Having a chronic illness like Fibromyalgia can be a very isolating experience. Many of us used to work and found a lot of our social life revolved around our jobs, whether it was getting together with the gang after work for drinks or volunteering with a workgroup for a community project. Often, a best friend was made at our jobs whom we would hang out with more frequently, and those sorts of friendships became treasured relationships to us.
After you become chronically ill though, you often have to give up working, and those relationships no longer exist, not even with the “best friend” that you made. How do you handle the loneliness that comes from that? We tend to not go out a lot in the first place, because of pain and fatigue, so without a reason to get together with former co-workers, there’s now more reason to isolate ourselves than ever. It’s depressing to know that you’re no longer “part of the gang” and that you don’t fit in anymore. It’s even more depressing to know that your former friends don’t even realize that they’ve shut you out. It’s just the natural progression of you no longer being at the job, and nothing personal.
But what happens when you try to reach out, to make plans, and people don’t return calls? Or when people reach out to you, but you’re unable to go, because their plans are too ambitious for you? I’d love to see people for coffee, but they always want to combine it with shopping followed by dinner and drinks afterwards, and that’s too much of a day for me. Lunch and shopping, I can do that on a good day, but then I want to go home. And if it’s a bad day, then I have to say no right from the start. And what happens if I start having too many bad days when friends want to get together? They stop calling, period. I am “too sick all the time” and no longer any fun to be with. It’s easy to get depressed when this happens.
It’s so frustrating when friends give up on you. I can’t control my good and bad days. I have no idea when a good day is going to go bad. I can feel great in the morning and then start to go downhill by the early afternoon. I try to explain that to people, but they don’t always understand how unpredictable Fibromyalgia can be. Sometimes it can change from hour to hour and even minute by minute. It’s like going outside in changing weather and never being sure of how many layers you should wear. Will you be too hot, too cold or just right? And what do you do with all those layers if you don’t need them?
There’s also the other side of the coin though. What if your friends continue to invite you out, but you keep turning them down? Your reasons seem valid; you’re in pain, it’s too much of a hassle, the weather is too difficult, you’re tired, or you just don’t feel like it. It’s easy to make excuses, but you also need to search the real reasons for saying no. Are the reasons you’re giving valid? Or are you turning down invitations because of depression?
Signs to Watch Out For
How do you know if you’re becoming depressed or socially isolated? Here are some signs to watch for:
Being less motivated to leave your home
Feeling more anxious or worried when leaving the house
Declining invitations from friends or family to meet or attend gatherings
Planning fewer social opportunities for yourself
Ignoring supports when they reach out to you
Seeing only negatives associated with social connections
If you recognize any of these symptoms, please see a doctor in order to be treated appropriately. If you want to be more socially active, but find your friends are not as available as they’ve been in the past, the following suggestions might be helpful for you:
Volunteer with like-minded people
Help out in an animal shelter
Take up a new hobby
Join a support group (in person or online)
Join a Social Group in your City (look on Craigslist)
Keep a journal – it can help put things in perspective
Loneliness can be hard to deal with, but with the right understanding and support, you can overcome it. Make sure you’re staying in touch with people and not isolating yourself, and reach out to others if your friends have stopped reaching out to you. It’s okay to move forward and make new friends. Listen to your body and do what’s right for you. If you’re feeling up to it, go out and make new friendships through volunteer work or so social groups. If you need to take a break from socializing, that’s fine. Just don’t fade into the woodwork. Remember, your presence is valued no matter how much of it you are able to give at any time. You are loved. And as I always say…
When you’ve been diagnosed with a chronic illness, you may feel as if you’ve lost control over your future. The stress of learning to deal with doctors and specialists, coping with physical changes, and managing daily life can often lead to excessive worry or stress. Researchers have found that experiencing a chronic illness puts a person at increased risk for developing anxiety or an anxiety disorder. Roughly 40% of people with cancer report experiencing psychological distress that often takes the shape of excessive worry or panic attacks.* People with ongoing, or chronic pain are three times more likely to develop symptoms of anxiety.**
The daily demands of living with a chronic illness continues to present challenges and generate anxiety long after the diagnosis has been given. Loss of mobility or other abilities can lead to worry about employment or financial concerns. Depending on others, worrying about becoming a burden or even intimacy with your partner may also be concerns. Some people are more easily able to adapt to the changes in their lives. Others may feel overwhelmed with anxiety and struggle to cope. Still others may be in limbo, unable to make decisions about their future.
The Most Common Anxiety Disorders are:
1. Generalized Anxiety Disorder (GAD) involves excessive and uncontrollable worry about everyday things, such as health, money or work. It is accompanied by physical symptoms such as restlessness, irritability, muscle tension, fatigue and difficulty sleeping or concentrating. 2. Obsessive-Compulsive Disorder (OCD) entails persistent, recurring thoughts (obsessions) that reflect exaggerated anxiety or fears. Someone with OCD often will practice repetitive behaviors or rituals (compulsions). For instance, obsessing about germs may lead someone with OCD to compulsively washing hands—perhaps 50 times or more per day. 3. Panic Disorder includes severe attacks of terror or sudden rushes of intense anxiety and discomfort. Symptoms can mimic those found in heart disease, respiratory problems or thyroid problems, and individuals often fear they are dying, having a heart attack or about to faint. The symptoms experienced during a panic attack are real and overwhelming, but not life threatening. 4. Posttraumatic Stress Disorder (PTSD) can follow exposure to a traumatic event, such as a car accident, rape, a terrorist attack or other violence. Symptoms include reliving the traumatic event, avoidance, detachment or difficulty sleeping and concentrating. Though it is commonly associated with veterans, any traumatic event can trigger PTSD. 5. Social Anxiety Disorder (SAD) is characterized by extreme anxiety about being judged by others or behaving in a way that might cause embarrassment or ridicule. People who have SAD have what feels like exaggerated stage fright all the time. SAD is also called social phobia.
