Gluten. Research shows that some people with IBS report improvement in diarrhea symptoms if they stop eating gluten (wheat, barley and rye) even if they don’t have celiac disease.
  • FODMAPs. Some people are sensitive to certain carbohydrates such as fructose, fructans, lactose and others, known as FODMAPs — fermentable oligo-, di-, and monosaccharides and polyols. FODMAPs are found in certain grains, vegetables, fruits and dairy products. Your IBS symptoms might ease if you follow a strict low-FODMAP diet and then reintroduce foods one at a time.

A dietitian can help you with these diet changes.

If your problems are moderate or severe, your doctor might suggest counseling — especially if you have depression or if stress tends to worsen your symptoms.

In addition, based on your symptoms your doctor might suggest medications such as:

  • Fiber supplements. Taking a supplement such as psyllium (Metamucil) with fluids may help control constipation.
  • Laxatives. If fiber doesn’t help symptoms, your doctor may prescribe magnesium hydroxide oral (Phillips’ Milk of Magnesia) or polyethylene glycol (Miralax).
  • Anti-diarrheal medications. Over-the-counter medications, such as loperamide (Imodium), can help control diarrhea. Your doctor might also prescribe a bile acid binder, such as cholestyramine (Prevalite), colestipol (Colestid) or colesevelam (Welchol). Bile acid binders can cause bloating.
  • Anticholinergic medications. Medications such as dicyclomine (Bentyl) can help relieve painful bowel spasms. They are sometimes prescribed for people who have bouts of diarrhea. These medications are generally safe but can cause constipation, dry mouth and blurred vision.
  • Tricyclic antidepressants. This type of medication can help relieve depression as well as inhibit the activity of neurons that control the intestines to help reduce pain. If you have diarrhea and abdominal pain without depression, your doctor may suggest a lower than normal dose of imipramine (Tofranil), desipramine (Norpramine) or nortriptyline (Pamelor). Side effects — which might be reduced if you take the medication at bedtime — can include drowsiness, blurred vision, dizziness and dry mouth.
  • SSRI antidepressants. Selective serotonin reuptake inhibitor (SSRI) antidepressants, such as fluoxetine (Prozac, Sarafem) or paroxetine (Paxil), may help if you’re depressed and have pain and constipation.
  • Pain medications. Pregabalin (Lyrica) or gabapentin (Neurontin) might ease severe pain or bloating.

Medications specifically for IBS

Medications approved for certain people with IBS include:

  • Alosetron (Lotronex). Alosetron is designed to relax the colon and slow the movement of waste through the lower bowel. Alosetron can be prescribed only by doctors enrolled in a special program, is intended for severe cases of diarrhea-predominant IBS in women who haven’t responded to other treatments, and isn’t approved for use by men. It has been linked to rare but important side effects, so it should only be considered when other treatments aren’t successful.
  • Eluxadoline (Viberzi). Eluxadoline can ease diarrhea by reducing muscle contractions and fluid secretion in the intestine, and increasing muscle tone in the rectum. Side effects can include nausea, abdominal pain and mild constipation. Eluxadoline has also been associated with pancreatitis, which can be serious and more common in certain individuals.
  • Rifaximin (Xifaxan). This antibiotic can decrease bacterial overgrowth and diarrhea.
  • Lubiprostone (Amitiza). Lubiprostone can increase fluid secretion in your small intestine to help with the passage of stool. It’s approved for women who have IBS with constipation, and is generally prescribed only for women with severe symptoms that haven’t responded to other treatments.
  • Linaclotide (Linzess). Linaclotide also can increase fluid secretion in your small intestine to help you pass stool. Linaclotide can cause diarrhea, but taking the medication 30 to 60 minutes before eating might help.

Potential Future Treatments

Researchers are investigating new treatments for IBS. Serum-derived bovine immunoglobulin/protein isolate (SBI), a nutritional therapy, has shown some promise as a treatment for IBS with diarrhea.

Studies also show that, in people who have IBS with diarrhea, a specially coated tablet that slowly releases peppermint oil in the small intestine (enteric-coated peppermint oil) eases bloating, urgency, abdominal pain and pain while passing stool. It isn’t clear how enteric-coated peppermint oil might affect IBS, so ask your doctor before using it.

