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).

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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!

Fibromyalgia and Loneliness

Having a chronic illness like Fibromyalgia can be a very isolating experience. Many of us used to work and found a lot of our social life revolved around our jobs, whether it was getting together with the gang after work for drinks or volunteering with a workgroup for a community project. Often, a best friend was made at our jobs whom we would hang out with more frequently, and those sorts of friendships became treasured relationships to us.

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After you become chronically ill though, you often have to give up working, and those relationships no longer exist, not even with the “best friend” that you made. How do you handle the loneliness that comes from that? We tend to not go out a lot in the first place, because of pain and fatigue, so without a reason to get together with former co-workers, there’s now more reason to isolate ourselves than ever. It’s depressing to know that you’re no longer “part of the gang”  and that you don’t fit in anymore. It’s even more depressing to know that your former friends don’t even realize that they’ve shut you out. It’s just the natural progression of you no longer being at the job, and nothing personal.

Reaching Out

But what happens when you try to reach out, to make plans, and people don’t return calls? Or when people reach out to you, but you’re unable to go, because their plans are too ambitious for you? I’d love to see people for coffee, but they always want to combine it with shopping followed by dinner and drinks afterwards, and that’s too much of a day for me. Lunch and shopping, I can do that on a good day, but then I want to go home. And if it’s a bad day, then I have to say no right from the start. And what happens if I start having too many bad days when friends want to get together? They stop calling, period. I am “too sick all the time” and no longer any fun to be with.  It’s easy to get depressed when this happens.

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It’s so frustrating when friends give up on you. I can’t control my good and bad days. I have no idea when a good day is going to go bad. I can feel great in the morning and then start to go downhill by the early afternoon. I try to explain that to people, but they don’t always understand how unpredictable Fibromyalgia can be. Sometimes it can change from hour to hour and even minute by minute. It’s like going outside in changing weather and never being sure of how many layers you should wear. Will you be too hot, too cold or just right? And what do you do with all those layers if you don’t need them?

There’s also the other side of the coin though. What if your friends continue to invite you out, but you keep turning them down? Your reasons seem valid; you’re in pain, it’s too much of a hassle, the weather is too difficult, you’re tired, or you just don’t feel like it. It’s easy to make excuses, but you also need to search the real reasons for saying no. Are the reasons you’re giving valid? Or are you turning down invitations because of depression?

Signs to Watch Out For

How do you know if you’re becoming depressed or socially isolated? Here are some signs to watch for:

  • Being less motivated to leave your home
  • Feeling more anxious or worried when leaving the house
  • Declining invitations from friends or family to meet or attend gatherings
  • Planning fewer social opportunities for yourself
  • Ignoring supports when they reach out to you
  • Seeing only negatives associated with social connections

If you recognize any of these symptoms, please see a doctor in order to be treated appropriately. If you want to be more socially active, but find your friends are not as available as they’ve been in the past, the following suggestions might be helpful for you:

  • Volunteer with like-minded people
  • Help out in an animal shelter
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  • Take up a new hobby
  • Join a support group (in person or online)
  • Join a Social Group in your City (look on Craigslist)
  • Keep a journal – it can help put things in perspective

Loneliness can be hard to deal with, but with the right understanding and support, you can overcome it. Make sure you’re staying in touch with people and not isolating yourself, and reach out to others if your friends have stopped reaching out to you. It’s okay to move forward and make new friends. Listen to your body and do what’s right for you. If you’re feeling up to it, go out and make new friendships through volunteer work or so social groups. If you need to take a break from socializing, that’s fine. Just don’t fade into the woodwork. Remember, your presence is valued no matter how much of it you are able to give at any time. You are loved. And as I always say…

There Is Always Hope!

 

 

Another Offering Of Joy

It seems like all of us are looking for more joy in our lives. Appreciation is one of the easiest ways to feel better right away. No matter what is going on in your life, you can always find something to be grateful for.  When you start to appreciate those things you do have in your life, the feeling of joy will expand as you focus more on it. We are meant to be joyous and living a fulfilling life!