Specific phobias are intense fear reactions that lead a person to avoid specific objects, places or situations, such as flying, heights or highway driving. The level of fear is excessive and unreasonable. Although the person with a phobia recognizes the fear as being irrational, even simply thinking about it can cause extreme anxiety. I personally am terrified of the Dentist, even though they treat me gently and with compassion. I have to take medication to help relax me in order to go for a simple cleaning.
Fortunately, anxiety is treatable with therapy, medication and complementary and alternative treatments (i.e. acupuncture, massage therapy, ). But when the focus is on the chronic illness, anxiety is often overlooked. That’s why it’s important to talk to your doctor about your emotional and cognitive health, and to speak up when you experience signs of anxiety.
Emotional symptoms of anxiety include:
Becoming easily agitated, frustrated, and moody
Feeling overwhelmed, like you are losing control or need to take control
Having difficulty relaxing and quieting your mind
Feeling bad about yourself (low self-esteem), lonely, worthless, and depressed
Physical symptoms of anxiety include:
Upset stomach, including diarrhea, constipation, and nausea
Aches, pains, and tense muscles
Chest pain and rapid heartbeat
Frequent colds and infections
Loss of sexual desire and/or ability
Nervousness and shaking, ringing in the ear, cold or sweaty hands and feet
Dry mouth and difficulty swallowing
Clenched jaw and grinding teeth
Cognitive symptoms of stress include:
Forgetfulness and disorganization
Inability to focus
Being pessimistic or seeing only the negative side
What You Can Do
Challenge negative thinking. When you’re anxious, your brain may jump to conclusions, assume the worst, or exaggerate. Catastrophizing and ignoring the positives in your life may occur when you live with the challenges of a chronic illness. One way to manage anxiety is by being aware of the negative thinking, examining it and challenge the irrational thoughts. Counselors/therapists can play an important role in teaching you this important coping skill.
Calm your mind. Relaxation techniques can be an effective way to calm anxious thinking and direct your mind to a more positive place. Consider whether mindfulness meditation, yoga, or other breathing and focusing practices can still your body. Taking time to relax, increases your ability to think objectively and positively when it comes to making choices about your health and life.
Find a good Doctor. If you take medication for both mental and for physical health, it’s important to that your doctors are aware of all your medications. Some medications may actually escalate anxiety, so it’s essential to work with a prescriber who can make informed choices that address both conditions without worsening either.
Find a support group. Managing a chronic illness can be a lonely job as it may be difficult for loved ones to understand the unique challenges. Support groups, whether online or in person are wonderful for creating community but also for providing information that can help reduce worry. They can also connect you to valuable resources for treating your illness.
Acknowledge successes. Anxious thinking about chronic illness can keep you from feeling that you have control over anything in life. It’s important to acknowledge all successes, both big and small. Keep track of the healthy things you do for your mind and body. Exercising, going to counseling, spending time with a friend–these can all help. Keeping these successes at the front of your mind can help you combat worry. They can remind you that you do have the power to affect your present and future.
If you think that you might have anxiety in addition to chronic illness, be honest with your doctor. Ask for help. Anxiety is highly treatable, so remember…
One of the hardest parts of living with an Invisible Illness such as Fibromyalgia, MS, Ehlers Danlos, etc. is that you quite often look just fine on the outside, while your insides are screaming in pain. This leads many people to wonder if you truly are ill, or how serious your illness actually is. How do you handle this, as a Person with Chronic Pain (PwCP)?
For one thing, you should never have to make excuses for your pain to anyone. What you feel is what you feel, and there is never a reason to justify it or prove it, not even to your doctors. For years, people with Fibromyalgia went undiagnosed or misdiagnosed because Pain was often the only symptom a patient could describe. There are no other outward symptoms and nothing comes back in the blood tests or x-rays that a doctor might order. It’s only through using the 18 Tender Points and determining how many of them you have that a definitive diagnosis can be made for Fibro.
Other diseases often come with outward symptoms – the “butterfly rash” of lupus, the enlarged joints of Rheumatoid Arthritis, the dislocating joints of Ehler Danlos, the varying symptoms of MS – all of them a visual reminder that there is something wrong with a person. Fibro doesn’t present itself that way, and so a person can often look “normal” like everyone else, yet be in a flare up.
So how do you handle it when the people who are closest to you don’t believe you are ill or doubt the severity of your illness. The first step is to educate them on what Fibromyalgia is: a disorder characterized by widespread pain, which causes many symptoms like extreme fatigue, sleep issues, memory loss and mood issues. It is essentially a very painful, exhausting disease, for which there is no cure and few treatments.” It is becoming much more recognized in the Medical field, unlike in the past, and is well accepted as a legitimate condition, just like arthritis, Lupus, MS, etc.
