10 Celebrities Who Live With Fibromyalgia

Fibromyalgia is a condition that affects millions of people in North America. While typically thought of as an “everyday person”s condition, there are a number of celebrities who live with Fibromyalgia who have talked about it in public. It’s helpful to know we’re not alone, and because of these people, Fibromyalgia is starting to gain more recognition.

Here is a list of 10 Celebrities who live with Fibromyalgia.

Lady Gaga

LadyGaga

Lady Gaga is perhaps the most well-known celebrity with Fibromyalgia. After struggling with chronic pain for many years, she confirmed in September 2017 that the cause of her pain was fibromyalgia.

In her Netflix documentary “Gaga: Five Foot Two,” released on September 22/18, Gaga opened up about the challenges of finding treatments and coping techniques to help manage her symptoms. She is seen using ice packs and trying deep massage and dry needling as ways to help manage the pain.

“I am praying that more and more people come forward and we can all share what helps/hurts so we can help each other” Gaga said in a recent tweet.

Morgan Freeman

Morgan Freeman Best Movies and TV Shows

Morgan Freeman is the actor best known for roles in The Shawshank Redemption, The Bucket List with Jack Nicholson and for winning an Academy Award for his role as a beaten up cornerman for Clint Eastwood in Million Dollar Baby.

In 2008, Morgan Freeman was involved in a car crash that left him with multiple injuries, including a shattered left arm. He went through a 4-hour long surgery to save his arm and has talked in several interviews since he continues to experience “excruciating” nerve pain and now lives with fibromyalgia.

In 2015 he told The Daily Beast he treats the pain with marijuana. “Marijuana has many useful uses,” he says. “I have fibromyalgia pain in this arm, and the only thing that offers any relief is marijuana”.

Lena Dunham

Though she had previously been vocal about her struggles with endometriosis and chronic pain, Lena Dunham revealed in an Instagram post in October of 2018 that she has fibromyalgia. She described what it’s like to have an “invisible” illness like fibro, writing, “I appear to be totally able-bodied but it’s complex, and I am just trying to do everything required to maintain a life of joy and service. My work costs everything I have. This is fibromyalgia. It’s little understood and so even though I have a lot of knowledge and support it’s hard to shake the feeling I am crazy. But I’m not (at least not this way!) and you’re not.”

Dunham continued to say that pain, however it presents — whether it has a visible culprit or not — is valid. She wrote, “Your pain, whatever shape it takes, is yours and so it is real. I believe you when you say you hurt. I have learned time and time again how important it is to believe.”

Sinead O’Connor


Sinead O’Connor is an Irish singer-songwriter who stepped away from music in 2003 because she was struggling with fibromyalgia and wanted to take care of her children.

“Fibromyalgia is not curable. But it’s manageable,” O’Connor said in a 2005 interview with HOTPRESS. “I have a high pain threshold, so that helps – it’s the tiredness part that I have difficulty with. You get to know your patterns and limits, though, so you can work and plan around it. It is made worse, obviously, by stress. So you have to try to keep life quiet and peaceful.”

Sinead returned to the music scene in 2005. Despite numerous setbacks, she said she hopes to continue singing and doing what she loves but stays away from the parts that cause her excessive stress, which can exacerbate fibromyalgia symptoms.

Mary McDonough

“The Waltons” actress Mary McDonough has been very open about her battles with fibromyalgia, lupus and Sjogren’s syndrome. She believes she developed the conditions after having an adverse reaction to breast implants she had inserted in an effort to reinvent herself following the series’ end.

“Within 24 hours I broke out into a rash all over my back and my chest,” McDonough told Smashing Interviews Magazine. “But over the course of the 10 years, I just couldn’t put my finger on that. I just didn’t feel right. The chronic fatigue set in, the rashes, the rash across my nose and the bridge of my face which we now know is like a lupus rash, the joint pain, the muscle stiffness, eventually being diagnosed with fibromyalgia, and then the collagen disorder called Sjogren’s syndrome, my hair fell out and I would be tired all of the time.”

McDonough is now a public speaker, author and workshop leader, often talking with young women about their struggles with body image and self-esteem.

Kyle Richards

“Real Housewives of Beverly Hills” star Kyle Richards said she first became sick while her mom was sick with cancer, but was initially told she was depressed because her mom had passed. 

A friend told her she might have fibromyalgia, so she went to a doctor who specializes in the condition who confirmed her diagnosis. “All of a sudden I felt like I had an answer and I felt better because it causes so much anxiety [not knowing],” Richards said.

Richards has since sought out alternative methods for treating her fibromyalgia pain — on “The Healer,” she worked with Charlie Goldsmith, an “energy healer” who aims to help people reduce their chronic pain.

Janeane Garofalo

Actress and comedian Janeane Garofalo has been very open throughout her career about her struggles with fibromyalgia as well as mental and emotional issues, including anxiety and depression. She has even incorporated her fibro into her stand-up routine, using humour and laughter to cope with the pain she experiences.

“I had no idea I was chronically dissatisfied,” she said about being prescribed an antidepressant for her fibromyalgia.

Michael James Hastings

Michael James Hastings, known for his role as Captain Mike on “The West Wing,” had to retire from being a school teacher at age 35 due to fibromyalgia. It was his chronic pain that led him to move to Los Angeles to pursue a part-time acting career.

Hastings has said that he copes with the symptoms of fibro with natural means, such as supplements, exercise, massage therapy, acupuncture and visits to the chiropractor.

“I also have learned to accept that some days I am not going to be able to keep up with my schedule or other peoples’ schedules and I just need to rest and ‘lighten up,’” he said in an interview with the website Back Pain Relief.

A.J. Langer

a.j. langer

Actress A.J. Langer, best known for her role on “My So-Called Life,” “Seinfeld” and “Three Sisters,” was diagnosed with fibromyalgia as a teenager but continued to pursue acting. After filming “Three Sisters,” Langer took a break to figure out how to manage her symptoms and put her health first. She has experimented with a number of alternative therapies to help her cope with fibromyalgia, including surfing, yoga and meditation.

In an episode of the Aches and Gains podcast with Dr. Paul Christo, Langer said, “There are different levels of learning you go through with fibromyalgia… One is I’m all alone, you know, no one else understands this pain. And then there’s a point you can get to where it becomes universal and you understand that everybody’s got something. I’ve come to terms with the fact that my body has a fragile ecosystem and I’ve gotta tend to it.”

Kirsty Young

Kirsty Young

Kirsty Young, a broadcaster on the BBC Radio 4 show “Desert Island Discs,” announced in 2018 that she would be taking a break from the position due to fibromyalgia. She explained: “Casting away some of the world’s most fascinating people is a wonderful job – however, I’m having to take some time away from Desert Island Discs as I’m suffering from a form of fibromyalgia.”