So why is it that most people are not doing that? It’s because they aren’t doing the things they absolutely LOVE to do. It’s time to figure out what we love and then fill our days with being and doing it!

Back in August of 2018, I wrote a well-received post called That Which Brings Me Joy. I followed up with A Little Bit More Joy in September which again was quite popular. Here for 2019 are 75 more ways to bring joy back into your world:

  1. Talk to a Stranger
  2. Go to the Theater
  3. Exercise
  4. Power Down Your Gadgets
  5. Try Something New
  6. Spend Time With Your Favorite Animal
    Adorable puppies and kittens and bunnies together together with cats little friends friend dog sweet cute animal bunny orange
  7. Practice Forgiveness
  8. Create Something Artistic
  9. Get a Houseplant
  10. Give Thanks
  11. Breathe Deeply
  12. Meditate
  13. Do Some Spring Cleaning
  14. Take a 30-Minute Walk
  15. Read a Novel
  16. Join a Team
  17. Do a Good Deed
  18. Get a Good Night’s Rest
  19. Stop and Smell the Roses
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  20. Get Outdoors
  21. Light a Candle
  22. Laugh
  23. Sing Your Heart Out
  24. Organize Your Bedroom
  25. Get Some Fresh Air
  26. Smile
  27. Take a Yoga Class
  28. Soak Up the Sun
  29. Take a Power Nap
  30. Eat a real Breakfast
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  31. Reflect on Your Daily Accomplishments
  32. Take Pride in Your Appearance
  33. Let Your Imagination Run Wild
  34. Sit Up Straight
  35. Practice Positive Affirmations
  36. Give Back to Your Community
  37. Savour Good Memories
  38. Be an Optimist
  39. Give More Hugs
  40. Work With Your Hands
  41. Don’t Worry About What Others Think of You
  42. Shower Yourself With Self-Love
  43. Live in the Moment
  44. Be on Time
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  45. Drink More Water
  46. Daydream
  47. Listen to Music
  48. Appreciate a Work of Art
  49. Let Go of Anger
  50. Spend Time With Friends and Family
  51. Buy Now, Enjoy Later
  52. Earn Your Indulgences
  53. Don’t Over-Indulge
  54. Pop in a Sappy Movie
  55. Read the Newspaper
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  56. Be Spontaneous
  57. Play in the Dirt
  58. Make the Bed
  59. Spend Time With Happy people
  60. Write Down Your Aspirations
  61. Make Time for Yourself
  62. Grow Your Own Vegetables
  63. Simplify
  64. Express Gratitude
  65. Read Something Spiritual
  66. Appreciate Your Surroundings
  67. Have a picnic
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  68. Hold hands with someone special
  69. Travel to a new city or country
  70. Sleep in
  71. Play a board game
  72. Create a photo album
  73. Jump in puddles
  74. Donate unwanted items to those in need
  75. Say I Love You more often

Joy is equal to happiness plus love. Isn’t that what we all want in our lives? Remember…

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.**

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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

Invisible Illness – But You Look Fine!

One of the hardest parts of living with an Invisible Illness such as Fibromyalgia, MS, Ehlers Danlos, etc. is that you quite often look just fine on the outside, while your insides are screaming in pain. This leads many people to wonder if you truly are ill, or how serious your illness actually is. How do you handle this, as a Person with Chronic Pain (PwCP)?Screen Shot 2018-12-10 at 10.56.48 AM

For one thing, you should never have to make excuses for your pain to anyone. What you feel is what you feel, and there is never a reason to justify it or prove it, not even to your doctors. For years, people with Fibromyalgia went undiagnosed or misdiagnosed because Pain was often the only symptom a patient could describe. There are no other outward symptoms and nothing comes back in the blood tests or x-rays that a doctor might order. It’s only through using the 18 Tender Points and determining how many of them you have that a definitive diagnosis can be made for Fibro.

Other diseases often come with outward symptoms – the “butterfly rash” of lupus, the enlarged joints of Rheumatoid Arthritis, the dislocating joints of Ehler Danlos, the varying symptoms of MS – all of them a visual reminder that there is something wrong with a person. Fibro doesn’t present itself that way, and so a person can often look “normal” like everyone else, yet be in a flare up.