Basically, your brain miscommunicates with the nerves in the spinal cord and sends out the wrong messages to your body, resulting in an overload of symptoms. This graphic may be helpful in showing you just some of what you can experience:
And this is the reason it’s such a hard disease to diagnose because these symptoms are often looked at just on their own, and not seen as part of the bigger picture. It’s no wonder people look at us and think we’re crazy. To have all these symptoms and yet still look perfectly normal on the outside…well, I’d wonder too perhaps. That’s where the education comes in. The more we teach people about Fibromyalgia and how it mimics so many other diseases, the more people will realize just how huge a burden we are carrying every day.
Nobody wants to be told they look awful though, so how do you break this Catch-22? You want people to see you as you really are, but you don’t necessarily want to look ill at the same time. Are you obligated to dress up and put on makeup everytime you go out, just to look “good” for strangers? Of course not, but I am advocating that you do it for yourself if you’re able. Run a brush through your hair, throw some lipstick on, go for a trendier haircut or a manicure. Never do it for someone else though and never let a stranger’s comments get to you. Only you know how you’re feeling at any point and sometimes it’s just not possible to do these sorts of things. Pain may get in the way, or finances or depression…in these times, just do the best you can with what you have in the way of energy and time and desire.
Remember…you are perfect just the way you are…everything else you do is a bonus.
Education of others is key, and I truly believe that the more we can share about Fibromyalgia and other Invisible Illnesses with them, the more they will understand what we are going through, and the more compassionate they will become. Perhaps then they will stop commenting on how “fine” we look, and will start seeing us in a true light. Maybe they will see our struggles, our problems, our symptoms and what we have to go through on a daily basis just to survive and finally understand how difficult our lives truly are. Then and only then will come the appreciation and admiration we’ve been waiting for.
I’ve been thinking lately of how lucky I am that despite the fact I live with Chronic Pain, Chronic Fatigue Syndrome, Fibromyalgia and Invisible Illnesses, I’m actually quite healthy. I know that sounds like an oxymoron, but I rarely come down with colds, I can’t remember the last time I had a flu or stomach bug or even when I could say I was “sick”. I try to remember to get a flu shot each year because I’m Diabetic, but it didn’t happen last year and so far this year, I haven’t made it to a clinic either. It’s also in my best interest to get one, because since having surgery for severe Gastric Reflux Disease in 2004, I am unable to physically vomit – if I get sick where vomiting becomes an issue, I have to go to the hospital and have a nasal gastric tube placed to remove my stomach contents. Not fun!!
As the old saying goes, aging ain’t for sissies! When you live with Fibromyalgia, you live with all sorts of “side effects”. This diagram displays some of the many “extras” a Fibromite can expect to experience:
These are all common symptoms and it can be difficult to tell them apart from other illnesses, which makes it extremely important to be aware of your body and to note when something feels “off” or different than what is normal for you. We are generally quite in tune with our own bodies and are quickly able to determine when a new symptom appears that doesn’t fit in with our usual symptoms.
What happens though when you do experience something that you’re unsure of? Your first step should always be to see your Primary Health Care Provider anytime something comes up that is markedly different than your normal. It could be one of Fibromyalgia’s many symptoms, but it’s always better to be safe. I remember one time many years back when I started having severe pain in the lower left quadrant. It happened when I was living in Calgary and I had just finished a volunteer shift at the Calgary Stampede grounds. I’d eaten a corn dog and a few minutes later, was suddenly hit with terrible pain in my lower left side. I could barely walk but managed to make it on to the C-Train (the Lite Rapid Transit) and then called my husband to pick me up at the station to take me to the hospital. It turned out that a cyst that I didn’t know I had on my ovary had burst. I was prepared to put it down to something Fibro related and the only reason I got the proper diagnosis is because the pain was so bad, I went to the ER.
It’s easy to be dismissive of everything we feel and call it Fibro related, so we have to be careful not to fall into this trap. How do you tell the difference between Fibro related pain and something new or different for you? Here is a checklist to use:
Familiar or not – have you felt this same symptom before, or does this feel like something “new” to you?
Does it last longer than usual? This could potentially be a new situation that needs attention
It it more intense than usual? This could be the sign of a new problem
Is it in a new part of your body? This is more likely the sign of something new
Did it start suddenly or gradually? Gradual pain is more likely to be Fibro related.
Does something just feel “off” to you? Trust your instincts!
It’s recommended that everyone go for an annual checkup, but it’s especially important that you and your doctor stay in touch with how you are doing, outside of your Fibromyalgia. Don’t forget about the rest of your health.
Speaking of health, I want to share this new Health Alphabet. It may be helpful in future medical discussions, especially if aging is becoming a concern for you:
Okay, a little humour never hurts, but when it comes to Fibromyalgia and changing symptoms, you do need to be careful not to overlook something that could have the potential to be serious. Always trust your instincts about how you’re feeling and see your doctor if something just doesn’t seem right. It’s better to be safe than sorry.
Today’s post is from Guest Author John Martinez. John is a writer from California who sufferers from chronic headaches and occasional migraines. He works for Axon Optics, showing migraineurs how to treat their condition using science and clinical research.