Conclusion

Although Bowel related issues can be embarrassing, it’s important to acknowledge and treat your symptoms to give you the best health possible. Make time to reduce stress in your life, follow a proper diet and get a good nights sleep…these three things can make a huge difference in your gut health. If nothing changes, see your doctor. Your good health depends on it.

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Positive Things About Chronic Illness

Living With Chronic Illness

Note: This post contains affiliate links. I will receive a small percentage from the total purchase price at no extra cost to you.

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.

Moments

Pets

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)

Dorie my cat, sitting on my legs, and bringing comfort from Chronic Pain

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.

Books

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!

You can also follow Jenny on her blog site, The Bloggess

Music

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.

Videos/TV/Movies

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.

Hobbies

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!

Conclusion

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,

There Is Always Hope

Interview October – Elisa Austin

Today we meet my final guest for Interview October, the wonderful Elisa Austin. Please join me in welcoming her!

Introduce yourself and tell us a bit about you…

I am a 50 year old, mother of eight and grandmother. I’m a photographer and writer.

One fascinating fact about me is:

I am still existing. 

Chronic illness(es)/disabilities I have… 

I have underactive thyroid (Hashimoto’s), Fibromyalgia, and IBS

My symptoms/condition began…

The thyroid condition was diagnosed in 1999 because I was just “off” and “dragging.” Fibromyalgia was diagnosed in 2004 although I believe symptoms began earlier.

My diagnosis process was… 

My doctor ruled out most things with blood tests and sent me to a rheumatologist. The rheumatologist ruled out RA and by process of elimination Fibromyalgia was diagnosed.

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

Knowing there is no cure and I will have to deal with the pain every day for the rest of my life.

A typical day for me involves…

Medication, necessary appointments or activities, and with luck some housework.

The one thing I cannot live without is…

It rotates through warm baths, heating pads, aromatherapy, family, exercise

Being ill/disabled has taught me…

That I’m stronger and more determined than I had originally thought. 

My support system is…

My family and an online group

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

I don’t even know. I no longer make plans or have dreams.

One positive of having a chronic illness/disability is…

I am more supportive of others

One final thing I want people to know is: 

I refuse to give up.

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/#

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.

Why I Blog (About Fibromyalgia, Chronic Pain and Invisible Illness)

I have been blogging for a couple of years now and recently someone asked me “why do you blog? What do you get out of it?”

It was a good question, so I thought I’d write a post about my reasons for blogging and what I hope to achieve with this blog site

thought-2123971_640
Image by TeroVesalainen from Pixabay

Education

When I first started to blog, I wrote about my total hip replacement because I’d had problems trying to find first-person accounts of undergoing that particular type of surgery, especially for someone who was in their 50’s. Hip replacements seem to be done on mostly older folks (in their 70’s or older) but rarely on the younger set, unless you’ve been born with a hip problem or have suffered a devastating injury. 

Because I was only 54 when I had my hip replacement done, I was considered “unusual” by my surgeon (and yes, I’m sure he meant my hip only and not me in general!) so trying to find others in the same position was difficult. I had read enough websites to understand the technical side of the surgery, but I wanted to find out what it was like to actually have the surgery and then recuperate and go on with life. 

Since I was unable to find a lot of good information, I decided to write about my own experiences, so others in my position might be able to find what I was looking for. Once I’d written about that, it seemed natural to go on and talk about other health issues I live with and how they impact my life. From there, the blog site grew organically and became what it is now – a place for articles and posts about Fibromyalgia, Chronic Pain, Chronic Fatigue and Invisible Illnesses, such as Lupus, MS, Arthritis, POTs, Ehler’s Danlos Syndrome and more. 

The goal has been achieved and I’m proud of what I’ve been able to create with this site. I hope others feel the same. 

Compassion

Living with a Chronic Illness is hard work. People with Chronic Pain and Invisible Illness are often left feeling isolated, and when you find someone online who speaks your language, it can be like finding an oasis in the desert. 

In addition to educating people, I wanted this blog site to be a place where comments could be left freely, allowing people the opportunity to share what’s going on in their lives in a safe way. When readers have identified with a particular post, their comments reflect their own lives and situations and I take that seriously. I often respond back, not always in the comment section, but in-person to what they’ve said.