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So how do you handle it when the people who are closest to you don’t believe you are ill or doubt the severity of your illness. The first step is to educate them on what Fibromyalgia is: a disorder characterized by widespread pain, which causes many symptoms like extreme fatigue, sleep issues, memory loss and mood issues. It is essentially a very painful, exhausting disease, for which there is no cure and few treatments.” It is becoming much more recognized in the Medical field, unlike in the past, and is well accepted as a legitimate condition, just like arthritis, Lupus, MS, etc.

Basically, your brain miscommunicates with the nerves in the spinal cord and sends out the wrong messages to your body, resulting in an overload of symptoms. This graphic may be helpful in showing you just some of what you can experience:

FibroSymptoms2

And this is the reason it’s such a hard disease to diagnose because these symptoms are often looked at just on their own, and not seen as part of the bigger picture. It’s no wonder people look at us and think we’re crazy. To have all these symptoms and yet still look perfectly normal on the outside…well, I’d wonder too perhaps. That’s where the education comes in. The more we teach people about Fibromyalgia and how it mimics so many other diseases, the more people will realize just how huge a burden we are carrying every day.

Nobody wants to be told they look awful though, so how do you break this Catch-22? You want people to see you as you really are, but you don’t necessarily want to look ill at the same time. Are you obligated to dress up and put on makeup everytime you go out, just to look “good” for strangers? Of course not, but I am advocating that you do it for yourself if you’re able. Run a brush through your hair, throw some lipstick on, go for a trendier haircut or a manicure. Never do it for someone else though and never let a stranger’s comments get to you. Only you know how you’re feeling at any point and sometimes it’s just not possible to do these sorts of things. Pain may get in the way, or finances or depression…in these times, just do the best you can with what you have in the way of energy and time and desire.

Remember…you are perfect just the way you are…everything else you do is a bonus.

Education of others is key, and I truly believe that the more we can share about Fibromyalgia and other Invisible Illnesses with them, the more they will understand what we are going through, and the more compassionate they will become. Perhaps then they will stop commenting on how “fine” we look, and will start seeing us in a true light. Maybe they will see our struggles, our problems, our symptoms and what we have to go through on a daily basis just to survive and finally understand how difficult our lives truly are. Then and only then will come the appreciation and admiration we’ve been waiting for.

There is always hope.

 

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.

 

Refresher Course

I thought I’d start out the year with a refresher course on the conditions I live with and how blogging has had such an impact in my life. Because of my blogging, I have had chances to be interviewed in a Canadian National newspaper, on two different podcasts, and several different articles online. The various conditions I write about are because of the fact I live with them and am personally acquainted with them. So, without further ado, here we go:

  • Chronic Pain
  • Chronic Fatigue Syndrome
  • Fibromyalgia / Myofascial Pain
  • Osteoarthritis (in all my major joints)
  • Forestier’s Disease (aka D.I.S.H.)
  • Type 2 Diabetes (on insulin)
  • Trigeminal Neuralgia
  • Bipolar Disorder
  • Gastroparesis
  • Internal Adhesions/Scar Tissue/Chronic Pelvic Pain
  • Hypothyroidism

So I’ve talked about my Chronic Pain from Fibromyalgia and Osteoarthritis, and when I say I have arthritis in all my major joints, I’m serious. I have it in my shoulders, elbows, wrists and fingers, my cervical, thoracic and lumbar spine, left hip (right hip has been replaced), knees, ankles and toes. Some areas like my left hip and right knee are quite serious and will need replacing, but the rest I’ll have to live with.

Meanwhile, my thoracic spine has a different type of bone condition called Forestier’s Disease or D.I.S.H., which stands for Diffuse (Widespread) Idiopathic (Of Unknown Cause) Skeletal (Referring to the Skeleton) Hyperostosis (Excessive Growth of Bone). It forms in the shape of a bone spur, but instead of a normal spur that could be removed, it looks more like melted candle wax on the spine, so nothing can be done about it.