Migraines can be, for lack of a better phrase, a real headache. Once you start to feel the symptoms of a migraine coming on, it can be hard to get away from the tumbling snowball of pain, dizziness, and sensitivity hurtling towards you. People with migraines know how desperate attempts to find treatment can be.
Migraine glasses are a hot item on the market right now, but if you’re skeptical about whether they work to prevent or treat migraines, you’re not alone. This guide can help you decide whether or not migraine glasses are for you and how they can help relieve common migraine systems.
What Are Migraine Glasses?
Migraine glasses (also known as “precision tinted glasses,”) have FL-41 lenses to block out specific light wavelengths that trigger photophobia and light sensitivity symptoms. Photophobia and migraines are closely linked; many migraine sufferers find that migraine glasses relieve migraine symptoms or prevent common migraine triggers.
Let’s go back to a word that you might not have seen, but probably have experienced before: photophobia. No, it’s not the fear of photographs or selfies. Photophobia isn’t the fear of light either, but it is a word used to describe an extreme sensitivity to light. People with photophobia experience a range of symptoms. Some people may be only sensitive to bright lights, whereas different types of lighting (fluorescent, LED, sunlight, etc.) may be more triggering.
How Migraine Glasses Help Patients With Photophobia and Migraines
Experts at the John A. Moran Eye Center at the University of Utah Health Sciences Center have been studying the causes and effects of photophobia for quite some time. They discovered that certain wavelengths are more triggering than others. Blue-green wavelengths were most “dangerous” to people with photophobia.
These awesome Utah experts also discovered that a special type of lens filtered out these annoying blue-green wavelengths. These lenses (also known as “FL-41 lenses”) have a rose tint. Migraine glasses use FL-41 lenses to help people with photophobia get through the day or a migraine with mitigated symptoms and an increased tolerance to light.
These glasses aren’t just designed to be worn at the time of a migraine. A 2014 study revealed that three out of four migraine sufferers experienced light sensitivity throughout the day, even after they stopped experiencing migraine symptoms.
“Why can’t you just wear sunglasses?”
This last finding is especially important. Photophobia doesn’t switch on and off like a light switch. Moving from a dark to lit room can trigger photophobia. Long periods of screen time can trigger photophobia. Flashing lights can trigger photophobia.
Even if these lights aren’t particularly bright, they can still trigger photophobia – after all, people with photophobia have a lower tolerance for many different types of light. And it’s hard to determine when or where these triggers might appear in your daily life.
Many people ask themselves (or migraine sufferers) why they just can’t wear sunglasses to treat photophobia. For many people, the answer isn’t to make the room darker – it’s to avoid the types of wavelengths that are most triggering.
Plus, who wants to wear sunglasses 24/7?
Light Sensitivity Relief Helps Reduce Other Symptoms
The effects of migraine glasses aren’t just limited to light sensitivity. Often, migraine sufferers link light sensitivity to pain, anxiety, and discomfort. When walking into a room with bright lighting or looking at your work computer is more comfortable, your day becomes easier and you can avoid migraines triggered by stress or discomfort.
Migraine Glasses Aren’t Just For People With Migraines…
So the answer to our question (“Do migraine glasses really work?”) is: yes. But migraine glasses don’t just help people who suffer from migraines.
Migraine glasses have been tested and proven to help patients who suffer from benign essential blepharospasm (BEB.) People with BEB often experience rapid eye blinking or eye spasms. They also experience a similar type of photophobia as people with migraines.
Other studies have shown that migraine glasses can help to relieve photophobia symptoms in blind migraine sufferers and blind people with photophobia. That’s right; even blind people can experience migraines and sensitivity to light. Photophobia is much more common than you might think, especially if you have migraines.
Migraine Glasses Might Be For You
You might have read to this point and thought, “I don’t have photophobia, so these glasses probably won’t help.” Pump the brakes. Unfortunately, a lot of migraine sufferers don’t realize they have photophobia. Light sensitivity is often overlooked or misdiagnosed alongside all of the other insufferable side effects of migraines.
Researchers at the Baylor College of Medicine asked 84 migraine sufferers whether or not they suffered from photophobia. Twenty-four percent of respondents said they didn’t. After more questioning, the researchers discovered that over 90% of participants did experience some sort of light sensitivity or photophobia.
Talk to a medical health professional about the symptoms of photophobia and how they may affect your migraines.
Where To Find Migraine Glasses
When you start shopping online for migraine glasses, know that you will come across a very similar cousin: blue-blocking glasses. These glasses (also known as “blue light” glasses) help to filter out blue wavelengths that we absorb when we stare at screens. Users offer rave reviews of blue blocking glasses…but these users don’t always suffer from migraines.
The difference between FL-41 glasses and “blue blocking” glasses is that FL-41 glasses focus on the wavelengths that specifically trigger photophobia or migraines. These wavelengths can be found across the blue-green spectrum. There is no harm in trying blue blocking glasses, but people with photophobia may find migraine glasses to be more effective than blue light glasses.
Look for glasses that specifically have FL-41 lenses. Axon Optics, for example, are a popular brand of light sensitivity glasses (migraine glasses) that use FL-41 lenses to relieve symptoms of migraines and light sensitivity.
FL-41 lenses don’t just come in one type of frame or style, either. Migraine sufferers can even find relief in FL-41 contact lenses that have been recently developed for the market.
