Fifty Reasons To Keep Going

If you are going through a hard time right now, I want to give you 50 good reasons why you need to be strong and why you need to stick around.

  1. You are a soul worth having on this earth
  2. Long hugs (my favourite)
  3. Cute baby animals
  4. You are so loved
  5. Staying up all night just to sleep in
  6. Making babies smile and laugh
  7. Sharing secrets with your best friends
  8. You will be missed
  9. Sunsets
  10. Late night phone calls
  11. Cuddling
  12. You are needed
  13. Doing stupid stuff with your best friends
  14. Laughing so hard that you cry
  15. Seeing yourself recover
  16. Crunchy leaves
  17. Knowing all the lyrics to a song
  18. Stargazing and cloud watching
  19. You are important
  20. Tomorrow is a new day.
  21. Chocolate exists.
  22. There are people out there who truly love you.
  23. At least a thousand other people at this very moment feel sad, too — you’re not alone.
  24. There’s help out there no matter how big or small your problem is.
  25. There’s music out there that totally captures what you’re feeling, which means you’re not the first or last to feel it.
  26. Everything is temporary.
  27. Unconditional love exists.
  28. Puppies.
  29. Nobody else knows what they’re doing either.
  30. Trying never hurt anyone.
  31. Smiles are contagious.
  32. You have a right to feel what you’re feeling.
  33. Anything can happen with a pen and blank sheet of paper.
  34. You’re not this person.
  35. Animals love you no matter what.
  36. The best lessons come from the worst mistakes.
  37. Netflix has so many shows you need to watch.
  38. All good love stories have a “goodbye” before the happy ending.
  39. Just being alive means you’ve beaten the odds.
  40. There’s a plethora of cliche quotes to make you feel better.
  41. Like “Nothing worth doing is ever easy.”
  42. And “Quality is better than quantity.”
  43. Also, “Everything happens for a reason.”
  44. Whatever you’re going through is making you “you.”
  45. Nothing feels better than a good cry, so don’t feel bad about it.
  46. You will always have control of your choices.
  47. Forgiving does bring healing.
  48. Simba lost everything and still became king of the jungle.
  49. You’re becoming stronger every moment you pick yourself back up.
  50. You’ll be OK.

Please reach out for help if you need it.

Text CONNECT to 741741 in the United States or phone:

1-800-273-8255

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

In Canada

Call 911 or use the following link for help in your province:

https://suicideprevention.ca/need-help/

 

There is always hope

Managing My Mental Illness

I have Bipolar Disorder and have talked about it before on my blog. It’s not something I hide but I don’t really discuss it much either so I thought I’d share a bit more about what it looks like for me.

Although currently stable on medication, when I was unmedicated and undiagnosed, I would have the most incredible highs and lows. My manic highs would see me racing around the house, cleaning whatever I could, and cooking dinners every night and baking and crafting and never, ever sleeping…I would be up for days on end without any sleep at all. At my worst, I was awake for 8 days in a row – and I mean without a drop of sleep. I was unbeatable…I would shop online without realizing what I was doing, and then all of a sudden, these packages would start arriving and I would have no clue what was in them – usually jewellery (cheap stuff) or clothing from Zulily (an online store I love).

woman-shopping-online-sample-sale

On the other hand, when the inevitable crash came, I would crash hard. All I wanted to do was curl in the fetal position in bed and sleep…so that’s all I did. I didn’t bathe, I didn’t eat, chores went by the wayside, forget about cooking and crafting. I did the bare minimum to keep my cat alive and my husband had to fend for himself after a 12 hour day at work when it came to eating, plus do the dishes. I rarely left the bedroom, unless it was to spend mindless hours on the computer doing nothing.