Diffuse-idiopathic-skeletal-hyperostosis-DISH-of-the-spine-grave-290-male-50-60-yrs

I also have regular bone spurs on my right hand – I had one removed from inside my pointer finger as it grew through a tendon, and there is a second one on the outside of my middle finger growing through the knuckle. Both have been very painful and interfere(d) with typing and writing.

My Type 2 Diabetes has been with me for 8 years now and is mostly under control. I go for regular blood tests every 3 months, to get my A1C numbers that show my average blood sugar levels for the previous 3 months. Generally speaking, I average around 6.9 to 7.2 which is slightly higher than the 5.9 – 6.2 my doctor would like, but I do my best. I use long acting insulin at night, 14 units which does a good job at helping to keep things under control. I’m trying to eat better, but I’m a sucker for sweets and it’s hard to be disciplined.

My Trigeminal Neuralgia is something I’ve talked about before so you can read the article about it here.  The same goes for my Bipolar Disorder.

So, what else is on that list. Ah yes, the ever lovely Gastroparesis

what-is-gastroparesis

Now, the way they determine if you have this or not is through something called a motility test. In my case, they wanted me off ALL of my meds first to make sure they weren’t contributing to the problem, so for 2 days prior to my test I had to quit my medications cold turkey. That included my meds for Fibromyalgia, my anti-psychotics AND my opioid narcotic for pain. Do you have any idea what going through withdrawal is like? It was horrendous. I had the shakes, the runs, I couldn’t eat or sleep, and for those 2 days, I alternated between thinking I was dying and wanting to die to having to feel better in order to die.

On the day of the test, I went to the hospital to where the Nuclear testing is done. I knew that I was going to be eating an egg sandwich with a radioactive tracer in it and that tracer would be monitored through a series of special x-rays, but I explained to the nurse that everything I ate was immediately running right through me like water. She was so sweet…she “reserved” me a private bathroom, brought me my sandwich and told me to eat as much as I could while I sat there. Talk about embarrassing!!! It’s embarrassing writing about it!!! But, I managed just over 3/4’s of it, which she said was enough. She brought me into the x-ray room where there was a gurney to lay on, and then gave me a warm blanket.

The first pictures were taken every 2 minutes, so I just sat. Then they took them every 5 minutes apart, then 10 minutes apart, then 15, then 30 and finally 2 pictures 1 hour apart each. In between, I slept on the gurney, and my nurse brought me as many warm blankets as I wanted. She also brought me a cold wet face cloth for my forehead. When it was all over, I gave her a big hug and thanked her for being so kind. Then I took my medications asap!!!!

The tests showed that I have a moderate degree of low motility so my food sits in my stomach for a long period of time before moving on to the intestines. This explains why I always look bloated and pregnant. There are medications that can be taken, but I’ve asked my doctor if we can just hold off and wait on that for now. This is more of an inconvenience than anything right now, and I just don’t want any more drugs in my system than I absolutely need. If the problem becomes hugely bothersome, we’ll revisit it, but in the meantime, I’ll just try to watch what I eat, drink more water and try to exercise a bit more.

The Internal Pelvic pain is because I have had a number of pelvic surgeries over the years, so there is a lot of internal scar tissue left over that has attached itself to things like my bladder and bowel, etc. There are occasions when I move a certain way, and those adhesions stretch very painfully – it feels like velcro being ripped apart except it’s my body doing the ripping. It takes my breath away sometimes, it’s so painful, but it only lasts for a minute or two, then it’s gone.

Which leads to Hypothyroidism. For a long time, I assumed that Chronic Fatigue Syndrome was the only reason for my constant exhaustion, as my Thyroid numbers always came back normal on blood tests done every three months. One day though, my thyroid went rogue and those numbers were crazy. I had been especially tired…like dragging my ass tired, needed toothpicks to keep my eyes open tired

DraggingMyButt

Oohhh, that is NOT a good look on me!!! My doctor put me on meds and I could feel a difference in a very short period of time. On my next 3 month course of blood work, everything was back to normal, so now I take Synthroid on a daily basis for the rest of my life, to ensure I have a properly working system. So glad that was an easy fix!!