If you suffer from migraines, migraine glasses are definitely worth a try. Enjoy a life with decreased light sensitivity and reduced migraine symptoms. See the world through rose-colored glasses…literally and figuratively!
If you read my last post, you know that I live with a number of health issues, and have for many years. What I didn’t talk about was a more recent issue that has come up involving a bump on the back of my left ankle and my Achilles tendon that is tearing away from the bone.
The bump is called a Haglund’s Deformity. I’ve had it for over a year now and it seems to have developed after I had my right hip replaced, perhaps in response to a changed gait in my walking. I didn’t notice it at first, not until it became painful. What my Physiatrist (my pain doctor) and I didn’t realize is that it was also affecting my Achilles Tendon and that tendon was slowly pulling away from the bone. It wasn’t until I could no longer walk without constant pain that we came to understand the full severity of what we were dealing with.
I was sent for x-rays and the results showed the truth. Since November 2018. I’ve been wearing an Air Cast to help protect my ankle and reduce the pain when I walk. We’ve tried Botox in the calf muscles to try to tighten the tendon so it will reattach to the bone, but if this doesn’t work, it’s going to mean a complicated ankle repair in surgery.
So, why I am I sharing this with you? Because this isn’t the only surgery I’m facing in the next little while and I want to talk about resilience.
Resilience is a funny word. The official definition is this:
1. the capacity to recover quickly from difficulties; toughness. “the often remarkable resilience of so many British institutions”
Now, I wouldn’t say that definition number 2 is all that appropriate as I certainly don’t feel all that “elastic” or “springy”. I do agree with the first one though. I think I have a remarkable ability to recover from difficulties. With everything I’ve been given in life to handle, and each new challenge I’ve been given to face, I’ve been able to rise to the occasion and deal with it as it’s happened.
As I said, I am facing another surgery this year and it’s one I never thought I’d hear myself say – Brain Surgery. Because of my Trigeminal Neuralgia, we have come to the point where I’ve exhausted every medication out there and I’ve been left with no other options for treatment. I am meeting with the Surgeon on April 30th and the surgery we will be discussing is called Microvascular Decompression. It has an 80% success rate, which is the highest of all the available surgeries, and is the least likely to cause lasting facial numbness afterward.
In Microvascular Decompression surgery, the Neurosurgeon creates an opening in the skull behind the ear on the affected side and using delicate tools, places a sponge between the nerve and the blood vessel causing compression, which in turn reduces the irritation caused by the nerve. It also prevents almost any facial numbness from happening which is a common side effect in most other surgical procedures, such as Sensory Rhizotomy, Gamma Knife Radiosurgery or Peripheral Neurectomy. A small titanium plate is used to replace the bone removed and is put into place with tiny screws.
A sponge is inserted between the nerve and the blood vessel, usually the superior cerebellar artery, causing compression.
A sponge is inserted between the nerve and the blood vessel, usually the superior cerebellar artery, causing compression.
After the surgery, you spend a night in the ICU and then 1-2 days in hospital before being released to recover.
It all sounds pretty scary, but it’s my best hope for relief from this insidious pain. I’m now averaging a flare up every week and they generally last for 12 hours at a time. It’s sheer agony when they happen – there’s a reason this condition is called the suicide disease.
So, how do you bounce back from something like this? Where does the courage come from? Part of it for me is my faith in God. Part of it is my natural positive outlook on life. My Dear Readers know that my motto is “there is always hope”. I end each post with those words, they are tattooed on my left arm, they are my favourite words from the movie The Lord of The Rings, when Aragorn is talking to the young boy just before the Battle at Helms Deep. They remind me that no matter what we are facing in life, things could be worse. I know that might sound silly, but truly, they could be. I could be facing a terminal illness, not just an issue that causes tremendous pain. There could be NO solution for me at all.
The thing is, I believe we have a choice in how we react to news, good and bad. Being joyful is easy in good times, but I choose to be joyful in the bad times too. I choose to stay positive in the dark days. I choose to believe that things can get better. My attitude is one of gratitude despite the circumstances. And I encourage others to try to do the same thing. You have a choice. Be resilient. Fight with all you have inside you. Choose to find the joy in your circumstances, as small as it might be. Remember…
I thought I’d start out the year with a refresher course on the conditions I live with and how blogging has had such an impact in my life. Because of my blogging, I have had chances to be interviewed in a Canadian National newspaper, on two different podcasts, and several different articles online. The various conditions I write about are because of the fact I live with them and am personally acquainted with them. So, without further ado, here we go:
So I’ve talked about my Chronic Pain from Fibromyalgia and Osteoarthritis, and when I say I have arthritis in all my major joints, I’m serious. I have it in my shoulders, elbows, wrists and fingers, my cervical, thoracic and lumbar spine, left hip (right hip has been replaced), knees, ankles and toes. Some areas like my left hip and right knee are quite serious and will need replacing, but the rest I’ll have to live with.
Meanwhile, my thoracic spine has a different type of bone condition called Forestier’s Disease or D.I.S.H., which stands for Diffuse (Widespread) Idiopathic (Of Unknown Cause) Skeletal (Referring to the Skeleton) Hyperostosis (Excessive Growth of Bone). It forms in the shape of a bone spur, but instead of a normal spur that could be removed, it looks more like melted candle wax on the spine, so nothing can be done about it.