My responsibility as a writer is to ensure that not only am I educating people but I’m giving them some hope as well. Life with Chronic Illness is painful physically and mentally and when you find a spot online that reflects your own thoughts and ideas and connects with you, there’s a genuine freeing sensation. You feel less alone in the world and you realize that other people “get it”. Being understood is an amazing feeling and us Chronic Pain Warriors don’t always feel understood. 

volunteers-2653997_640
Image by Gerd Altmann from Pixabay

Volunteering

In many ways, I see writing this blog as another form of volunteering that I do. My focus on health and wellbeing extends beyond this blog site, but I consider the site to be one of service to others. 

Like my other volunteer roles, I receive no compensation for producing this site, with the exception of any money I might make with Affiliate Marketing (more about that in a minute). I do this purely because I want to help others who are in Chronic Pain and who feel lost and alone and in need of information that might help make their lives better. 

My other volunteer roles include committee work for Surgical Quality Improvement, improving Clinical Resources for Patients such as updating Patient Information Sheets received when you are discharged from an ER and Laboratory Quality Control to ensure that Patients are receiving the best care possible when they are providing lab samples for doctor-ordered tests. I also sit on a Provincial Measurement Working Group that is creating a survey for Patients in British Columbia, Canada to ensure that their care received has been the best it can be. 

These roles, together with this blog, give me ample ways to help others, and that brings a lot of happiness to my soul. 

 

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Image by John Hain from Pixabay

Helping Myself

My final reason for blogging is purely selfish…I do this for me as well. It’s therapeutic to be able to write about what’s new in health care, or what I’ve been thinking about a certain subject. I love being able to tackle controversial subjects or bring emotional issues to light, such as intimacy when you are Chronically Ill. 

I consider myself lucky to be in a position where I can have some influence over others and perhaps introduce them to a treatment they haven’t heard of before. There’s nothing quite as satisfying as hearing back from someone who says “you changed my life” or “I really needed to read this”. It makes up for the research, the typing on days when my hands hurt and the work of coming up with new topics that will be of interest.

If you are a blogger, you understand what I’m talking about. If you are a reader, just let me say that having responsibility for you and what I’m producing for you is an honour I don’t take lightly. I want to make sure you’re getting information that benefits you and your health because I know what it’s like to live with Chronic Illness and I know the types of things that I’d like to read and learn from. 

Thank you for allowing me to share these thoughts with you. I appreciate your comments below, or you can always write to me using the Contact Form. 

I do this because I love it. I love sharing and helping others and I hope I’m able to continue for a long time to come. Remember…

There Is Always Hope

Interview April – Terri Sutula

Readers, thank you for checking out our final Interviewee – the fabulous Terri Sutula. 

TerriSutula

Introduce yourself and tell us a bit about you…

Hi, I’m Terri Sutula, and I currently live in the state of Virginia, USA. I’ve been married to the love of my life for the last 21 years, and I’m the Mom of a fabulous grown son. I served 20 years in the Air Force, and after I retired, I went back to school and received my degree in Religion (emphasis church ministry), then obtained my certifications in Personal Training and Health Coaching with the goal of developing a whole-person health ministry. Those plans took a bit of a turn in 2011…. Now I consider my blog to be my ministry, and I hope that by sharing my journey, setbacks and all, I can let people know that there is still life – a great life – after diagnosis, and help them avoid the hopelessness I felt at one point during my illness.

One fascinating fact about me is:

I don’t know if I’d call it fascinating, but it’s something my family loves to tease me about…. I’m constantly making up silly songs to popular tunes. I just can’t seem to help myself haha.

Chronic illness(es)/disabilities I have…

My main issue is fibromyalgia, though I’ve suffered from migraines my entire life, and have also lived with endometriosis, early osteoporosis (probably from the endometriosis treatment), and irritable bowel syndrome for years.