So there you have it. It’s a tough road to walk, I have to be honest. I live with pain 24/7 and have for almost 30 years now. Suffice it to say that you have to be mighty strong to live like this, to get through the day-to-day of actually living in pain. I know some people who just couldn’t. They tried so, so hard, but in the end, their pain was too much for them, and they took their own lives.

I’m a huge advocate for assisted suicide for people who live with severe, intractable pain. We take better care of our pets when they are hurting than we do our humans, and I think that is just plain wrong. I believe every human has the right to choose to die with dignity and I’m glad our Government has come on board with this. I know it’s not perfect, but at least things have started and that’s the main thing.

One thing having all these conditions HAS done though is that it’s given me a platform to blog about them and to discuss them as a Patient Partner in my volunteer work. I live in Langford, BC Canada and I belong to an organization called Patient Voices Network. They help take the voice of the patient and partner us with Heath Care Organizations who need Patient Advocates for the work that they are doing. I’ve been involved in committee work, focus groups, conferences, quality assurance forums, seminars and more because of PVN. The educational experience I’ve received is on par to anything I attended in my working life and in fact, when I attend anything in their offices in Vancouver now, it’s like being greeted by family – I know everyone and they all know me, I’ve been there so often for meetings.

I currently sit on 4 different committees: I am a member of the PVN Oversight & Advisory Committee, I currently sit on the Clinical Resource Committee for the BC Emergency Physicians Network , and I accepted a role with the Laboratory Quality Council Committee. We are responsible for all Labs on Vancouver Island as well as all Medical Blood Collection Stations.

Most recently, I took on a new role as committee member on the Measurement System for Physician Quality Improvement- Surgical Group. I am surrounded by top surgeons in Cardiac Care, Orthopedics and Neurology, plus high-ranking members from the Ministry of Health, the BC Patient Safety & Quality Council and other Health Organizations – and then there’s me. The lone patient voice to represent the masses. It’s a huge responsibility and one I take very seriously. I’ve already spoken out to let them know that while they see quality one way, I as a patient see it differently, and I expect my voice to be heard. It was empowering to have them tell me that I am the whole reason the others are there, because it’s all about the patient in the end.

So all this adds up to some pretty amazing experiences for me because of the pretty extraordinary pain that I live with on a daily basis. I have been truly blessed in my life, and I’m fortunate to be able to share it with you, my Dear Readers. Thank you for taking this journey with me. I hope to bring you more articles this year about Chronic Pain, Chronic Fatigue, Fibromyalgia and other Invisible Illnesses. And remember…

There is always hope

Chronic Pain & Post Holiday Blues

blog-holiday-blues

Do you find yourself feeling more pain after the holidays are over? More physical pain seems natural because of all the running around that we do with Christmas and New Years and the extra work that happens to make the holidays special. What about the post holiday blues? Do you find yourself feeling more mental pain when the holidays are over? More depression, or more Seasonal Sadness? How do you manage that and where is it coming from?

Some of it comes from the Holidays themselves. Often, we project what we want them to look like instead of accepting the reality of what they actually are for us. We want the perfect family around the perfect tree with perfect presents and everyone getting along in perfect harmony. What happens instead is the stress of buying, decorating, cooking and cleaning all while appeasing children, spouse and family members who may or may not be speaking to each other on the big day. No wonder you’re left with a huge let down after the New Year rolls in.

Financial stress plays a huge role as well, once those credit card bills start showing up in January. Even if you swore you wouldn’t have a credit card Christmas or Hanukkah, chances are you’re still looking at some expenses that you weren’t expecting, and now you need to do some budget adjusting. That’s enough to make anyone feel blue. And if you’re one of the many people who put your entire holiday shopping on your credit card, you’ll be feeling the hit even harder.

