Chronic Pain and The End Of Life

Helping hand

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’m sorry.”
“I forgive you.”
“Thank you.”
“I love you.”
“It’s OK to die.”
“Goodbye.”

  • 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?

Funeral Arrangements

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

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…

There is always hope

 

 

Pain In The Forecast

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If you’re like me, the weather can often be depressing at this time of the year. Depending on where you live, you could be facing either ongoing rain (the West Coast) or the cold and snow (the Prairies and East Coast) with the exception of those few lovely warm locations in the states that stay beautiful year-round.

For People with Chronic Pain (PwCP), the descent into the colder wetter weather can be a real nightmare. We tend to have more flare-ups in our pain, our symptoms overall become harder to deal with and pain and side effects have a tendency to last longer than usual as well. Sleep disturbances become more frequent also, whether that means more sleep than usual, or less.

Chronic pain symptoms possibly affected by cold weather include:

  • Swelling around joints
  • Inflammation near the spine
  • Muscle stiffness or tightening

Poor circulation is a symptom of many chronic conditions, and most in the scientific community agree that cooler weather affects circulation. For patients with underlying conditions like diabetes, decreased circulation can aggravate problems with joint and back pain.

Take a look at this AccuWeather Arthritis Index for a Monday in 2018 in the US. It showed mixed weather conditions across the country and gave some corresponding issues for how health was affected:

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Another theory on the possible connection between cold weather and increased chronic pain involves bodily changes. Blood vessels in limbs constrict, or shrink, to compensate for a loss of heat to maintain the body’s core temperature. As a result, pain signals sent via nerves may be amplified.

While some people with chronic pain do report feeling better when moving to a warmer climate, the body typically adjusts to new climates over time, so relief is likely to be temporary. A good workout, soaking in a tub of warm water, and applying heat packs or warming gel are just a few of the remedies chronic pain sufferers can use to counter changes in pain when cooler weather arrives.

Here are a few of my recommendations for warming products you can find on Amazon.com to help combat the cold and rain:

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  • Delivers deep, penetrating, moist heat to the neck, shoulders, and upper back to relieve pain, aches, tension, and stress
  • The heavy weight of the Huggaroo wrap retains heat longer, keeps the wrap in place around your neck and shoulders, and delivers deep pressure therapy for extra relaxation
  • Provides subtle and soothing herbal aromatherapy while your muscles are relaxed by the heat
  • May also be chilled in the freezer and used as a cold pack for a cool, refreshing experience
  • Designed in Nashville, TN, USA and meticulously crafted from premium materials with attention to the smallest details. 100% satisfaction guarantee

 

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  • Includes (Pack of 3) ThermaCare Heatwraps Advanced Muscle Pain Therapy air activated Heatwraps
  • Patented heat cell technology penetrates deep to the source of pain, increasing blood flow to promote muscle pain relief while accelerating healing
  • Specially designed to help relieve pain associated with muscle aches, stiffness, tightness, muscle spasms and cramps
  • Thin enough to wear discreetly under clothing
  • Flexible enough to wear on the move, exercising or relaxing

 

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About the Heated Neck Pain Relief Pillow

  • Microwavable / Heatable Neck Wraps for unbelievably fast pain relief! Ideal for shoulder & neck pain when warm. Relieve pain in minutes by simply misting your pillow & putting in the microwave. When nice and moist your pillow will stay hot for up to 30 minutes.
  • Filled with Organic Flaxseed & Natural Herbs like Lavender makes this pillow the ulitmate anxiety and stress relief device.
  • Your new Neck Pain Relief Pillow is designed to be put in the freezer so you can have the best of both worlds, hot or cold. We recommend freezer time of at least 1-2 hours for maximum effectiveness.

