It’s the Little Things That Matter They’re the things that mean a lot They’re the things that I can count on When I’m giving things a thought
Oh there’s lots of big grand gestures That are meant to mean big things But in the end, they aren’t the ones That tug at my heartstrings
I prefer the smaller hidden ones The things that seem quite shy The little acts that are given out Not meant to catch your eye
It’s the little things that matter That make a quiet sound I love them best from all the rest They make the world go round
by Pamela Jesssen
I’m fighting a battle that no one can see Invisible Illness, it’s all inside me On the outside, I’m perfect, look healthy and fit But inside is different, and I’m all over it
Pain is my companion each day and each night And Chronic Fatigue is something else that I fight My body is aching, from my head to my toes How long can I do this, God only knows
There’s a feeling of throbbing in all of my joints My hands and my feet feel like stabbing pinpoints I’m shaky and trembling and can’t stand up long And yet on the outside, I look so damn strong
My heart feels so weary each new day I face The world ’round me screams I must pick up my pace But my spoons are all gone and I’ve none left to give And I’m telling you now, this is no way to live
There is still hope inside me, and I must be strong There are good days ahead and for those days I long I still have my loved ones who stand at my side My husband’s amazing, my kids are my pride
My cat loves to cuddle, she seeks out my lap I love her, she’s purrfect, a warm furry wrap My garden is growing, there’s roses galore Hydrangeas, Marigolds, Pansies and more
I’ve good books to read and Netflix to binge Avengers! The X-Men! Superheros! (don’t cringe!) A good movie can take my mind off of my pain And there’s several I don’t mind watching again
What I’m trying to say is there are good things in life And I have to cling on to them, despite any strife For these are the things that help me get through the days We all have our tricks, and we all have our ways
I’m grateful for everything and I often give praise For the sunrise, the sunset and all the good days Days when I manage the pain and don’t fade When I come out on top and know I’ve got it made
There are so many people who are worse off than me And I try to remember them, for they help me see that my life may hold pain, but that’s not my whole life I’m a friend, and a mother, an advocate and wife
I’m able to offer my time and my skills I volunteer often (despite all my pills) I help to make healthcare better for all It’s intensive, rewarding and for certain my call
I blog about Health, and I share what I know There’s a network of us and we continue to grow I pray for the cures to the issues we face and I share education, in my little blog space
So, my life really isn’t all that bad in the end It’s all about attitude, and sometimes I pretend That pain doesn’t grip me, fatigue isn’t there Fake it til you make it, even if it’s not fair
Life is a choice, and I choose to smile Despite any hardships, it’s just not my style To wither and whine or to despair with no hope I refuse to sink down, so throw me that rope
My friend, make the most of all that you’ve got Life is short and we’re only given one shot Look to the bright side, and may joy be your friend From now to forever, beginning to end
There is Always Hope
by Pamela Jessen
All rights reserved. Copyright 2019 by Pamela Jessen. These works may not be reprinted without the permission of the author.
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…
Do you like to wait for things? Are you patient enough that having to wait doesn’t really bother you, or do you get frustrated when you have to wait, even a short time?
I was thinking recently about all the waiting my illnesses have caused me to do. For starters, I wait to feel less pain in my day. I wake up in the morning stiff and sore and sometimes I have to wait to get out of bed because I’m in too much pain.
I take my medications, and then I have to wait for them to kick in. There’s never instant relief, no matter how I long for it. Once the pain pills have started to work their magic, I’m able to start my day. At this point, I’m usually starving because I had to wait to eat.
The whole day goes like this. I wait to get pain relief, I wait until I feel hungry, I wait to take a bath until my husband is home, I wait to do any type of work or hobby until I have some energy. I wait to feel happy. I wait for my husband to come home from work so I have someone to talk with. I wait for the phone to ring from friends who’ve forgotten me.
I don’t mean to sound like a pity party, I’m just sharing the realities of my life. I can’t get out and about to make new friends and with Covid-19 in our lives, it would be impossible to do even if I was able to get out of the house. So, I wait for a miracle to happen, for my pain and fatigue to disappear.
What have I learned with all the waiting? Patience for one thing. I know that things don’t just happen overnight and that all good things take time. I know that I’ll always live with pain, but I’m learning how to manage it as best I can, with the various tools at my disposal.