My symptoms/condition began…

Around 2011, my primary fibromyalgia symptoms began after a “snowball” of illnesses, accidents, and a stressful move. I got the flu and soon after that, was diagnosed with subacute thyroiditis, which resolved after about a year. During the same period, I had a couple of bad falls which ended with me doing a face-plant on the pavement. My second fall ended in a trip to the Emergency Room and pain in my ribs for months afterwards. Then, about a year later, we moved to another city, and everything that could go wrong did. I became extremely stressed out, my abdominal symptoms got worse and worse, and the fatigue and whole-body pain became overwhelming.

My diagnosis process was… 

Surprisingly enough, my diagnosis process was pretty quick and easy. I went to my Primary Care doctor, explained my symptoms and my accompanying illnesses, and he checked me for tender points, did some bloodwork, and confirmed what I suspected – that I had fibromyalgia.

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

The hardest thing for me to come to terms with is my physical limitations. As I mentioned earlier, I was in the military for 20 years, stayed mentally and physically strong, and was capable of doing pretty much anything I put my mind to. Learning to work within my revised capabilities has really been a challenge, but it has also been a time of growth. It’s given me greater empathy for others and I’ve discovered a new sense of purpose.

 A typical day for me involves…

I’m not sure I have a really “typical” day – I just do whatever needs to be done on a given day. I do try to do some blog work most days, and I break my cleaning chores into different days so I’m not trying to do everything at once. We’ve started picking up groceries for a few days at a time rather than doing a “big” shopping trip once a week. It gets me out of the house and helps me work with my energy levels. It’s a lot easier to run into the store for a few things than to spend a long time shopping. I guess I’d say I do all the “normal” things others do, just on a smaller, more relaxed scale. I’ve learned that pacing my activities is key to keeping flares at bay.

 The one thing I cannot live without is…

 I have to say that there are actually two things I can’t live without, my faith and a sense of humour. Both of these are my keys to not just surviving, but thriving, with fibromyalgia and any other adverse event or circumstance that comes my way.

Being ill/disabled has taught me…

This illness has taught me that it’s okay to ask for help, and it’s okay to not be okay sometimes. I’ve learned that I don’t have to be strong all the time; it’s okay to share the load with others and asking for help isn’t a sign of weakness; it’s actually a sign of strength.

 My support system is…

My absolute biggest supporter is my husband, and I’m so grateful to have him. I’m very fortunate to have a really supportive family in general, but he’s my day-by-day, minute-by-minute supporter. He sees what I go through many days and is always willing to do whatever I need him to do.

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

I would go hiking on one of the beautiful trails we have around here. My hubby and I used to love to pack a picnic lunch and go hiking, and unfortunately, my pain and energy levels don’t allow us to do that right now. My goal is to work my way up to at least some of the easy trails.

 One positive of having a chronic illness/disability is…

You find out what’s really important to you when you have a chronic illness/disability. When you aren’t in such a place of “doing” all the time, as I was before I became ill, you can concentrate on the things that really add the most value and joy to your life.

One final thing I want people to know is:

There is hope, and there is a fulfilling life after diagnosis. Your life might not look exactly the way you imagined and you might have to learn to adjust to your “new normal” but this new phase of your life might open up even greater opportunities for you to live a life of joy and purpose.

My links are:

Blog: https://reclaiminghope.blog

Facebook: https://facebook.com/hopereclaiming

Twitter: https://twitter.com/hopereclaiming

Pinterest: https://pinterest.com/reclaiminghopeblog

Interview April – Amber Blackburn

Let’s welcome our next guest, the adorable Amber Blackburn!

AmberBlackburn

Introduce yourself and tell us a bit about you…

Hi y’all! My name is Amber Blackburn, I am 33 (almost 34) and live in the middle of the United States.  I am a Registered Nurse by trade who is now a Chronic Illness Blogger and Advocate due the fact that my health has declined to the point that I can no longer work a standard job!

Chronic illness(es)/disabilities I have…

Way too many for someone my age!  I don’t even know where to start!! I have Systemic Lupus (SLE), Fibromyalgia, Bertolottis Syndrome, IBS, Anxiety, Depression, Endometriosis, Interstitial Cystitis, Secondary Adrenal Insufficiency due to long term steroid use, POTs, Debilitating Migraines (Some of which are hemiplegic). I think that’s all my conditions. Or at least the important ones. I will note that many of my issues alone are not disabling but in combination with all the others they can be.

My symptoms/condition began and My diagnosis process was

I am going to combine these two questions as it makes my response easier.