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About the LANBRELLA

  • UPGRADE INVERTED FOLDING DESIGH: Shorter and Easy Carry. Convenient to store anywhere. Suitable for travel and daily use.
  • HIGH-END UMBRELLA: Best-in-class construction, stylish and sturdy, high quality, durable travel umbrella.
  • INNOVATIVE SAFE LOCKING SHAFT: This safety umbrella has a self-locking shaft. While closing it, if you slipped, the rod doesn’t move. You can just push it together easily. It’s like a seat belt and locks every step on the way. Most umbrellas will flick back if you do not push the handle into the correct position; it may cause an accident by hitting you or other people. LANBRELLA safety umbrella effectively prevent accidents; riot security system, closed umbrella safer and easier.
  • SUPERIOR RAIN RESISTANT: The Canopy is made by 210T Pongee fabric which makes it good waterproof performance. The LANBRELLA travel umbrella protects you in a drenching downpour with a high quality canopy coated with waterproof technology. Water won’t soak through but instead beads up and bounces off, preventing the leakage you get with other umbrellas.
  • CONVENIENT AND GENTLY AUTO OPEN/CLOSE BY ONE HAND: It is very convenient to open or close the umbrella only by pressing the button on the handle. Just push the button once to automatically open and press again to instantly fold the canopy closed. It will open and close gently like a gentleman. You do not need to wait another second to open the umbrella when you get out of your car in the rain, especially in heavy rainfall, even when your hands are full.

 

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About the Pajama Gram Robe

  • ROOMY FIT – We use natural HIGH-QUALITY FABRICS, so our PJs are designed to accommodate shrinking; We want our customers to be entirely satisfied with our PJs, so WASH BEFORE WEARING for the best fit
  • SUPER SOFT– Super-sweet robe featuring long sleeves, side pockets and roll-back cuffs
  • SUPER-COMFORTABLE – Made from premium-quality materials, including our super-soft fleece that keeps you exceptionally warm and comfortable
  • COMFORT-FOCUSED – Made to keep you comfy for hours of relaxation

 

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About the Multi-Use Electric Blanket

  • Using carbon fiber heating material, producing far infrared ray, improving blood circulation.
  • Soft fleece material, bring warm touching feeling.
  • The heating inner set can be taken out, easy for you to wash the blanket.
  • USB can be connected to computer, power bank, convenient for use.
  • A necessary equipment in winter, when reading, watching TV, working, you won’t feel cold any more.

I hope this information helps to explain what we Pain Warriors already knew – pain gets worse when the weather does. May these suggestions for warmth and comfort give you some ideas to break the chill and get back to being cozy again until the return of Spring.

There is always hope

Chronic Illness and the Holidays

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As we move into December and the start of the Festive season, it can be a time of great stress for those of us who live with Chronic Illness. I wanted to share some strategies for getting through this time of year without increasing your pain or stress levels.

Here are some of my top suggestions:

Plan In Advance

As Christmas, Hannukah and New Years get closer, it’s a good idea to start thinking about what you’ll do and where you’ll go. Are there family traditions that can be changed in regards to who hosts events? If it’s been you in the past that hosted a large group, perhaps someone else could do it this year and you could be the guest. Start to prioritize the things you most want to do (attend a Santa Claus parade, a Festival of Lights, Religious Services, visiting certain friends, etc.) and then build your schedule around that.

Keep Managing Your Chronic Illness

Once you have a schedule in place, you can start building in rest days before and after events. Don’t forget about the day of the events themselves and how you need to ration your energy to have the greatest chance of being able to participate.

Go to your scheduled doctor’s appointments and take care of yourself. It’s so tempting to cancel these things at this time of the year, but don’t. Make sure you are taking your medications as prescribed. If you have special dietary needs, keep them in mind when eating out and preparing meals. Now is not the time to go off a medically necessary diet.

Make Lists

Make lists of things you need or want to do. Prioritize those lists. Delegate and let some things go. Take advantage of online shopping to save your energy.  And don’t be a perfectionist. There’s no room for perfectionism in a chronically ill person’s life.

Pace Yourself

If you know you have a party to go to in the evening, that morning is not the time to scrub out your tub. This is another area in which I struggle. Pace yourself throughout the day and over a period of several days. If you are planning on going shopping with friends on Saturday, plan on Friday and even Thursday being light activity days.

Be Honest

If you’re going somewhere else to celebrate and you have energy limitations, let your host know that you may not be able to participate fully in the activities. If you aren’t able to host at your house like usual, ask others to chip in and host instead. Being honest with people in your life about your limitations can be helpful for avoiding hurt feelings later. Think through what you need to explain to others ahead of time to allow the events to go smoothly.

