Chronic pain and Invisible Illness are difficult conditions to live with and can lead to social withdrawal and loneliness. When you get sick, not only do you have to process and deal with things like surgeries, recovery, medications, new symptoms and flare-ups but socially you may have to give up hobbies and activities you once loved, making it hard to nurture friendships and relationships with those close to you.
It’s hard for those who love you to understand why you might have to cancel plans last minute or leave during the middle of the evening. Because they’ve never experienced what you’re going through, it’s hard to have a frame of reference. Unless you’ve lived it, it’s impossible to make others understand.
Social Isolation Is Serious
Because of these changes that we have to make – like leaving in the middle of an event or cancelling plans – we open ourselves up to feelings of social isolation, depression and anxiety and guilt.
Social isolation is defined as an occurrence when a person lacks opportunities to interact with people while loneliness is the subjective experience of distress over not having enough social relationships or enough contact with people.
It is possible for a person with a chronic illness to be socially isolated and not feel lonely and someone with a chronic illness can feel lonely, while not being socially isolated. There are several issues that people with chronic illness face that can lead to social isolation and feeling lonely:
Disbelief from others when you don’t have a clear diagnosis
Physical limitations due to pain or fatigue
The unpredictability of symptom onset
The trigger of symptoms related to noises, smells, etc.
Lack of a strong support system (Family and/or Friends)
Changes in employment or financial stability
Loss of hobbies and outside activities
Social isolation and feeling lonely are important health problems and should not be overlooked. The chronic illness population is at an even higher risk for social isolation and this problem should be addressed with your Doctor along with other symptoms and risk factors.
What You Can Do About It
When you are socially isolated and have feelings of loneliness, it can actually make your chronic illness worse. The longer you are experiencing isolation or loneliness, the more you start to develop feelings of shame, guilt, inadequacy, distrust and abandonment toward yourself and others. The more these feelings grow, the less likely you are to seek out real human connections.
So what can you do when you start having these feelings?
1. Recognize loneliness for what it is, and accept that you have these feelings. Self-awareness is important in making positive changes. When you catch yourself falling into old habits, you’ll be able to more quickly turn things around.
2. Use Cognitive Behaviour Therapy (CBT) to help reframe your thoughts to become more positive and open to socialization. This can be done with the help of a therapist or through online courses and over time, can be very effective.
3. Resist the temptation to isolate yourself and start forcing yourself to recognize if this is your “go-to response. Deliberately try doing the opposite of what you’re feeling – instead of retreating into watching TV, take a walk or pick up the phone and call someone. The more you resist the temptation to isolate, the easier it becomes
4. Fill your life with loving positive people who are patient and trustworthy and who truly try to understand what you are going through. They will be your encouragers and biggest support system. Remove negative people from your life…you don’t need their energy.
5. Try one new thing each week that will get you to meet new people. Try an art class, go to yoga, volunteer… anything that will get you to meet new people who like doing things that you like to do.
6. Seek out a support group for your illness. This is a great way to meet people who really do understand what you’re going through. Even an online group is fine to get started as being with like-minded people will help to engage you instead of isolating you.
7. Ask for what you need in your life. Don’t feel you’re being a burden on others…when someone asks what they can do for you to help, they genuinely want to help. Let them…give them the opportunity to be of service to you. Perhaps it’s to invite you out for coffee once a week or to go take a class together. You’ll be helping them as much as they will be helping you.
8. Consider therapy. It can help you explore any deeper issues that might be contributing to loneliness or social isolation. Therapy can also be a great accountability and skills training support to help you manage all of the difficult things you are going through in a safe way.
I am back from taking a hiatus from writing and it feels good to be typing again. I needed the break as my health was really suffering, and then Covid-19 hit and put a damper on things as well.
It’s important for people with Chronic Illness to recognize when they need to step back from life and make some changes. Rest periods are important in our everyday life, but sometimes you need more than that. A break of several weeks or months isn’t necessarily a bad thing…it helps put your brain into perspective and gives the body an important rest as well.
I had found myself struggling with exhaustion. I would wake up in the morning and within a couple of hours, be tired enough to return to bed for a nap. Later in the afternoon, I’d be sleeping again, and then going to bed early, only to be woken in the middle of the night with pain, making further sleep impossible.
It’s hard to heal or feel better when you have a broken sleep schedule. It can cause depression to sneak in, further adding to the burdens you’re facing and combined with physical pain, you’re suddenly overwhelmed.
I’m not saying I’ve overcome the exhaustion, but I’ve managed to learn how to handle it better. I definitely take naps when I need them and I’m following my body’s own rhythm instead of an artifical one imposed on by me. I am fortunate in that I don’t work, so I have the time during the day to rest and relax when needed. By getting the sleep I need, and finding new ways to manage my pain, I’m starting to feel a bit better.
I missed writing, but I think I took time off at the right moment. I’ve basically been housebound since Covid-19 hit – I’ve been out of the house 5 times and all of them have been for medical reasons except for one dinner out. I’m an introvert by nature so it hasn’t been a problem for me to be home alone. My husband is still working as he is an essential employee at his job (supervising at a homeless shelter).
There really hasn’t been much new to write about but I want to make this blog a bit more personal. I’m still planning on adding information pieces for everyone so you can remain educated and empowered, but I’d like to share more of myself in my posts and how Chronic Illness affects me.
Look for posts to be published once a week, typically on Wednesdays. If you have suggestions for subject materials please leave them in the comments below. I’m happy to write about what you want to read.
Thanks for sticking with me during this hiatus. I didn’t lose too many readers and I’m really proud of that. Feel free to share this blog with anyone you know who is living with Chronic Illness. Growth is a good thing!
