Living with Chronic Illness is an act of bravery. When each of your days is spent in pain and discomfort, it takes a lot of courage to keep going. I want to talk about hope…how to have it to get through your life and how it helps to keep a person going.
What is HOPE? Here is one definition I found that I think sums it up:
Hope is an optimistic state of mind that is based on an expectation of positive outcomes with respect to events and circumstances in one’s life or the world at large. As a verb, its definitions include: “expect with confidence” and “to cherish a desire with anticipation.”
Being optimistic is essential when you live with Chronic Illness, because the alternative is unacceptable. If you only see negatives, then you end up wallowing in misery and that compounds how you feel physically and mentally. I truly believe that even in the worst illnesses, there are positives to be found.
You gain a better perspective of your own strengths
You show more compassion for others who are struggling
You understand the human condition for what it is and tend to reach out more to others
Every accomplishment is a victory
You find greater wisdom from those around you
Expecting with confidence is based on faith – trusting that what you want the most will come true. Realistic faith is a good thing and ridiculous faith is even better! What is ridiculous faith? It’s when you hope and pray for something which is beyond reasonable expectations, but still anticipate that miracles could happen.
Do you need Religion to have Hope? I don’t think so. It can help in many ways, as prayer can be a very comforting thing, but I don’t think it’s necessary. Many people consider themselves Spiritual rather than Religious and find comfort in ritual, nature or other traditions. Prayer may not be a part of their lives, but they still find comfort in the routines they’ve established for themselves.
I am a Christ Follower and find prayer to be essential to my well-being. It comforts me to know that I have a God who is bigger than me and who holds me in the palm of His hand. I trust that He has a plan for my life and though I may not understand it, I accept it. Acceptance on it’s own can be comforting.
So how does one go about growing Hope in their lives? What steps do you have to take to have faith in the things that are happening in your life, good and bad?
Acknowledge your strengths. Chronic Illness can rob us of our confidence. Try making a list of all of your strengths and accomplishments. Read through the list and congratulate yourself for these positive traits. Understanding that you still have much to offer the world goes a long way in inspiring hope in the soul.
Cultivate supportive relationships. As much as you can, surround yourself with supportive and caring people. People who help you to feel good and encourage you to be your best help to increase your sense of wellbeing. Having a supportive network of friends will help you to further your interests and goals. It’s much easier to find hope within a strong community as opposed to completely on your own
Look at the activities and attitudes of people around you. See if any of them can serve as role models for what you would like to accomplish for yourself. Also, consider how the people around you act and make you feel. When you surround yourself with hope and success, it naturally trickles down into your own life. Like attracts like.
Engage in pleasurable activities. Doing things that you enjoy can also help you to develop your sense of hope. By engaging in activities that make you happy every day, you will have a greater sense of purpose. If you are not sure about what activities bring you the most joy, try out some new things to figure it out. Take a class at your local community college, try a new exercise routine (Aqua-based activities are easy on the body), learn a new skill, or start a new hobby.
Get involved with a cause. Volunteering for a cause you believe in is a great way to cultivate hope towards the future. This can be in either your local community or even an online community if mobility is an issue for you. Patient Advocacy is an area that is under-represented and working with Health Care Organizations can have a huge impact on yourself as well as others who live with Chronic Illness.
Build relationships with others. When you start to build new relationships over common goals or projects, your sense of hope can greatly increase as you see results from your efforts. Involving yourself with other people who share your interests can help you to overcome alienation, which can cause a feeling of hopelessness.
Get out of your comfort zone. This is essential to changing your thought patterns and learning to approach the world with more hope. Go out with friends after work instead of going straight home. Join a club or group so you can share new experiences with others. Develop a new hobby. Put yourself out there in ways that make you mildly uncomfortable at first.
Keep track of your thoughts and feelings in a journal. Journaling is a great way to understand why you have been feeling hopeless and it is also a great stress reliever. To get started, buy a beautiful journal and a nice pen or pencil. Choose a comfortable place and plan to devote about 20 minutes per day to writing. Start by writing about how you are feeling, what you are thinking, or whatever else is on your mind.
Try keeping a gratitude diary. Every night, think of three things you are grateful for and write them down. Doing this every day will help you to develop a more hopeful outlook and it can also help you to sleep better and enjoy better health.
Take care of yourself. Exercise, eat healthy food, get plenty of rest, and relax. By taking good care of yourself, you are sending your mind signals that you deserve to be happy and treated well which can increase your hope for the future. Make time to take care of yourself
Exercise to the best of your ability.
Eat a balanced diet of healthy foods like fruit, vegetables, whole grains, and lean proteins.
Set aside at least 15 minutes per day to relax. Practice yoga, do deep breathing exercises, or meditate.
Go for a massage or have body work such as Reiki to help balance you.
Hope doesn’t have to be a fleeting thing…it can be a strong and deciding factor in your day to day life. I live every day with the hope it will be a good day. Positivity goes a long way in making me feel better physically, mentally and spiritually. I’m realistic about what I am and am not able to do, but I never give up hope that things will be better. It’s all about attitude and choosing how you want to feel.
I hope these ideas and suggestions are useful for you. I named my blog There Is Always Hope because I truly believe that statement. Even in the worst of our moments, I believe there is always a tiny light burning bright for us. We just have to look for it. Sometimes that means stepping out of our comfort zone and doing something we never thought we were capable of, but if we can overcome our fear, we may be surprised as to what we find.
And so I end this post as I always do and I mean it even more today…
Living with a Chronic Illness can be life changing. Everything you knew or did before your illness changes, and life becomes. very different. Suddenly, you’re seeing doctors, attending medical appointments, taking medications, trying new therapies, all while living with pain, fatigue and various other symptoms.