Once we realized how serious the problem was, my husband and I realized it was critical that I needed to be on medication. I saw my doctor and was started on Seroquel. After that drug stopped working, I’ve been taking Abilify, which has been excellent for me in terms of managing my symptoms. Unfortunately, the side effects have been harsh and I’ve been paying the price.  I am not a vain woman, but I’ve put on 20lbs since using the medication (in 6 months) and it’s 20lbs I can’t afford to carry on my 5’2″ frame. I have no ability to exercise and lose the weight, especially now that I’m wearing an Air Cast on my left ankle to try to help reattach a tendon that has torn away from the bone. Plus I take other medications that all have their own side effects…so I have to be careful with those as well.

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I’ve also experienced some other unpleasant side effects including severe brain zaps, and I’ve been seeing shadows on the sides of my vision. These were enough to send me back to my Psychiatrist to discuss making another medication change – the dance that you tango when you have a mental illness. He’s decided to try me on one of the older drugs that is less likely to cause weight gain like so many of the newer ones do. It’s called Zeldox (my family doctor says it sounds like a cartoon character and I agree!) and the side effects listed are as follows:

  • constipation
  • cough
  • diarrhea
  • dizziness
  • fatigue
  • flu-like symptoms (e.g., fever, sore throat, chills)
  • leakage of fluid or milk from breasts (women)
  • menstrual changes
  • nausea or upset stomach
  • rash
  • restlessness
  • runny nose
  • sexual difficulties
  • vomiting

In general, most of these are mild and go away in the first couple of weeks of taking the medication, so I’m not too concerned. I’m just hoping that the brain zaps disappear as this is one of the most unpleasant of all the side effects that I experience. What is a brain zap you ask?

Brain zap or brain shiver is a term used to describe the sensation of a sudden jolt or buzz in the brain. It is also compared to the electrical shock, has no apparent cause and is brief in duration. In most cases, it’s relatively mild but people have reported the occurrences of very extreme and painful jolts. They are a temporary occurrence. Brain zaps can sometimes be accompanied by dizziness, tinnitus, mild pain and ache and a general sense of discomfort.

I experience mine as a buzz that goes across my head from ear to ear. I can hear the loud buzzing sound as well as feel it, but there isn’t any pain. It’s almost like the hum of an electric razor, but very quick and sudden. Sometimes it’s just one zap, sometimes it’s a series of them. They’re mostly just annoying more than anything but a side effect I can do without due to their frequency.  The shadowing I’ve been getting in my vision is more worrisome as I tend to freak out about anything to do with my eyes. I have no eye problems (other than wearing glasses) and I’d like to keep at least one body part in good shape for as long as possible if you know what I mean!!

I start the new medication on Monday, Dec. 17th but am writing this post to be read in February so I’ll add an update underneath so you know how it’s going.

Bipolar Disorder can be tricky to manage but with the right care, the proper medications and taking them at the right times, it can lead to a normal life. I’ve found the perfect balance between mania and depression. Now I’m able to function most days with the cooking and cleaning when my other health issues allow it and my poor husband can come home to dinner waiting most of the time. I feel more likely to work on a craft than when I was in a depressive crash, and while my sleep still isn’t the greatest, I’m not staying awake for days on end either.

Sometimes called Manic Depression, Bipolar Disorder causes extreme shifts in mood. People who have it may spend weeks feeling like they’re on top of the world before plunging into a deep depression. The length of each high and low varies greatly from person to person. If you are experiencing these symptoms, please see your doctor. There is help available and beyond that…

There is always hope!

Chronic Illness and Anxiety

When you’ve been diagnosed with a chronic illness, you may feel as if you’ve lost control over your future. The stress of learning to deal with doctors and specialists, coping with physical changes, and managing daily life can often lead to excessive worry or stress. Researchers have found that experiencing a chronic illness puts a person at increased risk for developing anxiety or an anxiety disorder. Roughly 40% of people with cancer report experiencing psychological distress that often takes the shape of excessive worry or panic attacks.* People with ongoing, or chronic pain are three times more likely to develop symptoms of anxiety.**

Woman-in-pain-500x334

The daily demands of living with a chronic illness continues to present challenges and generate anxiety long after the diagnosis has been given. Loss of mobility or other abilities can lead to worry about employment or financial concerns. Depending on others, worrying about becoming a burden or even intimacy with your partner may also be concerns. Some people are more easily able to adapt to the changes in their lives. Others may feel overwhelmed with anxiety and struggle to cope. Still others may be in limbo, unable to make decisions about their future.