Enlist The Help Of Your Spouse Or A Friend

Enlist the help of your spouse or a good friend to be part of your team during the holiday festivities. This should be someone who knows you well and will be able to read your responses to situations. This person will help you feel safe in the situations you’re entering and will watch for any indication that you aren’t feeling well.

My husband Ray, serves in this role for me. Another friend or family member could also do this. Basically, Ray notices when I’m getting worn down and my health is going downhill. He’s particularly aware of my flagging energy, and will often ask me how I’m doing to gauge whether it’s time to leave. I also know I can tell him I’m ready to go and he’ll take me home immediately if I need to leave.

Be Okay With Your Plans Changing

This one is a big part of normal life with chronic illness. Flexibility is important because things can change on a moments notice when health issues are a concern.  Even if you have everything planned and scheduled, do yourself a favor and release expectations. If you are religious, prayerfully plan your schedule but then hold those plans loosely. Ask God to cover you with perfect peace in whatever situations you may encounter with your health over the holidays.

Ask For Help

Ask for specific things. I don’t like to depend on anyone for help, but if it means making the holidays more manageable, I think it’s worth it. Sometimes, people will offer to help, but they don’t say what they are willing to do. Having a list ready with ideas of what others can do for you will come in handy when people make those kinds of offers. Do you need help with laundry? Running errands? Housework? How about help with wrapping gifts? Think about all of your regular and holiday tasks and delegate some of them to family members and willing friends.

Connect With Others

Try to make time with friends you might not otherwise get to see, even if it’s just for a short while. Have a quick get together at a coffee shop, chat with a girlfriend about a sappy Christmas movie you’ve both watched. Make an effort each day to reach out to someone. Text, Facebook, instant message, make a phone call. You don’t have to carry on an hour-long conversation, just a brief connection can be enough.

Find “Me” Time

Build in some time just for yourself during the holidays to read, craft, rest or do whatever else will help to give you some “me” time. It’s important to recharge your batteries. If being surrounded by people is what energizes you, then do that…it’s all about what makes you feel good.

Make Time For Your Spouse Or Significant Other

It’s so important to carve out time for the two of you. With all the busyness going on around you,  communicating can sometimes take a backseat, especially if you aren’t feeling so well. Be honest about how you are feeling and ask for help when you need it. Try to sneak in a few inexpensive “dates.” Drive around and look at the Christmas lights, stop for some hot chocolate, attend a Christmas program together. Just enjoy each others company.

Laugh As Much As You Can

This one is one of my favourite pieces of advice. Laugh. Just do it. I’ve found that no matter how horrible I feel, laughter can be a source of medicine for me. Laughing helps lift my spirit and makes me feel more alive. Try to enjoy yourself while you celebrate the holidays, and be sure to include laughter in your days!

Remember The Reason For The Season

It’s so easy to get caught up in the baking, partying, shopping, decorating, etc., but that’s not really what it’s all about. If you are a religious person, keep attending church services and go to the special holiday programs. Listen to religious Christmas songs along with the pop tunes. If you aren’t particularly religious or are a nonbeliever, meditate, attend holiday community events, and enjoy finding ways to nurture your own spiritual side.

Remember….There Is Always Hope

Fibromyalgia and Dark Thoughts

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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.

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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.

Volunteering

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.

  1. Watch a sunrise or sunset
  2. Send someone you love snail mail
  3. Volunteer
  4. Get crafty
  5. Bake something
  6. Keep a journal
  7. Take a walk
  8. Do a good deed
  9. Read a novel
  10. Go to the museum
  11. Sing
  12. Take a class
  13. Enjoy a power nap
  14. Log off Facebook
  15. Practice positive affirmations
  16. Mentor someone
  17. Plant a garden
  18. Have a warm bath
  19. Go to an art gallery
  20. Give more compliments

And finally, remember…

There Is Always Hope

Let’s Find Out If Fibromyalgia Is Real.

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:

Fibromyalgia-Signs-Causes-and-Treatment

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.

But, as I always say…

there is always hope!

Turning Shame to Victory

I should on myself today.