I also have regular bone spurs on my right hand – I had one removed from inside my pointer finger as it grew through a tendon, and there is a second one on the outside of my middle finger growing through the knuckle. Both have been very painful and interfere(d) with typing and writing.
My Type 2 Diabetes has been with me for 8 years now and is mostly under control. I go for regular blood tests every 3 months, to get my A1C numbers that show my average blood sugar levels for the previous 3 months. Generally speaking, I average around 6.9 to 7.2 which is slightly higher than the 5.9 – 6.2 my doctor would like, but I do my best. I use long acting insulin at night, 14 units which does a good job at helping to keep things under control. I’m trying to eat better, but I’m a sucker for sweets and it’s hard to be disciplined.
So, what else is on that list. Ah yes, the ever lovely Gastroparesis
Now, the way they determine if you have this or not is through something called a motility test. In my case, they wanted me off ALL of my meds first to make sure they weren’t contributing to the problem, so for 2 days prior to my test I had to quit my medications cold turkey. That included my meds for Fibromyalgia, my anti-psychotics AND my opioid narcotic for pain. Do you have any idea what going through withdrawal is like? It was horrendous. I had the shakes, the runs, I couldn’t eat or sleep, and for those 2 days, I alternated between thinking I was dying and wanting to die to having to feel better in order to die.
On the day of the test, I went to the hospital to where the Nuclear testing is done. I knew that I was going to be eating an egg sandwich with a radioactive tracer in it and that tracer would be monitored through a series of special x-rays, but I explained to the nurse that everything I ate was immediately running right through me like water. She was so sweet…she “reserved” me a private bathroom, brought me my sandwich and told me to eat as much as I could while I sat there. Talk about embarrassing!!! It’s embarrassing writing about it!!! But, I managed just over 3/4’s of it, which she said was enough. She brought me into the x-ray room where there was a gurney to lay on, and then gave me a warm blanket.
The first pictures were taken every 2 minutes, so I just sat. Then they took them every 5 minutes apart, then 10 minutes apart, then 15, then 30 and finally 2 pictures 1 hour apart each. In between, I slept on the gurney, and my nurse brought me as many warm blankets as I wanted. She also brought me a cold wet face cloth for my forehead. When it was all over, I gave her a big hug and thanked her for being so kind. Then I took my medications asap!!!!
The tests showed that I have a moderate degree of low motility so my food sits in my stomach for a long period of time before moving on to the intestines. This explains why I always look bloated and pregnant. There are medications that can be taken, but I’ve asked my doctor if we can just hold off and wait on that for now. This is more of an inconvenience than anything right now, and I just don’t want any more drugs in my system than I absolutely need. If the problem becomes hugely bothersome, we’ll revisit it, but in the meantime, I’ll just try to watch what I eat, drink more water and try to exercise a bit more.
The Internal Pelvic pain is because I have had a number of pelvic surgeries over the years, so there is a lot of internal scar tissue left over that has attached itself to things like my bladder and bowel, etc. There are occasions when I move a certain way, and those adhesions stretch very painfully – it feels like velcro being ripped apart except it’s my body doing the ripping. It takes my breath away sometimes, it’s so painful, but it only lasts for a minute or two, then it’s gone.
Which leads to Hypothyroidism. For a long time, I assumed that Chronic Fatigue Syndrome was the only reason for my constant exhaustion, as my Thyroid numbers always came back normal on blood tests done every three months. One day though, my thyroid went rogue and those numbers were crazy. I had been especially tired…like dragging my ass tired, needed toothpicks to keep my eyes open tired
Oohhh, that is NOT a good look on me!!! My doctor put me on meds and I could feel a difference in a very short period of time. On my next 3 month course of blood work, everything was back to normal, so now I take Synthroid on a daily basis for the rest of my life, to ensure I have a properly working system. So glad that was an easy fix!!
So there you have it. It’s a tough road to walk, I have to be honest. I live with pain 24/7 and have for almost 30 years now. Suffice it to say that you have to be mighty strong to live like this, to get through the day-to-day of actually living in pain. I know some people who just couldn’t. They tried so, so hard, but in the end, their pain was too much for them, and they took their own lives.
I’m a huge advocate for assisted suicide for people who live with severe, intractable pain. We take better care of our pets when they are hurting than we do our humans, and I think that is just plain wrong. I believe every human has the right to choose to die with dignity and I’m glad our Government has come on board with this. I know it’s not perfect, but at least things have started and that’s the main thing.
One thing having all these conditions HAS done though is that it’s given me a platform to blog about them and to discuss them as a Patient Partner in my volunteer work. I live in Langford, BC Canada and I belong to an organization called Patient Voices Network. They help take the voice of the patient and partner us with Heath Care Organizations who need Patient Advocates for the work that they are doing. I’ve been involved in committee work, focus groups, conferences, quality assurance forums, seminars and more because of PVN. The educational experience I’ve received is on par to anything I attended in my working life and in fact, when I attend anything in their offices in Vancouver now, it’s like being greeted by family – I know everyone and they all know me, I’ve been there so often for meetings.
I currently sit on 4 different committees: I am a member of the PVN Oversight & Advisory Committee, I currently sit on the Clinical Resource Committee for the BC Emergency Physicians Network , and I accepted a role with the Laboratory Quality Council Committee. We are responsible for all Labs on Vancouver Island as well as all Medical Blood Collection Stations.