Young indicated that she hoped to spend some time healing and then return to the show.

 

It’s nice to know that celebrities are just like the rest of us and suffer through the same types of illnesses that we do. I commend all of these people for sharing their stories in the public eye. To them and to you, I say…

There Is Always Hope!

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11 Steps For A Better Night’s Sleep

If you ask someone how they slept last night, chances are you’ll get one of two answers – “fantastic” or “not at all”. It seems like a lot of people have trouble getting a good night’s sleep. The reasons can be many – having young children, an uncomfortable bed, too hot, too cold, too much stress…the list goes on.

When you live with Chronic Pain, it’s an entirely different story. Pain is usually the main factor in keeping us awake, and the likelihood of a good night’s sleep is generally not to be expected.  Read on to find out more about what it takes for a good night snooze. 

man sleepless in bed

 

Sleep And Your Immune System

Without sufficient sleep, your body makes fewer cytokines, a type of protein that targets infection and inflammation, effectively creating an immune response. Cytokines are both produced and released during sleep, causing a double whammy if you skimp on shut-eye.  Chronic sleep loss even makes the flu vaccine less effective by reducing your body’s ability to respond.

Stock Up on Naps

To stay healthy, especially during the influenza season, get the recommended seven to eight hours of sleep a night. This will help keep your immune system in fighting shape and also protect you from other health issues including heart disease, diabetes, and obesity.  If your sleep schedule is interrupted by a busy workweek or other factors, try to make up for the lost rest with naps. Taking two naps that are no longer than 30 minutes each —one in the morning and one in the afternoon—has been shown to help decrease stress and offset the negative effects that sleep deprivation has on the immune system.  If you can’t swing a half-hour nap during the workday, try grabbing a 20-minute siesta on your lunch hour, and another right before dinner.

Other Healthy Tactics

Person washing their hands

Of course, there’s more to boosting your immunity and guarding against illness than getting ample sleep. It’s also important to practice smart stay-healthy strategies such as washing your hands with soap regularly, avoiding close contact with people who are obviously under the weather and talking with your doctor about getting an annual flu shot.  And remember: Even if you do come down with a case of seasonal sniffles, you’ll be able to bounce back faster if your body is well rested. 

11 Tips For A Better Sleep

  1. Keep a consistent sleep schedule. Get up at the same time every day, even on weekends or during vacations.
  2. Set a bedtime that is early enough for you to get at least 7 hours of sleep.
  3. Don’t go to bed unless you are sleepy. If you don’t fall asleep after 20 minutes, get out of bed.
  4. Establish a relaxing bedtime routine. Use your bed only for sleep and sex.
  5. Make your bedroom quiet and relaxing. Keep the room at a comfortable, cool temperature.
  6. Limit exposure to bright light in the evenings. Turn off electronic devices at least 30 minutes before bedtime.
  7. Don’t eat a large meal before bedtime. If you are hungry at night, eat a light, healthy snack.
  8. Exercise regularly and maintain a healthy diet.
  9. Avoid consuming caffeine in the late afternoon or evening.
  10. Avoid consuming alcohol before bedtime.
  11. Reduce your fluid intake before bedtime.
  12. Take your medications on a regular basis. If you take sleeping meds, take them on a regular basis as directed instead of just hit and miss each night. 

Some Items to Help with Sleeping

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Yolmina 3D Contoured Eye Mask for Sleeping

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ZzzQuil Pure zzz’s Sleep Aid

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Contoured Heating Pad for Neck and Shoulders

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White Noise Machine

Conclusion

Good sleep is available to all of us, but it can take some work to achieve it. Just think of the benefits at the end though…those zzzz’s are worth it!

There is always hope

New Blood Test May Prove Fibromyalgia Exists

For many years now, people with Fibromyalgia have been left in the dark when it comes to having a definitive test for the disease. The only reliable way to make a diagnosis currently is by listening to the patient’s description of symptoms and doing the standard 18 Trigger Point Test, in which you need to have 11 of the 18 tender points to qualify as having Fibromyalgia. 

I’ve written in the past about a company that has come up with what they claim is a blood test that shows Fibromyalgia, but although it’s been approved by the FDA in the USA, it hasn’t been backed by any of the major medical foundations or research hospitals. Now there’s a new research study out and it might prove to be on the right track. 