I was admitted to the hospital for a respiratory illness in February 2012. I was in the hospital for 5 days and they could never really figure out what was going on. So I was put on high dose steroids and antibiotics and was told that would probably fix it. Over the following months more symptoms started showing up beyond the respiratory issues like extreme fatigue, joint pain and joint swelling. They had done all kinds of labs up to this point and nothing had shown up. But finally my Pulmonologist did a repeat ANA and lupus markers in April 2012 and they came back very positive. The joint pain and swelling continued to worsen to the point that I had to buy bigger shoes and could hardly walk.

So I saw a Rheumatologist in the summer of 2012 and was diagnosed with Systemic Lupus and Fibromyalgia. But looking back my symptoms go back to the late 90s, early 2000s. During my junior year of High School in 2001 I was diagnosed with Mono and it lasted SIX months, which does not happen. So we are pretty sure part of that was actually my first lupus flare. My official Endometriosis and Interstitial Cystitis diagnosis was in November 2011 but those symptoms went back to 1998 when I started having such horrible abdominal pain that no one could diagnose and blamed it on IBS.
The hardest part of living with my illness/disabilities is…

If I am being 100% honest the hardest part of living with my illnesses is not always dealing with my health. Outside of the pain and fatigue when they get really bad, I find the hardest part to be the social aspects. This may sound silly but it’s super hard to have to stay home all winter because you pick up every germ despite wearing a mask and washing your hands. It’s hard having to cancel plans because you don’t feel good enough to leave the house. Also, trying to explain to those who aren’t sick why you are canceling for the third time this month is awful and hard on relationships. For me (and surely others) the social aspect is probably the hardest part of living with a chronic illness, outside of the obvious health issues.

A typical day for me involves…

A typical day for me starts with me waking up and rolling over and stretching. Trying to see what hurts and what doesn’t. Then spending the next 10-15 min actually getting out of bed because if I don’t do it slowly I’ll pay for it later. What happens after that depends on the day. If I have a doctors appointment or somewhere to be, I will start the getting ready process which can take 10 mins or an hour depending on how I feel, and how ready I need to be. As well as how many breaks I will need to take. If I don’t have anywhere to be I go straight upstairs to eat and take care of my dogs. In the morning I will always be checking social media and do my daily posts (that sometimes become 3 times a week posts) on all my platforms.

I will most likely be writing for my blog and posting if it’s a day to post. I try to write something for the blog everyday, that way I don’t feel rushed at anytime because I don’t have anything written. I may not get a whole piece written every day but I try to write something. There is always an afternoon “nap” if I can’t get comfortable and sleep than I at least lay in bed and rest. And the evenings are usually pretty chill. Generally speaking, I spend the evenings watching a show or reading a book. I take a shower and try to be in bed by nine. When I fall asleep will depend on what I did that day and how much pain I’m in. Everyday is different for me because I never know how I will feel. I always know if I did a lot the day before that the next day will be a day of rest. Honestly, I can’t plan to far in advance because I never know how I will feel.

The one thing I cannot live without is…

I hate to admit this, my phone.  I say this because I use my phone for everything. I use it for communication, with my friends, family and medical providers. I use it to help run the Chronic Illness Support Group on Facebook (Lupie Groupies) I started about 5 years ago which continues to grow. I use it to blog, to research, and post on social media. And I use it for my jobs, I sell Senegence Makeup as well as the Chronic Illness Symptom Tracker that I created for those with chronic illness.. For those reasons my cell phone is important to me.

Being chronically ill/disabled has taught me…

Being chronically ill has taught me so so many things. But I honestly think the biggest thing is that being sick has a way of showing you who your true friends (and family sadly) are. I know it sounds cliche but it’s very true.

What advice would I give someone recently diagnosed…

The biggest piece of advice I would give to someone who was recently diagnosed would be to find a support group!  No matter if it is online or in person, just find one. Your friends and family are good to talk to, but a support group filled with people in similar situations is imperative for anyone newly diagnosed as well as for those who have been ill for many years. A support groups gives you a place where you can share what is really going on and know that you are talking to people who will understand and won’t judge you.