Controlling Your Attitude
It’s easy to let this new life overwhelm you. A normally cheerful and outgoing person can now be dealing with an immense amount of stress, and it’s easy to let your attitude about life change. “It’s not fair” you might think, and you’d be right. Developing an illness of any type is not fair.
The important thing to remember is that the only one who can control your attitude is you. Only you have the power to take the negatives in your life and try to find positives instead. How do you find a positive in pain? Well, there are several ways:
Pain Forces You To Slow Down
When you live with Chronic Pain or Illness, you find yourself overwhelmed with all the new changes in your life. You may be forced to slow down a bit to deal with these changes, and that can be a good thing. Rest allows you to reduce stress, heal faster and is good for your emotions as well.
Connections With Other People
Finding people who are experiencing the same thing you are can be golden. There’s nothing quite like explaining your symptoms to someone and having them not only understand, but empathize with what you’re going through.
Relationship With Your Medical Professional
Most people see their doctor only once or twice a year. When you live with Chronic Pain and Illness, you will likely see your medical professional far more frequently. This is a great opportunity for you to build a strong relationship with them, so you get the best care possible.
Chronic Pain and Illness forces you to learn self care, a skill most of us don’t employ often enough. Self Care means taking time to do the things that make you feel good – exercise, meditation, prayer, reading, listening to music, yoga, connecting with others…the list is endless. The more you practice Self Care, the better it is for your overall health.
Many Health Care Organizations require Patients to advocate about their conditions and this can go a long way in helping you to find a positive about your health. It’s empowering to stand up in front of others and share about your condition and how it impacts your life. Others benefit from your experiences and you can change lives in ways you might not have imagined.
Developing A Hobby
Sometimes living with Chronic Pain and Illness forces you to look at your life and determining that you need to make some changes…perhaps you need to put some fun in your life. If you love to read, write, draw, create or some other type of activity it is a good distraction to your illness.
If your illness has caused you to not be able to do the things you used to love then perhaps it’s time to find a new hobby within your abilities
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.
Fibromyalgia can be a lonely disease. Staying connected with friends and family becomes difficult when chronic pain and fatigue make it hard to get out and about like you used to. Sometimes, having a pet can make all the difference in the world!
Not only will a furry friend give you some companionship, but it turns out that pet therapy can actually be a pretty effective way of dealing with fibromyalgia pain. Here’s how it works.
What Is Pet Therapy
Pet therapy is a guided interaction between a person and a trained animal. It also involves the animal’s handler. The purpose of pet therapy is to help someone recover from or cope with a health problem or mental disorder. Basically, it involves using specially trained animals like cats and dogs to provide comfort to people who suffer from diseases like fibromyalgia, cancer, dementia, etc. The animals provide companionship while the patient pets or plays with them, reducing the amount of stress and pain they feel.
The biggest concern when it comes to pet therapy is making sure that the animals are well-trained and vaccinated. Because pet therapy is often done in hospitals, doctors want to be sure that a dog won’t get loose and run around contaminating the area.
With that being said, pet therapy, when done by a professional, is perfectly safe and can be very effective in treating fibromyalgia pain.
What Are The Benefits Of Pet Therapy?
Pet therapy builds on the pre-existing human-animal bond. Interacting with a friendly pet can help many physical and mental issues. It can help reduce blood pressure and improve overall cardiovascular health. It can also release endorphins that produce a calming effect. This can help alleviate pain, reduce stress, and improve your overall psychological state.
How Can Pet Therapy Ease Fibromyalgia Pain?
While the idea that simply petting a cat or dog can actually help your fibromyalgia pain seems a little far-fetched, there’s some basic science that backs it up. You see, petting an animal has been shown to cause your body to release lower levels of cortisol, which is the hormone linked to stress. And cortisol levels are directly linked to the amount of pain people with fibromyalgia feel.
And in addition to helping deal with your fibromyalgia pain, pet therapy also has other benefits. Depression and anxiety are both common among people with fibromyalgia, and it turns out that pet therapy can also help significantly with those symptoms. People who engage in pet therapy report consistently lower levels of stress and anxiety than people who don’t. There’s something about stroking a companion animal that lends a level of comfort to people who are suffering.
And taking care of an animal also helps people with fibromyalgia get more involved in daily life. Taking the animal on walks or playing with them in the park are great ways to coax yourself out of bed. And that’s especially true on days when your fibro pain makes you want to just close the curtains and go to sleep. So, a therapy animal can even be a link to the rest of the world when you have fibromyalgia.
So pet therapy can not only help you reduce your fibromyalgia pain, it can help you feel happier and less anxious.
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How Can You Start?
Your doctor or therapist managing your treatment will administer pet therapy. A trained handler, often the pet’s owner, will take the animal to every meeting and work under your doctor or therapist’s direction to help you reach your goals. In most cases, the handlers work as volunteers. Discussion of proper pet handling is needed to ensure the safety of both the person receiving treatment and the pet.
Or if you prefer, you can also purchase your own animal that has been trained to be a therapy animal. There are lots of different breeders and trainers. And one should be able to help you find what you are looking for. A quick google search should be enough to find some in your area.
So maybe you’re the kind of person who hates having to leave their loyal pet behind. Well, getting them certified to provide therapy means that you can get comfort from them anywhere you go. And that can be a great thing when you’re suddenly struck by a fibromyalgia flare-up during your daily routine.
Animals make great companions, and it turns out that they might actually be great for treating fibromyalgia pain too. So if you’re tired of trying side-effect riddled medications, some alternative pet therapy may just be for you.
The success of pet therapy depends on establishing realistic goals and expectations and meeting those goals. You and your doctor or therapist will establish these goals at the beginning of your treatment. You’ll also discuss how to reach those goals and how long it will take.