I want to talk about a subject that every person with Chronic Pain is familiar with and probably dreads…
Going to the Emergency Room
There are several reasons why people with Chronic Pain in particular hate going to the ER. Here are some of the top reasons that have been shared with me over the years.
1. Fear of Being Labelled a Drug Seeker
This is perhaps the top reason most people with Chronic Pain list when it comes to the Emergency Room. Even when you live with a sure diagnosis of a medical condition, if you arrive at the ER in pain for whatever reason, you run the risk of being labelled. This is especially true if you already take narcotic pain medications to treat your condition.
You can present with symptoms entirely unrelated to your chronic illness, but doctors still question you about your reason for being there. If you happen to show up with pain for a reason that’s obvious (a broken bone for example), you still have to deal with some measures of disbelief – it’s happened to more than one person I know. In fact, one friend was asked if she had broken her hand deliberately to get drugs. Scary!
If the reason for your pain isn’t immediately obvious, your risk for being labelled increases and you may even find your treatment to be slower than others around you. Doctors seem to believe that since we already live with Chronic Pain, we can certainly manage “a bit more” without issue. This is a long-held misconception that needs to be addressed in hospitals around the world.
2. Fear of Needing More Pain Medication
You wouldn’t initially think that needing pain medication would be an issue, but when you live with Chronic Pain, you’re probably already taking a drugstore’s worth of medication to manage symptoms and side effects.
Adding more pain medication to our bodies may help in many ways, but we tend to run the risk of more side effects than other people, thus adding to our stress. I happen to be sensitive to Morphine – I have problems breathing, and get severe body twitching, nausea and itching. While all those things can be treated with additional medications, why go through all that when Fentanyl works fine?
The problem with this is when I tell doctors I can’t take morphine and the reasons why, it makes me sound like a drug seeker, saying I would like Fentanyl instead. My requirements are legitimate but it can come out sounding very suspicious. Stressful!!
3. Fear of Being Out of Our Comfort Zone
I hate to go to the Emergency Room and will do everything in my power to prevent it, even living with increased pain, because of the stress of being out of my comfort zone – my home. I know I’m going to be subjected to sounds and lights that are difficult for me to manage in the best of circumstances.
I’m going to have to wait for long periods of time to see anyone, my treatment may be delayed if the doctor has concerns about my use of Opioids for pain management (see above), and my pain levels and stress are going to rise the longer I am there. This is in addition to whatever the reason is that brought me to the ER to begin with. I’m already stressed and these added things just make the whole situation more challenging.
4. Fight or Flight Reaction
If I end up with a doctor who doesn’t believe my pain is legitimate, my adrenaline or “fight or flight” reflex becomes engaged. I suddenly find myself having to defend my original illness, along with dealing with the reason I’m there to start with. I don’t want to get into a fight with a doctor if I DO need pain meds – I want them to help me by recognizing my need is real.
For this reason, if treatment is taking a long time, some people choose to “give up” and just go home to live with more pain. This then backfires when you truly can’t handle the pain on your own, and back you go, like a yo-yo. It reduces your credibility as a patient. Unfortunately, when you are treated badly by the ER doctors, it’s hard to sit by and put up with that. Stress increases again, and with that stress comes more pain…which causes more stress.
It’s a circle of misery that could easily be handled if doctors would stop and listen to us right from the start. Too many times, we’re not given the opportunity to speak up and share what’s going on once they find out we have Chronic Pain. You could have a broken arm with bones sticking through, but as soon as doctors hear “Chronic Pain”, they seem to harbour certain assumptions about you.
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5. Wondering if My Pain IS Legitimate
When you live with Chronic Pain for whatever type of condition, there’s a good chance you’re going to have multiple symptoms of your illness. If that illness is flaring up beyond your control and you go to the Emergency Room for help, you may question yourself on whether you really need to be there.
Sure, you live with pain daily, but is this so urgent that your doctor can’t take care of it in the next day or so? Well, it’s a tough call, but I’ve always believed that if you are in enough pain to consider going to the ER, you should probably GO to the ER!!
Now is not the time to second guess yourself. For example, I once experienced chest and jaw pain that was different from anything I’d felt before. I didn’t think I was having a heart attack, but the pain was unbearable and I knew it wasn’t going to respond to heat packs or ice packs.
It turned out I was having a severe and unusual reaction to a new Diabetes drug I had just started and I was hospitalized for 3 days while a bunch of tests were run, and then to let me rest on IV’s and pain medications. In hindsight, nothing bad would have happened to me if I’d stayed home, except I’d have been in excruciating pain for days. I would have gone to see my Family Doctor asap, but I’d also have put myself in misery for days that I didn’t need to be in pain.
By following my instincts, I received top notch care and was treated legitimately like a person who was in pain and needed help.
Ways to Improve Your Emergency Room Visit
There are several things you can do in advance to help improve your visit to an Emergency Room.
1. Make Sure You Have a Regular Family Doctor
Even if your ER visit is for something completely unrelated to your Chronic Pain, having a regular Family Physician shows that you are dealing with your health on a regular basis. This helps to legitimize yourself as someone who cares about their overall health and is doing everything they can to help themselves.
What happens if you don’t have a Family Physician? In some countries, finding a Family Doctor is next to impossible. Attending the same Walk-In Clinic or Urgent Care Centre is the next best thing you can do for yourself, along with getting your prescriptions written by the same location.
2. Try to See Your Family Doctor First
If it’s at all possible, try to see your Family Physician before going to the ER. If you can, take a letter from the doctor with you explaining his findings and recommendations. This can help to speed up service in the ER (though it doesn’t always work).
