Chronic Pain can be so debilitating that you may sometimes wish for an end to it all. Although I will touch on assisted suicide in this post, it’s also never too early to have your plans in place for end of life care and preparations for what happens when you do pass away. It’s a difficult subject that no one wants to talk about but I’ve never been one to shy away from the hard topics before.
Wills and Financial Planning
Speak with your lawyer and make sure you have a current will. Discuss estate planning, trust funds, donations and any other legal matters so everything is up to date. Your Financial Planner can also help you set up your affairs so that it’s easy for your family to follow your plans. Make sure your financial planning is sound and in line with personal desires.
Make a Plan
To ensure your end-of-life care is handled the way you want, make a comprehensive plan. This allows you to outline everything about the care you wish to receive once you are no longer capable of making your own decisions (like pain management or DNR instructions). Involve your family and friends in your end-of-life plan so that anyone who might be responsible for your care knows exactly what your wishes are. Have them use it like a guide, and be sure to talk through anything they might not agree with or understand to make sure they know why you want things a certain way.
Keeping your loved ones in the mix serves multiple purposes: Not only does it help you better protect yourself, it helps them process and work through your ailing years and eventual passing. A plan you’ve discussed and prepared your family for will bring them ease and relieve a huge burden.
Talk to them about those feelings of loss. Make sure they have an understanding of what to do when that loss happens to help them cope; how to ask for help, how to get help with those feelings. Helping your loved ones can also help you come to terms with your own end-of-life process. You may have many years to live or your health may be such that you are facing the end of your life much sooner. Being prepared for death is perhaps the most difficult thing you will ever experience in your life. Here are a few things to consider:
Say the “6 Things” you need to say to your loved ones, friends and enemies. It is never too early to say these things.
“I forgive you.”
“I love you.”
“It’s OK to die.”
What are my beliefs about death? Do I need to make peace with myself or a Higher Power?
Do I need psychological, emotional, spiritual care, counseling or support?
Have I left a legacy? Identify life lessons, advice, hopes and dreams that you would like to pass on to family and friends. Write or record these. Identify a person who can pass these along to the people to those whom you wish to receive your legacy.
Have I written my personal history? You can write it down, or record on audio or video tape, etc. Who is to get my personal history?
Many people decide nowadays to make their funeral arrangements in advance, to spare their family the task in their time of grief. Most reputable Funeral homes have options to pre-pay for services including cremation, caskets, urns, plots, etc., so you can rest assured that everything is taken care of in advance. Contact the Funeral Home of your choice to discuss your wishes with them. Most of them offer a free planning book as well to help you organize all your paperwork in the event of your death – your wills, banking information, life insurance, important contacts, etc.
Assisted Suicide is a very controversial topic these days. I want to state clearly that I am FOR assisted suicide when every option has been played out and a terminally ill person has reached a point in their health journey where they have no further reason to go on. People who opt for AS are not looking for a quick solution – they have put a lot of time and thought into their decision and they know it’s the right choice for them.
We treat our animals more humanely than we do people, and when the time has come when a person is ready to die, I think we owe them the option to do so with dignity. I live in Canada, where Euthanasia became legal in 2016 for patients experiencing intolerable suffering. Strict laws govern access to legal assisted suicide in Canada and there have been at least 744 assisted deaths since the law was first passed.
These are hard things to talk about, but the fact remains that the more prepared you are in advance, the easier things will be in a crisis later. Just remember though that despite the nature of chronic pain, everything is worth fighting for… love, laughter and life itself. It is always my signature at the end of each post but today, I mean it even more…
If you read my last post, you know that I live with a number of health issues, and have for many years. What I didn’t talk about was a more recent issue that has come up involving a bump on the back of my left ankle and my Achilles tendon that is tearing away from the bone.
The bump is called a Haglund’s Deformity. I’ve had it for over a year now and it seems to have developed after I had my right hip replaced, perhaps in response to a changed gait in my walking. I didn’t notice it at first, not until it became painful. What my Physiatrist (my pain doctor) and I didn’t realize is that it was also affecting my Achilles Tendon and that tendon was slowly pulling away from the bone. It wasn’t until I could no longer walk without constant pain that we came to understand the full severity of what we were dealing with.
I was sent for x-rays and the results showed the truth. Since November 2018. I’ve been wearing an Air Cast to help protect my ankle and reduce the pain when I walk. We’ve tried Botox in the calf muscles to try to tighten the tendon so it will reattach to the bone, but if this doesn’t work, it’s going to mean a complicated ankle repair in surgery.
So, why I am I sharing this with you? Because this isn’t the only surgery I’m facing in the next little while and I want to talk about resilience.
Resilience is a funny word. The official definition is this:
1. the capacity to recover quickly from difficulties; toughness. “the often remarkable resilience of so many British institutions”
Now, I wouldn’t say that definition number 2 is all that appropriate as I certainly don’t feel all that “elastic” or “springy”. I do agree with the first one though. I think I have a remarkable ability to recover from difficulties. With everything I’ve been given in life to handle, and each new challenge I’ve been given to face, I’ve been able to rise to the occasion and deal with it as it’s happened.
As I said, I am facing another surgery this year and it’s one I never thought I’d hear myself say – Brain Surgery. Because of my Trigeminal Neuralgia, we have come to the point where I’ve exhausted every medication out there and I’ve been left with no other options for treatment. I am meeting with the Surgeon on April 30th and the surgery we will be discussing is called Microvascular Decompression. It has an 80% success rate, which is the highest of all the available surgeries, and is the least likely to cause lasting facial numbness afterward.
In Microvascular Decompression surgery, the Neurosurgeon creates an opening in the skull behind the ear on the affected side and using delicate tools, places a sponge between the nerve and the blood vessel causing compression, which in turn reduces the irritation caused by the nerve. It also prevents almost any facial numbness from happening which is a common side effect in most other surgical procedures, such as Sensory Rhizotomy, Gamma Knife Radiosurgery or Peripheral Neurectomy. A small titanium plate is used to replace the bone removed and is put into place with tiny screws.
A sponge is inserted between the nerve and the blood vessel, usually the superior cerebellar artery, causing compression.
A sponge is inserted between the nerve and the blood vessel, usually the superior cerebellar artery, causing compression.
After the surgery, you spend a night in the ICU and then 1-2 days in hospital before being released to recover.