Your doctor or therapist will monitor your progress and help you stay on track to meet your goals. If your progress is slower or faster than expected, they may alter your treatment plan. Remember,
Today, I’m featuring a guest post by author Bojana Petkovic, Project Manager at Loud Cloud Health
CBD and Cannabis: How They Benefit Our Health and Society
The good news is that millions of researchers in the field of medicine, pharmacology, and biochemistry put a lot of effort into exploring cannabis and its main cannabinoids. Thanks to research, cannabis and its incredible benefits are quickly gaining momentum. Let’s take a look at some basic facts and stats.
What Makes Cannabis Worth Researching?
Humankind has been familiar with this plant for at least 5,000 years. Throughout history, many people have consumed it as medicine through food and beverages. Some of the most acknowledged effects of cannabis include killing all sorts of pain, helping cancer patients, improving mental health, etc. That is why a growing number of the world’s governments consider decriminalizing or fully legalizing it.
The plant has an incredible number of complex substances in its buds, fan leaves, and stems. Those substances are called cannabinoids. There are ten most significant ones recognized by modern medicine, two of them being CBD (cannabidiol) and THC (tetrahydrocannabinol).
Even though the research has been fruitful, scientists believe there is still a lot more to know about cannabis’s benevolent nature.
What Do We Know About CBD and Cannabis?
First and foremost, we are aware that CBD successfully relieves symptoms such as chronic pain, cramps, and tissue inflammation. Such symptoms are common in diseases like arthritis, fibromyalgia, rheumatism, and numerous other musculoskeletal conditions that typically trouble the senior population. According to the study conducted at McMaster University in Ontario, Canada, CBD tends to reduce arthritic and back pain, leaving trauma-related pain behind as well.
Mental disorders and illnesses are common for all age groups. The typical symptoms include anxiety, mood swings, dementia, and insomnia. Less common ones include severe psychosis.
CBD appears remarkably advantageous in this field of medicine. Research by Bonn-Miller suggests the importance of medicinal cannabis to those who have PTSD by helping them sleep and cope with trauma. Another study from 2006 explains that as much as cannabis might instigate a more regular use, depression and psychotic disorders should be treated with it. Less agitation, more sleep, and success in battling constant anxiety are just some reasons why cannabis should be used in different treatments.
In adults, CBD and cannabis can help cure more severe addictions. Such addictions include heavy opioids, alcohol, and of course, prescription drugs. That may seem paradoxical since cannabis needs to be used in moderation as some forms can cause dependence. Addiction statistics reveal that adequate use of cannabis helped 26% of people who consumed heroin to opt out of it and smoke marijuana instead. Some 40% of alcohol addicts chose to do so as well. Additionally, 66% of prescription drug addicts switched to cannabis for good.
Word of Warning
Though cannabis sounds like a miracle plant, that doesn’t mean it has no side effects. THC is mainly known for being psychoactive, while CBD can induce nausea, dizziness, or dry mouth. Most of these occur if one consumes too much. Cannabis use disorder is a form of dependence, so it is of ultimate importance to use the plant responsibly, and always consult a doctor if you have a condition.
What Can We Anticipate in the Future?
Thanks to technological advancement, we are about to see the new and incredible benefits of this plant. We should not fail to mention that, through further legalization and decriminalization, a large number of people will have job opportunities within cannabusiness. This industry has no intention to leave its upward trajectory. Au contraire, it will most probably be “the next big thing.”
When I wrote my post An Attitude of Gratitude, I received a lot of good comments on it, both those left with the post and in other formats. I meant every word of that post and I wanted to expand on that today, and THANK my body for all it does, despite Fibromyalgia (and several other health conditions). Here are some of the reasons I have to thank my body (and my mind!)
I Have A Strong And Compassionate Heart
Physically, my heart is in tip-top shape. After experiencing some chest pain a few years ago, I was put through a battery of tests including a heart scan and an ultrasound. Everything came back showing my heart to be in excellent shape and my risk of heart attack to be at approximately 1% based on all factors in my life. Now that’s pretty amazing when you consider all the health conditions I live with, but I trust the tests and the monitoring.
What I tend to be most concerned with when it comes to my heart is how compassionate am I? Do I care about others? Do I show it? Do I reach out when others need a hand or a shoulder to lean on? Those are the heart conditions that I worry about and I work hard to make sure I’m staying heart-healthy in this area too.
I’ve Been Blessed With Common Sense
Not many people know that I never graduated High School. I only finished with a Grade 11 education, and while I’ve taken College courses to complete a Certified Event Planning Certificate, I’ve never furthered my formal education. I was able to get a good job in a field I loved by working hard and having common sense, which I believe is something sorely lacking in many people these days.
I don’t know if common sense is something you’re born with or something you learn. I only know that it comes naturally to me. It’s intuitive, it’s part of me and I don’t struggle with it…it’s just who I am. I may not be the most well-educated person in the group, but at least I have this gift. I’m always thinking and strategizing about scenarios and how I would handle them. I rarely panic anymore about things…I just seem to know how to get on with it. I’m eternally grateful for this ability and I don’t take it for granted.
I’m Able To Give Back To Others
Volunteering is hugely important to me. Having the ability to give back to others makes me feel good and that’s why I sit on committees and working groups, so I can make the improvements that enhance the lives of others. My involvement with Patient Voices Network was a game-changer from the first time I attended the orientation session. PVN is an organization in British Columbia that allows ordinary citizens to have a say in how health care is delivered in our province.
Through my involvement with PVN, I’ve been able to attend conferences and education sessions, sit on committees (4 of them at the moment!) and take part in surveys, including being part of a group that is actually creating a Provincial survey for release in the next year. I’ve traveled for my volunteer work, met incredible accomplished people at all levels of business and government and work alongside other Patient Partners who, like me, are out there making change happen.