Depending on the circumstances, this shows you’re using the emergency room as your treatment of last resort, as opposed to the primary place you go for pain medication.
3. Get Your Prescriptions Filled by the Same Pharmacy
One way to ensure legitimacy regarding your medications is to have them all filled at the same pharmacy. This allows doctors to do a quick search to make sure you’re not getting multiple prescriptions filled by multiple doctors.
4. Bring a List Of Your Medications with You
At a minimum, try to bring a list of your medications and dosages with you to the ER. If possible, take the actual bottles with you. This goes a long way to showing the ER doctors that you have legitimate health concerns, and that you know what you’re taking and why.
You might want to consider having a letter from your doctor on hand that outlines your Chronic condition and the treatment plan you are under. If you are going to the ER because of a problem relating to your condition, it can help to speed things up for the doctors if they know what’s been done in the past.
5. Co-operate with The ER Personnel
This may seem like common sense, but when we’re in a panic because of pain and/or injury, we tend to forget our normal sensibilities. Try not to become demanding when you get to the Emergency Room. You’re not the only one there and you have no idea what the other patients are going through.
Your pain or injury may very well be serious, but will be triaged appropriately according to the nurses. YOU might not agree with their assessment but without knowing the big picture, it’s impossible for you to say you’re the most critical person to be seen, even if you feel that way.
Work with the ER personnel, stay calm and cooperative and you’ll generally find yourself being treated respectfully by nurses and doctors who genuinely care about your health and well being.
Conversations with Emergency Room Doctors
For an excellent list of ways to communicate with the ER doctors to ensure you get quality care, this article from Practical Pain Management is a great patient resource. It provides you with things you should and shouldn’t say to make your ER visit most effective.
I do a lot of Patient Advocacy volunteer work and was speaking at a conference full of doctors. I told them of being mistreated as a drug seeker at one Emergency Room I went to when the pain from my Atypical Trigeminal Neuralgia was overwhelming me. The doctors there assumed because I was in pain, pain medication is what I was looking for.
I wasn’t seeking pain meds (they wouldn’t have worked) but treatment in another form (I had the protocol written down from a specialist), so it was especially frustrating to not be heard.
One of the doctors at the conference spoke up and told me that on behalf of doctors everywhere, he apologized for that kind of treatment and said that it was unacceptable. He said that all ER personnel need to check themselves at the door before bringing in attitudes like that…his belief is that if someone presents at the ER in pain, they are there because they’re in pain. It’s up to the ER docs to determine if it’s physical or mental and how to best treat the patient, no matter what.
I was so touched by his comments…and I told him that the best thing he and everyone else in that room could do was to believe their patient. Yes, there are going to be drug seekers, but the majority of people who show up at the ER don’t want to be there, but have no choice. Believe them, listen to them and help them. It’s really that simple.
Today, I’m sharing a Guest Post from my friends at Roots of Being. I hope you enjoy!
Many adults often meditate for both mental and physical reasons, but what many don’t realize is that meditation can be very beneficial for kids as well. In fact, a study done by UCLA showed that meditation encourages children to overcome their fearsand even works to improve their memory.
If you are interested in learning more about how meditation can be beneficial for kids, you’ll want to keep reading. Below you’ll discover more about this practice and some ways you can inspire kids to try doing it.
What is Mindfulness Meditation?
Mindfulness Meditation is an attention technique that is designed to help you stay calm and relaxed. It is meant to help reduce stress in the body by teaching you how to deal with anxiety strong emotions, which often overwhelm the brain.
This is particularly useful in children, who often have a hard time expressing their emotions verbally.
What Can Meditation Help With?
Meditation can be useful for many things. While it is usually done for relaxation purposes, meditation can also be used to help with:
Learning how to properly communicate with others
Dealing with fear and grief
Do Kids Need to be a Certain Age to Meditate?
Kids of all ages can meditate, although young children might not fully understand what meditation means until they get older. Certainly kids as young as 4 can learn meditation techniques and benefit from the practice. But it’s usually around the ages of 9-12 years old that children start to understand what meditation is and why it is important.
The Benefits of Meditation for Children
You’ll find that meditation comes with plenty of benefits for children. Below are a few of them.
It Helps to Increase Their Attention Span
Kids are often energetic, and if something doesn’t interest them, they quickly turn their attention to other things. However, this isn’t always possible in the real world. Meditation works to teach children how to focus on things, even those that might not be the most exciting. Due to this, it can increase their attention span in various areas.
It Reduces Stress
Children often don’t know how to handle stressful situations well which can lead to various side effects, such as depression. By meditating, they will work to train their brain to be calm which can significantly reduce stress and tensionin their body. It also helps them to be more aware of their surroundings and teaches them how to deal with situations that might be scary.
It Can Help Them Be More Compassionate and Positive
Numerous studies have shown that meditation can help to teach kids how to be more compassionate. This is because meditation teaches them to have more perspective and emotional control. Because of this, meditation can help them learn to be kind and understanding in numerous situations.
Meditation can also help kids to be more positive as it reduces stress and promotes self-discipline. Meditation will work in the subconscious areas of the mind which often contains thoughts that can lead to depression and negativity. Due to this, it not only keeps kids positive, but happier as well.
It Works to Reduce Obesity
Obesity is a common problem in many kids today. We’re up to the point where approximately one in three kids in the U.S. is overweight. While obesity can be caused by a poor diet or genetics, it can also be due to low self-esteem, stress, and depression.
Meditation works to help reduce the chances of a child becoming obese due to reasons such as these. Mindfulness can help build up a child’s self-worth and can teach them they have an important place in the world.