My support system is…

My support group is AMAZING!! I have the most amazing family and group of friends a person could ever ask for. If I didn’t have my family I don’t know where I would be right now. I am truly lucky.
If I had one day symptom/disability-free I would…

Go to the beach or lake (really any body of water) and spend the day outside playing in the water without the fear of a flare.

One positive of having a chronic illness/disability is…

One positive thing about having a chronic Illness is meeting a group of wonderful and amazingly strong people whom you would have probably never met had you not gotten sick.

My social media links are:

Interview October – Frank

Today on our very last Interview October, we’re meeting Frank Rivera. Here is his story:

Frank’s Bio…  

Frank Rivera founded Sarcoidosis of Long Island in 2012. In 2011 Frank was diagnosed with Sarcoidosis after being misdiagnosed with lung cancer for 7 years prior. Since opening Sarcoidosis of Long Island he has been a local, state and federal advocate for Sarcoidosis. Frank strives to raise awareness for Sarcoidosis nationally, but specifically in the government sector. He has represented the Rare and Sarcoidosis community as a speaker at two Congressional briefings for Sarcoidosis. Frank is a National Ambassador for Foundation for Sarcoidosis Research, was a Global Genes RARE Foundation Alliance Member and was an Advocate, an ambassador for The EveryLife Foundation and a Working Group Member. Named RUGD Ambassador for Illumina October 2017 Frank organized RareNY in 2016, to raise awareness for Rare Diseases in the state of New York. He organized “A Day for Rare Diseases” on October 15th, 2016 in Long Island NY, in partnership with Global Genes, to raise awareness for all 7000+ rare diseases. In recognition of Frank’s efforts, Suffolk County and the town of Brookhaven officially declared October 15th “A Day for Rare Diseases”. In 2017 Frank was named Brookhaven advocate of the year. Frank also is an advocate for “Right to Try” even being interviewed by NBC Nightly News this year.

Chronic illness(es)/disabilities I have… 

Sarcoidosis, Sjogren’s Syndrome, and Parkinson’s and IBS

My symptoms/condition began… 

I was misdiagnosed in 2004, with Lung Cancer. I went through 4 years of chemotherapy and radiation while living in Florida. After the 4 years, I was told I was in remission. In 2011 after moving back to New York, I had problems with my IBS. While in the ER room they took a CT scan of my stomach and part of my lungs were shown in the CT Scan. They found more masses in my lungs. They took a biopsy and said I had Sarcoidosis. I ended going to Mt. Sinai Hospital to their Sarcoidosis clinic in Manhattan. They got my past tests from the hospital in Florida and found out that I had Sarcoidosis the whole time.

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

The pain and that they all are invisible illnesses. People look at me and they say well you look fine. But they don’t know what my insides feel and look like. Sarcoidosis has taken over 90% of my body. The only place I don’t have it is in my liver and kidneys.

A typical day for me involves… 

Everyday I never know how I am going to feel. So there is no real routine. I am on permanent disability. The only thing I do every day I wake up unless I can’t get out of bed is make sure both my wife and daughter have what they need for work and school respectively. I make them their lunch as well as breakfast. After that, I am too tired so I take a nap. Then since I run a non-profit organization I check my emails to see if anyone needs help. If not most of the days I rest. This disease has taken the energy out of me. In April I was downgraded from chronically ill to terminally ill. I used to travel to raise awareness for Sarcoidosis and Rare Diseases. I no longer travel far due to my body not being able to handle the travel and the long days in meetings

The one thing I cannot live without is… 

It may sound funny, but the one thing I need every day is my one cup of coffee every morning.

Being ill/disabled has taught me… 

To value life. It has told me to not sweat the small stuff. I have learned that living each day as the best you can. I also have learned you can’t please everyone so you need to please yourself first or you won’t be able to please others.

What advice would I give someone recently diagnosed… 

Be your own best advocate! Be involved. Learn about the disease

My support system is…

I would not be anywhere without my wife Diana and my daughter Savannah who is 15 going on 30. They have been there for me physically, emotionally and most important mentally. 3 years ago I thought about committing suicide due to the pain. I would have done it if it wasn’t for my wife and daughter. I ended up putting myself in a 72-hour hospital watch for suicide prevention.