I Can Spend Time with Loved Ones
Being able to spend time with my husband and kids and friends is critical to my overall wellbeing. Ray and I have a motorcycle and we love to go for rides around Vancouver Island and the Gulf Islands. When I travel with my volunteer work, I’m often able to meet with our daughter Ashley for lunch or dinner in Vancouver where she works, and this is a huge treat. Our son Troy is in Calgary and I am able to see him when I travel there to stay with a dear girlfriend Charlotte twice a year. These are great blessings to me!
I don’t have a lot of friends who live near me, but I treasure the ones I can get together with all the more, especially Lorna. My online friends play an important part in my life as well –I’d be lost without them. I belong to a few online groups who fulfill a need in me that only they could meet. My body and mind function better because of all these interactions and I tend to forget that sometimes, especially when I’m having a high pain day. I can get very reclusive, but it’s good to know that loved ones are there when I need them, just as I am there for them.
I’m Still Able To Read And Listen To Music
I consider myself lucky that none of my health conditions have taken away the deep pleasure I get from reading and from music. I love reading the life stories of others in the form of biographies and autobiographies. Great fiction warms my heart. True Crime stirs my compassion for others. Reading a good book of any genre is a total act of joy for me and to lose that ability would be heartbreaking, even with all the other options available.
The same goes for music. I don’t listen to music every day, or even that often, but when I’m in the mood for it, it completely fills my soul. My tastes are eclectic, running from Acapella to Zydeco and I’m grateful there are so many ways to be exposed to music in this digital age. The internet has been a wonderful source of entertainment in my life and I’m thankful my body allows me to enjoy the endless variety it brings.
I’m Grateful To Be Able To Blog
No matter what my body throws at me physically, I’m still able to write and for that, I have no words. Writing is very personal for me, as it’s all based on my life and what I’m going through. My thoughts and hopes and disappointments are all shared in equal value and it’s a unique feeling to expose myself like that. I don’t mind the scrutiny at all, because I do this of my own free will, but there are times I wonder if I should censor myself more or be even more open.
No matter how bad things get for me physically, I cling to the knowledge that it can get better. Yes, it might get worse, and often does, but even in the worst of my pain, when I’m writhing in bed in agony, there’s a part of me that refuses to give up or give in. That tiny stubborn piece of me that says “hold on, pain ends.” HOPE.
It’s an honour to know that you, dear reader, are taking in my words and finding something useful. That’s something I’m grateful to my body for, too. No matter how bad things may get physically, you can’t take that away from me.
Fibromyalgia is a complex condition that affects millions of people around the world. There are many questions that people ask when they first find out they have Fibro, and I thought I’d answer some of the more common ones, to help provide some education.
What Are The First Signs Of Fibromyalgia
There are many signs of Fibro but the ones most people experience first is widespread pain and tenderness throughout the body. You may experience pain in only one or two areas, or it may be your entire body. Typically, there are tenderpoints at 18 specific sites on your body, and these are used to help determine if you have Fibro.
Other symptoms of Fibro include:
What Are Tender Points?
Tender points refer to 18 locations on the body that are ultra-sensitive to pain when touched or pressed. Fibro is frequently diagnosed using the Tender Point Test…if you have 11 of the 18 points, you are considered to have Fibro.
Is Fibromyalgia An Autoimmune Disease?
Fibromyalgia is NOT considered an autoimmune disease. Instead, researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.
Fibromyalgia doesn’t qualify as an autoimmune disorder because it doesn’t cause inflammation. Fibromyalgia is difficult to diagnose because its symptoms are similar or associated with other conditions, including some autoimmune disorders.
In many cases, fibromyalgia can occur simultaneously with autoimmune disorders.
Emotional or physical trauma can cause the development of fibromyalgia and trigger symptom flare-ups. The mechanism behind this is associated with the affected individual’s hypothalamic-pituitary-adrenal axis. Emotional stressors can cause the physiological stress response to become activated, and lead to the delivery of sensory input information to the brain.
Repeated and excessive stimulation of the functional units of this response in an individual can cause their effector systems to become more sensitive. Greater sensitivity causes alternative or less significant stressors to activate the stress response easily.
The combination of the stress response, emotional reactions, physiological responses, and biological reactions that occur and interact with each other due to physical and emotional trauma can cause the development of fibromyalgia.
Of the population of fibromyalgia patients, around half has existing post-traumatic stress disorder, and two-thirds of these individuals had developed fibromyalgia after the commencement of their PTSD. Some individuals may be at an increased risk of developing fibromyalgia due to the failure of certain psychological buffers to work effectively on emotional stress that is caused by everyday life events.
Physical trauma contributes because it causes emotional stress. These mechanisms related to the patient’s brain may primarily drive the chain of neurophysiological responses known to cause fibromyalgia.
Is Fibromyalgia Real or Fake?
Doctors and patients alike state that fibromyalgia is a very real condition. Pain is often subjective and can be difficult to measure. Because there are no lab tests that can show Fibromyalgia, people assume that it is fake. As a result, the most common misconception about fibromyalgia is that it isn’t a real condition.
In both Canada and the United States, fibromyalgia is now considered a condition that qualifies for Disability. The European Parliament has signed a declaration calling for the recognition of fibromyalgia as a disease which causes disability with a right to claim exemption.
What Are The Best Medications For Fibromyalgia?
NSAIDs (non-steroidal anti-inflammatory drugs) like naproxen (Aleve) and ibuprofen (Motrin, Advil) don’t appear to work for fibromyalgia pain. Opioid narcotics are powerful pain-relieving medications that work for some types of pain, but they don’t always work for fibromyalgia. They can also be harmful—and addictive.
The narcotic-like Tramadol (Ultram) has been shown to have some effectiveness with Fibromyalgia for pain relief. Low-dose amitriptyline can also be helpful. Tizanidine and cyclobenzaprine are muscle relaxants that help treat muscle pain from fibromyalgia.