It can also help those who might be overweight improve their health by encouraging them to be aware of their actions and what they are doing in the present moment. This can work to reduce inattentive eating.
It Helps with ADHD
Attention Deficit Hyperactivity Disorder (ADHD) is a medical condition that many children suffer from which can cause them to make very impulsive decisions and be hyper. While medications can be taken to help with it, they sometimes come with a few side effects, such as headaches and moodiness.
Meditation is a natural solutionfor ADHD as it works to strengthen the brain’s prefrontal cortex – the area that is used for decision making, expressions, and social behavior. It can also release serotonin and dopamine in the body which work to calm the body down while also improving memory, digestion, and temperament.
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Ways to Help Children Meditate
There are a few ways you can teach kids how to meditate. Below are some kid-friendly options to try.
Deep Breathing Techniques
A great way to show kids the power of meditation is to have them try deep breathing. You can teach them to take a deep breath, hold it, and then slowly let the air out. You can compare it to them blowing up a balloon and then letting the air out of it. To help teach them how to slowly let out air, you can have them make soft noises when doing so.
An important aspect of meditation is to learn how to stay present in the moment. You can teach kids this vital principle by having them work on their observation skills. To do so, you can have them use their senses to observe what is around them. You can have them touch, smell, or taste things as a way for them to not only learn, but stay grounded.
Have Them Blow Bubbles
While this might strike some as odd, blowing bubbles is a great way to teach kids about meditation and mindfulness. You can have kids blow bubbles while also teaching them how to control their breathing when doing so. Once they blow a bubble, have them carefully watch it float away and allow them to describe what it is doing and what it looks like.
Meditation is incredibly important to introduce to kids as a way to help them naturally deal with problems such as stress, depression, and poor concentration. It not only is easy for them to do, but has been proven to help them be happier and healthier.
For more information on meditation of all sorts, visit RootsofBeing.
Let’s start the New Year with a review of 10 Symptoms you may experience with Fibromyalgia.
Fibromyalgia is a tricky condition to live with as there are many symptoms you can experience beyond Pain and Fatigue. Here are 10 of the top symptoms you may experience and how to manage them.
1. Brain Fog
This is a cognitive impairment that causes problems such as temporary loss of memory, forgetting words or mixing up words, losing your train of thought, or saying things that don’t make sense. It can be frightening when it happens, as these are also signs of other conditions, such as Alzheimers Disease.
Your doctor can do some mental testing to make sure the symptoms you’re experiencing aren’t being caused by some other condition. Ways you can help yourself include keeping a notebook with you to write down important information, taking a moment to pause and collect your thoughts, and keeping a sense of humour about the situation. If you tend to panic about having this happen, laughing is a good way to keep things light while allowing you to start over with what you were saying.
2. Jaw Pain
Jaw pain in the joints on either one or both sides can be mistaken for TMJ (temporomandibular joint disfunction). Pain and swelling are the common symptoms of jaw pain along with stiffness and being unable to open the mouth without pain.
Gentle stretching exercises and muscle relaxants may be helpful in managing the pain. If only one side is affected, try chewing on the other side to relieve pain. If you hear popping or clicking, or if your jaw seems to be “out of joint”, see your dentist to rule out TMJ or other conditions.
3. Urinary Problems
If you are having difficulty with urinating, whether it’s a problem with urgency, leakage or straining, it’s good to check with your doctor to make sure there’s no underlying problem.
Having Fibromyalgia can affect the bladder and kidneys, causing the above symptoms. Some solutions include urinating on a schedule, doing Kegels, seeing a Pelvic Floor Physiotherapist, and using bladder control products for leakage issues.
4. Body Temperature
People with Fibromyalgia may have difficulty in regulating their body temperature. In my case, I can have cold skin and goosebumps, yet be sweating from overheating at the same time. It’s a very disconcerting feeling.
Things that may help include keeping a light blanket or sweater nearby for chills and a fan for when heat becomes a problem. I have found that keeping my feet warm helps with the chills and then using a fan helps ward off the sweating.
5. Weight Gain
Weight gain is often caused because of medications you may be taking for your Fibromyalgia. Even if you’re not taking prescriptions, you may find you’re still gaining weight – it’s one of the anomalies of having Fibro. The only way to lose weight is by taking in less calories than you are expending. Fad diets may work for a short period of time, but in general are unsustainable.
Following a proper eating plan from all 4 food groups is essential and exercise is as well. You may find walking helpful (consider using walking poles for extra stability) or water activities, such as Aquafit, Deep Water Workouts, or Pool Walking to be helpful.
6. Chest Pain
Chest pain can be a scary symptom of Fibromyalgia and should always be checked out by a medical professional if you experience the following:
Pressure, tightness, pain, or a squeezing or aching sensation in your chest or arms that may spread to your neck, jaw or back.
Nausea, indigestion, heartburn or abdominal pain.
Shortness of breath.
Lightheadedness or sudden dizziness.
The cause of chest pain in Fibromyalgia is often because of something called Costochondritis, which is an inflammation of the cartilage around the ribs. The condition usually affects the cartilage where the upper ribs attach to the breastbone, or sternum, an area known as the costosternal joint or costosternal junction.
Treatment includes anti-inflammatory pain relievers such as Ibuprofen or Naproxen and using either heat or ice (which ever feels best for you).
7. Sleep Disorders
Pain can keep you from getting the sleep you need. You may also be experiencing Restless Leg Syndrome and not even be aware of it. Sleep Apnea is another problem that you may be facing and all of these issues can prevent you from getting the deep REM sleep that is necessary to repair the body.