It all sounds pretty scary, but it’s my best hope for relief from this insidious pain. I’m now averaging a flare up every week and they generally last for 12 hours at a time. It’s sheer agony when they happen – there’s a reason this condition is called the suicide disease.
So, how do you bounce back from something like this? Where does the courage come from? Part of it for me is my faith in God. Part of it is my natural positive outlook on life. My Dear Readers know that my motto is “there is always hope”. I end each post with those words, they are tattooed on my left arm, they are my favourite words from the movie The Lord of The Rings, when Aragorn is talking to the young boy just before the Battle at Helms Deep. They remind me that no matter what we are facing in life, things could be worse. I know that might sound silly, but truly, they could be. I could be facing a terminal illness, not just an issue that causes tremendous pain. There could be NO solution for me at all.
The thing is, I believe we have a choice in how we react to news, good and bad. Being joyful is easy in good times, but I choose to be joyful in the bad times too. I choose to stay positive in the dark days. I choose to believe that things can get better. My attitude is one of gratitude despite the circumstances. And I encourage others to try to do the same thing. You have a choice. Be resilient. Fight with all you have inside you. Choose to find the joy in your circumstances, as small as it might be. Remember…
The following statement was made by a fellow poster and I want to address the subject. Here is what she wrote:
“I am living in constant pain, can’t sleep and often feel very low. Thoughts of not existing often creep into my head.”
Now, there is often a difference between wanting to commit suicide and simply not wanting to exist any longer. Wanting to commit suicide is a deliberate act that you want to take because you are in so much pain, you simply can’t bear to be a part of this world any longer. Thoughts of no longer existing are different. It’s not so much that you want to die, it’s just that if you didn’t wake up in the morning, you’d be okay with that.
Fibromyalgia and Chronic or Intractable Pain is a Life Sentence for the person who has to live with it. Imagine for a moment that everything in your life suddenly changes. You can’t work, you can’t go out to parties or outings with your friends. You have to give up your hobbies and all the things you enjoy. You can’t spend time with your family or friends or loved ones because you are in so much pain and are so exhausted every day, all you want to do is be in bed sleeping. Depression seeps in…you have nothing left to live for. Everything you’ve loved in life has been taken away from you. Why should you bother being alive…what’s the point? Every day is exactly the same as the next…pain and exhaustion, exhaustion and pain. There’s nothing positive to look forward to, so why bother? It would be a relief to just not wake up in the morning.
To just not wake up in the morning.
These are the type of dark thoughts that can creep into the minds of people who live with Fibromyalgia and Chronic Pain. It’s important to find purpose in a life that has radically changed so you don’t find yourself sliding into this dark hole. Here are some suggestions that may help you find that purpose in your life.
Finding Your Faith
If you are a person of Faith, you may be wondering where God is in all of this. You may be feeling abandoned by God or feeling like you’re having to go it alone. Please know that God hasn’t left you at all, but perhaps you’ve left God. Now more than ever is the time to reach out to Him and to immerse yourself in the Bible. Read about Job again and all that he went through, and remind yourself how God didn’t abandon him and how He won’t leave you either. Now might be the time to start listening to some Christian music that helps you reconnect with your faith. If you engage in a different religion, you can reconnect to the ceremonies that enrich you from those practices.
If you are not Religious, but are Spiritual, there may be rituals of comfort that you’ve moved away from and it may be time to implement them again. Meditation, chanting, incense, sage, singing bowls, whatever you find comfort in – bring them back into your life.
Moving In Comfort
Often when we are in Chronic Pain, we forget that exercise is actually beneficial to us, both physically and mentally. Gentle exercise offers benefits to our body such as delaying muscle atrophy, increasing strength, and creating an environment to help us heal. Although exercise may hurt, it’s not causing us further harm and will inevitably help strengthen the core muscles, which benefit the entire body. Walking, swimming, Aquafit and bicycling are all good starts, even for just a few minutes a day. This post can help you with more detailed information. The bonus is the better you feel physically, the better you feel mentally.
It’s often been said that the more we give to others, the more we get in return. Volunteering is such an example. Mention volunteering to people who live with Chronic Pain, and the first thing they say is “oh no, I’m much to sick to volunteer”. Stop for a moment though, and think about it. You have the lived experience of a Patient and could be the perfect Patient Advocate for Healthcare Partners in your area. If there isn’t a dedicated organization where you live already doing this, call your local hospitals and ask if they ever need Patient Partners for their Health Care Initiatives. The same goes for the big medical organizations in the area…The Cancer Society, The MS Society, The Diabetes Association…and the list goes on. If you live with a health condition beyond Fibromyalgia, call your Organization and see if they need volunteers. You can specify the type of work you can do, and the hours you are available. Giving back fills a huge need in the community and in your own life.
Spend Time With Loved Ones Again
As awful as you may feel, cutting yourself off from family and friends actually makes you feel worse. Try to find times where you can get together with loved ones, even if it’s for shorter amounts of time. Have a coffee time in the evening instead of a longer drawn out dinner. Join a friend for lunch. Chat on the phone or via Skype and stay in your Pajamas! People want to spend time with you, they don’t care what you’re wearing. The ones who truly love you will understand the circumstances – the ones who don’t really don’t matter much, do they?
Finding purpose in life can help lift you from the darkness you may be encountering because of your Chronic pain. It is possible for you to find joy again, even in the simple things. I’d like to leave you with a list of 20 of my top items that bring joy – taken from a previous post I’ve written called That Which Brings Me Joy.
If you’ve been to my blog before, you know that I live with Fibromyalgia, Chronic Pain, Chronic Fatigue Syndrome and Invisible Illness. If this is your first visit, you now know something about me. I want it made very clear that YES…Fibromyalgia IS REAL.
Here are just some of the MANY symptoms that people with Fibro have reported experiencing:
Walk a mile in my very painful shoes and you will know exactly how painful it is to live with Fibro. Every one of my muscles feels like it’s being dragged in concrete and every joint feels like it’s been twisted, then put into a mechanical vise and clamped as tightly as possible. I get shooting pains in parts of my body that I didn’t even know existed, for no reason at all. My arms burn and my hands and feet tingle or go numb.