I use medications, massage, deep breathing, guided meditations and more to manage my days. Sometimes I can distract myself with a good book or a movie. Sometimes a treasured hobby can keep my mind occupied.
Sometimes I write….this blog, my poetry, a letter to myself. Getting words onto paper holds a special place in my heart and I find it healing to go back and read what I wrote during stressful times.
Telling someone about what I’m going through can be very helpful to get me through the day. Often I’ll touch base with my dearest friend Charlotte and just share what’s on my heart. We’ve been friends for 20 years now and she knows me so well.
She asks me the right questions and probes my answers to get to the heart of things. I love how she listens and offers words of wisdom. It makes the waiting easier.
I’ve also been involved in Pain Management groups before and I find them so helpful, because it’s people just like me going through the same situations that I do. They get me…they know what the waiting is like.
I am an active volunteer and sit on several various committees that help to make real change in how Health Care is delivered. One is a Physician Improvement Measurement Group where we survey Doctors on how they can improve their practices.
Having spent much time in Emergency Departments over the years, I also volunteer with the BC Emergency Medicine Network. I sit on the Executive Committee and on the Clinical Resources Committee where we are currently updating all the information sheets that are handed out to you when you are discharged from the Emergency Department. It’s a big project but so worthwhile.
Other volunteer work includes sitting on the planning committee for a new Health Care Centre in my hometown of Langford, BC. This HCC will help provide medical care to the many people who don’t currently have a family doctor.
Do you find yourself in the same position as I do with waiting? Are you always waiting for the next thing to happen. I’m learning how to ground myself in the moment and not let waiting take over my life. It’s a minute by minute process and I’m constantly having to reel myself in from distractions, but it’s so satisfying when I do.
I may always be kept waiting for certain things with my Fibromyalgia and my Chronic Fatigue Syndrome, but I’m becoming more aware and finding ways to make it positive and not negative. I hope you can too.
Share your thoughts in the comments below. I’d love to hear from you. Remember,
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.
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 want to tackle a hard subject today…the emotions that surround living with a Chronic Illness. Every day, we survive the physical pain, but we don’t always talk about the emotional pain that comes with being ill. Let’s change that now.
When I first started feeling the effects of Fibromyalgia and Osteoarthritis along with my other Chronic Illnesses, I was generally able to function without a lot of changes in my life. I needed some pain medication but found that it helped and didn’t really alter my life, so ended up having some fairly easy years after my initial diagnosis.
After a period of time, the medication needed to be increased and new drugs had to be introduced to help combat the increasing pain and symptoms. I started taking Lyrica for my Fibro – a drug that saw me gain 40lbs in 3 months. This is when I first realized that having Chronic Illness was affecting me mentally – I was pissed about the weight gain but resigned to the fact I’d have to live with it. Thankfully my doctor worked with me to find Cymbalta instead and I managed to lose most of the weight I had gained.
Thus began a pattern where the drugs would work for a while and then lose their effectiveness, necessitating an increase or change in meds, which triggered more anger and emotion. It was a vicious circle…I just wanted to be rid of the pain I was in, but it was getting harder and harder. The side effects of the various meds being introduced were also debilitating and my anger grew at what my body was putting me through.
As Things Changed
Then came the point where my body had become so broken down that I needed to leave my job and go on long term disability. I can still remember to this day, 10 years later, how incredibly disappointed in myself I was. My body had betrayed me in every way possible. I was at the top of my career with the opportunity to move into some dream roles and suddenly that was all snatched away from me. Devastated doesn’t even begin to come close to how I felt and I ended up in a depression that was hard to come back from.
It took me a long time to realize that my feelings were valid and I was entitled to feel how I felt. I thought I had to suck it up for everyone around me, and that just wasn’t a place I was ready for. I hadn’t processed my emotions, and they felt just as raw a year later as they had when I first left work. It was only through taking some Cognitive Behaviour Therapy (CBT) classes that I started to see how I could validate my feelings yet work through them and come out stronger.
Having these strong emotions was scary though because I couldn’t separate them at first from the actions of being in pain, and just feeling like a failure as a person. It took time to realize that I had not failed, but my body had. Two very different things. By recognizing the difference, I was able to start accepting that I was not a bad person and that I had done nothing to cause this to happen.