Good sleep hygiene is important to follow. You may want to keep a notebook to jot down your thoughts when you wake at night to see if there is a pattern. Keep the room cool, avoid using electronics for one hour before bed, and try using a weighted blanket to see if that helps.
8. Digestive Problems
When you have Fibromyalgia, you may experience digestive disorders including nausea, vomiting, diarrhea or constipation (or occasionally both), heartburn and a general sense of feeling “unwell”.
Drinking peppermint tea can help with nausea, eating smaller more frequent meals might make a difference and trying to set up a schedule for bowel movements can help relieve discomfort. Metamucil or other Fibre supplements every day can be helpful for the bowels without resorting to laxatives.
If symptoms persist, see your doctor to rule out other potential problems.
9. Skin Problems
Itching, rashes, hives and tiny red marks can often show up when you have Fibromyalgia. Skin may become more sensitive to soaps and fragrances and you may discover that your normally dry skin has become oily or vice versa.
Use of a mild cleanser for face and body is imperative, especially ones containing oatmeal. Antihistimines are suggested when hives and itching become a problem and the tiny red marks that might show up on your skin are harmless.
If you have problems with skin rash, see your doctor who may recommend a dermatologist for further treatment.
Depression and Fibromyalgia may go hand in hand without you realizing you are showing signs. If you are finding yourself struggling to maintain interest in former activities, you’re isolating yourself, eating less or more than usual or have been unable to shake “the blues”, you may be experiencing Depression.
Treatment includes Cognitive Behavior Therapy (CBT) and often, medications. There is no shame to having Depression – you haven’t done anything wrong. You’re not weak, your body is showing signs of a chemical imbalance which should be treated like any other medical problem.
If you are feeling so depressed that you are suicidal, please call a hotline for help. You can find more information on hotlines here for Canada and here for the United States. In the UK, you can use this page for help.
There are over 60 different symptoms that relate to Fibromyalgia. These 10 are just the tip of the iceberg, but are the ones more commonly experienced.
If you are experiencing something new, or if a symptom you’ve had for awhile changes, it’s always important to see your doctor, to rule out anything outside of Fibromyalgia. Better safe than sorry is certainly the key here. And remember…
As we enter the Season of Miracles, I wanted to write today about something that’s been on my heart. Joy and Miracles and hope for the future.
There is so much hope that comes with Christmas and Hanukkah – the Birth of the Christ Child, the Miracle of the Oil burning for 8 days – and I want us to see that despite Chronic Illness, there can still be joy and miracles and things to look forward to.
After living with Chronic Illness for over 30 years, my list of physical ailments is long and continues to grow. I also have a mental illness to deal with which will be with me for the rest of my life.
Having Bipolar Disorder was a frightening diagnosis for me, but after finally getting it under control with the proper medications, it’s become a real non-factor in my life and I often forget that I have it.
To me, that’s a miracle.
Each year though, my physical pain gets worse, and so does my Chronic Fatigue. I struggle more with pain management and all the side effects, but I’ve also learned new tips and tricks to help deal with my days – another reason to feel hopeful.
In a previous post, I wrote about complementary medicine and how it can help with Chronic Pain. I am a true believer in trying new solutions for old problems and had some great feedback about this article. I hope you were able to incorporate some of these ideas, or will look at the post to give them a try.
Living with Chronic Pain can be a bittersweet encounter – bitter because of the pain and side effects and all the negative changes in your life, but sweet because there are still things to be grateful for.
There is new research on the horizon for diagnosing Fibromyalgia – the work being done to develop accurate blood testing has never been more exciting, and with science on our side, things are bound to have a positive impact in our lives.
The sooner we get a true diagnosis, the sooner treatment can start.
Treatments themselves are becoming better too, now that we understand that Fibromyalgia isn’t an autoimmune disorder and that its roots lie in the nervous system and the inability to communicate properly with the brain and spinal canal regarding pain signals.
Although there haven’t been any new medications released to treat Fibro, Gabapentin is being used more commonly in conjunction with the approved medications (Savella, Cymbalta and Lyrica) with good results.
More and more patients are becoming involved in Research for their health conditions, and Clinical Trials are being held across North America on a regular basis.
For more information about clinical trials, you can sign up here at ClinicalTrials.gov to see if you qualify for studies on a variety of health issues, not just Fibromyalgia. Another good spot to try is Patients At Heart. For Canadians, this link takes you to the Health Canada Clinical Trials website.
Another area where I’m seeing hope and miracles is in Patient Advocacy. This is a fast growing area where Patients become involved as authorities in their lived experience and work together with Health Care Partners to make changes in how health care is delivered.
One of the largest national organizations in Advocacy is WEGO Health. WEGO Health works with Patients in a wide variety of areas, offering opportunties to share you stories and help to impact change in a number of different ways.
They highlight a number of different annual conferences that take place in North America, and provide opportunities for you to share your story and get involved in various projects.
Patient Advocacy at an organizational level is becoming extremely important as well. If you want to be involved, simply contact the health organization of your choice, and ask them how you can become a Patient Advocate.
Volunteering your time to share your health story and help others is a great way to give back, beyond simply “making a donation”. Financial help is always needed and appreciated, but you can make a real difference as well in sharing your experiences.
Speaking of volunteering, this is an activity that has given me the greatest joy since becoming disabled. I do volunteer work for a group in BC, Canada called the Patient Voices Network, where I act as a Patient Advocate for a variety of Health Care initiatives.
I currently sit on 5 health-related committees,. Two are with the BC Emergency Medicine Network. Another is a Surgical Quality Improvement committee and another committee is devoted to ensuring Quality Control for all the Laboratories on Vancouver Island, BC.