The weather also plays a huge part in how we feel in the New Year. Depending on where you live, you could be seeing sunshine and cold temperatures, mild temperatures and rain, or bitterly cold and snow, or any combination in between. The days are short and darkness prevails. Seasonal Affectiveness Disorder is a real condition that deeply alters the lives of more people than we realize. Getting out into the natural sunlight is the best remedy, but the alternate is to use a special lamp to get the light you need to function properly during the winter months.

How else can you combat these Post Holiday Blues? Here is a list of suggestions that might help:

Limit alcohol – Now that the holidays are over, start to limit your alcohol intake, and try not to keep it readily available around your house. Drink lots of water to flush your system and get back to good nutrition.

Get plenty of sleep – Try to go to bed at a specific time each night. Being well-rested can improve your mood and help you feel ready to take on the day.

Exercise regularly – Plug in your headphones and pop out for a walk around the block a couple of times a day. A quick 10-minute walk will get your heart rate up and release mood-boosting endorphins.

Learn to say “no” – Overscheduling and not making time for yourself can lead to emotional breakdowns. Learn how to say “no,” and stay firm on your decision.

Reflect on the Special Moments – 

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Grab a hot tea or hot chocolate, sit by the fireplace, and reflect on what you loved about this holiday season.

  • What was the best conversation you had?
  • What was the most thoughtful gift you received?
  • What was the funniest thing that happened?
  • What was one disaster that turned into a blessing or a great memory?

Try Something New – New Year, new hobbies! Make up your mind to try something new this year. Take a class, return to an old hobby, or pick up a new one.

Make a Budget – No one likes to dwell on financial stuff, but vow to make a budget this year and then stick to it. You’ll be amazed at how much stress relief this can offer you when you see exactly where you money is going and how much you can actually save every single month. Buy software for your computer to help you, download an app or get a book to make it easier.

Volunteer –  If you can spare a bit of time each week or each month, consider doing some volunteer work in an area that interests you the most. From working with kids, seniors, or animals to helping with community arts and theatre, health organizations or your local Downtown Business Association, there are so many places that can use your help. Even just a couple of hours a month makes a difference when we all pitch in together.

Give Blood – Another way to help others, if you are physically able to donate blood, please consider giving. There’s nothing like being a Lifesaver to make you feel good!

Keep a Gratitude Journal – Each day, write down three things you are grateful for.

Can you come up with your own suggestions for this list to make it your own? If and when you do, share your ideas with your friends and in the comment section below. One thing I do want to remind you of is that if the Post Holiday Blues tend to linger on for longer than a month, you may want to speak to your doctor. You could be experiencing something more than just “Post Holiday Blues” and require proper medical care. Don’t ever be afraid to ask for help if you feel dark thoughts or deep depression. There is help available and absolutely NO shame in asking for it. I live with Bipolar Disorder and have to be very careful during and after the holidays that my mania isn’t triggered because I would go on shopping binges.

Remember…

There is always hope

 

Fifty Christmas Quotes

In the Spirit of the Season, here are 50 Christmas quotes to help bring good cheer to your heart during the holidays. Thanks to the website Daring To Live Fully for the list.

1. “I sometimes think we expect too much of Christmas Day. We try to crowd into it the long arrears of kindliness and humanity of the whole year. As for me, I like to take my Christmas a little at a time, all through the year. And thus I drift along into the holidays – let them overtake me unexpectedly – waking up some fine morning and suddenly saying to myself: ‘Why, this is Christmas Day!’”

~ David Grayson

2. “It’s beginning to look a lot like Christmas;
Soon the bells will start,
And the thing that will make them ring
Is the carol that you sing
Right within your heart.”

~ Meredith Willson, “It’s Beginning To Look A Lot Like Christmas”

3. “Christmas gift suggestions: to your enemy, forgiveness. To an opponent, tolerance. To a friend, your heart. To a customer, service. To all, charity. To every child, a good example. To yourself, respect.”

~ Oren Arnold

4.Christmas quotes

5. “Gifts of time and love are surely the basic ingredients of a truly merry Christmas.”