I didn’t ask for Chronic Pain and Chronic Fatigue. I was simply unlucky enough to be a person to have to live with these conditions and that meant I had to find a healthier way of dealing with the emotions this generated. I was not unreliable, my health caused my reliability to suffer. My worth was not just because of my job, but by virtue of simply being here. I was still a good person who had something bad happen to her.
Do you see where I’m coming from and what I’m trying to say? Just because you have a Chronic Illness doesn’t make you a bad person. This condition has happened to you and changed you, against your will. Learning how to live with it becomes the new normal. Once I recognized this, I was able to take a step back and start taking my life back again.
I worked with my doctor to find a treatment plan that benefited me. This included some medication changes and additions, as well as adding healthy new components to my life such asmeditation, music therapy,gentle exercise, stretching, beginners yogaand balancing my eating habits. I stopped feeling guilty when I had to cancel or change plans because Illness took over. I couldn’t help it when those things happened, so why blame myself? I put the blame where it belonged…on my Illnesses, and left it there.
I was blessed to be able to start this blog, so I could reach out to others with Chronic Pain conditions and help them navigate their way through their experiences. It was very empowering for me and I gained back huge amounts of confidence as I wrote articles and posts. Knowing I was reaching others and actually helping them was a huge confidence booster.
I also found myself able to start volunteering again, and now sit on 4 different committees, all devoted to aspects of health care. I am a member of a Provincial Measurement Working Group, creating a survey for patients in BC, Canada about their ER experiences and I sit on two committees with the BC Emergency Medicine Network. I continue to seek out new opportunities to volunteer and was last year was nominated for three WEGO Health Awards – including one for Best in Show: Blog and one for Best Kept Secret (regarding my blog).
To wrap this up, I want to reiterate that I think it’s important to sit with your feelings on a regular basis when you live with Chronic Illness. If you need the help of a professional therapist to process what you’re going through, do it. There’s no shame and definitely no harm in learning how to deal with all the emotions that come with a Chronic condition. In fact, I highly recommend it as a part of your overall treatment plan.
We go through so much on a daily basis that the notion we’re not affected emotionally is ludicrous. Don’t fall into the trap of being “stoic” and taking the attitude that you can handle things on your own if you truly can’t. Reach out for help, whether it be a professional, a friend, or a spiritual advisor. The peace of mind of knowing you’re not alone in your feelings is precious. And remember…
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!
April is Parkinson’s Disease Month and I wanted to talk to you all briefly about this condition as part of my mandate to highlight “invisible diseases”.
Although there can be some visible signs when you have Parkinson’s Disease, it often starts out very subtle and hard to notice. A tremour in one hand might be the only outward sign in the beginning.
Here is an overview taken from the Mayo Clinic website. Click on the link for the full description on Parkinson’s Disease including Testing, Treatments and Living with Parkinson’s.
Parkinson’s disease is a progressive nervous system disorder that affects movement. Symptoms start gradually, sometimes starting with a barely noticeable tremor in just one hand. Tremors are common, but the disorder also commonly causes stiffness or slowing of movement.
In the early stages of Parkinson’s disease, your face may show little or no expression. Your arms may not swing when you walk. Your speech may become soft or slurred. Parkinson’s disease symptoms worsen as your condition progresses over time.
Although Parkinson’s disease can’t be cured, medications might significantly improve your symptoms. Occasionally, your doctor may suggest surgery to regulate certain regions of your brain and improve your symptoms.
Parkinson’s disease signs and symptoms can be different for everyone. Early signs may be mild and go unnoticed. Symptoms often begin on one side of your body and usually remain worse on that side, even after symptoms begin to affect both sides.
Parkinson’s signs and symptoms may include:
Tremor. A tremor, or shaking, usually begins in a limb, often your hand or fingers. You may a rub your thumb and forefinger back-and-forth, known as a pill-rolling tremor. Your hand may tremor when it’s at rest.
Slowed movement (bradykinesia). Over time, Parkinson’s disease may slow your movement, making simple tasks difficult and time-consuming. Your steps may become shorter when you walk. It may be difficult to get out of a chair. You may drag your feet as you try to walk.