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

I would go away with my family to the beach. That is my favourite place but now since I have Sarcoidosis I haven’t been able to go that much at all.

One positive of having a chronic illness/disability is…

There are actually two positive things that have come from having these diseases. The first is the friends I have met that have the same diseases as I do. They understand what I am going through and I can talk to them about it. The most important positive for me is I knew I was strong, but I never knew how strong I was until I have been with this disease. I have fought through things I never would have thought I could. My motto is ” I have Sarcoidosis and Parkinson’s but THEY don’t have me!”

My links are:

www.sarcoidosisofli.org

https://wordpress.com/view/lifeasararepatient.blog

 

Interview October – Maya

Today on Interview October, we’re meeting Maya Northen Augelli . Let’s get to know her better:

MayaNorthenAugelli

Introduce yourself and tell us a bit about you…  

My name is Maya and I’m from Philadelphia, where I live with my husband and our dog. I run a travel planning company, and also work with a local consulting company. I became a mental health and chronic illness advocate in 2009, after being diagnosed with a relatively rare mood cycling disorder. When I’m not working or advocating, you can often find me traveling, hiking or otherwise enjoying nature, reading, writing, or doing yoga – in fact, I’m just starting Yoga Teacher Training this fall!

Chronic illness(es)/disabilities I have… 

I have Rapid Cycling Cyclothymia, a rare mood cycling disorder that’s similar to, but technically “less mild” (in quotes because it definitely doesn’t feel mild at times) to Bipolar Disorder. I also struggle with anxiety as part of this disorder, though not technically diagnosed with a separate anxiety disorder. In addition to my mental health condition, I  battle IBS and Migraines

My symptoms/condition began… 

I am told I was most likely born with cyclothymia. I started exhibiting symptoms of hypomania as early as two years old, though of course they didn’t know what it was at the time. Symptoms progressively increased in frequency and intensity through my teen and early adult years. I was finally diagnosed just shy of my 30th birthday. The migraines I have been getting since I was a teenager – tough to really say when they started, but I can definitively say I can’t really recall a time when I wasn’t prone to migraines. They’re not continual, but I have consistently gotten them at least a few times a month since I was a teen. The IBS symptoms began around the age of 23, and I was diagnosed shortly thereafter.

My diagnosis process was… 

I’ll speak mainly about my cyclothymia diagnosis process here, as they others were pretty straight forward – went to the Dr, was referred to a specialist, had a couple of tests (colonoscopy/upper & lower GI tests for the IBS) and was diagnosed.

The cyclothymia diagnosis was trickier. I’d been seeing therapists on and off since college. I had only found one I’d really trusted, but long story short, at the time my symptoms weren’t as prominent, and I was more seeing her post-divorce than for my specific mental health symptoms. In the summer of 2009, my GP put me on a low dose of antidepressants, which at first helped, but soon made me feel worse. In August 2009, I was hospitalized for two days with what I thought were non-stop anxiety attacks. The hospital increased my depression medication, and I felt worse. When I got out of the hospital, I went to the one therapist I’d trusted from past years, and we began working through things – including the fact that the medication was making me worse. I even brought my mom to a session, in which she described the symptoms I’d exhibited as a very young child (since I couldn’t quite as accurately describe them, having been a toddler when they started). It was during these visits that I was finally diagnosed with rapid cycling cyclothymia. My therapist explained that the antidepressants made me worse because I cycle so rapidly that basically, by the time the medication that’s supposed to “lift” my mood (for lack of a better phrase) hits my system, I’ve already cycled up, and the effect is compounded. So in essence, the antidepressants were putting me in almost continual hypomania (what I had thought were anxiety attacks). She subsequently brought me down off the antidepressants and we began mood stabilizers.

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

It’s two fold for me. One is the feeling of lack of control over my brain. I feel like I often can’t trust my own mind – because I cycle so quickly, literally every day is a complete surprise. I never know how I’ll wake up feeling (depressed, hypomanic, anxious, none of the above), and how often it’ll change each day. Not being able to trust my own brain, or feeling like I can’t, massively affects my self-esteem and often makes me feel hopeless and worthless.