The Most Common Anxiety Disorders are:

1. Generalized Anxiety Disorder (GAD) involves excessive and uncontrollable worry about everyday things, such as health, money or work. It is accompanied by physical symptoms such as restlessness, irritability, muscle tension, fatigue and difficulty sleeping or concentrating.
2. Obsessive-Compulsive Disorder (OCD) entails persistent, recurring thoughts (obsessions) that reflect exaggerated anxiety or fears. Someone with OCD often will practice repetitive behaviors or rituals (compulsions). For instance, obsessing about germs may lead someone with OCD to compulsively washing hands—perhaps 50 times or more per day.
3. Panic Disorder includes severe attacks of terror or sudden rushes of intense anxiety and discomfort. Symptoms can mimic those found in heart disease, respiratory problems or thyroid problems, and individuals often fear they are dying, having a heart attack or about to faint. The symptoms experienced during a panic attack are real and overwhelming, but not life threatening.
4. Posttraumatic Stress Disorder (PTSD) can follow exposure to a traumatic event, such as a car accident, rape, a terrorist attack or other violence. Symptoms include reliving the traumatic event, avoidance, detachment or difficulty sleeping and concentrating. Though it is commonly associated with veterans, any traumatic event can trigger PTSD.
5. Social Anxiety Disorder (SAD) is characterized by extreme anxiety about being judged by others or behaving in a way that might cause embarrassment or ridicule. People who have SAD have what feels like exaggerated stage fright all the time. SAD is also called social phobia.

Specific phobias are intense fear reactions that lead a person to avoid specific objects, places or situations, such as flying, heights or highway driving. The level of fear is excessive and unreasonable. Although the person with a phobia recognizes the fear as being irrational, even simply thinking about it can cause extreme anxiety. I personally am terrified of the Dentist, even though they treat me gently and with compassion. I have to take medication to help relax me in order to go for a simple cleaning.

Fortunately, anxiety is treatable with therapy, medication and complementary and alternative treatments (i.e. acupuncture, massage therapy, ). But when the focus is on the chronic illness, anxiety is often overlooked. That’s why it’s important to talk to your doctor about your emotional and cognitive health, and to speak up when you experience signs of anxiety.

Emotional symptoms of anxiety include:

  • Becoming easily agitated, frustrated, and moody
  • Feeling overwhelmed, like you are losing control or need to take control
  • Having difficulty relaxing and quieting your mind
  • Feeling bad about yourself (low self-esteem), lonely, worthless, and depressed
  • Avoiding others

Physical symptoms of anxiety include:

  • Low energy
  • Headaches
  • Upset stomach, including diarrhea, constipation, and nausea
  • Aches, pains, and tense muscles
  • Chest pain and rapid heartbeat
  • Insomnia
  • Frequent colds and infections
  • Loss of sexual desire and/or ability
  • Nervousness and shaking, ringing in the ear, cold or sweaty hands and feet
  • Dry mouth and difficulty swallowing
  • Clenched jaw and grinding teeth

Cognitive symptoms of stress include:

  • Constant worrying
  • Racing thoughts
  • Forgetfulness and disorganization
  • Inability to focus
  • Poor judgment
  • Being pessimistic or seeing only the negative side

 

What You Can Do

Challenge negative thinking. When you’re anxious, your brain may jump to conclusions, assume the worst, or exaggerate. Catastrophizing and ignoring the positives in your life may occur when you live with the challenges of a chronic illness. One way to manage anxiety is by being aware of the negative thinking, examining it and challenge the irrational thoughts. Counselors/therapists can play an important role in teaching you this important coping skill.