Rigid muscles. Muscle stiffness may occur in any part of your body. The stiff muscles can be painful and limit your range of motion.
Impaired posture and balance. Your posture may become stooped, or you may have balance problems as a result of Parkinson’s disease.
Loss of automatic movements. You may have a decreased ability to perform unconscious movements, including blinking, smiling or swinging your arms when you walk.
Speech changes. You may speak softly, quickly, slur or hesitate before talking. Your speech may be more of a monotone rather than with the usual inflections.
Writing changes. It may become hard to write, and your writing may appear small.
When To See A Doctor
See your doctor if you have any of the symptoms associated with Parkinson’s disease — not only to diagnose your condition but also to rule out other causes for your symptoms.
In Parkinson’s disease, certain nerve cells (neurons) in the brain gradually break down or die. Many of the symptoms are due to a loss of neurons that produce a chemical messenger in your brain called dopamine. When dopamine levels decrease, it causes abnormal brain activity, leading to symptoms of Parkinson’s disease.
The cause of Parkinson’s disease is unknown, but several factors appear to play a role, including:
Your genes. Researchers have identified specific genetic mutations that can cause Parkinson’s disease. But these are uncommon except in rare cases with many family members affected by Parkinson’s disease.However, certain gene variations appear to increase the risk of Parkinson’s disease but with a relatively small risk of Parkinson’s disease for each of these genetic markers.
Environmental triggers. Exposure to certain toxins or environmental factors may increase the risk of later Parkinson’s disease, but the risk is relatively small.
Researchers have also noted that many changes occur in the brains of people with Parkinson’s disease, although it’s not clear why these changes occur. These changes include:
The presence of Lewy bodies. Clumps of specific substances within brain cells are microscopic markers of Parkinson’s disease. These are called Lewy bodies, and researchers believe these Lewy bodies hold an important clue to the cause of Parkinson’s disease.
Alpha-synuclein is found within Lewy bodies. Although many substances are found within Lewy bodies, scientists believe an important one is the natural and widespread protein called alpha-synuclein (a-synuclein). It’s found in all Lewy bodies in a clumped form that cells can’t break down. This is currently an important focus among Parkinson’s disease researchers.
Risk factors for Parkinson’s disease include:
Age. Young adults rarely experience Parkinson’s disease. It ordinarily begins in middle or late life, and the risk increases with age. People usually develop the disease around age 60 or older.
Heredity. Having a close relative with Parkinson’s disease increases the chances that you’ll develop the disease. However, your risks are still small unless you have many relatives in your family with Parkinson’s disease.
Sex. Men are more likely to develop Parkinson’s disease than are women.
Exposure to toxins. Ongoing exposure to herbicides and pesticides may slightly increase your risk of Parkinson’s disease.
Parkinson’s disease is often accompanied by these additional problems, which may be treatable:
Thinking difficulties. You may experience cognitive problems (dementia) and thinking difficulties. These usually occur in the later stages of Parkinson’s disease. Such cognitive problems aren’t very responsive to medications.
Depression and emotional changes. You may experience depression, sometimes in the very early stages. Receiving treatment for depression can make it easier to handle the other challenges of Parkinson’s disease.You may also experience other emotional changes, such as fear, anxiety or loss of motivation. Doctors may give you medications to treat these symptoms.
Swallowing problems. You may develop difficulties with swallowing as your condition progresses. Saliva may accumulate in your mouth due to slowed swallowing, leading to drooling.
Chewing and eating problems. Late-stage Parkinson’s disease affects the muscles in your mouth, making chewing difficult. This can lead to choking and poor nutrition.
Sleep problems and sleep disorders. People with Parkinson’s disease often have sleep problems, including waking up frequently throughout the night, waking up early or falling asleep during the day.People may also experience rapid eye movement sleep behavior disorder, which involves acting out your dreams. Medications may help your sleep problems.
Bladder problems. Parkinson’s disease may cause bladder problems, including being unable to control urine or having difficulty urinating.
Constipation. Many people with Parkinson’s disease develop constipation, mainly due to a slower digestive tract.
You may also experience:
Blood pressure changes. You may feel dizzy or lightheaded when you stand due to a sudden drop in blood pressure (orthostatic hypotension).
Smell dysfunction. You may experience problems with your sense of smell. You may have difficulty identifying certain odors or the difference between odors.