~ Peg Bracken

6. “Instead of being a time of unusual behavior, Christmas is perhaps the only time in the year when people can obey their natural impulses and express their true sentiments without feeling self-conscious and, perhaps, foolish. Christmas, in short, is about the only chance a man has to be himself.”

~ Francis C. Farley

7. “It is Christmas in the heart that puts Christmas in the air.”

~ W.T. Ellis

8. “Christmas waves a magic wand over this world, and behold, everything is softer and more beautiful.”

~ Norman Vincent Peale

9. “Christmas now surrounds us,
Happiness is everywhere
Our hands are busy with many tasks
As carols fill the air.”

~ Shirley Sallay

10. “Each sight, each sound of Christmas
And fragrances sublime
Make hearts and faces happy
This glorious Christmastime.”

~ Carice Williams

11. “Blessed is the season which engages the whole world in a conspiracy of love!”

~ Hamilton Wright Mabie

12. “Christmas is not as much about opening our presents as opening our hearts.”

~ Janice Maeditere

13. “Love is what’s in the room with you at Christmas if you stop opening presents and listen.”

~ Author unknown, attributed to a 7-year-old named Bobby

14. “I wish we could put up some of the Christmas spirit in jars and open a jar of it every month.”

~ Harlan Miller

15. “Christmas is the season of joy, of holiday greetings exchanged, of gift-giving, and of families united.”

~ Norman Vincent Peale

16. “Christmas is most truly Christmas when we celebrate it by giving the light of love to those who need it most.”

~ Ruth Carter Stapleton

17. “Good news from heaven the angels bring,
Glad tidings to the earth they sing:
To us this day a child is given,
To crown us with the joy of heaven.”

~ Martin Luther

18. “The best of all gifts around any Christmas tree: the presence of a happy family all wrapped up in each other.”

~ Burton Hillis

19. “Probably the reason we all go so haywire at Christmas time with the endless unrestrained and often silly buying of gifts is that we don’t quite know how to put our love into words.”

~ Harlan Miller

20. “For centuries men have kept an appointment with Christmas. Christmas means fellowship, feasting, giving and receiving, a time of good cheer, home.”

~ W. J. Tucker

21. “Christmas is not just a time for festivity and merry making. It is more than that. It is a time for the contemplation of eternal things. The Christmas spirit is a spirit of giving and forgiving.”

~ J. C. Penney

22. “I heard the bells on Christmas Day
Their old, familiar carols play,
And wild and sweet
The words repeat
Of peace on earth, good-will to men!”

~ Henry Wadsworth Longfellow

23. “I love the Christmas-tide, and yet,
I notice this, each year I live;
I always like the gifts I get,
But how I love the gifts I give!”

~ Carolyn Wells

24. “Mankind is a great, an immense family. This is proved by what we feel in our hearts at Christmas.”

~ Pope John XXIII

25. “Let us have music for Christmas…
Sound the trumpet of joy and rebirth;
Let each of us try, with a song in our hearts,
To bring peace to men on earth.”

~ Mildred L. Jarrell

26. “Christmas is not a time or a season but a state of mind. To cherish peace and good will, to be plenteous in mercy, is to have the real spirit of Christmas.”

~ Calvin Coolidge

27. “I don’t think Christmas is necessarily about things. It’s about being good to one another, it’s about the Christian ethic, it’s about kindness.”

~ Carrie Fisher

28. “What is Christmas? It is tenderness for the past, courage for the present, hope for the future. It is a fervent wish that every cup may overflow with blessings rich and eternal, and that every path may lead to peace.”

~ Agnes M. Pharo

29. “May Christmas lend a special charm
To all you chance to do.
And may the season light your way
To hopes and dreams anew.”

~ Garnett Ann Schultz, “My Christmas Wish”

30. “I’m dreaming of a white Christmas,
Just like the ones I used to know,
Where the tree tops glisten
And children listen
To hear sleigh bells in the snow.”

~ Irving Berlin

31. “I will honor Christmas in my heart, and try to keep it all the year.”