The brain fog is awful…forgetting what you’re saying in the middle of a conversation is so embarrassing. I can’t remember what I ate for breakfast. I can’t remember if I ATE breakfast. I take medications that cause horrible side effects like weight gain and shaking hands and brain zaps…a sensation like an electrical shock that runs across your brain and where you can feel AND hear a literal buzz. I am constantly exhausted by the lack of sleep that comes with Fibro. It’s never refreshing and it’s never enough.
Yet, with all of this that I and my fellow Fibromites go through, there are still doctors who say “it’s all in your head” and “it doesn’t exist”. Well, tell me then…what DO I have wrong? All my tests come back negative for everything you tested me for…but I have all
18 of the 18 tender points that indicate Fibromyalgia is what I have.
Here are things I’ve had to say to friends and to DOCTORS who have questioned me about Fibro and Chronic Pain at various times over the last 10 years:
1. This is not “just in my head”. My pain is real.
2. I wish Fibro came with bruises, that way, you could see how much pain I’m feeling just so you could believe me.
3. It never goes away. My pain is always there, even when I’m acting “normal”. Don’t let my smile fool you, I am always in pain. Always.
4. There is no standard day or week or month with Fibromyalgia, It changes from hour to hour sometimes. Some days are better than others. Some days I think I want to die (this one always gets me in trouble).
5. Staying home instead of working or doing something fun isn’t all it’s cracked up to be.
6. You think I’m faking being sick, but really I’m faking being well.
7. The Brain Fog is terrifying. You try forgetting what you’re saying in the middle of a sentence and see how it makes you feel – you feel stupid and old and easy to dismiss. I lose things easily and am easily distracted. It’s so frustrating.
8. Day to day activities are exhausting. Heck, getting out of bed is exhausting.
9. Even if there were drugs that worked well, I am not a drug seeker and my history will show that. I have ONE Family Doctor and use ONE Pharmacy! I just want relief from the pain.
10. What part of “chronic condition” are you having a hard time understanding? I am not going to get better. I am going to live with this for the rest of my life. I hope to get better but it’s never going to go away. Don’t give me false hope.
11. I’m willing to try just about anything, but just because something worked for some Aunt’s friend’s cousin’s sister doesn’t mean it’s going to work for me. We’re all different and treatment isn’t a one size fits all option. But, whatever…I’m willing to listen.
12. Sometimes, I have to cancel my plans at the last minute. Sometimes, I cancel my plans with the same friend 2 or 3 times in a row. It’s not a reflection on the friend. It’s my body.
13. I wish more doctors understood Fibromyalgia and Chronic Pain and took us more seriously. Do you see me as a drug seeker too? What about when my x-rays show a body filled with arthritis? How do you deny my pain then? I just want you to help me find answers and relief.
14. Some days, even my hair hurts
15. There are days when the most I can accomplish is moving from the bed to the couch, and that’s okay. At least I did something.
16. On the days I feel good, I push myself too hard to get things done, even though I know I’m going to pay for it later. I hate being thought of as lazy. When my husband comes home, I can honestly say to him, “honey, today I cleaned up, did the dishes, vacuumed the house, did the laundry, baked cookies and scrubbed the bathroom”. And then I know I’ll be bed-bound for the rest of the week.
17. What you see on the outside doesn’t necessarily reflect how I feel on the inside.
18. My chronic fatigue is at times overwhelming and I can’t push past it. It’s exhausting to be this exhausted.
19. I wish a simple nap would help to relieve my pain, but it will not disappear if I lay down and have a rest.
20. I’m a real person with real pain. I didn’t ask for this but I’m being forced to live with it. I didn’t do anything to get this, but sometimes I feel like I’m being punished.
Research has now shown that Fibromyalgia is NOT an inflammatory condition like so many doctors first thought. It is technically NOT an autoimmune disease. What Fibro IS, is a NERVE disease where the brain misreads the pain signals going to the body through the spinal cord. This causes widespread pain throughout the body that can be felt in many different ways, and these include the various symptoms shown in the chart above.
Oh, it can be so frustrating having an Invisible Illness like Fibro. I truly do wish there were outward signs of this illness so that people could see that you’re ill. Something like bruises or a rash, or big F’s showing up on your body would be perfect (“oh look…she has F’s all over her…poor thing, she has Fibromyalgia…go get the door for her”). I truly wouldn’t mind that if it would help a doctor believe in what I’m going through, trust me.
I belong to a Facebook group called the Fibro Blogger Directory and we’ve been challenged to send in and answer questions relating to Fibromyalgia in the month of November. One of the members asked this question:
Can you please help explain how I can get started with exercising – I want to but can’t get up off the lounge most days and can’t even do all my housework.
From Fleur in Pasadena
Let’s start by talking about something called “Fear of Pain”
If you’ve ever attended a Pain Management course, one of the first things they talk about is the mechanism of Pain – and the fear that comes with having pain. We’re afraid that pain is our body telling us that something is wrong and more pain means more is wrong. That’s not always the case though and the trick is determining what is “bad” pain and what is “good” pain. Exercise is generally considered to be “good” pain because it’s not causing further harm to your body. Your mind needs to be convinced that what you are feeling isn’t more harm, but simply a response to the muscles and tendons being used in a way that you’re not used to. No actual damage is being done, so while you may need to start slow, exercise is encouraged when you have Fibromyalgia. In fact, the worse thing you can do is to remain sedentary as that causes your muscles to atrophy.
There are simple moves you can do to get started on an exercise program at home that will be easy on your joints yet still give you a workout. As always, make sure you get your Doctor’s approval first.
Start with simple Stretches:
Move on to Squats, Wall Push Ups and Bicep Curls (with or without light weights)
Finish off with walking, swimming, Aquafit, or Bicycling. Even walking one block a day is a good start – add an extra block as you grown stronger, or an extra lap in the pool. The goal is to move just a little bit each day (i.e.: do 1 squat a day for a week then try 2 the next week).
Nordic Pole walking is extremely popular and works your upper and lower body while giving you stability while you walk:
The added benefit is the more you do, the more you’re capable of at home. Doing the dishes, sweeping the floor, folding laundry – they all count as movement and exercise as well. I’m not saying you need to run a marathon or do everything at once, but start slow, and realize that yes, you might feel a bit more pain in the beginning, but it’s simply your body getting used to something it hasn’t experienced for awhile. Give it time to adjust and you’ll see a difference before you know it. It takes 21 days to make a habit so give yourself 3 weeks before you “give up”. I’m willing to bet that if you’re honest with yourself and you don’t cheat, you’ll notice a positive change at the end.