There are three medications that have been approved for use for fibromyalgia. These medications include Cymbalta (duloxetine), Savella (milnacipran) and Lyrica (pregabalin).
Each of them works in the brain: Cymbalta and Savella belong to a class of medications called serotonin and norepinephrine reuptake inhibitors (SNRIs) whereas Lyrica is a drug that targets nerve signals. It has long been used to relieve nerve pain in patients with shingles and diabetic neuropathy. It is also used to treat partial seizures.
For other treatments, this post offers several suggestions for ways to help with Fibro pain. Another option is to try Cannabis or CBD Oil.
How Life Changing Is Fibromyalgia?
Fibromyalgia can affect you in both mild and severe forms. You may find that with medication, you are able to continue to work and engage in other activities without discomfort. Other people find that even with medications, they are in too much pain to maintain their previous lifestyles.
Disability may need to be sought if you are unable to continue working because of your Fibro. You may need to modifiy activities, use mobility aids or adaptive devices or otherwise change your lifestyle to accomodate your pain and fatigue. Every individual will feel their Fibro differently and you may find that your condition changes constantly as well.
What Helps Fibromyalgia?
Rest, good nutrition, mild exercise and a positive frame of mind all go a long way in helping to live with Fibromyalgia. Lack of movement is one of the biggest mistakes you can make if you have Fibro. It causes your muscles to tighten even more, so exercise such as walking, biking or swimming can be helpful in keeping you flexible and having less pain.
A diet rich in fruits and vegetables, lean protein and good carbohydrates is essential. If you are overweight, you might want to try losing some extra pounds to help with joint pain.
Getting the proper amount of sleep can be very difficult with Fibromyalgia. Follow a sleep plan at night to get your best rest possible and nap if you need to during the day in moderation. A well-rested body is better able to function fully.
Finally, try to maintain a positive perspective. If you find yourself struggling with negative thoughts, it may be helpful to seek counselling or coaching. Support groups either in-person or online can also be very helpful.
Fibromyalgia can be a very difficult condition to diagnose and treat, but as you can see, there are things you can do that make a difference. The more you can educate yourself, the better your outcomes can be. Remember,
Living with Chronic Pain is never easy. You’re desperate for the pain to end, but most doctors are unprepared in helping you live with Chronic Pain. They seem to be limited to treatments like prescription medications and that’s about it.
There are many ways that you can help improve the quality of your life and I’d like to share several of them with you. I have not personally tried every technique listed, but all of them are worth investigating so you can gather as much information as possible on whether they are worth it for you. Let’s get started.
There are various types of massage available and all of them have the potential of making your Chronic Pain feel better. Styles include:
Each style works the body in a different way and all styles have the ability to help with:
Chiropractic is a discipline that is concerned with the diagnosis and treatment of mechanical disorders of the musculoskeletal system, especially the spine. Chiropractors have proposed, especially those in the field’s early history, that such disorders affect general health via the nervous system
Chiropractic care provides diagnosis and treatment without the use of drugs or surgery for problems related to your muscles, joints, nerves, and spine. Common conditions that are treated include low back pain, neck pain, sciatica, headaches, and sprains. Chiropractic doctors can also provide advice on nutrition and exercise to support recovery and promote prevention.
Ayurvedic medicine (“Ayurveda” for short) is one of the world’s oldest holistic (“whole-body”) healing systems. It was developed more than 3,000 years ago in India.
It’s based on the belief that health and wellness depend on a delicate balance between the mind, body, and spirit. Its main goal is to promote good health, not fight disease. But treatments may be geared toward specific health problems.
Students of CAM therapy believe that everything in the universe – dead or alive – is connected. If your mind, body, and spirit are in harmony with the universe, you have good health. When something disrupts this balance, you get sick. Among the things that can upset this balance are genetic or birth defects, injuries, climate and seasonal change, age, and your emotions.
Those who practice Ayurveda believe every person is made of five basic elements found in the universe: space, air, fire, water, and earth. These combine in the human body to form three life forces or energies, called doshas. They control how your body works. They are Vata dosha (space and air); Pitta dosha (fire and water); and Kapha dosha (water and earth).
Everyone inherits a unique mix of the three doshas. But one is usually stronger than the others. Each one controls a different body function. It’s believed that your chances of getting sick — and the health issues you develop — are linked to the balance of your doshas.
An Ayurvedic practitioner will create a treatment plan specifically designed for you. He’ll take into account your unique physical and emotional makeup, your primary life force, and the balance between all three of these elements.
The goal of treatment is to cleanse your body of undigested food, which can stay in your body and lead to illness. The cleansing process—called “panchakarma”— is designed to reduce your symptoms and restore harmony and balance.
To achieve this, an Ayurvedic practitioner might rely on blood purification, massage, medical oils, herbs, and enemas or laxatives.
Reiki is a Japanese technique for stress reduction and relaxation that also promotes healing. It is administered by “laying on hands” and is based on the idea that an unseen “life force energy” flows through us and is what causes us to be alive. If one’s “life force energy” is low, then we are more likely to get sick or feel stress, and if it is high, we are more capable of being happy and healthy.
A treatment feels like a wonderful glowing radiance that flows through and around you. Reiki treats the whole person including body, emotions, mind and spirit creating many beneficial effects that include relaxation and feelings of peace, security and wellbeing. Many have reported miraculous results.
Reiki is a simple, natural and safe method of spiritual healing and self-improvement that everyone can use. It may be effective in helping Chronic Pain, and generally creates a beneficial effect. It may also work in conjunction with other medical or therapeutic techniques to relieve side effects and promote recovery.
Healthline.com says that in recent years, the treatment of fascia has exploded in popularity. The idea is that the fascia, or myofascial tissue, contributes to pain and cellulite when it’s tight.
For this reason, fascia manipulation, a technique that aims to loosen the fascia through physical manipulation and pressure, has become a trending topic in the health and wellness realm.