~ Charles Dickens, Ebeneezer Scrooge, A Christmas Carol

32. “And the Grinch, with his Grinch-feet ice cold in the snow, stood puzzling and puzzling, how could it be so? It came without ribbons. It came without tags. It came without packages, boxes or bags. And he puzzled and puzzled ’till his puzzler was sore. Then the Grinch thought of something he hadn’t before. What if Christmas, he thought, doesn’t come from a store. What if Christmas, perhaps, means a little bit more.”

~ Dr Seuss

33. “The merry family gatherings–
The old, the very young;
The strangely lovely way they
Harmonize in carols sung.

For Christmas is tradition time–
Traditions that recall
The precious memories down the years,
The sameness of them all.”

~ Helen Lowrie Marshall

34. “Christmas is forever, not for just one day,
for loving, sharing, giving, are not to put away
like bells and lights and tinsel, in some box upon a shelf.
The good you do for others is good you do yourself.”

~ Norman Wesley Brooks, “Let Every Day Be Christmas”

35. “This time of year means being kind
to everyone we meet,
To share a smile with strangers
we may pass along the street.”

~ Betty Black

36. “Until one feels the spirit of Christmas, there is no Christmas. All else is outward display–so much tinsel and decorations. For it isn’t the holly, it isn’t the snow. It isn’t the tree not the firelight’s glow. It’s the warmth that comes to the hearts of men when the Christmas spirit returns again.”

~ Unknown

37. “There is a Christmas song upon the air,
There is a joy innate within the heart;
An inner sense of peace, a holy light
Illumines life and sets these days apart.”

~ Edna Greene Hines

38. “I am not alone at all, I thought. I was never alone at all. And that, of course, is the message of Christmas. We are never alone. Not when the night is darkest, the wind coldest, the world seemingly most indifferent. For this is still the time God chooses.”

~ Taylor Caldwell

39. “Christmas in Bethlehem. The ancient dream: a cold, clear night made brilliant by a glorious star, the smell of incense, shepherds and wise men falling to their knees in adoration of the sweet baby, the incarnation of perfect love.”

~ Lucinda Franks

40. “Are you willing to believe that love is the strongest thing in the world – stronger than hate, stronger than evil, stronger than death – and that the blessed life which began in Bethlehem nineteen hundred years ago is the image and brightness of the Eternal Love? Then you can keep Christmas.”

~ Henry Van Dyke

41. “Ask your children two questions this Christmas. First: What do you want to give to others for Christmas? Second: What do you want for Christmas? The first fosters generosity of heart and an outward focus. The second can breed selfishness if not tempered by the first.”

~ Author Unknown

42. “Bless us Lord, this Christmas, with quietness of mind; Teach us to be patient and always to be kind.”

~ Helen Steiner Rice

43. “Christmas! The very word brings joy to our hearts. No matter how we may dread the rush, the long Christmas lists for gifts and cards to be bought and given–when Christmas Day comes there is still the same warm feeling we had as children, the same warmth that enfolds our hearts and our homes.”

~ Joan Winmill Brown

44. “Christmas – that magic blanket that wraps itself about us, that something so intangible that it is like a fragrance. It may weave a spell of nostalgia. Christmas may be a day of feasting, or of prayer, but always it will be a day of remembrance – a day in which we think of everything we have ever loved.”

~ Augusta E. Rundel

45. “Christmas day is a day of joy and charity. May God make you very rich in both.”

~ Phillips Brooks

46.

Christmas quotes

47. “Christmas is doing a little something extra for someone.”

~ Charles Schulz

48. “Christmas, my child, is love in action.”

~ Dale Evans

49. “Off to one side sits a group of shepherds. They sit silently on the floor, perhaps perplexed, perhaps in awe, no doubt in amazement. Their night watch had been interrupted by an explosion of light from heaven and a symphony of angels. God goes to those who have time to hear him–and so on this cloudless night he went to simple shepherds.”

~ Max Lucado

50. “Want to keep Christ in Christmas? Feed the hungry, clothe the naked, forgive the guilty, welcome the unwanted, care for the ill, love your enemies, and do unto others as you would have done unto you.”

~ Steve Maraboli

 

There is always hope