Calm your mind. Relaxation techniques can be an effective way to calm anxious thinking and direct your mind to a more positive place. Consider whether mindfulness meditation, yoga, or other breathing and focusing practices can still your body. Taking  time to relax, increases your ability to think objectively and positively when it comes to making choices about your health and life.

Find a good Doctor. If you take medication for both mental and for physical health, it’s important to that your doctors are aware of all your medications. Some medications may actually escalate anxiety, so it’s essential to work with a prescriber who can make informed choices that address both conditions without worsening either.

Find a support group. Managing a chronic illness can be a lonely job as it may be difficult for loved ones to understand the unique challenges. Support groups, whether online or in person are wonderful for creating community but also for providing information that can help reduce worry. They can also connect you to valuable resources for treating your illness.

Acknowledge successes. Anxious thinking about chronic illness can keep you from feeling that you have control over anything in life. It’s important to acknowledge all successes, both big and small. Keep track of the healthy things you do for your mind and body. Exercising, going to counseling, spending time with a friend–these can all help. Keeping these successes at the front of your mind can help you combat worry. They can remind you that you do have the power to affect your present and future.

If you think that you might have anxiety in addition to chronic illness, be honest with your doctor. Ask for help. Anxiety is highly treatable, so remember…

There Is Always Hope

*https://adaa.org/serious-chronic-or-terminal-illnesses
**http://www.health.harvard.edu/mind-and-mood/depression_and_pain

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

 

 

Surgical Solutions And Resilience

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: 

re·sil·ience
[rəˈzilyəns]

NOUN

1. the capacity to recover quickly from difficulties; toughness.
“the often remarkable resilience of so many British institutions”

2. the ability of a substance or object to spring back into shape; elasticity.
“nylon is excellent in wearability and resilience”
synonyms:
flexibility · pliability · suppleness · plasticity · elasticity · springiness ·

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.

Trigeminal nerve branches

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.

MVD sponge placement

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…

There is always hope.

 

Ending The Year

It’s December 29th and the year is drawing to a close. I want to take this time to simply recap the year and say thank you to my Dear Readers for spending your time with me in 2018.

From the beginning of the year, when I really got started blogging, I started out by writing Happy New Year .  My main theme at that time was to talk about my hip replacement surgery which was the real reason this blog came into existance. I had been searching for personal stories of “younger” women who had undergone hip replacements but hadn’t found much, so I thought I’d share my story for others who might find it helpful for themselves. One thing led to another and before I knew it, I was writing about my other health issues, including Fibromyalgia, Chronic Pain, Chronic Fatigue and Invisible Illnesses.

I’ve had the opportunity to share my thoughts about body image, intimacy when you live with Chronic Pain, the sleeplessness that comes with Fibromyalgia and Invisible Illnesss, and how the simple loss of bathing can mean so much heartache. On the other hand, I’ve been able to share about gratitude and finding joy on more than one occasion, so I’ve tried to focus on the positives as much as possible, whenever possible.

I couldn’t do this without you. Without my Dear Readers, there wouldn’t be much sense in putting this out there, so I appreciate each and every one of you who comes to my blog and reads what I have to say. You may not comment on every post, heck…you may never comment on a post I write, but the numbers don’t lie. My stats show that you are there and that you keep coming back. In fact, when I took a week off and didn’t do a thing to market the blog…no Pinterest, no Twitter, no Social Media at all, the numbers dropped, but a bunch of you still came by to see if there was anything new.

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You can see where I was away for the week. On Nov. 15th and 16th, I was in Vancouver for a volunteer meeting, and away from my computer the whole time. When I put the effort in, you do the same and come back to see what’s new…the numbers don’t lie, and I am forever grateful.

So, to wrap up 2018, I want to say thank you. You’ve helped me reach a far greater level of success than I ever thought I’d make, simply because you like to read my thoughts. That’s pretty amazing to me. I just want to provide as much information as I can to anyone who is living with Fibromyalgia, Chronic Pain, Chronic Fatigue or Invisible Illness. I want you to know you’re not alone. I’m right there with you and for as long as I’m able, I will continue to write and bring you articles and information to help you thrive.