The research comes from Ohio State University and was reported in The Journal of Biological Chemistry. Here is what OSU is reporting about the study*:

~~~~~~~~~~~~~~~~~~~~

For the first time, researchers have evidence that fibromyalgia can be reliably detected in blood samples – work they hope will pave the way for a simple, fast diagnosis.

In a study that appears in the Journal of Biological Chemistry, researchers from The Ohio State University report success in identifying biomarkers of fibromyalgia and differentiating it from a handful of other related diseases.

The discovery could be an important turning point in the care of patients with a disease that is frequently misdiagnosed or undiagnosed, leaving them without proper care and advice on managing their chronic pain and fatigue, said lead researcher Kevin Hackshaw, an associate professor in Ohio State’s College of Medicine and a rheumatologist at the university’s Wexner Medical Center.

Identification of biomarkers of the disease – a “metabolic fingerprint” like that discovered in the new study – could also open up the possibility of targeted treatments, he said.

Doctor examining patient

Dr. Kevin Hackshaw examines fibromyalgia patient Barb Hartong at
The Ohio State University Wexner Medical Center.

 

To diagnose fibromyalgia, doctors now rely on patient-reported information about a multitude of symptoms and a physical evaluation of a patient’s pain, focusing on specific tender points, he said. But there’s no blood test – no clear-cut, easy-to-use tool to provide a quick answer.

“We found clear, reproducible metabolic patterns in the blood of dozens of patients with fibromyalgia. This brings us much closer to a blood test than we have ever been,” Hackshaw said.

Though fibromyalgia is currently incurable and treatment is limited to exercise, education and antidepressants, accurate diagnosis has many benefits, Hackshaw said. Those include ruling out other diseases, confirming for patients that their symptoms are real and not imagined, and guiding doctors toward disease recognition and appropriate treatment.

“Most physicians nowadays don’t question whether fibromyalgia is real, but there are still sceptics out there,” Hackshaw said.

And many undiagnosed patients are prescribed opioids – strong, addictive painkillers that have not been shown to benefit people with the disease, he said.

“When you look at chronic pain clinics, about 40 per cent of patients on opioids meet the diagnostic criteria for fibromyalgia. Fibromyalgia often gets worse, and certainly doesn’t get better, with opioids.”

Hackshaw and co-author Luis Rodriguez-Saona, an expert in the advanced testing method used in the study, said the next step is a larger-scale clinical trial to determine if the success they saw in this research can be replicated.

The current study included 50 people with a fibromyalgia diagnosis, 29 with rheumatoid arthritis, 19 who have osteoarthritis and 23 with lupus.

We found clear, reproducible metabolic patterns in the blood of dozens of patients with fibromyalgia. This brings us much closer to a blood test than we have ever been.

Dr. Kevin Hackshaw

Researchers examined blood samples from each participant using a technique called vibrational spectroscopy, which measures the energy level of molecules within the sample. Scientists in Rodriguez-Saona’s lab detected clear patterns that consistently set fibromyalgia patients’ blood sample results apart from those with other, similar disorders.

First, the researchers analyzed blood samples from participants whose disease status they knew so they could develop a baseline pattern for each diagnosis. Then, using two types of spectroscopy, they evaluated the rest of the samples blindly, without knowing the participants’ diagnoses, and accurately clustered every study participant into the appropriate disease category based on a molecular signature.

“These initial results are remarkable. If we can help speed diagnosis for these patients, their treatment will be better and they’ll likely have better outlooks. There’s nothing worse than being in a grey area where you don’t know what disease you have,” Rodriguez-Saona said.


Graduate student Didem Peren Aykas uses the experimental diagnostic tool, which measures metabolic activity in the blood, distinguishing fibromyalgia from other chronic pain conditions with near 100 per cent accuracy.
His lab mostly concerns itself with using the metabolic fingerprinting technology for food-related research, focusing on issues such as adulteration of milk and cooking oils and helping agriculture companies figure out which plants are best suited to fight disease.

The chance to partner with medical experts to help solve the problem of fibromyalgia misdiagnosis was exciting, said Rodriguez-Saona, a professor of food science and technology at Ohio State. 
Rodriguez-Saona said for the next study he’d like to examine 150 to 200 subjects per disease group to see if the findings of this research are replicable in a larger, more diverse population. Hackshaw said his goal is to have a test ready for widespread use within five years.

Fibromyalgia is the most common cause of chronic widespread pain in the United States, and disproportionately affects women. The U.S. Centers for Disease Control and Prevention estimates that about 2 per cent of the population – around 4 million adults – has fibromyalgia. Other organizations estimate even higher numbers.

About three in four people with fibromyalgia have not received an accurate diagnosis, according to previous research, and those who do know they have the disease waited for an average of five years between symptom onset and diagnosis. Common symptoms include pain and stiffness all over the body, fatigue, depression, anxiety, sleep problems, headaches and problems with thinking, memory and concentration.

Eventually, this work could lead to the identification of a particular protein or acid – or combination of molecules – that is linked to fibromyalgia, Rodriguez-Saona said.

“We can look back into some of these fingerprints and potentially identify some of the chemicals associated with the differences we are seeing,” he said.

In addition to identifying fibromyalgia, the researchers also found evidence that the metabolic fingerprinting technique has the potential to determine the severity of fibromyalgia in an individual patient.

“This could lead to better, more directed treatment for patients,” Hackshaw said.

Other Ohio State researchers involved with the study were Didem Aykas, Gregory Sigurdson, Marcal Plans Pujolras, Francesca Madiai, Lianbo Yu and Monica Giusti. Tony Buffington, formerly of Ohio State and now at the University of California, Davis, was also a co-author.

The research was supported in part by the Columbus Medical Research Foundation.

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These are exciting times to be in research for Fibromyalgia. Remember

There is always hope!

 

*Journal of Biological Chemistry

Using Vitamins To Help Treat Fibromyalgia

Fibromyalgia is a difficult condition to treat because no one seems to present with the same set of symptoms. Every person describes their pain in different ways (aching, throbbing, burning) and their pain can manifest in different parts of the body than where you may experience it. One treatment option is to use Supplements to help the body where it may be lacking in a certain substance.

Picture of various vitamins

How Do Vitamins Work?*

A vitamin is a small molecule that your body needs to carry out a certain reaction. Your body has no way to create vitamin molecules itself, so the vitamin molecules must come in through food that you eat. The human body is known to need at least 13 different vitamins:

In the body, proteins, carbohydrates, and fats combine with other substances to yield energy and build tissues. These chemical reactions are catalyzed, or accelerated, by enzymes produced from specific vitamins, and they take place in specific parts of the body.