Finally, I am a member of the Oversight & Advisory Committee for the Patient Voices Network, a role I’ve held for 3 years now. We oversee the activities of PVN and ensure that Patients are getting opportunities to share their voices in making change in health care.
I have also recently been working on becoming a Coach for PainBC.ca, allowing me to work directly with people with Chronic Pain and helping them find solutions for situations in their lives that they require some guidance with. I expect that work to start in 2020 when my training is complete in mid-December.
These volunteer opportunities allow me to give back to the community in a variety of ways while still taking care of my health. I devote approximately 20 hours a month to all of these committees which is manageable without overdoing it.
I love the variety of experiences I get to be involved in, the people I work with (surgeons, Government officials, other patients, etc.) and the opportunity to stretch my wings and try new things beyond my day to day life.
I’ve even been sponsored to travel to various conferences and to take courses such as the San’yas Indigenous Cultural Training.
I share this with you to show you that even if your health isn’t the greatest, you can still participate in volunteering in ways that make a difference.
Another volunteer suggestion is this: if you are a crafter, find out if your local hospital has need for knitted or crocheted items and take on the challenge. Blankets, baby items and more are often for sale in the Hospital Gift Shops and you can have a real impact on someone’s life with this kind of giving.
I know I’ve been very comforted in times in the hospital when I’ve been provided with a beautifully created blanket!
Season of Hope
I trust you are getting a sense of the hope and miracles I started this post with. There is so much potential in our lives even if we are disabled by pain and our physical and/or mental illnesses.
We must let go of the old ways of thinking that our good days are behind us, and start celebrating the wonderful things we have yet to accomplish.
Think about what you’re good at and find a way to incorporate it back into your life. What makes you smile? What makes your heart skip a beat? Find a way to bring that joy back into your life and see what changes.
Pain is easier to manage when you have good things to look forward to. Fatigue seems easier to handle when you’re active and busy, both mentally and physically.
I hope this post was helpful. I appreciate your comments below and look foward to sharing a magical Season with all of you! Remember…
When I first started to blog, I wrote about my total hip replacement because I’d had problems trying to find first-person accounts of undergoing that particular type of surgery, especially for someone who was in their 50’s. Hip replacements seem to be done on mostly older folks (in their 70’s or older) but rarely on the younger set, unless you’ve been born with a hip problem or have suffered a devastating injury.
Because I was only 54 when I had my hip replacement done, I was considered “unusual” by my surgeon (and yes, I’m sure he meant my hip only and not me in general!) so trying to find others in the same position was difficult. I had read enough websites to understand the technical side of the surgery, but I wanted to find out what it was like to actually have the surgery and then recuperate and go on with life.
Since I was unable to find a lot of good information, I decided to write about my own experiences, so others in my position might be able to find what I was looking for. Once I’d written about that, it seemed natural to go on and talk about other health issues I live with and how they impact my life. From there, the blog site grew organically and became what it is now – a place for articles and posts about Fibromyalgia, Chronic Pain, Chronic Fatigue and Invisible Illnesses, such as Lupus, MS, Arthritis, POTs, Ehler’s Danlos Syndrome and more.
The goal has been achieved and I’m proud of what I’ve been able to create with this site. I hope others feel the same.
Living with a Chronic Illness is hard work. People with Chronic Pain and Invisible Illness are often left feeling isolated, and when you find someone online who speaks your language, it can be like finding an oasis in the desert.
In addition to educating people, I wanted this blog site to be a place where comments could be left freely, allowing people the opportunity to share what’s going on in their lives in a safe way. When readers have identified with a particular post, their comments reflect their own lives and situations and I take that seriously. I often respond back, not always in the comment section, but in-person to what they’ve said.
My responsibility as a writer is to ensure that not only am I educating people but I’m giving them some hope as well. Life with Chronic Illness is painful physically and mentally and when you find a spot online that reflects your own thoughts and ideas and connects with you, there’s a genuine freeing sensation. You feel less alone in the world and you realize that other people “get it”. Being understood is an amazing feeling and us Chronic Pain Warriors don’t always feel understood.
In many ways, I see writing this blog as another form of volunteering that I do. My focus on health and wellbeing extends beyond this blog site, but I consider the site to be one of service to others.
Like my other volunteer roles, I receive no compensation for producing this site, with the exception of any money I might make with Affiliate Marketing (more about that in a minute). I do this purely because I want to help others who are in Chronic Pain and who feel lost and alone and in need of information that might help make their lives better.
My other volunteer roles include committee work for Surgical Quality Improvement, improving Clinical Resources for Patients such as updating Patient Information Sheets received when you are discharged from an ER and Laboratory Quality Control to ensure that Patients are receiving the best care possible when they are providing lab samples for doctor-ordered tests. I also sit on a Provincial Measurement Working Group that is creating a survey for Patients in British Columbia, Canada to ensure that their care received has been the best it can be.
These roles, together with this blog, give me ample ways to help others, and that brings a lot of happiness to my soul.
My final reason for blogging is purely selfish…I do this for me as well. It’s therapeutic to be able to write about what’s new in health care, or what I’ve been thinking about a certain subject. I love being able to tackle controversial subjects or bring emotional issues to light, such as intimacy when you are Chronically Ill.
I consider myself lucky to be in a position where I can have some influence over others and perhaps introduce them to a treatment they haven’t heard of before. There’s nothing quite as satisfying as hearing back from someone who says “you changed my life” or “I really needed to read this”. It makes up for the research, the typing on days when my hands hurt and the work of coming up with new topics that will be of interest.