Fatigue. Many people with Parkinson’s disease lose energy and experience fatigue, especially later in the day. The cause isn’t always known.
Pain. Some people with Parkinson’s disease experience pain, either in specific areas of their bodies or throughout their bodies.
Sexual dysfunction. Some people with Parkinson’s disease notice a decrease in sexual desire or performance.
There are a number of different drugs that may be utilized in the treatment of Parkinson’s Disease. The most popular include:
Carbidopa-levodopa. Levodopa, the most effective Parkinson’s disease medication, is a natural chemical that passes into your brain and is converted to dopamine.
Fibromyalgia is a multi-faceted disease that affects far more than just your muscles. One of the common conditions that Fibromites experience is problems with their bowels. IBS or Irritable Bowel Syndrome can be a stand alone disease, but is often found in those with Fibromyalgia.
When you have IBS, you can experience some or all of the following symptoms:
Abdominal pain and cramping that is typically relieved or partially relieved by passing a bowel movement
Diarrhea or constipation — sometimes alternating between the two and occaisionally having both happen during the same bowel movement
“Symptoms occurring outside of the digestive tract that might be related to IBS include sleep disturbances, chronic pelvic pain, interstitial cystitis, temporomandibular joint disorder, post-traumatic stress disorder, and migraine headaches. Female patients who have IBS have also reported discomfort during sexual intercourse (dyspareunia). Our survey of 2,961 respondents showed 32% have some form of mood disorder, 27% have gastroesophageal reflux disease, and 27% have anxiety disorder.”
It’s important to seek medical care when you experience bowel issues, to ensure that nothing more serious is going on. Don’t let embarrassment stop you. If you are experiencing any of the following, call and make an appointment:
Diarrhea at night
Iron deficiency anemia
Persistent pain that isn’t relieved by passing gas or a bowel movement
Seeing The Doctor
When you seek medical care for your IBS symptoms, the following actions may occur:
Medical History: A physician reviews the patient’s medical history, considering bowel function pattern, the nature and onset of symptoms, the presence or absence of other symptoms, and warning signs that might indicate some other diagnosis.
Physical Examination: During a physical evaluation, the bowel may have involuntary jerky muscular contractions (spastic) and seem tender; although the patient’s physical health usually appears normal in other respects.
Investigative Testing: A physician might request tests to rule out other possible diseases. In performing a scope, physicians view the intestinal tract with an instrument that enters the body via the mouth (gastroscopy) or the anus (colonoscopy/sigmoidoscopy). The scope is made of a hollow, flexible tube with a tiny light and video camera.
The physician may also request routine blood and stool tests to rule out known organic diseases. Some symptoms of celiac disease overlap those of IBS, so a family history of this disease might be a reason to test for it.
After other conditions have been ruled out, your doctor is likely to use one of these sets of diagnostic criteria for IBS:
Rome criteria. These criteria include abdominal pain and discomfort lasting on average at least one day a week in the last three months, associated with at least two of these factors: Pain and discomfort are related to defecation, the frequency of defecation is altered, or stool consistency is altered.
Manning criteria. These criteria focus on pain relieved by passing stool and on having incomplete bowel movements, mucus in the stool and changes in stool consistency. The more symptoms you have, the greater the likelihood of IBS.
Type of IBS. For the purpose of treatment, IBS can be divided into three types, based on your symptoms: constipation-predominant, diarrhea-predominant or mixed.
Treatment of IBS focuses on relieving symptoms so that you can live as normally as possible. These suggestions below come from The Mayo Clinic:
Mild signs and symptoms can often be controlled by managing stress and by making changes in your diet and lifestyle. Try to:
Avoid foods that trigger your symptoms
Eat high-fiber foods
Drink plenty of fluids
Get enough sleep
Your doctor might suggest that you eliminate from your diet:
High-gas foods. If you experience bloating or gas, you might avoid items such as carbonated and alcoholic beverages, caffeine, raw fruit, and certain vegetables, such as cabbage, broccoli and cauliflower.
Gluten. Research shows that some people with IBS report improvement in diarrhea symptoms if they stop eating gluten (wheat, barley and rye) even if they don’t have celiac disease.