The vitamins needed by humans are divided into two categories: water-soluble vitamins (the B vitamins and vitamin C) and fat-soluble vitamins (A, D, E, and K). The water-soluble vitamins are absorbed by the intestine and carried by the circulatory system to the specific tissues where they will be put into use. The B vitamins act as coenzymes, compounds that unite with a protein component called an apoenzyme to form an active enzyme. The enzyme then acts as a catalyst in the chemical reactions that transfer energy from the basic food elements to the body. It is not known whether vitamin C acts as a coenzyme.

When a person takes in more water-soluble vitamins than are needed, small amounts are stored in body tissue, but most of the excess is excreted in the urine. Because water-soluble vitamins are not stored in the body in appreciable amounts, a daily supply is essential to prevent depletion.

Fat-soluble vitamins seem to have highly specialized functions. The intestine absorbs fat-soluble vitamins, and the lymph system carries these vitamins to the different parts of the body. Fat-soluble vitamins are involved in maintaining the structure of cell membranes. It is also believed that fat-soluble vitamins are responsible for the synthesis of certain enzymes.

The body can store larger amounts of fat-soluble vitamins than of water-soluble vitamins. The liver provides the chief storage tissue for vitamins A and D, while vitamin E is stored in body fat and to a lesser extent in reproductive organs. Relatively little vitamin K is stored. Excessive intake of fat-soluble vitamins, particularly vitamins A and D, can lead to toxic levels in the body.

Many vitamins work together to regulate several processes within the body. A lack of vitamins or a diet that does not provide adequate amounts of certain vitamins can upset the body’s internal balance or block one or more metabolic reactions*.

Why Do I Need Vitamins?

Optimal nutrition creates a body that is strong and healthy. When you live with Fibromyalgia, you may be at risk of poor nutrition, due to various factors. Some reasons contributing to your fibromyalgia nutrition problems can be:

1) lack of nutrients in the food you consume
2) lack of nutrients in the soil in which your food is grown
3) a spasm in the artery leading to the muscle
4) poor digestion
5) lack of exercise
6) stress (which increases your demand for nutrients)
7) chronic fatigue
8) hormonal imbalances
9) viruses and toxins
10) chronic pain, which makes it difficult to eat

Which Vitamins Are Best For Fibromyalgia

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The above chart can help you determine which vitamins might be best for you. Where possible, it’s always best to get your vitamins from a natural food source, but supplements are fine as well. Talk to your doctor so that the two of you are working together to find a plan that fits with your current medications and lifestyle.

In particular, pay attention to the B Vitamins, Vitamin C, Vitamin D and Magnesium. These four are the powerhouses for Fibromyalgia, working on bones and muscles as well as nerves. Since Fibromyalgia is thought to be a condition in which the messages between the brain and the nerves to the spinal cord are messed up, good nerve function is critical to the care of your Fibromyalgia. Magnesium can help with the heavy muscle pain that Fibromites often feel. The B Vitamins are crucial for maintaining your overall good health, including that of the muscles and nervous system.

Other Supplements That May Help

SAMe

S-Adenosyl methionine, more commonly known as SAMe, is a synthetic form of a compound the body naturally produces.

We need it for proper immune function, and it plays a role in forming cartilage and our DNA.  As we age, our bodies produce less of it, which may explain the increased aches we feel after each new birthday. Taking a SAMe supplement not only lessens chronic pain, but it also can boost your spirits, as it assists in the production and breakdown of neurotransmitters, such as serotonin, norepinephrine and dopamine – brain hormones that influence and regulate moods.

Fish Oil

Because of its omega-3 fatty acids, fish oil has terrific anti-inflammatory properties, which can help reduce fibro pain.  It reduces the body’s production of inflammatory hormones (prostaglandins) and that may mean less stiffness or fewer tender joints.

The recommended dosage is 1 or 2 capsules (or 1 or 2 tablespoons) daily to reduce inflammation and boost your immunity. But check with your doctor first – especially if you take blood-thinning medications, such as aspirin or warfarin (Coumadin).

Ribose

Tight muscles are a common cause of fibro pain. To relax and release, muscles need energy and that’s where ribose supplements come in.

Ribose, a simple sugar, can increase energy by an average of 61% – and cut the pain experienced by fibromyalgia sufferers by an average of 15.6%, according to a 2012 study published in The Open Pain Journal. The author of the study recommends a 5 g dose three times a day.

Brown Seaweed Extract

You may not be familiar with these capsules, but this supplement is one to look for. It’s showing great promise in the fight against chronic pain.

In fact, taking 1,000 mg of brown seaweed extract daily can reduce joint pain and stiffness by 52%, according to a 2011 study from Australia’s Centre of Health and Wellbeing, published in the journal Biologics.  Even better: These benefits kicked in after just one week, so you don’t have to wait long to find out if it’s working for you.

Conclusion

There are many options available to you in regards to Vitamins and Supplements when it comes to treating your Fibromyalgia. Check with your doctor for more information and find the ones that may work for you.

 

*http://cyber-north.com/vitamins/work.html

10 Things I’ve Learned About Chronic Pain

If you’ve read my blog before, you know that I live with Chronic Pain and Chronic Fatigue. My pain comes from Fibromyalgia, Osteoarthritis in all my major joints, Myofascial Pain, a condition called Trigeminal Neuralgia, Diabetes (and Neuropathy that comes from that), Pelvic Adhesions, a spinal condition called Forestier’s Disease, aka D.I.S.H. which stands for Diffuse Idiopathic Skeletal Hyperostosis, Gastroparesis and several other medical conditions.

The author showing various pictures of her face in pain

My many faces of pain

I’ve been living with Chronic pain for over 30 years now, from the time I was a teen, and I’ve learned a few things in those years. I’d like to share 10 of those things with you now.

1. THERE IS ALWAYS HOPE

No matter how long I’ve been in pain for, I’ve never given up hope that things are going to get better. Some days I have are pure agony. Some days are pure delight. I cling to the good days as a reminder that things can be better and often are. There is always hope.

2. A GOOD DOCTOR IS TO BE TREASURED

Doctors have a hard time treating patients with chronic pain because they haven’t been trained well. They’re trained to diagnose a problem and solve it, so chronic pain is frustrating for them as well. If you don’t have a sympathetic doctor who is doing everything they can for you, find another doctor. When you do find one, be honest with them. Share everything…your depression, your anger, your worries. A good doctor wants to help you, but if you can’t share with them, you’re not giving them the chance to do all they can.

3. SUPPORT GROUPS AREN’T RIGHT FOR EVERYONE

Some people thrive in a support group. Others tend to get tired of the constant back patting and “Oh my gawd, I’m so sorry” conversations. Some are in the middle. I think a support group can be a great thing, as long as it’s the right fit. You want a group where you can feel heard and valued while offering support to the others as well – not just a one-way street. I also think it’s important to not jump into every group you hear about. That just becomes confusing and almost like a competition, to see how much sympathy you can drum up. You have to be willing to give back and you can’t forge honest relationships with people when you’re in a dozen active groups in my opinion. Unless that’s all you do all day long. And if that’s the case, I feel sorry for you, because you’re obviously not getting something you truly need.

4. CHRONIC PAIN IS ALMOST IMPOSSIBLE TO EXPLAIN TO OTHERS