It’s a frustrating thing when the medications you’ve come to rely on suddenly decide to stop working. Pain meds no longer manage your pain, and brain meds no longer manage your brain. It’s no fun to find yourself in this situation, but for People with Chronic Pain (PwCP), it happens all the time.
There are only 3 medications that are specifically prescribed for Fibromyalgia: Lyrica, Savella and Cymbalta. Lyrica, in particular, is known for weight gain as a side effect and when I first started taking it, years back, I gained 30lbs in 2 months time. I’m a short girl (5’2″) but I have a large frame, so I didn’t want to gain anything…I’m already stocky. I told my doctor that I couldn’t handle being so heavy (I think I went up to 160lbs), so she took me off the Lyrica and put me on the Cymbalta instead. I lost some of the weight and for a long time, seemed stable at 140lbs which I was okay with. I was still working out at the time and had a muscular body thanks to my trainer and her torture sessions every week (hi Terrianne…love you!).
Fast forward 10 years and I’m still on the Cymbalta, but I don’t think it’s as effective as it used to be. The problem is, science hasn’t kept up and there is nothing newer to try. Even though I continue to take my daily doses on schedule, I find that I develop brain zaps in between and my Fibro pain seems to have increased over the years as well. Part of it might just be from ageing, and part might be from my Osteoarthritis getting worse as well. I’ve also noticed that since I had my right hip replaced and I developed this Haglund’s Deformity in my left foot, my legs are constantly achier than they’ve ever been. I’ve always put that down to walking with a different gait, but I wonder if that’s my Fibro flaring up as well.
The other medication that has been difficult to regulate is what I take for my Bipolar Disorder. I was on Seroquel for a couple of years with good success, until I started having auditory hallucinations. I would be hearing music where other people heard nothing. It took a long time before we determined it was my medication causing the problem, including a visit to a Psychiatrist to determine that I didn’t have Schizophrenia. Once we realized the Seroquel was the problem, we switched to a new drug called Abilify. That worked great for the first several months, providing me with energy that I hadn’t had before and a whole fresh outlook on life.
Unfortunately, it also brought some side effects like shaking hands and trembling tongue and brain zaps – those internal lightening-fast buzzes in the head. We cut the dosage in half and then in half again, but to lose the side effects meant to lose the benefits as well. I see my doctor again soon and I think we’re going to have to try something new. The problem is, everything new is in the same general category as what I’m currently taking, so not sure what type of success we’ll have.
Speaking of seeing my doctor, I have to say that my new doctor is lovely. Dr Penny Wilson is from Australia and is in Canada for a year at least (with the promise that if she decides to go back to Australia at the end of the year, my care will be taken over by another doctor in the practice so I won’t be left stranded). She prefers to be called Penny rather than Dr and she’s simply delightful to talk to. She’s matter of fact and down to earth, and genuinely wants to see me as healthy as possible, so on my last visit there, to get the results of blood work and to get a prescription refill on my opioid medication, she decided she wanted me to book another appointment asap for what she called a Complex Care Review. As she said, “if anyone is complex, it’s you”. How true!
Basically, this appointment will be a chance to sit down for 30 minutes to go through EVERYTHING that I’m experiencing healthwise so we can triage what’s important, what can wait, what Dr Winston, my Pain Doctor, is dealing with, and what needs to be sent off to other doctors. For instance, I’ve had ongoing pelvic pain, likely due to a build-up of scar tissue/adhesions from several previous abdominal surgeries. I do know that when I had each of my ovaries removed, there was scar tissue attaching my bladder to my bowel. When I move certain ways, it feels like my insides are ripping apart, like velcro being torn open and it’s crazy painful. This is something I haven’t dealt with yet, because there have been too many other things wrong with my body. Penny will likely refer me to either the Gynocologist or to a General Surgeon to have a laparoscopic procedure done to see if they can remove some of the adhesions so that pain can be eliminated. Yes, a surgical procedure will cause more adhesions, but if they can get rid of 90% and have only 10% more grow, then those are good odds for me.
It feels weird to be looking forward to a Dr appointment, but I think this will be one of the most beneficial ones I’ve had in ages. I’m also taking in all my medications, so we can do a review and see if there’s anything I can stop or any dosage changes I need to incorporate. Yes, Penny is very thorough and for that, I’m very grateful. I have a feeling that when the appointment on the 27th is over, I’ll no longer have medication frustrations. What an answer to prayer!!
I’ve been wrestling with my emotions lately and wasn’t sure if I was even going to post about them. I’ve gone from feeling quite happy about how things are going in my life to outright despair over situations I have no control over. Because I am a Christ Follower, I do pray, but there are so many times I wish I could do more for the people in my life that are suffering. It’s especially hard when my own life is going so well.
Physically, I am doing better than I have been in a really long time. My Fibromyalgia pain has been well controlled lately, without any major flare-ups, my right knee has been doing well since the Synvisc injection finally kicked in, and although the Botox didn’t work for my Trigeminal Neuralgia (I had several flare-ups after it was done), I haven’t had a major problem in the last two months. The only real problem I’m having right now is with my left foot, and what I thought was a problem with my Achilles Tendon. Overall though, my energy has been good and since my dose of Abilify was cut in half, the shaking hands and the tongue tremors and brain zaps seem to have eased up as well. My Bipolar Disorder has been well controlled and other than the fact my insomnia continues to cause major problems and I still average 2-3 hours of sleep at night, overall, I can’t really complain. I feel about as good physically as I have in the last few years and this is a real blessing.
What does have me troubled is that I have several friends who are going through really difficult times right now. One has a daughter in her 20’s with cancer, one has a young daughter with digestive issues and one has a husband with cancer. It’s hard to be so close to people emotionally and yet not able to do anything for them to help them in these battles. So, I’ve done the only thing I know how to do. I’ve sent them each a cow.
A cow named Courage.
Let me explain. I love cows…I always have. I collect them…stuff ones and china ones and figurines and you name it. I have a small collection now, but once upon a time, I had over 400 cow-related items. Now I just keep it to the figurines and stuffies, and Christmas tree ornaments. Courage the Cow was born when my very dear friend Kevin was diagnosed with Lymphoma several years ago. I sent him a stuffed cow from my personal collection to help him through his battle and now Kevin is cancer free. When I heard about my friends and the battles they were going through, I thought that perhaps a Courage Cow of their own might be a good idea. So, that’s what I’ve done. I have taken stuffed cows from my personal collection and sent them on, with a note indicating that Courage is especially talented at eating cancer cells.