One widely popular method is fascia blasting. This technique uses a tool that’s designed to loosen the fascia, which is supposed to reduce pain and cellulite.
A non-physical method of managing Chronic Pain, Cognitive Behavior Therapy, aka CBT is a structured, time-limited, problem-focused and goal oriented form of psychotherapy. CBT helps people learn to identify, question and change how their thoughts, attitudes and beliefs relate to the emotional and behavioural reactions that cause them difficulty.
It works on Chronic Pain by helping to remove limiting thoughts about your pain, and move you towards a better understanding of what pain is, and how you can manage it. Pain doesn’t always mean something is getting worse…and when we catastrophize pain, we can actually amplify it. By using CBT, you:
identify distortions in your thinking
see thoughts as ideas about what is going on, rather than as facts
stand back from your thinking to consider situations from different viewpoints.
Acupuncture is a form of traditional Chinese medicine that has been practiced for centuries. It’s based on the theory that energy, called chi (pronounced “chee”), flows through and around your body along pathways called meridians.
Acupuncturists believe that illness occurs when something blocks or unbalances your chi. Acupuncture is a way to unblock or influence chi and help it flow back into balance.
Acupuncture is done by putting very thin needles into your skin at certain points on your body. This is done to influence the energy flow. Sometimes heat, pressure, or mild electrical current is used along with needles
As you can see, there are many alternative forms of treatment that might be worth looking into. Which ones have you tried already? Which ones would you like to try? Leave your comments below. Remember,
Note: this post contains Affiliate Links which provides me with a small income at no cost to you. Clicking on the links will take you to specific products I suggest. You are under no obligation to purchase, these are simply my recommendations.
When you’ve been living with Chronic Pain for an extended period of time, you know that you’re going to have good days and bad days. What do you do when you start worrying about the bad days – when they’re going to hit, how long they’re going to last and how can you manage to get through them?
I think one of the most important things you can do with Chronic Pain is to acknowledge it. Just because you live with it every day doesn’t mean you’ve come to peace about it. You may try to ignore it, hoping it will go away or you may confront it head-on. It’s important to recognize it for what it is though…pain that disrupts your life and causes your world to spin on a wobbly axis.
Chronic Pain is a force to be reckoned with. You may live most of your time with your pain at a manageable level, but inevitably, there comes a time when a flare-up happens and you find yourself struggling to manage. There are tips and tricks for flare-ups that might help and I’d like to suggest the following:
Easier said than done, but when your body has launched into “fight or flight” mode, you need to find a way to slow that adreneline down to where you are back in control. This is a good time to try some deep breathing techniques such as the 7-4-7 approach.
Breath in for a count of 7, hold for a count of 4 and breath out for a count of 7. Do this several times until you are able to feel your body starting to relax a bit. By focusing on the breathing, you trick the body into believing the danger is over, so your heart rate returns to normal. You will likely still feel pain, but it should be more manageable.
Heat and/or Cold
Heat and cold are both equally good for dealing with pain. I personally prefer heat as it helps to relax my tense muscles. Cold is better for acute injuries or when inflammation is a problem. Using a heating pad like this one can offer the benefits of a steady source of heat without injuring the skin:
Many people find that Essential Oils offer them benefits to help relieve their Chronic Pain. Certain blends of Essentials can help to control pain, relax you and ease your state of mind. There are many sources of Essential Oils – I like these ones on Amazon.com:
Knowing more about Chronic Pain can help you deal with it better. There are numerous books out there that serve as excellent resources for knowledge. I personally have read these two and found them extremely useful:
Support Groups, either in person or online can be so valuable when it comes to dealing with Chronic Pain. Just knowing that others are going through the same thing as you can be empowering. To find a support group in your local area, trying Googling “Pain Support” and your city’s name.
Online, I suggest finding a good Facebook group. There’s one for almost every Invisible Illness (and Visible Illnesses as well) and can be easily found by searching by name in Facebook. One that I recommend is here:
Based in Australia, they have members from around the world, but predominantly Australia, the USA and Canada. I am a member here and the group is extremely outgoing, friendly and they “get it”. Everyone lives with their own medical challenges, so they understand what you’re going through and are super supportive.
My next guest is the amazing Sam Moss from Australia. She has a fascinating story so I hope you enjoy reading about her!
Introduce yourself and tell us a bit about you…
Hi, I’m Sam and I live with my beautiful husband in Australia. I have been living with a series of complex medical conditions for over 9 years now. In 2014 my health deteriorated to the point of needing to medically retire.
I had lived life in the fast lane for 30 years with a successful management career in financial services. Prior to medically retiring I was an Executive Manager in the Financial Services Industry. A career I loved as it predominately involved coaching and developing a Leadership team.
I also enjoyed various change management consultancy roles for not for profit organisations. I loved every minute of those able bodied years and am very grateful for the experiences I have had.
My career highlights include;
Contributing to creating an award winning customer experience culture in the various Banking and Insurance departments I’ve managed.
Leading an inspired and motivated team of people, many of whom are now lifelong friends.
Receiving the inaugural Banking Leader of the Year Award just before I medically retired (such a special parting gift)
Restoring an historic church building to its former glory,
Appointed as a management consultant in the Anglican Church, and assisted Senior Church Leaders (Clergy and Lay) to bring about exciting reformative change.
Now I’m medically retired I’m exploring my long term passion to be a writer. I’m a member of the Chronic Illness Bloggers Network and an ongoing contributor to “The Mighty”.
With time on my hands I decided to start a blog called ” My Medical Musings” as a way to reach out to others dealing with life changing health episodes. I also founded a Global online support forum, “Medical Musings with Friends”. It’s a place for those living with chronic illness or their carers, wanting the hand of friendship, as they journey an often lonely and difficult path.