If you are a blogger, you understand what I’m talking about. If you are a reader, just let me say that having responsibility for you and what I’m producing for you is an honour I don’t take lightly. I want to make sure you’re getting information that benefits you and your health because I know what it’s like to live with Chronic Illness and I know the types of things that I’d like to read and learn from.
Thank you for allowing me to share these thoughts with you. I appreciate your comments below, or you can always write to me using the Contact Form.
I do this because I love it. I love sharing and helping others and I hope I’m able to continue for a long time to come. Remember…
Note: This post contains Affiliate Links which pay me a small percentage of your purchase price at no cost to you.
When you live with Chronic Pain, everything you do becomes a new challenge. Working, socializing, taking care of kids and/or a home – you still need to do it all and live your life, but now you have persistant pain as your constant companion. Often, you find yourself compromising or looking for better ways of doing things, so your pain isn’t exacerbated.
One of the areas of life with Chronic Pain which is often not talked about is intimacy and your sexual well-being. These are crucial components of a good relationship, but what happens when pain causes you to withdraw from sexual relations, and intimacy begins to suffer? Let’s talk about some of the reasons this happens and what can be done.
Difficulties with intimacy may stem from various causes, including increased pain during sexual activity, a lack of arousal and accompanying vaginal dryness, the inability to reach orgasm, side effects from the use of opioids and other commonly-used medications (eg, certain antidepressants), a past history of sexual abuse, and issues with communication in general.
Because of Chronic Pain, you may find your overall relationship has begun to suffer. A partner may withdraw from you because they don’t know how to help you. This translates to the bedroom, where they may be afraid to cause you more pain or they’re dealing with their own issues regarding your health. Perhaps your partner has become resentful of the extra burden placed on them with your inability to do certain chores now.
A change in standard routines can be upsetting for everyone and this may cause extra fatigue for you both, which also causes you to withdraw from intimacy. Sleep may be what you crave the most, and when your partner wants to have sex, it’s the last thing on your mind.
So how do you overcome these issues? What do you do to make sex more enjoyable for both of you? Here is an expanded list of ideas from a previous post that might be a good starting point.
Talk. Make a point of talking openly and honestly about what you are feeling. If there is fear about pain, talk about it and what you can do to alleviate any extra. If you feel disconnected from your partner because it’s been a long time since you last were intimate, talk about those feelings and what you’re worrying about. Do you have scars or extra weight that is causing you concern? Be honest about how you feel. It can be very vulnerable to speak the truth, but it often brings you closer to your partner in the long run.
Touch. Exploring your partner’s body through touch is an exciting way to express your sexual feelings. This can include holding hands, cuddling, fondling, stroking, massaging and kissing. Touch in any form increases feelings of intimacy.
Self-stimulation. Masturbation is a normal and healthy way to fulfil your sexual needs. One partner may use masturbation during mutual sexual activity if the other partner is unable to be very active.
Oral sex. It can be an alternative or supplement to traditional intercourse.
Toys. Use of various sex toys can help loosen inhibitions, relax the body and make intercourse more enjoyable.
Different positions. Lie side by side, kneel or sit. Look in your library or bookstore for a guide that describes and illustrates different ways to have intercourse. If you’re embarrassed to get this kind of book locally, try an online book retailer.
Vibrators and lubricants. A vibrator can add pleasure without physical exertion. If lack of natural lubrication is a problem, over-the-counter lubricants can prevent pain from vaginal dryness.
Pillows and wedges. Make use of pillows and wedges to help find comfortable positions that alleviate pressure points. A good sex shop can help you find products specifically made for this purpose.
Change your expectations. Because reaching orgasm can be almost impossible when you are on certain medications, you may find changing your expectations for sex will help you enjoy lovemaking more. Don’t make orgasm the ultimate goal…just enjoy sex for what it is – a pleasurable experience.
Ask for what you need. Listen to your body and what it’s telling you during sex. If certain activities make you feel better, do more of that. Lovemaking doesn’t always have to end in intercourse. Oral sex during a lovemaking session may be all that you desire, and there’s nothing wrong with that.
Prepare in Advance. It’s important for people with Chronic Pain to understand that sexual activity often takes a lot of planning. There is not as much spontaneity as there used to be. You may find you need to take your pain medication, apply heat, or stretch before sexual activity. This is also a good time to try increasing your arousal by reading erotica, watching a video, or having your partner give you a massage in the area of your pain.
Timing. Choose a time of day when you have less pain as a time to be sexually active. For some people as the day goes on, the pain gets worse, but the opposite also may be true for others. If you have kids, you may have to sneak away for a quickie, but even that is better than no sex at all. If you can arrange for the kids to be away overnight, it gives you plenty of time to relax and set the stage for intimacy.
Sex is meant to be a natural part of a relationship. Just because you live with Chronic Pain doesn’t preclude you from being able to enjoy lovemaking with your partner. You might want to try some of these products to bring a new spark to your bed (or living room or bathroom or…)
The only thing better than an inspirational quote is an inspirational quote about things you should never do. You should never judge a book by its cover. You should never count your chickens before they hatch. You absolutely should never look a gift horse in the mouth (what exactly IS a gift horse??).
If you want to live your best life, enjoy this list of things you should never do*.