Most recently, I took on a new role as committee member on the Measurement System for Physician Quality Improvement- Surgical Group. I am surrounded by top surgeons in Cardiac Care, Orthopedics and Neurology, plus high-ranking members from the Ministry of Health, the BC Patient Safety & Quality Council and other Health Organizations – and then there’s me. The lone patient voice to represent the masses. It’s a huge responsibility and one I take very seriously. I’ve already spoken out to let them know that while they see quality one way, I as a patient see it differently, and I expect my voice to be heard. It was empowering to have them tell me that I am the whole reason the others are there, because it’s all about the patient in the end.
So all this adds up to some pretty amazing experiences for me because of the pretty extraordinary pain that I live with on a daily basis. I have been truly blessed in my life, and I’m fortunate to be able to share it with you, my Dear Readers. Thank you for taking this journey with me. I hope to bring you more articles this year about Chronic Pain, Chronic Fatigue, Fibromyalgia and other Invisible Illnesses. And remember…
Do you find yourself feeling more pain after the holidays are over? More physical pain seems natural because of all the running around that we do with Christmas and New Years and the extra work that happens to make the holidays special. What about the post holiday blues? Do you find yourself feeling more mental pain when the holidays are over? More depression, or more Seasonal Sadness? How do you manage that and where is it coming from?
Some of it comes from the Holidays themselves. Often, we project what we want them to look like instead of accepting the reality of what they actually are for us. We want the perfect family around the perfect tree with perfect presents and everyone getting along in perfect harmony. What happens instead is the stress of buying, decorating, cooking and cleaning all while appeasing children, spouse and family members who may or may not be speaking to each other on the big day. No wonder you’re left with a huge let down after the New Year rolls in.
Financial stress plays a huge role as well, once those credit card bills start showing up in January. Even if you swore you wouldn’t have a credit card Christmas or Hanukkah, chances are you’re still looking at some expenses that you weren’t expecting, and now you need to do some budget adjusting. That’s enough to make anyone feel blue. And if you’re one of the many people who put your entire holiday shopping on your credit card, you’ll be feeling the hit even harder.
The weather also plays a huge part in how we feel in the New Year. Depending on where you live, you could be seeing sunshine and cold temperatures, mild temperatures and rain, or bitterly cold and snow, or any combination in between. The days are short and darkness prevails. Seasonal Affectiveness Disorder is a real condition that deeply alters the lives of more people than we realize. Getting out into the natural sunlight is the best remedy, but the alternate is to use a special lamp to get the light you need to function properly during the winter months.
How else can you combat these Post Holiday Blues? Here is a list of suggestions that might help:
Limit alcohol – Now that the holidays are over, start to limit your alcohol intake, and try not to keep it readily available around your house. Drink lots of water to flush your system and get back to good nutrition.
Get plenty of sleep – Try to go to bed at a specific time each night. Being well-rested can improve your mood and help you feel ready to take on the day.
Exercise regularly – Plug in your headphones and pop out for a walk around the block a couple of times a day. A quick 10-minute walk will get your heart rate up and release mood-boosting endorphins.
Learn to say “no” – Overscheduling and not making time for yourself can lead to emotional breakdowns. Learn how to say “no,” and stay firm on your decision.
Reflect on the Special Moments –
Grab a hot tea or hot chocolate, sit by the fireplace, and reflect on what you loved about this holiday season.
What was the best conversation you had?
What was the most thoughtful gift you received?
What was the funniest thing that happened?
What was one disaster that turned into a blessing or a great memory?
Try Something New – New Year, new hobbies! Make up your mind to try something new this year. Take a class, return to an old hobby, or pick up a new one.
Make a Budget – No one likes to dwell on financial stuff, but vow to make a budget this year and then stick to it. You’ll be amazed at how much stress relief this can offer you when you see exactly where you money is going and how much you can actually save every single month. Buy software for your computer to help you, download an app or get a book to make it easier.
Volunteer – If you can spare a bit of time each week or each month, consider doing some volunteer work in an area that interests you the most. From working with kids, seniors, or animals to helping with community arts and theatre, health organizations or your local Downtown Business Association, there are so many places that can use your help. Even just a couple of hours a month makes a difference when we all pitch in together.
Give Blood – Another way to help others, if you are physically able to donate blood, please consider giving. There’s nothing like being a Lifesaver to make you feel good!
Keep a Gratitude Journal – Each day, write down three things you are grateful for.
Can you come up with your own suggestions for this list to make it your own? If and when you do, share your ideas with your friends and in the comment section below. One thing I do want to remind you of is that if the Post Holiday Blues tend to linger on for longer than a month, you may want to speak to your doctor. You could be experiencing something more than just “Post Holiday Blues” and require proper medical care. Don’t ever be afraid to ask for help if you feel dark thoughts or deep depression. There is help available and absolutely NO shame in asking for it. I live with Bipolar Disorder and have to be very careful during and after the holidays that my mania isn’t triggered because I would go on shopping binges.
It’s December 29th and the year is drawing to a close. I want to take this time to simply recap the year and say thank you to my Dear Readers for spending your time with me in 2018.