It is a place to laugh, cry, share and vent together. It’s my absolute passion and honour to walk daily with others who understand exactly what it is like living with chronic illness.
When health gets complex, it’s really important to find others who are also battling multiple issues to share the never-ending complexities that arise and share all aspects of life living with chronic disease.
One fascinating fact about me is:
Not sure there’s much fascinating about me at all. My husband and I have moved 17 times in 24 years of marriage!! Some of those moves have been interstate and we have seen a lot of Australia as a result. That part has been a blessing.
Yes we are expert movers and this last move is definitely it. The combination of my husband’s work as an Anglican minister and my work in the Bank, was the reason for the majority of the moves. We have just settled into a lovely Lifestyle village which works perfectly for my disabilities, so hopefully no need to move again…EVER!!!
Chronic illness(es)/disabilities I have…
The list is way longer and complex than I would like, but here goes:
Rheumatoid Arthritis ( diagnosed 2010)
Sjogrens Syndrome ( diagnosed 2011)
Prolapsed Rectum ( diagnosed 2011)
Permanent Colostomy ( 2013)
Progressive Rare Bone Disease which causes my long bones to pathologically fracture. This includes both my femurs, 7 foot fractures, spinal fractures and severe Lumbar Spinal Stenosis with compressed spinal cord. Fractures won’t heal and surgery to fix my spine constantly fails as the bone disease continues to attack it.
My symptoms/condition began…
In 2010 I was in my mid 40’s, at the height of my career as an Executive Manager in a major bank.
In April of that year I was getting ready to take 6 weeks long service leave to spend some quality time with my beautiful husband. We were going on a road trip through South East Queensland down to the Hunter Valley in Northern NSW and I was so looking forward to having a break.
On the way home I started feeling really unwell and I just couldn’t shake off an extreme tiredness, joint pain like I had never experienced and abdominal pain. My hands were so sore that even the slightest touch was excruciating. I couldn’t hold my husband’s hand or pick anything up. My hips were so painful that walking normally was becoming difficult unless my husband supported me. We knew something was not right.
As soon as we got home we headed for my GP and a whole list of Specialist appointments followed. Long story short, 2 months later I was diagnosed with Rheumatoid Arthritis (RA) after being first diagnosed with Q fever, Ross River Virus and a list of other false positive diagnoses.
My body was not behaving normally and my Doctors and I were to discover over the next 6 years just how abnormal it actually was. I had no idea what lay ahead.
As time went on…
With RA medication on board, I continued to work for another 12 months before my body began to basically break down bit by bit. My last day in the office was Melbourne Cup Day 2011. I was trying to push through the day and getting ready to judge my Departments “Fashion on the Fields” when my Personal Assistant found me in agony in the ladies bathroom and rang my husband to come and pick me up.
From that day my life was never to be the same again.
In 2011, I was diagnosed with a prolapsed bowel which refused to mend despite 3 attempts at conservative surgery. By mid-2013 we knew we had no choice but to accept that I needed a permanent stoma.
In November 2013 I medically retired and became the “proud” owner of a permanent colostomy. It has been quite a journey with my medical team including a Clinical Immunologist, Colorectal Surgeon, Endocrinologist, Orthopaedic Surgeon, Gynaecologist, Ear Nose and Throat Specialist, Infectious Disease Specialist, Neurologist and Dermatologist, all trying to work out what is causing my health issues.
I have been called “special”, “unique”, “one of a kind” but really they all believe overall, aside from Rheumatoid Arthritis, I have a rare idiopathic disease (a disease of its own kind).
I have lost count of the number of times I have been hospitalised over the past 8 years. I have had 14 surgeries since October 2010, with the prospect of more ahead.
I thought Rheumatoid Arthritis and a permanent colostomy would be an end to what my body was going to challenge me with. I hoped I could settle comfortably into medical retirement with my husband but I soon came to realise that my life was going to be an ongoing medical adventure.
In October 2014 my left femur (thigh bone) broke spontaneously. Yes, all on its own, I didn’t fall from a great height or have a major car crash, which is apparently the type of accident I should have been involved in to have the strongest bone in my body break. Mine just broke as I was opening my bedroom door!
It is called a pathological break and my Specialists believe I have a rare genetic bone disease. My bones are extremely dense and marble like and my bone turnover is almost non-existent. We also now know that my bones are dying and much of the soft tissue around my bones is also dead tissue.
12 months after my leg broke, my right femur was also showing signs of disease on MRI with bone marrow involvement so a rod had to be placed in that to prevent an imminent break and repeat medical emergency like we had with my femur break in 2014.
I am constantly dealing with multiple foot fractures and none of my broken bones in my legs or feet will heal. My bone pain is excruciating on a daily basis. My left femur which snapped in two is still broken nearly 5 years later and has been diagnosed as a non-union break. I have been on two crutches or a walker since the femur broke and also have a mobility scooter. The disease is now attacking my spine and causing excess bone to grow into the spinal cord. Despite surgeries to try and remove the bone, it grows back so quickly the surgeries are deemed as “failed”.
My diagnosis process was…
Complicated to say the least. As above it was a long process but also quick in the sense that I was referred to the right Specialists and soon had a team working on my case to try and work out what was going on. Some diagnoses were by chance. 6 months prior to my femur snapping in two, my Clinical Immunologist had sent me for a Bone Density Scan.
His concern was low bone density (Osteoporosis) because I had been on Prednisone for 4 years. He was so surprised to find I had extremely high bone density, really high. That just shouldn’t have been the case. He quickly referred me to an Endocrinologist who began monitoring my bone blood markers. All was not good. High Bone Density and low bone turnover meant new bone was being laid down but the old bone wasn’t being replaced. Bone was being added to bone and my skeleton was getting thicker and thicker.
I remember my Endocrinologist saying, “hopefully it will just settle and you won’t get any broken bones”.