The second is the stigma. The fact that people think you can just smile, change your attitude, be more grateful, look on the bright side, or choose to not feel this way is awful. When this happens, not only do I feel hopeless and worthless, I’m being told it’s my own fault, and shamed for how I’m feeling.

A typical day for me involves… 

I have a full time job, so on weekdays, my day of course involves that. But in terms of illness and coping strategies, I get up early to exercise most weekdays before work – it helps my mood, and it helps me to keep a consistent schedule. I spend time writing each morning – mostly journaling. This helps me brain dump, more or less, so that I can try to sort through the mish-mosh of feelings, emotions, thoughts all going through my brain. Without this outlet, it feels like non-stop stimulation inside of my brain, before even getting much input from the “outside” world, and it makes concentration and focus extremely difficult. Most evenings after dinner, I try to meditate, and/or do some yoga. It’s a wind down for my day, and helps settle my brain, so that I can hopefully get some sleep. If it’s not a work day, I try to spend as much time in the sunshine and fresh air as I can – especially in nature. I’ve been slacking in that lately, and really need to get back into it.

The one thing I cannot live without is… 

My loved ones. They’re my rocks. But if I had to choose an actual thing… I’d be tempted to say my medication, but I’ve had to go temporarily off of it for personal reasons, so technically, I’m living without it for the moment.  So, I’d probably have to say my journal. Writing is my solace. My journal will “listen” to my thoughts and emotions and feelings with no judgement, and it lets me get it “out of my head” without having to actually direct it at anyone, which is huge in helping my relationships with loved ones and friends (note: I’m far from perfect in this regard, but it helps). I work through so much in the pages of my journal, and I can’t imagine not having that outlet on a daily basis.

Being ill/disabled has taught me… 

That I am not alone, and that so many people struggle with their mental health. You hear the statistics, that one in five Americans have a mental health condition, but when you begin talking about your illness and advocating, and you have people you would never have thought coming to you and saying, “Thank you so much for speaking out, I struggle too,” it really hits home. That “one in five” goes from being a statistic to something tangible that you can feel in daily life.  My illness has also given me a purpose. In my adult life, I feel I’ve floundered a bit in really finding where I feel I belong. But utilizing my illness to help others has, from the very start, always felt 100 percent like it’s my purpose and a path that I have to follow. It feels such a natural part of my life, almost an extension of myself, when so little else does sometimes.

What advice would I give someone recently diagnosed… 

I have so much to say here, but I’ll try to condense it!  First, I would tell them to learn everything they can about their illness (from credible sources of course), and that when they’re ready, finding support with others who have the same/similar illness  – whether they find this in an official group or among friends or on social media/online – can make a world of difference. I’d also remind them how often depression and anxiety lie, and that there may be days that their illness wants them to believe every terrible thing about themselves, but that these aren’t true, no matter how convincing the lies sound.  I’d want them to know that there’s hope, there are others who “get it” and are here to help, and that they are not alone. Finally, I’d tell them to make sure that they have a healthcare team that they trust, and just as importantly, that trusts them. We know our bodies and our brains better than anyone else because we have lived with them our entire lives, and it’s important that our health professionals understand this – we deserve that respect as patients, to have our voices heard and not to be discounted.

My support system is…

My husband, my family, my friends, my therapist, my social media/online spoonie family.

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

Live as fully as I could – do activities I love to do, with people I care about, and try my hardest not to, as so often happens, let the anxiety of “Ok, I feel good now, but when is the proverbial other shoe going to drop”  creep in. Afterall, if I let it creep in, I’d cease to be symptom free!

One positive of having a chronic illness/disability is…

For myself, I’d say that it’s helped me to be more understanding and empathetic. Because I know I’m often struggling with a lot that others can’t see, I try to also remember this when the situation is reversed, and I try to put myself in their shoes before passing judgement. For instance, if someone’s speaking to me badly, I try to ask myself “what might they be going through that I can’t see that’s causing them to act this way?”.

In addition, as mentioned above, it’s given me a purpose and direction. Without my illnesses, I wouldn’t be an advocate, I wouldn’t be involved in so many various organizations and causes, and I wouldn’t have met so many amazing people through these.

My links are:

https://spreadhopeproject.com
www.liliesandelephants.blogspot.com
Twitter: @mayanorthen
Instagram: @myohmy23