Courage also brings great comfort to young children with tummy troubles – that is another speciality of his. I’ve boxed up each of these cows and sent them off and so far, two people have received theirs. The young lady with cancer has had many cuddles with her Courage Cow and has said she already feels better. She will be undergoing a third Chemotherapy treatment soon. My small friend with the digestive problems loves her Courage Cow and wouldn’t put him down. She even made room on her bed for him and apparently that was QUITE the big deal as she’s very particular about who sleeps with her. She will be going to Boston Children’s Hospital in October for a complete digestive workup to see why her bowels don’t work properly and why eating is such a problem for her. She’s 5 years old and has had problems all her young life, so hopefully, Courage will be a comfort for her. As for the final recipient, I’m waiting to hear if Courage has been delivered yet or not…I expect any day now. He discovered he had Stage 4 prostate cancer out of the blue after having no previous symptoms at all.
I’m very thankful that despite my chronic illnesses, I’m healthy in the sense that I need no ongoing treatments such as chemo, or IViG, etc. Sure, I live with ongoing daily pain and I take a bunch of medications to manage my conditions, but overall, I’m healthy for a “sick” person. I just hope and pray it stays like that. I know that I have some surgeries in my future to expect, as my left hip needs to be replaced, and a possible surgery on my left foot where I thought my Achilles Tendon was injured. Instead, it turns out I have something else, called a Haglund’s Deformity. I’ll be seeing an Orthopedic Surgeon in the near future to discuss that further. Still, I can’t complain healthwise (well, I could, but no one would listen!). I know too many people who have things far worse than me. And for them, I listen, encourage and send out cows. And I try to remind them that even in the worst of times…
There is always hope
ps: As a reminder, if anyone is interested in taking the course 31 Days of Expressive Writing for Chronic Pain and Illness that I recently completed, I have become an Affiliate and will earn a small commission if you purchase the course through this link.
The price for this course is only $39.00. There are other courses available through Esther’s site, including What Really Helps People With Chronic Pain for only $99.00, and Pacing For Chronic Pain, priced at just $69.00. To sign up for these courses, please make sure you use my Referral Number 19f3aa. Thanks very much…if you do sign up, I hope you find the course as helpful as I did.
Mental Health Advocates Share How To Prevent Suicide in 60 Seconds
What would you say if you had 60 seconds to talk a stranger out of taking his or her life?
I was flipping through my new SoulPancake book when this question jumped off the page.
What would you say if you had 60 seconds to talk a stranger out of taking his or her life?
I froze and my mind went blank. This can happen in my lifetime and I didn’t know what I would say.
So for this National Suicide Awareness Week, I’ve asked some mental health advocates to answer this question.
I hope you will never need the suggested responses and tips below. But if it happens, may they help you save a life.
Here’s What They Shared
“The pain you are feeling must feel overwhelming but If you live another day I will show you that life can be better than what you are living.” — Saaim Ali
“I can’t promise you it gets better. I won’t tell you sunny platitudes or promise you rainbows.
What I will do is ask you stay, because you’ll never know what’s ahead if you don’t.
I will do my best to help you look for the rainbows and walk in the rain with you until you can, because I’ve been there, too.” — Selena Marie Wilson
“What you’re considering doing is a permanent solution to a temporary problem. Whatever it is — I promise to help you to resolve it — but we can’t do that if you’re dead.” — Kathy Reagan Young
“ I have been where you are. I know it feels like there is no other way out, but there is hope. People care, I care. Take my hand, I will walk with you through this. Your loved one will be lost without you. One step at a time, one minute at a time. We can do this together. You are not alone.” — Crystal Fretz
“I’ve been there, and I just want you to know that even though it doesn’t seem like it right now, at this very moment, there is hope. You are loved. If you can’t think of a single person who loves you, know that God loves you. I love you because you are a beautiful creation of God. I’ll go with you to find help. I’ll stay with you until you feel safe. You are not alone.” (coupled with questions about the person and things they like/dislike, points we may have in common, and non-threatening body language — adopt the same gestures they use, sit and or stand in the same posture — mirror them so that they can feel the empathy and love). — Anita Ojeda
“There’s a whole bright, beautiful world that needs your spirit in it. It feels dark, lonely, and hopeless right now, but it’s not. There’s help for you, there are people who care about you, and you are so, so much more valuable than you realize. Let’s talk about what resources are available and which one you think will work for you, and I’ll help you make the call if you want. You’re not alone. I’m here to help you. It will get better.” — Olivia Sod
“Trust me I understand how you feel, I’ve been there myself. But hang in there. Sometimes it doesn’t make any sense, but just hang on. Hang on. Hang onto life.” — Sheryl
“A lot of times, people who commit suicide believe the people in their lives would be better off without them, so I’d tell them they wouldn’t and I know. My brother committed suicide and it was the worst thing I have ever experienced. I’d tell them there would be way more people than they realized that would be impacted by this choice and there were more people that cared about them and wanted to help than they realized.” — Rosanne
“As worthless and hopeless and terrible and dark as you feel, this isn’t the end of your story. You can have light and hope and worth and joy. Don’t make a permanent choice that will affect your family and friends long after you’re gone. They need you, whether you think they do or not. You need them, too. Cling to the life God’s given you, even if you have to hold on by your fingernails and it feels too hard. This isn’t the end of your story.” — Anna Huckabee
“Keep them talking basically. When it came down to it and my friend threatened to jump off a multi-storey car park, I told him that if needed I was going to rugby tackle him and sit on him until the police arrived and could restrain him properly (they were already on the way anyway). Probably not the most official way to deal with it but while doing it, it kept him focused on me and talking to me rather than the other things that were going on. My friend has since been diagnosed with a version of Bipolar rather than depression. Unfortunately, it took a number of years to get past the diagnosis of depression or stress.” — Hannah
“What can I do to help you? (And I would start to tell them about my mother and ex-boyfriend and how they took their own life and that it’s okay to ask for help.) Everyone needs some kind of help throughout life. Just let me try to help you.” — Chasa Fulkerson
“The pain you feel right now? If you allow it to end your life, the same pain will attack your family and closest friends because they will miss you. After you are gone, the pain will be allowed to grow bigger and bigger! Let’s fight this together now and end the pain, but keep your life. You DON’T want to suffer through all this darkness for nothing, do you? Because on the other side of this darkness, this grief, this pain is something worth living for joy and hope. Let’s find some of that for you! I have a list of great resources!” — Chris Moss