I wish each and every one of you a very Happy New Year. May you be blessed in 2019 with the very best the year can offer. Remember…

There is always hope

The Gifts From Chronic Pain

Basic RGB

Living with Chronic Pain is no picnic. Intractable pain day after day wears down the body, the mind and the spirit and it can be extremely difficult finding anything good in the experience, but I have found a few things I wanted to share with you. Remember, these are my own personal thoughts.

  1. If you’re a spiritual person, it can deepen your faith. Now, in all honesty, Chronic Pain with no resolution can have the opposite effect and have you turning away from your Higher Power because you haven’t been healed, but I tend to think in the positives anyway. I believe that having Chronic Pain helps you to draw closer to your Higher Power as you find something…anything… to cling to when times are bad. God is an excellent listener and doesn’t mind if you yell at Him – He already knows you’re doing it, so what’s the point of pretending. Go ahead and be angry at Him. Yell, rant, rave, swear…do whatever makes you feel better. He can handle it. And then when you’re done, take a moment to thank Him for listening to you without judgement.
  2. You develop inner strength. Nobody develops inner strength like a person who lives with Chronic Pain. As the hours and days and years go by and nothing about your physical situation changes, there is resilience. It’s the necessary component that allows you to pick yourself back up after setbacks and keep going. To say to the world “I’m not done yet”. It’s the part of you that refuses to give up when others might say “it’s too hard”. Only you can determine your own resilience and whether or not you can keep going, but so far, you’ve had a pretty excellent track record to keep going. You are brave.
  3. Patience really is a virtue. In a world where everything needs to be had RIGHTNOW!! patience seems to be an old-fashioned quality. A person with Chronic Pain learns about patience very quickly – an oxymoron if ever there was one. You wait for appointments, you wait for doctors, you wait for your pain to subside, you wait for tests, you wait for results, you wait to feel better, you wait for answers, you wait, you wait, you wait. Depending on how complex your situation is, there may be several doctors involved in your care, so you wait for all of them to coordinate their schedules to see you and treat you. You wait endless hours for flare-ups to subside. For sleep to come. For pain to stop. For nausea to disappear. For bones to heal. And in all of this, you learn patience because you have no other choice.
  4. You finally have time to… When you’re feeling up to it, you finally have time to do those small things that you never had time for earlier: watch a favourite show on TV, read a favourite book, phone a friend for a chat, go for a massage, get your hair cut, organize the junk drawer, clean up the hobby room, work on a craft, write a letter to send via snail mail, look up a simple recipe to try that isn’t exhausting, order some flowers, send a love note to your spouse, go through your kid’s baby books or old photos, play a computer game, take an online course, go to an exercise class…the list is as endless as your imagination.
  5. You’re forced to slow down your pace. If you’re anything like me, most people with Chronic Pain or an Invisible Illness probably were Type A Personalities at some point in their lives – always on the go, go, go. If you were a doer who was always busy before, you’ve been given a gift to slow down and appreciate life around you. I became fully disabled in October 2009 but probably should have gone on disability about 2 years sooner. I had to really push through those last 2 years, to the point that I often lost the thread of a conversation right in the middle – I wouldn’t have a clue what we were talking about. I couldn’t manage more than one task at a time when I was famous for my multi-tasking abilities and I would jeopardize safety in firefighting drills by not remembering the steps to take to get out safely. By taking Disability and being forced to slow down, I was able to regain those skills again, in a more family oriented situation.

What gifts would you add to this list that you’ve received since experiencing Chronic Pain or Invisible Illness? Does this list ring true for you? Leave a comment below and share your thoughts.

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

Exercising With Fibromyalgia

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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:

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Move on to Squats, Wall Push Ups and Bicep Curls (with or without light weights)

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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:

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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.

There is always hope.