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As a person living with Chronic Pain from Fibromyalgia and a host of other conditions, I tend to live with a lot of shame. I blame myself for not being able to keep up with the chores around the house that I should be able to do. I blame myself for not being able to work as an Administrative Specialist, a job I adored. I had a pity party about a lot of things as I stared at the dust on the TV stand. That’s right…I should upon myself today. I do it often. Too often.

Most people with Chronic Pain do the same thing. When we lose the ability to stay on top of the chores we used to do easily before, we start to feel guilty and ashamed. Dishes pile up, laundry goes unwashed, showering and personal grooming falls by the wayside and moving from bed to couch often becomes our biggest accomplishment. It’s not that we want to feel this way, but pain and the side effects of medication often make us this way. Most of the medications we are given include fatigue as one of the side effects. Others include weight gain, which can slow us down tremendously, nausea, constipation and/or diarrhea, dizziness, and other unpleasant things.

And that brings up another issue. All of these side effects do little to help us feel pretty. In addition to feeling pain and fatigue, we’re often left carrying extra weight so now we feel even less attractive than before. It’s a “damned if you do, damned if you don’t” situation.

So how do we get over “shoulding” on ourselves. We feel like we should be able to keep up with the chores around the house, while we’re still taking care of making dinner and watching the kids and staying on top of their activities and doing everything else expected of us, plus making sure our spouse’s needs are met.

What happens when you live with a spouse who expects you to manage everything exactly like you did before you became sick? A spouse who doesn’t believe that you’re really ill and who thinks it’s all in your head? What if you live without a spouse – if you’re a single parent with no support? Who takes care of you?

In order to find victory in the midst of this shame, try answering some of these questions*, being as honest as you can.

  • What three words/phrases best describe you in a POSITIVE way? Don’t settle for neutral or slightly positive words to describe yourself. Be bold.
  • What do you do best? Everyone has unique talents and abilities — find yours by taking an accurate inventory of your life.
  • What is your biggest accomplishment in the last year? If fibro and depression have been a longstanding part of your life, you likely feel that the last year has been void of any accomplishments. Look deeper — achievements come in all shapes and sizes. Depression works to minimize your triumphs, but shedding light on them magnifies their impact.
  • What are three successes in your life? When you look at your lifetime successes, you begin to see how effective and valuable you can be. You understand your value and build your self-esteem.
  • What are you working on? Having goals and direction in life limits depression. Completing those goals adds another accomplishment to your list and boosts esteem.

Fibromyalgia may change many things in our lives, so it’s important that we remember to find the positives and celebrate them. No more shoulding on ourselves!

So, I’ve decided to give up the guilt about what I’m NOT able to do around the house. I’ve even found new hobbies and activities that I’m passionate about and that I’m actually good at! I’ve become a volunteer for an organization in BC, my home province in Canada, that uses Patient Partners to work with Health Care organizations to help make real change in how health care is delivered. The Patient Voices Network has given me opportunties to speak in front of large crowds, attend educational events and become part of several committees. I’m careful to choose to become engaged according to how I’m feeling and I don’t take on engagements that require weekly participation. Most of what I do involves 3-4 hours of my time per month which is manageable. Twice I’ve had to regretfully pull out of engagements that became too involved for me to manage. Even at the last conference I attended which lasted for 3 days, I was able to build rest time into the daily schedules. I wouldn’t have been able to manage otherwise.

That being said, I don’t want anyone to think that I’m underestimating how awfully painful it is to be forced to change yourself or how hard it is to find new passions to give you a sense of purpose. These are not simple to apply or instant fixes. Please don’t think I’m minimizing the pain of the loss. I want you to know that I think you’re incredible because of the fact that you’ve survived those things and have continued moving forward, no matter how slow. That is victory!

Even when you’re sick and you haven’t found new activities or even if you can’t get out of bed, what I just said about you being incredible is still true. You’ve survived so much and you’re still here fighting! I mention finding new things to do as a way to better self-esteem because I know it’s something helpful when possible, but there are so many things I feel are more important and that have been more fulfilling for me.

Being sick has forced me to learn a lot of lessons that other people might not ever learn – lessons about patience, how to deal with pain and difficulties with grace, good humour and empathy. I’ve learned that the little things are often the big things in life.