Despite having great tools like the Spoon Theory and the Battery Analogy to talk about how much energy it costs us to live with chronic pain, it’s almost impossible to get others to understand what it’s like to live with chronic pain day in and day out. Here’s the thing…THE PAIN NEVER GOES AWAY. I can’t make it any more clear than that. No matter what I’m doing, or not doing. I’m hurting. Sometimes I’m in agony, like when I get a Trigeminal Neuralgia Flare up. Try to imagine the last time you experienced brain freeze from eating/drinking something cold…do you remember that sensation? That agonizing pierce of pain in your brain?  Now try to imagine that same feeling but in your cheekbone…for 12 hours in a row. Can’t imagine it?? Go try and get brain freeze as a reminder. That’s what my TN flare-ups are like. They start in my cheekbone and spread to my sinus cavity and my eye, then down to my jaw, and to my esophagus. I get spasms in my throat and often I get chest pain as well. For 12 hours.

My Fibromyalgia pain feels like my limbs are in concrete…it’s a heavy throbbing sensation in my arms and legs that make them impossible to move. The Neuropathy I feel in my feet is like pins and needles that never go away. My back pain is so intolerable that I can’t sweep my floors for more than 5 minutes without my lower spine seizing up.

5. DID I MENTION, THE PAIN NEVER GOES AWAY.

Sometimes it lightens up a bit, maybe after I’ve had a rare good night’s sleep, but if I’ve done too much on a particular day, the next day will be agony. Every day is different, and I’ve learned that there is no rhyme or reason as to what might cause a flare and why some days are better than others. Even as I’m typing this, my hands and wrists are throbbing and I’m making more mistakes typing than I normally do. When I sleep, I have to make sure my fingers aren’t curled, or I’ll wake up and won’t be able to move them.

6. COMFORT ROUTINES FOR FLARE UP DAYS ARE LIFESAVERS

In order to combat chronic pain, you need to have an arsenal of weapons at your disposal. This can include medications, therapies like massage or chiropractic care, acupuncture, heat, cold, stretching, yoga, and other items that help you when your pain is flaring up. Warm fluffy blankets and socks, a TENS machine or massaging unit, a roll-on pain medication – whatever you find works for you is part of your comfort routine and it’s important that you use these items when needed before your pain becomes even worse.

Kitten resting in a fluffy blanket

7. PACING REALLY DOES WORK

One of the important things you learn when you have chronic pain is that you have a limited amount of energy and you have to pace yourself throughout the day/week, etc. in order to stay ahead of the pain. Pacing is critical in helping to prevent flare-ups or in helping to reduce the number of flare-ups you may experience. There comes a point when you may have to consider outside help for chores because you can’t do them all. Perhaps a teenage neighbour can help with cleaning or laundry or care in the garden. Maybe you decide to hire a cleaning service twice a month for a deep clean that you can’t get to. Whatever you need and whatever you decide, my best advice is to lose the guilt. It’s not your fault you have chronic pain. You do what you need to, in order to make your home a happy one again.

8. SLEEP IS A VERY GOOD THING

Most people with chronic pain struggle to get good sleep, just by the very nature of being in pain. Take the time to establish a good sleep routine and don’t be afraid to nap during the day if that’s what your body requires. Just sent a timer for no more than 90 minutes (one sleep cycle) and do it early enough that it won’t interfere with bedtime. If you need to ask your doctor about sleep medications, then ask. Don’t be afraid of them, but perhaps try the more natural solutions first, like melatonin. Your doctor can give you the best advice.

9. WE ARE ALL WARRIORS

Just by the mere fact you are reading this and identifying with it, you are a warrior. Living with chronic pain is no picnic my friend and those of us who do it struggle every single day of our lives. Some days are good, some days are bad and some days are too difficult to talk about. It takes a special kind of strength to manage chronic pain and life at the same time and I admire every single person out there who is doing it. You are a warrior.

10. I’VE FINALLY ACCEPTED MY BODY THE WAY IT IS

For all my bravado and positive spirit, it took me a long time to learn to love this pain-filled body of mine. When I was forced to leave my job at the top of my game in 2009 I was devastated. I didn’t think I’d ever be useful to anyone again and I sank into a deep depression over how my body had let me down. It took several years before I was able to accept that this truly was my “new normal” and that returning to work wasn’t going to happen for me. When I found myself in a place where my health had improved somewhat, and I felt I had something to give back, I started volunteering for the Patient Voices Network and that really helped me get back on my feet. I am able to take part in committee work again, but at a pace that works for me and my health. I’m better able to accept my body and all it’s medical failings because I’ve found ways to contribute again.

I’ve also been able to get involved in hobbies again such as crafting and reading. I’m learning how to crochet and do needlepoint, all things I didn’t have time for when I was too busy working. So accepting my limitations also opened the door to new things for me to try, which has been a blessing. Perhaps you’re in the same place now, ready to accept that this is your new normal, and it’s an okay place to be. If you’re going to be in pain anyways, doesn’t it make sense to accept it and find ways to make the best of it.

CONCLUSION

I’ve been blessed with a positive nature that has helped to get me through a lot of difficult situations in my life. Chronic pain and my medical conditions are part of that. I believe in God and trust Jesus every day to be there for me. I have wonderful family and friends who have been so supportive of me. I belong to a great support group online that genuinely cares about me. More than anything though, and as my first point says,

There is always hope

May 12th Is Fibromyalgia Awareness Day

May 12th is (1)

Fibromyalgia is a Chronic Pain disorder that affects millions of North Americans and others around the world. People who live with this condition experience widespread pain throughout their bodies, along with a host of other symptoms. Sufferers are diagnosed by the “tender points” they have developed over their body as per this illustration:

FibroSymptoms2

In recognition of May 12th, Fibromyalgia Awareness Day, I wanted to share with you a post from the past. It’s titled An Attitude of Gratitude. I wanted to put a different spin on having Fibromyalgia because so often, we focus only on the negative side of illness. It’s natural when you’re chronically ill, but there are reasons to be grateful as well. Read on to see what I mean:

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Are you grateful for your life?  Are you grateful for the things you’ve been given? Are you grateful for Chronic Pain and Chronic Fatigue? What about your other Invisible Illnesses? For Fibromyalgia? I am, and let me explain why.

I have had my Invisible Illnesses for over half my life now, and they have been a predominant part of my life since 2004 when I went into a major flare that I’ve never recovered from. That was the year I had stomach surgery for severe Gastric Reflux disease – a procedure called a Nissen Fundoplication. The surgery itself was successful, but I suffered nerve damage in the sternum area from where an instrument being used was pressed too hard against a nerve for an extended period of time, causing it to be pinched for over an hour.

This caused me excruciating pain that didn’t resolve for almost a year and had me addicted to morphine pills to the point that I was hallucinating. In fact, at one point, the general surgeon called in a Thoracic surgeon, who was going to crack open my sternum to try and fix whatever the problem was – a drastic solution indeed.

I’m grateful this didn’t happen and the Thoracic surgeon had the sense to suggest a drug called Gabapentin for nerve damage which is what he suspected was the problem, and he was right.

I spent almost a year in a hunched over position, trying to “contain” the pain, it was so bad. I ended up having to go for physical therapy and massage in order to loosen up my muscles to where I could stand in a straightened up position again.