I was suffering with terrible bone pain and within 6 months of her comment she was by my hospital bed in a state of shock as my left femur had snapped in two so spectacularly. I was so blessed to be alive as I was told it could have severed my femoral artery. I was also the pinup girl in the hospital…well, my x-ray was!!
The hardest part of living with my illness/disabilities is…
For me it’s the constant daily pain and exhaustion that accompanies it.
A typical day for me involves…
Wake up around 6.30am, from a generally broken night’s sleep;
Take pills before I try to get out of bed. Crutches await my descent from my bed….the first effort to get out always fails. I just can’t weight bear until the pills help a little. My back often paralyses my legs and I simply can’t move until anti-inflammatory meds help take the pressure off my spine. When I first get up I only get as far as the ensuite and then straight back to bed;
Eventually I make it to the kitchen and put the kettle on. Depending on how I am feeling and if I need to stand rather than sit, I’ll make a simple breakfast of cereal with banana and a cup of tea. If I can’t do it my husband does. We sit and eat breakfast in the lounge room and watch the morning news and chat together. I also check in on my online support forum, emails and messages;
I take my second set of morning pills with food. These help but they fatigue me for the first 2 hours of the day making it even harder to coordinate movement;
I rarely cry. I don’t feel sorry for myself. I’ve become used to my circumstances, although I still make plans in my head of all I’d like to do during the day, knowing that I’ll be eliminating items from that list constantly. Staying perfectly still the leg hurts but it’s a duller pain.
The slightest movement and it’s like I’ve broken it all over again. Fractured feet and stress fractures in the opposite leg add to my overall disability. The stenosis is by far the most crippling. Even lying down only brings temporary relief and I soon have to get up and try and move;
I’m determined but after breakfast I have no energy to get dressed just yet. I leave showering until the evening after dinner. So much easier to shower then knowing I can collapse into bed straight away.
In the morning I want to run around and stack the dishwasher, dust the furniture, get dressed and do my hair and makeup all before 7.30am. Ha! Not happening! I used to move at such a fast pace. I miss that. I will do all those things but it will take me 3 or 4 hours at a ridiculously slow pace.
I get told others should do those tasks for me but it is so important for my well-being that I keep as much independence as I possibly can. My husband does all the washing and cooking as that is outside of my capabilities.
I still have goals to get better and resume those activities, even though I know it’s unlikely. There is no cure for my disease, it’s progressive and my prognosis is unknown.
After lunch the fatigue from battling the pain is beyond belief so I need to lie on the bed for at least an hour, if not longer. I’m not a day time sleeper so I just relax as best I can, read, watch TV, blog, write articles and manage my online forum.
In the late afternoon my husband and I will have afternoon tea on our back patio. The fresh air and sitting in our little courtyard/garden brings me so much joy and is so relaxing. We’ve set it up like our own private cafe and I arrange our afternoon tea as if it were served at a boutique coffee shop or tea house. The simple things bring such joy.
I sit in the lounge room for dinner while we watch the news. I take my evening pills, shower and am back in bed by 8pm. My husband joins me by 9pm and we watch TV together. We love our evenings.
I rarely leave the house aside from medical appointments but I still have goals to get out a little more and we’ve started to achieve those once a fortnight.
All of the above is my normal routine unless my stoma becomes over active. I then have to manage changing my stoma appliance, putting all best laid plans out to pasture.
(I have a permanent colostomy due to a severe rectal prolapse. A ‘colostomy’ is a stoma formed by bringing part of your colon (large bowel) out on to the surface of your abdomen).
I do actually love my stoma, which I’ve had for 6 years on the 11th November. The pain and disability from having a severe rectal prolapse was horrific. My stoma restored some quality of life and I’m so grateful for it.
The one thing I cannot live without is…
Being ill/disabled has taught me…
Life isn’t over with a chronic illness diagnosis and disability. It’s just different. New opportunities to connect with others and pursue new passions and goals, is achievable. It’s all about our mindsets. It’s about choosing to embrace new ways of living. I’ve learned to focus on enjoying moments, rather than planning ahead for good days/weeks or months.
In many ways so much of my life has changed, but nothing has changed where my faith and trust in God is concerned. I am resolved to make the best of each and every day I am blessed with.
I love each day, as I know despite my unrelenting pain, I will have moments within the day that bring joy, laughter and connection with others in some small way. Just writing this has been something I’ve enjoyed. I will definitely be collapsing on the bed straight afterwards but it’s been a delight and an honour to collaborate with Pamela on her blog.
My support system is…
My Husband is my full time carer and my main support.
My Online Support Forum Members provide me with so much love and encouragement on a daily basis
Close Friends who stay in touch with a text, email or a visit (for those who live close enough)
Our family all live interstate or a few hours away so we don’t get to see each other in person much but they are amazing in their care and concern, and also regularly text, email and phone my husband and I.
I have Government Funded support for Physio, Podiatry, Occupational Therapy, Carers, transport, home modifications, plus permanent approval for Residential Care if my health progresses to the stage of need 24 hour around the clock care.
Our Church, although having just moved to a new suburb, we are still in the process of forming new connections.
If I had one day symptom/disability-free I would…
Go for a long drive with my husband in the country. Visit little towns, stop at gorgeous cafes and walk for miles around country shops.
One positive of having a chronic illness/disability is…
I think having true empathy for others suffering with chronic illness/ disability has been a growing experience for me. We think we understand what it’s like but when you’re relatively healthy, life is busy and we don’t take enough time to look outside of our own world, to truly understand another’s needs and struggles.
Ultimately the one positive….. the gift of time
One final thing I want people to know is:
That moment when the focus shifts to the possible, rather than looking at the impossible, is a life changing moment. It’s the moment a cheerful heart has room to emerge, despite our chronic illness