Career and Business Quotes
“Never mistake knowledge for wisdom. One helps you make a living and the other helps you make a life.” – Sandra Carey
“Never become so much of an expert that you stop gaining experience. View life as a continuous learning experience.” – Denis Waitley
“Never mix negative thinking with negative people. Multiplying negatives, in this instance, won’t make a positive.” – Richie Norton
“Never rest on your laurels. Nothing wilts faster than a laurel sat upon.” – Mary Kay Ash
“Never play leapfrog with a unicorn.” – Anonymous
“Never moon a werewolf.” – Mike Bender
“Never go to bed mad. Stay up and fight.” – Phyllis Diller
“Never deny a diagnosis, but do deny the negative verdict that may go with it.” – Norman Cousins
“Never confuse a single defeat with a final defeat.” – F. Scott Fitzgerald
“Never give up. Today is hard, tomorrow will be worse, but the day after tomorrow will be sunshine.” – Jack Ma
“Never let the future disturb you. You will meet it, if you have to, with the same weapons of reason which today arm you against the present.” – Marcus Aurelius
“Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has.” – Margaret Mead
“Never love anybody that treats you like you’re ordinary.” – Oscar Wilde
“Never ruin an apology with an excuse.” – Kimberly Johnson
“Never underestimate your power to change yourself. Never overestimate your power to change others.” – H. Jackson Brown Jr.
“Never tell a child that something is too hard for them.” – Mitch Albom, quoting his mother
“Never explain – your friends do not need it and your enemies will not believe you anyway.” – Elbert Hubbard
Personal Development Quotes
“Never let the fear of striking out keep you from playing the game.” – Babe Ruth
“Never stagnate. Life is a constant becoming: all stages lead to the beginning of others.” – George Bernard Shaw
“Never treat time as if you have an unlimited supply.” – Og Mandino
“Never place a period where God has placed a comma.” – Gracie Allen
“Never reject an idea because you don’t have the money, manpower, muscle, or months to achieve it!” – Syed Ather
“Never interrupt someone doing what you said couldn’t be done.” – Amelia Earhart
“Never be bullied into silence. Never allow yourself to be made a victim. Accept no one’s definition of your life; define yourself.” – Robert Frost
“Never say more than is necessary.” – Richard Brinsley Sheridan
*Sources include, but are not limited to Brainyquote.com, Oxford Dictionary of Quotations, and Neverisms: A Quotation Lover’s Guide to Things You Should Never Do, Never Say, or Never Forget.
Writing this blog brings me a whole lot of satisfaction – I love knowing I’m reaching others, sharing information about Chronic Pain and Invisible Illness and helping others as they live their lives with Disabilities. I don’t expect much in return, so when my blog is recognized, it truly delights me. And that’s why I’m thrilled to say I’ve been awarded the Sunshine Blogger Award
So – what is the Sunshine Blogger Award?
The Sunshine Blogger Award is recognition given to bloggers by their fellow bloggers. The aim is to honour those of which bring inspiration and positivity to the world through their blog content.
Rules for the Sunshine Blogger Award
Thank the person who nominated you and provide a link back to their blog.
List the Sunshine Blogger Award Rules and display the logo on your site.
Answer the Sunshine Blogger Award questions given by the person who nominated you.
Nominate 10 other bloggers and ask them 10 new questions.
Notify the nominees of their nomination.
I want to extend my thanks to Davis at Everything Starts With Tea. She nominated me for this award and it totally came out of the blue. I was touched and flattered that she thought of me and liked my blog enough to consider it for this award. Thanks Davis…I appreciate it so much!
What has been your biggest achievement?
My biggest achievement in blogging has been being nominated for 3 WEGO Health Awards for this year (2019)
What is your motivation to blog?
I like knowing that my blog is reaching people who live with Chronic Illness and is helping them to find answers and affirmation that they are not alone. I work hard to bring information and humour to my posts – I want people to feel this is a solid resource when they have Chronic Pain, Chronic Fatigue, Fibromyalgia or Invisible Illnesses.
What’s one thing you wish to accomplish before you die?
I would love to take a “Round the World” cruise before I die.
What’s your greatest dream in life?
There are two things – seeing my kids and grandkids have happy healthy lives and to find a cure for Fibromyalgia.
What’s your favourite book and why?
Furiously Happy by Jenny Lawson. It’s a hilarious account of her life with mental illness and is truly “laugh out loud” funny!
Pick any moment in life you feel has defined you the most and tell us, why do you feel that’s the case?
I think it’s when I was a single parent and had just started my first job. I went into a position as a receptionist where there were 12 incoming lines, and the computer system was completely different than what I had just been taught in the computer courses I’d been taking to prepare me for work. I knew at that moment I could either sink or swim and I chose to swim. I learned the new system in no time, mastered all those phone lines and discovered I LOVED doing administrative work – I was well suited for it. I thrived and never looked back.
If we were all colours, what colour would you be and why?
I would be pink! Pink is happy and light and cheerful and always makes you feel good. Even when it’s dark pink, it’s still pretty!
Tell me, what is one mistake you’ve made that you’ll never make again?
I will never marry again!!! LOL…that’s because I finally got it right with my current husband…my second attempt.
If you had the ability to fix one of the world’s problems, which would you choose to fix?
I would choose to end world hunger. With a full belly, you can achieve so much, but when you’re starving, everything else is a huge challenge.
You’ve been given a genie lamp – what three wishes are you asking the genie to grant?
What is the best advice you could give to an up and coming, new Blogger?
What was your favourite class in High School and why?
Why did you start blogging?
Do you have a blogging goal?
What is your favourite food?
Is there a tradition from your heritage you’d like to share?
What is your favourite holiday memory?
So there we go…the Sunshine Blogger Award! I hope you enjoyed reading through this and to those of you I’ve nominated, I hope you appreciate how much I care about you and your blog. Please accept the honour in the spirit it’s been given, but if for some reason you are unable to participate, don’t feel bad!!! I know that some people prefer not to share in these awards and my feelings will NOT be hurt in any way if you choose to pass.
Share with your friends and feel free to nominate your own winners! Remember…