I’m grateful for the therapists that helped me.

I’m grateful there are medical teams in place when we need emergency surgery, such as when a cyst I didn’t even know I had on my ovary burst, causing me horrid pain. It needed immediate removal and there was a team to do that. Just like there was a team to remove my gallbladder and my other ovary when it went rogue as well.

And I’m grateful for my four doctors who have worked with me and my overall health issues over the last five years, Dr Leong, Dr Winston, Dr. Wilson and Dr Burnett, my orthopedic surgeon who did my hip replacement.

Okay, you say…it’s easy to be grateful to the people who help us, but how can you be grateful for having Chronic Pain and Fibromyalgia and all the other stuff. Well, I’ll tell you.

When you have Invisible Illness, you tend to miss out on a lot of life. You may have to give up your job or volunteer activities, your hobbies and family life. You end up losing a lot more than you seem to have left. But what having a Chronic illness does is force you to dig deep to FIND what you’re grateful for. I made a list:

  • Sunrises and sunsets
  • Quiet mornings after a good sleep
  • A perfect cup of coffee
  • A day where the kids get along and no one is fighting
  • A day where the cat or dog doesn’t barf all over the place
  • Feeling energetic enough to accomplish a few things on the “to do” list
  • Feeling rested
  • Feeling less pain than normal
  • Being able to go for a coffee date with a girlfriend or two
  • Having dinner with your family together instead of needing to lay down
  • Date night with your spouse
  • Watching a movie together instead of early to bed
  • Having a bath or shower
  • Having enough food on the table and money in the bank
  • Laughter
  • A sense of safety and security
  • A roof over your head
  • Feeling loved
  • Having a close friend you can confide in
  • Books to read and art to admire
  • Social media like Facebook and Pinterest
  • Ice cream or a favourite treat
  • Family and friends to share memories with
  • Vacations

I could go on and on…the point is, there is so much to be grateful for, but when you live with Chronic Pain and Chronic Fatigue and Invisible Illness, it’s easy to get stuck wallowing in the negatives, to the point you forget to stop and remember to be grateful.

Take a moment now to list a few things that you’re grateful for and make it a habit each day to say thank you. An Attitude of Gratitude is easy to cultivate, but like a good garden, you need to tend to it every day.

Remember…

There is always hope!

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So, what are your thoughts? Were you surprised at how easy it can be to be grateful? It’s not hard to make a list like I did, and I highly recommend that people give it a try.  We live in a busy and scary world, and this is also a good way to take back a bit of control over the craziness. 

Cultivate an Attitude of Gratitude and see how things change in your life. Even if you don’t make a list, there’s one thing you can count on…

There is always hope

Chronic Pain and Travelling

When you live with Chronic Pain and Chronic Fatigue, travelling for business and/or pleasure can become a real challenge. In the course of my volunteer work, I sit on 4 different committees and one working group, and of those, 2 of them require travel from my home in Langford, BC (just outside of Victoria) to Vancouver on the Mainland. It’s a short flight, only 30 minutes from runway to runway, but with everything that goes into it, it can end up being quite exhausting by the time the trip is over.

Plane and images of travelling

On my most recent trip to Vancouver, I came down with what was either food poisoning or a severe case of gastroenteritis on Thursday evening before my all day Friday meeting. I was in the bathroom every hour all night long, plus I had the stomach cramps and nausea, along with feeling extremely cold yet having the sweats. I haven’t been that sick in years!!!  On top of all that, I had a flare-up of my Trigeminal Neuralgia which combined to make me a very, VERY miserable girl.

I survived to the next day, made it through the meeting still having the shakes and sweating and still with facial pain from the TN, and all I wanted to do was get home as soon as possible. I arrived at the airport for my 7pm flight, only to find out it had been cancelled!!  The next flight was for 8pm so I had no choice but to wait. Then there came notice of a delay for that flight. Then another delay and another delay and still ANOTHER delay. In total, there were five delays for the flight and I didn’t get home until just before 11pm by the time it was all said and done.

I was so wiped out from being sick, from the travel, the intensity of the meeting…just everything. I went to bed immediately and didn’t wake up (except for pee breaks) until Sunday at 8am. I completely slept through Saturday!!

Chronic Pain And Travelling

Travel, in general, is not easy when you have Chronic Pain and being sick makes it worse. If you do have to travel, for business or pleasure, I’ve gathered a few tips to help make YOUR travels a bit easier the next time you’re flying or on the road:

General Considerations:

  • Plan a realistic itinerary.
  • Allow plenty of time.
  • Keep a small, lightweight, hands-free bag with essentials handy and check your main bag if traveling by air.
  • Ask, “How accessible are handicapped accommodations?”
  • Pack for all temperatures and environmental fluctuations. I get hot easily, so I pack clothing that is easy to layer. With careful coordination, I can make many outfits from fewer articles of clothing and lessen the load.
  • Make your bed as close to your bed at home as possible. Ask for extra pillows or blankets. (I always check the closet when I first arrive for these).
  • Use earplugs and a sleep mask.
  • Stay as close to your usual routine as possible, but also adjust with the local time to avoid jetlag.
  • Throw in an extra pair of reading and sunglasses from the dollar store so if you lose them, you don’t mind so much. A book light comes in handy and serves as a light that is easy to access when your unfamiliar hotel room is dark.

Medical-related

  • Carry a medical letter or a medical history summary that includes diagnoses with your physician’s contact information. This letter is handy and often available from your doctor. Ask if they might have such a thing or create your own.
  • Carry your medications with you and follow the tips for traveling with medications.
  • If you need a wheelchair, contact your airline and arrange to have one available.
  • Carry your insurance cards and identification at all times.

In the air, over the rails, and on the road

Amtrack Passenger Train

  • Take advantage of rest stops. Move about and stretch every chance you get. If you are traveling in America, Google has a map of rest stops across the U.S.
  • If you are confined to an airplane seat, keep blood and lymph moving by flexing and relaxing your joints every 20 to 30 minutes. Compression socks are helpful for circulation too.
  • Avoid alcohol and stay hydrated. Dehydration stresses the body as a whole.
  • Carry a healthy snack bag with fresh fruit and non-perishable foods, like protein bars, in case of a delay.
  • Dress for comfort in loose non-restrictive clothing and a pair of comfortable fail-safe shoes. This is not the time to try out those new sandals you bought!!
  • Make sure your plane, train, or bus is on time before leaving home – sign up for notification alerts when offered.

Travel comes with challenges for everyone, but especially those of us who live with conditions that cause chronic pain. But, if we respect our limitations and listen to what our body tells us, we can enjoy our time away from home.

Remember, there is always hope

 

Overcoming Depression With Fibromyalgia And Invisible Illness

If you are a patient with Fibromyalgia or another Invisible Illness, chances are you’ve felt depressed at some point. Depression is prominent in fibromyalgia patients with the risk of getting depressive symptoms at least once being about 90% and getting major depressive disorder (MDD) being about 62–86% in fibromyalgia patients*.