From the beginning of the year, when I really got started blogging, I started out by writing Happy New Year . My main theme at that time was to talk about my hip replacement surgery which was the real reason this blog came into existance. I had been searching for personal stories of “younger” women who had undergone hip replacements but hadn’t found much, so I thought I’d share my story for others who might find it helpful for themselves. One thing led to another and before I knew it, I was writing about my other health issues, including Fibromyalgia, Chronic Pain, Chronic Fatigue and Invisible Illnesses.
I’ve had the opportunity to share my thoughts about body image, intimacy when you live with Chronic Pain, the sleeplessness that comes with Fibromyalgia and Invisible Illnesss, and how the simple loss of bathing can mean so much heartache. On the other hand, I’ve been able to share about gratitude and finding joy on more than one occasion, so I’ve tried to focus on the positives as much as possible, whenever possible.
I couldn’t do this without you. Without my Dear Readers, there wouldn’t be much sense in putting this out there, so I appreciate each and every one of you who comes to my blog and reads what I have to say. You may not comment on every post, heck…you may never comment on a post I write, but the numbers don’t lie. My stats show that you are there and that you keep coming back. In fact, when I took a week off and didn’t do a thing to market the blog…no Pinterest, no Twitter, no Social Media at all, the numbers dropped, but a bunch of you still came by to see if there was anything new.
You can see where I was away for the week. On Nov. 15th and 16th, I was in Vancouver for a volunteer meeting, and away from my computer the whole time. When I put the effort in, you do the same and come back to see what’s new…the numbers don’t lie, and I am forever grateful.
So, to wrap up 2018, I want to say thank you. You’ve helped me reach a far greater level of success than I ever thought I’d make, simply because you like to read my thoughts. That’s pretty amazing to me. I just want to provide as much information as I can to anyone who is living with Fibromyalgia, Chronic Pain, Chronic Fatigue or Invisible Illness. I want you to know you’re not alone. I’m right there with you and for as long as I’m able, I will continue to write and bring you articles and information to help you thrive.
I wish each and every one of you a very Happy New Year. May you be blessed in 2019 with the very best the year can offer. Remember…
Living with Chronic Pain is no picnic. Intractable pain day after day wears down the body, the mind and the spirit and it can be extremely difficult finding anything good in the experience, but I have found a few things I wanted to share with you. Remember, these are my own personal thoughts.
If you’re a spiritual person, it can deepen your faith. Now, in all honesty, Chronic Pain with no resolution can have the opposite effect and have you turning away from your Higher Power because you haven’t been healed, but I tend to think in the positives anyway. I believe that having Chronic Pain helps you to draw closer to your Higher Power as you find something…anything… to cling to when times are bad. God is an excellent listener and doesn’t mind if you yell at Him – He already knows you’re doing it, so what’s the point of pretending. Go ahead and be angry at Him. Yell, rant, rave, swear…do whatever makes you feel better. He can handle it. And then when you’re done, take a moment to thank Him for listening to you without judgement.
You develop inner strength. Nobody develops inner strength like a person who lives with Chronic Pain. As the hours and days and years go by and nothing about your physical situation changes, there is resilience. It’s the necessary component that allows you to pick yourself back up after setbacks and keep going. To say to the world “I’m not done yet”. It’s the part of you that refuses to give up when others might say “it’s too hard”. Only you can determine your own resilience and whether or not you can keep going, but so far, you’ve had a pretty excellent track record to keep going. You are brave.
Patience really is a virtue. In a world where everything needs to be had RIGHTNOW!! patience seems to be an old-fashioned quality. A person with Chronic Pain learns about patience very quickly – an oxymoron if ever there was one. You wait for appointments, you wait for doctors, you wait for your pain to subside, you wait for tests, you wait for results, you wait to feel better, you wait for answers, you wait, you wait, you wait. Depending on how complex your situation is, there may be several doctors involved in your care, so you wait for all of them to coordinate their schedules to see you and treat you. You wait endless hours for flare-ups to subside. For sleep to come. For pain to stop. For nausea to disappear. For bones to heal. And in all of this, you learn patience because you have no other choice.
You finally have time to… When you’re feeling up to it, you finally have time to do those small things that you never had time for earlier: watch a favourite show on TV, read a favourite book, phone a friend for a chat, go for a massage, get your hair cut, organize the junk drawer, clean up the hobby room, work on a craft, write a letter to send via snail mail, look up a simple recipe to try that isn’t exhausting, order some flowers, send a love note to your spouse, go through your kid’s baby books or old photos, play a computer game, take an online course, go to an exercise class…the list is as endless as your imagination.
You’re forced to slow down your pace. If you’re anything like me, most people with Chronic Pain or an Invisible Illness probably were Type A Personalities at some point in their lives – always on the go, go, go. If you were a doer who was always busy before, you’ve been given a gift to slow down and appreciate life around you. I became fully disabled in October 2009 but probably should have gone on disability about 2 years sooner. I had to really push through those last 2 years, to the point that I often lost the thread of a conversation right in the middle – I wouldn’t have a clue what we were talking about. I couldn’t manage more than one task at a time when I was famous for my multi-tasking abilities and I would jeopardize safety in firefighting drills by not remembering the steps to take to get out safely. By taking Disability and being forced to slow down, I was able to regain those skills again, in a more family oriented situation.
What gifts would you add to this list that you’ve received since experiencing Chronic Pain or Invisible Illness? Does this list ring true for you? Leave a comment below and share your thoughts.