“Listen, I’ve been there too. Right where you are. 10 years ago. So much can change in the next year for you. Don’t convince yourself that there’s no hope. That’s a lie from the pit. You have a gift and worth and value, and the devil is trying to keep you from giving it to the world. God cares about you and loves you, and has plans for you for a purpose and good. It doesn’t matter what you’ve been through or done, there is hope for a happy and joyful life! Come with me. Please let me tell you my story.” — Abby Karbon
“This may be hard to hear right now but you are worth so much, just by being the only you in the world. You will be making a decision that you can not take back while going through emotions that will very well pass, even if it takes a little work. You are not alone, even if you feel like it. There are millions of people who feel just like you. Talk to me. I’m here to listen. I’ll never shut you down. You can trust me. I know what it’s like to feel like the world would be better off without you. Don’t listen to those negative thoughts. You are worthy and you will get through this.” — Cortney Kaczmarek
“You are needed. You are necessary. You are loved.” — Barbara Moore
“That life will be good again soon and that it’s an illness causing all the pain. They can get better and they can enjoy life once more they just need some help.” — Hazel Jackson
“Hey there, I know you don’t know me but I’m here and I care. Please just come, talk to me, let’s get a coffee and restart. You won’t be able to take this back. I get it but I also just want to know your story, I don’t want this to be an end to our conversation. All the things you are feeling must be overwhelming so let’s just calm down and breathe. We can talk when you’re ready.” — Emerson
“Being on the other end of it, I was told ‘it’s not worth it. This will pass and I will stay by your side and be there always.’ And that person to this day is still always by my side making sure I’m okay. And this was a few years ago. — Hailey Giambelluca
“You are loved. You are taking an easy way out, but what about the ones that love you? What about the ones that fight for/with you? We would be slowly dying inside if you were not here!” — Angel
“I can’t tell you what to do but I see you and I care. You’ll leave a hole in the universe that no one else can fill. This world is more meaningful with you in it. Please sit with me and tell me where it hurts. I’m listening.” — Emma Frances
“There is help out there. This solution you are considering is permanent. There is no coming back. You may feel you’ve tried everything, but there are specialists that can ease your suffering. There are many options available to you, and I will help you each step of the way. The symptom of suicidal ideation leads you to believe there’s no other hope. I can attest as someone who’s been in your shoes there is. And I’m glad I didn’t make that permanent choice. So please come with me and we can find help right now.” — Ben Barrett
“Give me your hand. Come closer. *if okay I’d give them a hug* I truly do understand this feels like the only way — I’ve had the same thoughts and experienced it with a loved one. I’m not going to tell you the usual things …the things you know. Just, remember that there is hope. I’ll come with you. I’ll help however I can, even if it’s just to listen…I will not judge you for your experience is yours and must be heard. Give me your hand.” — Eleanor Catalina Stevens
“Up close it’s hard to see a way out or the greater plan, but everything always works out in the end. So many people find times in their lives hard, but keep going and when you look back, you will see that it was all part of a greater plan.” — Laura P
“Let’s get you help! Who knows, you can overcome your depression and help others who are struggling, one thing is certain we need people who understand us, come with me, we’ll get you help, we’ll keep trying until you find a therapist you are satisfied with.” (this is just a note that I will help him/her get the help they need even though I don’t know them and they don’t know me). — Jazz Williams
“Things do get better. There are brighter days ahead but you have to stay here to see them. The world needs what you have.” — Wrae Sanders
“It’s okay to not be okay. And it gets better. Just stay. Use your voice to breathe life into a conversation that must be had. You are worth more than making a permanent decision based on a temporary emotion or thought. You are loved, and you can rise up once again.” — Maria Thomas
“You matter. You have people who care for you and will miss you. Your death will not relieve anyone else of a burden or make someone else’s life easier. Hold my hand. I am here for you and the journey ahead. It will get better.” — Teresa Colón
“Choosing to live, even though you are in deep pain, is courageous. That choice will help you take a step out of the darkness and into the light. That choice will prove to the world that you are stronger than your pain. That choice will prove to your pain that you are ready to fight back. That choice will begin your path to the help and support you need. I am here, talking to you, which proves to you that I care. I want to help you. And I will lead you to another person who will help you. And that person will lead you to another person who will help you. And another. And another. That path of people will be there for you as long as you need them. That path of people who care about you will lead you to safety, kindness, strength, and love. Take my hand right now, and let me help you start that path toward love.” — Kate Johnston
“Life is full of challenges, but that’s what teaches us to appreciate the good stuff. Today might be a challenge, but we’ll figure out a way to make tomorrow better. You matter in this world, and you are loved.” — Christalle Bodiford
“Think of those who love you and how it will destroy them to see you go my friend come with me to a better life.” — Robin Tomlin
“I would say that this is a very permanent decision for a temporary problem and ask them to talk to me, no matter how long it takes until they realize that someone cares. I would also tell them that there is always hope, that things can get better and that I will support them in getting the help they need to find their happy again.” — Pamela Jessen
“I know you think this is the only way to make the pain end. I don’t think you want to die. I think you’re just tired of living I’ve been there. I UNDERSTAND. I think you want to end the pain and suffering. I understand. But, don’t make a lifetime decision on today’s emotions. Emotions are fleeting. You might feel worthless. I bet you think you’re a burden or nobody will notice you’re gone. I would. I noticed one of my best friends every day is gone. I will be here for you. Keep talking to me. I will talk to you as long as you need to talk. I will be here for as long if you need me to be. We will get you through this together. The world needs your story to continue. You are destined for greatness.” — Jamie
“I would answer that ‘Hi this is Roger’ and if they said ‘I want to kill myself’ I would ask why and let them answer — then depending on what they said and how they said it — I would either ask them a few more questions or engage in a conversation letting them know that I was there and would listen and that I wanted to help — then let God be the Guiding Force while letting them know that I cared and they were precious and worthwhile.” — Roger Potter
How about you? What would you say if you had 60 seconds to talk a stranger out of taking his or her life? Let us know in the comments below.