Depression Is a Big StormBy following an appropriate fibromyalgia treatment plan and getting the support of family and friends, you can take control of your fibromyalgia. You can also get control over your symptoms of depression and improve your quality of life.

What Is Depression?

Sadness is a normal reaction to loss or life’s struggles.  Depression surpasses sadness and becomes a problem that affects your whole life. People who are depressed commonly experience:

  • Loss of interest in activities you used to enjoy
  • weight loss or gain
  • thoughts about death
  • Irritability and guilt
  • Anxiety that won’t go away
  • Insecurity and a feeling of helplessness
  • decreased energy
  • difficulty concentrating or making decisions
  • uncontrollable tearfulness

These thoughts, physical changes, and feelings interfere with daily life.

What Is the Link Between Fibromyalgia and Depression?

The stress from fibromyalgia’s pain and fatigue can cause anxiety and social isolation. The chronic deep muscle and tender point pain can result in less activity. That causes you to become more withdrawn and can also lead to depression. It is also possible that anxiety and depression are part of fibromyalgia, just like the pain.

Depression and fibromyalgia can greatly interfere with the way you manage your activities at home or at work. So it is important to openly discuss any symptoms of depression you have with your doctors.

Does Stress Increase Depression With Fibromyalgia?

The stress of living with chronic pain and relentless fatigue can put a person into “overload.”  This results in near catastrophic levels of nervousness and anxiety. Doctors aren’t certain yet whether stress brings on Fibromyalgia or if Fibromyalgia brings on stress. All we know for certain is that it’s a vicious circle and that stress adds to problems of anger and irritability. Most patients feel their pain and fatigue worsening over time.

Is Depression Common With Invisible Illness?

Feelings of depression are common with all types of chronic pain, including headache, back and neck pain, hip pain, shoulder pain, and the pain of fibromyalgia. For example, the prevalence of major depression in people with chronic low back pain is about three times greater than in the general population.

Continuing that vicious circle, being depressed also increases the risk of developing chronic pain. Patients describe greater disturbances because of pain and display more pain behaviours than other pain patients who are not depressed.

One of the worst things that happens is that people with chronic pain such as fibromyalgia start to isolate themselves from family and friends at a time when they often need them the most. They become more focused on their pain, which causes further withdrawal which then causes more depression and round and round it goes.

Ways to Ease Depression With Fibromyalgia

It’s important to understand that fibromyalgia is more than the deep muscle pain and tender points you feel. It encompasses everything about you — your feelings, emotions, and attitude; the way you respond to stress; and the way you communicate with others.

The good news is, though, that while there is no cure, the fibromyalgia pain and symptoms of depression can be successfully treated.

  • Cognitive Behavioural Therapy

One of the most effective treatments for fibromyalgia and depression is a program called cognitive behavioural therapy (CBT). CBT is a type of treatment that helps patients understand the thoughts and feelings that influence behaviours. CBT is commonly used to treat a wide range of disorders, including depression, and anxiety.

This negative self-talk can fuel a sense that negative experiences are catastrophes, which further increases stress, anxiety, depression, and pain.

Your doctor can refer you to a CBT program offered individually (often online) or in a group format.

  • Mindfulness-Based Stress Reduction (MBSR)

This program, which teaches mindfulness to patients, had demonstrated remarkable benefits for reducing fibromyalgia pain as well as anxiety and depression. “Mindfulness is an awareness that arises through paying attention, on purpose, in the present moment, non-judgmentally,” according to Jon Kabat-Zinn, a pioneer of mindfulness in medicine.

Being mindful means intentionally being present with your breath, thoughts, feelings, and sensations. You can practice mindfulness through meditation, body scans, mindful eating, or mindful movements like yoga or Tai Chi.

You can find an MBSR program offered in your community through your doctor.

  • Music for Pain Management

Music has a powerful effect on the mind – listening to music is associated with the release of dopamine, a feel-good neurotransmitter that is known to have a role in the body’s natural pain-relieving mechanisms. It also produces relaxation, which in turn can help to lift your mood and ease your pain.

A study published in Science Daily found that, when people with chronic pain listen to music for an hour a day, they experienced up to a 21 per cent reduction in pain and a 25 per cent reduction in depression. Additionally, they found that listening to music made participants feel less disabled by their condition and more in control of their pain.

Music that you find relaxing is likely to be the most effective for improving mood and pain levels. However, music doesn’t have to be soft and soothing to be effective. Whatever type of music makes you happy is the best kind to listen to, so go ahead and turn on Rock & Roll, Grunge, Heavy Metal or Classical…it’s your choice.

  • Medication

Medication does have a role in treating depression in people living with Fibromyalgia or other Invisible Illnesses. Only your doctor can know for sure if you require medication so it’s important you seek medical care if you are experiencing the symptoms of depression.  The goal is to help you feel better and often a short course of medication might be an option in conjunction with one of the above treatment options as well.

As you can see, depression can wreak havoc on the body already plagued by Fibromyalgia. Don’t let it isolate you from your family and friends. If you’re experiencing signs of depression, seek help. The sooner you start, the better the chances are of decreasing your pain and suffering and getting you back on track to better health.

There is always hope

*https://www.news-medical.net/health/Fibromyalgia-Depression-and-Anxiety.aspx

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 – Jennifer Purrvis

It’s time to meet my next guest, the wonderful Jennifer Purrvis!

JenniferPurrvis

Introduce Yourself and tell us a bit about you….

My name is Jen. I grew up in the Houston area but live in Wellington, New Zealand. I moved to New Zealand when I was 19 and have lived in various areas in NZ but have kicked around in the capital city for 11 years. I have one daughter who will be 14 and 4 cats. I am single but formerly married. I’m a terrible cook but enjoy baking. I’m currently studying towards a Bachelor of Science in Psychology and hope to get admitted into a Masters of Forensic Psychology programme once I complete my undergraduate. I run Chronic Illness Cat, mostly on Facebook, but you’ll have seen us on other platforms too. Muffin is a real cat, who lives in France, but her dad is from Nelson in New Zealand. He sometimes comes back for a visit but we’ve never met up, though we should.

Chronic Illnesses/Disabilities I have…

I grew up a child of anxiety and depression. After I had my daughter I became severely agoraphobic and was diagnosed with a mood disorder, not otherwise specified. This would finally be diagnosed as Bipolar Disorder in 2018. I also have PMDD.  In 2007, I nearly lost my life after a doctor bagged an IV of an antibiotic I was orange banded as allergic to. I saw a huge white light. I felt a shock hit my body and felt fire ants start biting all over my body. That’s really all I remember. When I woke up I couldn’t unfold my arms or bear weight on my body. It would take years to regain my independence, my tolerance, my sanity. I was so, so angry about the disability attacking me, the pain I was constantly fighting and everything I was losing. It’s been nearly 12 years and things are so much better. I’m so much happier and freer and independent. However, in the last year, I’ve been diagnosed with Autoimmune Urticaria and I’m now on higher dose Cyclosporine. I’ve started to feel those dark shadows creeping in again. The pain is returning, so is the tiredness, reliance on drugs for pain, and I worry about stepping so far back.