All That Matters

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

Also, I think I understand more about pain and can truly empathize with others who are hurting. I feel like I can truly help people because of the pain I’ve experienced. I don’t know about you, but I think that’s pretty darn cool. And I feel like it takes immense strength to not only survive chronic illness, but to continue appreciating life and showing love to others when in constant pain. It’s also taken strength to rebuild myself and my self-esteem. I have to give myself credit for that. And finally, as much as I wish I was healthy, I fight for my life every day and I’ve won every single time. If that’s not victory then I don’t know what is! And the last thing I know is that if I’m capable of all this…you are too.

There is always hope

 

 

 

* https://fibromyalgia.newlifeoutlook.com/self-esteem-fibromyalgia/

Relaxation for Chronic Pain

Research has shown that pain is influenced by emotional and social factors. This needs to be addressed along with the physical causes of pain. Chronic stress is one factor that contributes to chronic pain. The good news is that you can get natural pain relief by making relaxation exercises a part of your pain-management plan.

stress-title-image_tcm7-162632

To understand how natural pain relief works, it’s important to understand how stress affects your body. Our body has a natural “fight or flight” response when it comes to stress and pain and stress have a similar effect on the body: your heart rate and blood pressure rise, breathing becomes fast and shallow, and your muscles tighten.

With chronic stress, the nervous system keeps the body on constant alert. This takes a big toll on your system. Levels of stress hormones increase, and muscles remain in a nearly constant state of tension.

Chronic stress hurts.

Relaxation calms the mind and helps the body unwind. It is particularly important for people who live with pain. Pain increases muscle tension which in turn, creates more pain. When muscles are tense, they tighten and increase pressure on our nerves and other tissues which can make the pain worse. Relaxation can help break the pain-tension cycle. There are many forms of relaxation techniques so it should be easy to find one that works best for you. 

The easiest one to begin with is deep breathing. Shallow, rapid chest breathing results from tension. Deep breathing from the diaphragm helps relax you. To begin, find a warm quiet place, where you won’t be disturbed. Once this technique is learnt, you can use it in almost any situation you find yourself.

Deep breathing

  • Make yourself comfortable
  • Loosen any tight clothing
  • Begin by listening to your breathing as it is
  • Breathe through your nose whenever possible (use your mouth only if your nose is blocked)
  • Put your hands over your stomach area and feel them rise and fall.
  • Imagine you are breathing into your hands. Relax your stomach muscles. Take deep, slow breaths. Remember to breathe at your own pace
  • As you breathe in, imagine you are breathing in peace. As you breathe out, imagine you are blowing away tension.

Foursquare Breathing

  • Inhale to a count of four, hold for a count of four, exhale to a count of four, then hold again to a count of four
  • Breathe deeply, so that your stomach rises and falls with each breath
  • Repeat for ten cycles

Progressive Muscle Relaxation

Tense and relax each muscle in turn unless it hurts, in which case, leave that one out.

  • Sit or lie down quietly in a comfortable position
  • Close your eyes and take slow, deep breaths. Breathe easily and naturally
  • Slowly tense each muscle in your body. Begin with your right hand. Squeeze your right hand into a tight fist. Feel the tension in your right hand. Hold this position for a few seconds. Now release the tension slowly. As the tension disappears, your hand feels relaxed.
  • Repeat this for your left hand.
  • Arms – tense both arms. Make your arms rigid and tense. Hold and release
  • Shoulders – lift your shoulders. Hold and release. Hunch your shoulders to touch your ears. Hold and release.
  • Toes – curl your toes up. Hold and release.
  • Feet – pull your toes up towards your face. Feel the muscles working in your shins. Hold and release. Then point your toes away from your face. Feel the muscles tensing in your calves. Hold and release.
  • Legs – clench your thighs. Hold and release. Clench both buttocks. Hold and release.
  • Eyebrows – raise your eyebrows as high as they can go. Hold and release.
  • Frown – pull your eyebrows together. Scrunch up your whole face. Hold and release.
  • Eyes – screw up your eyes tightly. Hold and release
  • Jaw – Open your mouth wide. Hold and release

Now your muscles are relaxed. You feel calm and still

Relaxation exercises calm your mind, reduce stress hormones in your blood, relax your muscles, and elevate your sense of well-being. Using them regularly can lead to long-term changes in your body to counteract the harmful effects of stress.

There is always hope