What a powerful post, Mary!!! Thank you for allowing me to share it on my blog. As I always say:
There Is Always Hope.
There is an Opioid Crisis in North America and it’s affecting two factions of people – the ones who take and use opioids illegally and the ones who use and take opioids legally as prescribed by their doctors. I want to focus on the second group because we’re not being given our due in the news. First though, let’s look at some numbers.
*Every day, more than 115 people in the United States die after overdosing on opioids.1 The misuse of an addiction to opioids—including prescription pain relievers, heroin, and synthetic opioids such as fentanyl—is a serious national crisis that affects public health as well as social and economic welfare. The Centers for Disease Control and Prevention estimates that the total “economic burden” of prescription opioid misuse alone in the United States is $78.5 billion a year, including the costs of healthcare, lost productivity, addiction treatment, and criminal justice involvement.2
**Canada isn’t far behind. “This is a major public health crisis in Canada,” says Dr. Theresa Tam, Canada’s chief public health officer. “Tragically, in 2016, there were more than 2,800 apparent opioid-related deaths in Canada, which is greater than the number of Canadians who died at the height of the HIV epidemic in 1995.” New data from the Public Health Agency of Canada (PHAC) shows that from January to March 2017, there were at least 602 apparent opioid-related deaths across the country; it is expected that this count will rise as additional data becomes available.
Pressure is being put on physicians in both countries to stop prescribing opioid medications or to cut down on the number of prescriptions they write, and many are complying. So where does that leave us, the People with Chronic Pain (PwCP) who depend on opioid medication to manage their pain in order to have any semblance of quality of life?
Physicians and Pain Doctors are now more likely to offer Pain Management Programs and techniques in place of opioids. These programs use a combination of non-opioid medications such as over-the-counter or prescription ibuprofen (Motrin), acetaminophen (Tylenol), aspirin (Bayer) and steroids, plus various therapies, including:
Physical therapy – A physical therapist or physician who specializes in physical medicine and rehabilitation may be able to create an exercise program that helps you improve your ability to function and decreases your pain. Whirlpools, ultrasound and deep-muscle massages may also help.
Acupuncture – You may find relief from acupuncture, in which very thin needles are inserted at different places in your skin to interrupt pain signals.
Massage Therapy – can help to relax the muscles that may be causing you pain
Injections or nerve blocks – If you are having a muscle spasm or nerve pain, injections with local anaesthetics or other medications can help short-circuit your pain.
Biofeedback – where you learn to control involuntary functions such as your heart rate.
Surgery – When other treatments aren’t effective, surgery can be performed to correct abnormalities in your body that may be responsible for your pain.
Cognitive Behaviour Therapy (CBT) – can change the thoughts, emotions, and behaviours related to pain, improve coping strategies, and put the discomfort in a better context
Are these programs helpful? Do they work? Do they relieve pain? Well, from my own personal experience, the answer is no, they don’t take your pain away. They do give you the tools to manage your pain more effectively as long as you employ the tools on a daily basis, but when your entire body is wracked with a deep aching, burning sensation that NEVER GOES AWAY, it’s almost impossible to manage that. When my legs feel like bricks and my arms are burning like fire and I can’t move my shoulder to brush my hair and my knee is collapsing when I walk and my spine feels like it’s going to collapse any second from now from the intensity of the stabbing I feel…it’s hard to be motivated that today is going to be a good day.
Now, I have to be honest and admit that I am still taking opioid medication. I have been, for the last 10 years. I have weaned down my dosage, but I still take it. Right now, I take a Slow Release dosage of OxyNeo (Oxycodone) in a dosage of 30mg, 3 times a day. Each dose is to last me 8 hours. Does it work? Somewhat…it keeps my pain at a 4-5 on the pain scale which I can manage with other techniques. If I didn’t have the medication, I would be at a steady 8 on the scale, all the time. Now, what would happen if my Doctor decided to stop my drugs? I would be hard pressed to manage without them, especially after so many years of taking them. Am I an addict? No, I’m not and here’s why. When you have legitimate pain, it’s impossible to become addicted to a pain medication. It’s when you take a medication that you don’t need that you become addicted to it.
I want to share a conversation I had in a chat with a couple of friends who’ve allowed me to share their thoughts and first names. Read what happened to Lindsay and our replies:
What Lindsay said:
I just had a run in with a pharmacist yesterday. I suffer from interstitial cystitis, endometriosis, chronic ovarian cysts, degenerative disc disease, fibromyalgia and arthritis. Since January I’ve had 9 kidney infections, one or two a month. I have an appointment with an infectious disease specialist at the end of this month, and I have my normal team of Drs and specialists that I already see along with my pain management dr. Well every time I have a kidney infection it causes my IC to flare and my pain because so out of control that I end up in the ER, so my PM gives me extra pain meds to help me get through the infection. Well my normal pharmacy had a pharmacist who’s been snippy with me before and when I handed her the extra script, she blew up on me. She said pain meds don’t help with my kind of pain, it’s only a bandage treatment, I shouldn’t be allowed to take pain meds this long, my regular pain meds should be enough, I’ll OD, my dr is an idiot, I’m not really in that much pain and she wrote a bunch of notes on my account barring me from ever getting extra meds again, including for surgeries etc. I started crying, she used an aggressive tone and lectured me in front of a line of other patients and threatened not to fill my prescription, then did after slamming her hands down and furiously writing on my prescription paper then on my account about how I’m not allowed to do this anymore. I was so so embarrassed and now I’m terrified to have anymore prescriptions or anymore acute pain issues. I hate that this is my life now. I didn’t ask for this!