My symptoms conditions began…

As a kid. I think I’ve always had an autoimmune disease. I first started getting fevers when I was 2 weeks old. I was just always sick. Always tired. I caught mono twice as a teen. I had chicken pox so severe as a kid I had them down my throat. I know I was severely depressed at 12. I had sleeping issues as a teen. I had coping methods that were not safe or would be suggested. I had a devastating eating disorder.

The night I got so sick back in 2007 was a normal night. I felt slightly off and started feeling worse and worse. I asked to go to the Emergency Department. I expected to have an infection but I didn’t expect to find myself fighting for my life. It turns out I had suspected sepsis. The bag of antibiotics was important, but so was understanding the importance of orange banding of patient allergies.

Fast Forward to the present and the first few days of realising I was getting sick again were terrifying. I knew something was wrong, but I never expected it to be something so full on. The first symptom I started experiencing was itching when sweating. Whenever and wherever the sweat would touch, I would feel like a jellyfish sting and hideous itching. I put it down to being ‘dirty’. The second major symptom that developed was a reaction to showering. Wherever the water hit, another jellyfish-like sting would develop, with burning and itching. But following the itching and burning came nausea, a feeling of being overwhelmed in the head and vomiting.

I started taking antihistamines, antihistamines and h-blockers, more antihistamines and finally saw a specialist who told me that due to my previous history of trialling drugs, I was to start Cyclosporine. At first, I was really optimistic because I had 2 weeks of showering with very little symptoms. But then, as soon as it had arrived, the optimism left. All the symptoms were back.

My diagnosis process has been…

Confusing. When I was first sick in 2007, no one knew what was wrong with me. I saw specialists and doctors all the time. People had opinions from Lupus to Still’s Disease to MS to ‘just experiencing a shock’. To get better care, we sold our home and moved. I saw another specialist who told me I had Lupus and “was just being a woman about it”. I was put on every drug you could find. Nothing helped. Nothing improved.

I saw just about every rheumatologist in the capital city. No one had answers for me. In the end, I just stopped going. It wasn’t worth the money. When I started getting sick again, and the blood tests were all fine, it started feeling like deja vu all over again.

However, this time, the specialist knew that this was Autoimmune Urticaria and that I had some dermagraphica which made him feel more confident. It felt unusual that I actually had symptoms someone was familiar with. Though, he did feel there was more autoimmune going on and asked if I wanted to begin looking for that and I told him I didn’t. I just couldn’t face doing it all again.

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

Not knowing if I’m ever going to live normally as other people do. Will I be able to work? Will I finish my studies? Will I ever be independent? It scares the hell out of me. What if the medicines just get worse? I can’t nap through life. These questions just go around and around my mind sometimes. Fears for my future feel almost disabling at times.

A typical day for me involves…

Waking at 6:30. If it’s my week with my daughter then I get up with her and help her get ready for school. Once she’s left for the bus, I head back to bed. If I’m not with her, I go back to sleep. I try to wake up at 6:30 regardless so as to keep a regular rhythm. Sleep is so crucial for the maintenance and care of the Bipolar person. When I wake up I have a cup of tea and run errands or study, depending on the day. It’s really important for me to keep my grades up, so studying is important.

I’ve gotten it into my head that I need to do some sort of exercise, even though I’m not supposed to change my body temperature and/or sweat. I have some hand weights and I’m looking into belly dancing on youtube. I want to stay active for my brain and I want to stay mobile. But gosh, I know I’ve lost a lot of dexterity and put on weight since I stopped going to the gym. Swimming is out, maybe yoga? Am I that cliche? Just do some yoga?

I try to eat normally but I’ve got some problems with eating and I take Seroquel at night, so that makes up for any lost calories I haven’t eaten during the day. Right now Married at First Sight Australia is on, so I’m pretty addicted to that. Otherwise, I just try to rest and study. Glamorous, right?

One thing I cannot live without is…

Hot tea. I’m thoroughly addicted to caffeine and classic Bell Tea with milk gets me through my day. I probably go through 6 to 8 tea bags a day. It’s probably the reason I actually can move. Also, probably why I don’t sleep much.

Being ill taught me…

To take nothing for granted and to be amazingly grateful for the gifts that I have. Being able to walk is tremendous. I spent 9 months on the couch. Slowly I learned to crawl, then scoot and then walk again. Amazing. Getting the energy to work in cat rescue and change litter pans and chase after cats made me forever grateful for the second chance I was given. Now I’m studying to become independent. I’ve got my brain back. I will never not be angry and horrendously filled with rage at what happened to me, but I will also never not be amazed and filled with gratitude that I am where I am today. I’m a survivor.

The advice I’d given someone newly diagnosed…

Is that life goes on. It’s different but it goes on. It’s like when the brand of your favourite chip alters things and it’s never the same but you just go on buying it all the same. You can’t pretend nothing has changed, but at the same time, you still enjoy it enough to keep buying it. Some days are going to be horrific. And you’ll cry. You’re entitled to cry. And get mad. And kick at things. But some days will be not so bad too. And hopefully, you’ll get more of those not so bad days soon enough. That’s all you can ask for. And hugs. Ask for hugs. No one will think less of you for doing so.

My support system is…

Really small. I have a really truly, true-blood ride or die best friend on the net but-not-imaginary friend who gets me and loves me and would do anything for me named Alice. She’s also on the Page. I hope one day to be able to explain to her how much she means to me. And to thank her for lifting me up on those really shitty days.

I have my ex who does a lot of practical things for me. I have my daughter who shouldn’t have to grow up so quickly. And myself. I lean on my GP, Simon, a lot. And that’s it. I do a lot of the emotional stuff myself. I’ve become a lot quieter and controlled. Well, the Abilify has made me that way. I could do with a therapist. And a boyfriend. But we’ll see.

If I had one symptom-free day…

Gosh, I’d just sleep. Nothing would hurt. I’d shower too. Wash my hair and not throw up. Go lay in the sun. And sweat. Imagine!

One positive of having a chronic illness is…

That it gives me an amazing sense of humour and fantastic charm. I can joke around with just about anyone and I relate to a large number of people going through many things. It’s given me a sense of empathy that’s lead me to psychology and wanting to care for others. I’ve always been sort of activist-y anyways, but being sick has really pushed that envelope in fighting for others to get the same rights and access, which has been super useful having a daughter with extra needs.

Thanks so much for having me. You can find me and Muffin at the links below. And me and my kitties on my personals.

My Social Media links:
Facebook: https://www.facebook.com/ChronicIllnessCat
The Cat Tree: https://www.facebook.com/groups/thecattree/
Twitter: https://twitter.com/chronillcat
Instagram: https://www.instagram.com/chronicillnesscat/
Personal Instagram: https://www.instagram.com/smilingtabby/
Personal Twitter: https://twitter.com/kittypajama