FODMAPs. Some people are sensitive to certain carbohydrates such as fructose, fructans, lactose and others, known as FODMAPs — fermentable oligo-, di-, and monosaccharides and polyols. FODMAPs are found in certain grains, vegetables, fruits and dairy products. Your IBS symptoms might ease if you follow a strict low-FODMAP diet and then reintroduce foods one at a time.
A dietitian can help you with these diet changes.
If your problems are moderate or severe, your doctor might suggest counseling — especially if you have depression or if stress tends to worsen your symptoms.
In addition, based on your symptoms your doctor might suggest medications such as:
Fiber supplements. Taking a supplement such as psyllium (Metamucil) with fluids may help control constipation.
Laxatives. If fiber doesn’t help symptoms, your doctor may prescribe magnesium hydroxide oral (Phillips’ Milk of Magnesia) or polyethylene glycol (Miralax).
Anti-diarrheal medications. Over-the-counter medications, such as loperamide (Imodium), can help control diarrhea. Your doctor might also prescribe a bile acid binder, such as cholestyramine (Prevalite), colestipol (Colestid) or colesevelam (Welchol). Bile acid binders can cause bloating.
Anticholinergic medications. Medications such as dicyclomine (Bentyl) can help relieve painful bowel spasms. They are sometimes prescribed for people who have bouts of diarrhea. These medications are generally safe but can cause constipation, dry mouth and blurred vision.
Tricyclic antidepressants. This type of medication can help relieve depression as well as inhibit the activity of neurons that control the intestines to help reduce pain. If you have diarrhea and abdominal pain without depression, your doctor may suggest a lower than normal dose of imipramine (Tofranil), desipramine (Norpramine) or nortriptyline (Pamelor). Side effects — which might be reduced if you take the medication at bedtime — can include drowsiness, blurred vision, dizziness and dry mouth.
SSRI antidepressants. Selective serotonin reuptake inhibitor (SSRI) antidepressants, such as fluoxetine (Prozac, Sarafem) or paroxetine (Paxil), may help if you’re depressed and have pain and constipation.
Pain medications. Pregabalin (Lyrica) or gabapentin (Neurontin) might ease severe pain or bloating.
Medications specifically for IBS
Medications approved for certain people with IBS include:
Alosetron (Lotronex). Alosetron is designed to relax the colon and slow the movement of waste through the lower bowel. Alosetron can be prescribed only by doctors enrolled in a special program, is intended for severe cases of diarrhea-predominant IBS in women who haven’t responded to other treatments, and isn’t approved for use by men. It has been linked to rare but important side effects, so it should only be considered when other treatments aren’t successful.
Eluxadoline (Viberzi). Eluxadoline can ease diarrhea by reducing muscle contractions and fluid secretion in the intestine, and increasing muscle tone in the rectum. Side effects can include nausea, abdominal pain and mild constipation. Eluxadoline has also been associated with pancreatitis, which can be serious and more common in certain individuals.
Rifaximin (Xifaxan). This antibiotic can decrease bacterial overgrowth and diarrhea.
Lubiprostone (Amitiza). Lubiprostone can increase fluid secretion in your small intestine to help with the passage of stool. It’s approved for women who have IBS with constipation, and is generally prescribed only for women with severe symptoms that haven’t responded to other treatments.
Linaclotide (Linzess). Linaclotide also can increase fluid secretion in your small intestine to help you pass stool. Linaclotide can cause diarrhea, but taking the medication 30 to 60 minutes before eating might help.
Potential Future Treatments
Researchers are investigating new treatments for IBS. Serum-derived bovine immunoglobulin/protein isolate (SBI), a nutritional therapy, has shown some promise as a treatment for IBS with diarrhea.
Studies also show that, in people who have IBS with diarrhea, a specially coated tablet that slowly releases peppermint oil in the small intestine (enteric-coated peppermint oil) eases bloating, urgency, abdominal pain and pain while passing stool. It isn’t clear how enteric-coated peppermint oil might affect IBS, so ask your doctor before using it.
Although Bowel related issues can be embarrassing, it’s important to acknowledge and treat your symptoms to give you the best health possible. Make time to reduce stress in your life, follow a proper diet and get a good nights sleep…these three things can make a huge difference in your gut health. If nothing changes, see your doctor. Your good health depends on it.