What I said:
It’s been said to me by my Doctor that it’s impossible to become an addict to opioids when you actually, truly need them. I don’t get high, and I function completely normally. I could be tested by the police and while the drug would show in my system, I wouldn’t show as impaired. It’s the people who abuse the drug and who take it in a manner it’s not meant to be taken in that ruin it for the rest of us. I would have reported your pharmacist to her association. That was uncalled for and completely unprofessional. She can NOT refuse you unless she refuses to serve you completely. Can you transfer to a different pharmacy for the future? Honestly, if she had done that to me, I would have raked her over the coals….no one, and I mean NO ONE talks to me like that. EVER. I live in Canada and we are facing our own Opioid Crisis here as well. The College of Physicians and Surgeons is cracking down on Doctors who over prescribe or who prescribe too high of a dosage of narcotics to patients. I have been on Oxycodone for almost 10 years now, going from a dose of Slow Release OxyNeo 90mg 3 times a day to 30mgs 3 times a day. plus other meds I take for Fibro, Osteoarthritis, D.I.S.H., Trigeminal Neuralgia, Bipolar Disorder, Diabetes Type 2 and Hypothyroidism, amongst other issues. Three of my drugs clash and shouldn’t be taken together, but I have no choice. I hope you’re able to find a pharmacy that treats you with respect and dignity just like you deserve. Before you give them your business, shop around and ask them what their policy is for opioid customers. Tell them of the experience you had and ask them how they treat that type of situation. Good luck to you and I wish you better, pain-free days ahead. oxoxo
what Angela said:
I fight this as well and also have issues with my body metabolizing my meds too quickly. The dosages i am on would probably put someone into an overdose but unless you know what i am on, you’d never know i was on anything. Trying to advocate for myself constantly is a huge struggle and mentally draining. The thing is, i am also a nurse and still trying to remain independent through the 9 surgeries ive had in the last 5 years alone. Not only is it a struggle to advocate for myself but i also advocate for my patients the best i can as well. I am constantly fearful that i am going to be cut off from my meds and end up in a pain crisis, in massive withdrawal and become completely unable to support myself. I am also a single mom, so losing my income is a big deal. I am so sick of taking heat because of people who abuse the system. Of every person i know who has chronic pain and take medication, none take them incorrectly, nor do they get high from them. Even if i do take more than usual, i just get sick so if my pain is out of control, i really have to weigh that consequence. I am now in dread because i have to see a new pain management PA next month and my surgeon is moving. Just this thought is really stressing me out.
These are the things we have to deal with as PwCP. It’s not just the doctors we fight with about our medications – it’s the pharmacists as well.
Yes, my friends, there IS a crisis regarding opioid medication and it’s affecting the people who need the drugs the most. The patients. The people with chronic pain. Us.
Did you know that as a Patient, you have a Bill of Rights, afforded to you under your Government? It’s true! There are certain obligations your government has committed to meeting when it comes to your health care and I decided it was a good time to share those with you, as well as to write-up a set of Rights that we have as Patients for our Doctors, Nurses and other Medical Professionals. Are you ready?
Canadian Patients’ Bill of Rights*:
You have the right to be fully informed about one’s medical condition;
You have the right to be advised of the available treatment options;
You have the right to be involved in treatment decisions;
You have the right to information on the qualifications and experience of the health professionals from whom services are received;
You have the right to receive considerate, compassionate and respectful public health services;
You have the right to confidential communications with health professionals;
You have the right to have access to and copies of personal health records and to have them corrected, if necessary;
You have the right to have health records kept confidential and not used for any purpose other than public health services without written consent;
You have the right to designate a person to exercise rights on the patient’s behalf if the patient is not able to do so because of a physical or mental incapacity; and
You have the right to be informed of all rights and responsibilities under the bill and under other laws of Canada or a province with respect to public health services.
American Patients’ Bill of Rights**:
You have the right to receive accurate and easily understood information about your health plan, health care professionals, and health care facilities. If you speak another language, have a physical or mental disability, or just don’t understand something, assistance will be provided so you can make informed health care decisions.
You have the right to a choice of health care providers that is sufficient to provide you with access to appropriate high-quality health care.
If you have severe pain, an injury, or sudden illness that convinces you that your health is in serious jeopardy, you have the right to receive screening and stabilization emergency services whenever and wherever needed, without prior authorization or financial penalty.
You have the right to know all your treatment options and to participate in decisions about your care. Parents, guardians, family members, or other individuals that you designate can represent you if you cannot make your own decisions.
You have a right to considerate, respectful and non-discriminatory care from your doctors, health plan representatives, and other health care providers.
You have the right to talk in confidence with health care providers and to have your health care information protected. You also have the right to review and copy your own medical record and request that your physician amend your record if it is not accurate, relevant, or complete.
You have the right to a fair, fast, and objective review of any compliant you have against your health plan, doctors, hospitals or other health care personnel. This includes complaints about waiting times, operating hours, the conduct of health care personnel, and the adequacy of health care facilities.
I’ve not done the Rights for other countries as most of my traffic comes from North America, but I’m sure a simple Google search using your country and “Patient Bill of Rights” would turn up something similar. I think this is good information for all of us to have and it’s all very reasonable.
Now the list for us as Patients:
You have the obligation to treat your doctor and other medical personnel with respect.
Be organized when you go to see your doctor – know the questions you need to ask and understand your doctor is limited to one or two concerns at a time. If you have more than that to talk about, book a double appointment. Don’t be an “oh, by the way” Patient.
If you need refills of your prescriptions, let the office know when you’re making your appointment. This way, they can schedule that into the time you spend with the Doctor.
Bring along a family member or trusted friend to help translate for you if English is not your first language. Don’t let translation issues cause your appointment to run overtime. The same goes for the hearing impaired – bring a sign language interpreter with you if needed.
Find out what the policy is for missed or cancelled appointments with your doctor. Most cancellations given within 24 hours are fine, but if you need to cancel with short notice, you may have to pay for the full cost of the appointment. Every office varies, so know in advance what your obligations are.
Be honest. Tell your doctor if you’re using recreational drugs – it can make a difference in regards to the prescriptions they need to write or tests they need to run.
Speak up if you don’t understand something the doctor says. You have a right to clear and concise information so if you’re not sure of what the doctor is saying, ask for clarification. There’s no sense going home and then having to call the doctor’s office to ask what he meant. Your time in the office is your chance to have everything explained properly. If you feel your doctor is being dismissive of your symptoms, you have the right to ask for a second opinion.
What do you think of the Patient list? Is there anything you think is wrong? Is there anything missing that should be added? Tell me in the comments below.
Remember, we have as much of an obligation to be good Patients as our Doctors and Nurses et al do to be good practitioners of medicine. It’s a two-way street and only by working together will we be able to form a Patient Centred Care Team where those practitioners are working with us in partnership for our best health.
There is always hope.