10 Things I’ve Learned About Chronic Pain

If you’ve read my blog before, you know that I live with Chronic Pain and Chronic Fatigue. My pain comes from Fibromyalgia, Osteoarthritis in all my major joints, Myofascial Pain, a condition called Trigeminal Neuralgia, Diabetes (and Neuropathy that comes from that), Pelvic Adhesions, a spinal condition called Forestier’s Disease, aka D.I.S.H. which stands for Diffuse Idiopathic Skeletal Hyperostosis, Gastroparesis and several other medical conditions.

The author showing various pictures of her face in pain

My many faces of pain

I’ve been living with Chronic pain for over 30 years now, from the time I was a teen, and I’ve learned a few things in those years. I’d like to share 10 of those things with you now.

1. THERE IS ALWAYS HOPE

No matter how long I’ve been in pain for, I’ve never given up hope that things are going to get better. Some days I have are pure agony. Some days are pure delight. I cling to the good days as a reminder that things can be better and often are. There is always hope.

2. A GOOD DOCTOR IS TO BE TREASURED

Doctors have a hard time treating patients with chronic pain because they haven’t been trained well. They’re trained to diagnose a problem and solve it, so chronic pain is frustrating for them as well. If you don’t have a sympathetic doctor who is doing everything they can for you, find another doctor. When you do find one, be honest with them. Share everything…your depression, your anger, your worries. A good doctor wants to help you, but if you can’t share with them, you’re not giving them the chance to do all they can.

3. SUPPORT GROUPS AREN’T RIGHT FOR EVERYONE

Some people thrive in a support group. Others tend to get tired of the constant back patting and “Oh my gawd, I’m so sorry” conversations. Some are in the middle. I think a support group can be a great thing, as long as it’s the right fit. You want a group where you can feel heard and valued while offering support to the others as well – not just a one-way street. I also think it’s important to not jump into every group you hear about. That just becomes confusing and almost like a competition, to see how much sympathy you can drum up. You have to be willing to give back and you can’t forge honest relationships with people when you’re in a dozen active groups in my opinion. Unless that’s all you do all day long. And if that’s the case, I feel sorry for you, because you’re obviously not getting something you truly need.

4. CHRONIC PAIN IS ALMOST IMPOSSIBLE TO EXPLAIN TO OTHERS

Despite having great tools like the Spoon Theory and the Battery Analogy to talk about how much energy it costs us to live with chronic pain, it’s almost impossible to get others to understand what it’s like to live with chronic pain day in and day out. Here’s the thing…THE PAIN NEVER GOES AWAY. I can’t make it any more clear than that. No matter what I’m doing, or not doing. I’m hurting. Sometimes I’m in agony, like when I get a Trigeminal Neuralgia Flare up. Try to imagine the last time you experienced brain freeze from eating/drinking something cold…do you remember that sensation? That agonizing pierce of pain in your brain?  Now try to imagine that same feeling but in your cheekbone…for 12 hours in a row. Can’t imagine it?? Go try and get brain freeze as a reminder. That’s what my TN flare-ups are like. They start in my cheekbone and spread to my sinus cavity and my eye, then down to my jaw, and to my esophagus. I get spasms in my throat and often I get chest pain as well. For 12 hours.

My Fibromyalgia pain feels like my limbs are in concrete…it’s a heavy throbbing sensation in my arms and legs that make them impossible to move. The Neuropathy I feel in my feet is like pins and needles that never go away. My back pain is so intolerable that I can’t sweep my floors for more than 5 minutes without my lower spine seizing up.

5. DID I MENTION, THE PAIN NEVER GOES AWAY.

Sometimes it lightens up a bit, maybe after I’ve had a rare good night’s sleep, but if I’ve done too much on a particular day, the next day will be agony. Every day is different, and I’ve learned that there is no rhyme or reason as to what might cause a flare and why some days are better than others. Even as I’m typing this, my hands and wrists are throbbing and I’m making more mistakes typing than I normally do. When I sleep, I have to make sure my fingers aren’t curled, or I’ll wake up and won’t be able to move them.

6. COMFORT ROUTINES FOR FLARE UP DAYS ARE LIFESAVERS

In order to combat chronic pain, you need to have an arsenal of weapons at your disposal. This can include medications, therapies like massage or chiropractic care, acupuncture, heat, cold, stretching, yoga, and other items that help you when your pain is flaring up. Warm fluffy blankets and socks, a TENS machine or massaging unit, a roll-on pain medication – whatever you find works for you is part of your comfort routine and it’s important that you use these items when needed before your pain becomes even worse.

Kitten resting in a fluffy blanket

7. PACING REALLY DOES WORK

One of the important things you learn when you have chronic pain is that you have a limited amount of energy and you have to pace yourself throughout the day/week, etc. in order to stay ahead of the pain. Pacing is critical in helping to prevent flare-ups or in helping to reduce the number of flare-ups you may experience. There comes a point when you may have to consider outside help for chores because you can’t do them all. Perhaps a teenage neighbour can help with cleaning or laundry or care in the garden. Maybe you decide to hire a cleaning service twice a month for a deep clean that you can’t get to. Whatever you need and whatever you decide, my best advice is to lose the guilt. It’s not your fault you have chronic pain. You do what you need to, in order to make your home a happy one again.

8. SLEEP IS A VERY GOOD THING

Most people with chronic pain struggle to get good sleep, just by the very nature of being in pain. Take the time to establish a good sleep routine and don’t be afraid to nap during the day if that’s what your body requires. Just sent a timer for no more than 90 minutes (one sleep cycle) and do it early enough that it won’t interfere with bedtime. If you need to ask your doctor about sleep medications, then ask. Don’t be afraid of them, but perhaps try the more natural solutions first, like melatonin. Your doctor can give you the best advice.

9. WE ARE ALL WARRIORS

Just by the mere fact you are reading this and identifying with it, you are a warrior. Living with chronic pain is no picnic my friend and those of us who do it struggle every single day of our lives. Some days are good, some days are bad and some days are too difficult to talk about. It takes a special kind of strength to manage chronic pain and life at the same time and I admire every single person out there who is doing it. You are a warrior.

10. I’VE FINALLY ACCEPTED MY BODY THE WAY IT IS

For all my bravado and positive spirit, it took me a long time to learn to love this pain-filled body of mine. When I was forced to leave my job at the top of my game in 2009 I was devastated. I didn’t think I’d ever be useful to anyone again and I sank into a deep depression over how my body had let me down. It took several years before I was able to accept that this truly was my “new normal” and that returning to work wasn’t going to happen for me. When I found myself in a place where my health had improved somewhat, and I felt I had something to give back, I started volunteering for the Patient Voices Network and that really helped me get back on my feet. I am able to take part in committee work again, but at a pace that works for me and my health. I’m better able to accept my body and all it’s medical failings because I’ve found ways to contribute again.

I’ve also been able to get involved in hobbies again such as crafting and reading. I’m learning how to crochet and do needlepoint, all things I didn’t have time for when I was too busy working. So accepting my limitations also opened the door to new things for me to try, which has been a blessing. Perhaps you’re in the same place now, ready to accept that this is your new normal, and it’s an okay place to be. If you’re going to be in pain anyways, doesn’t it make sense to accept it and find ways to make the best of it.

CONCLUSION

I’ve been blessed with a positive nature that has helped to get me through a lot of difficult situations in my life. Chronic pain and my medical conditions are part of that. I believe in God and trust Jesus every day to be there for me. I have wonderful family and friends who have been so supportive of me. I belong to a great support group online that genuinely cares about me. More than anything though, and as my first point says,

There is always hope

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What It Memes To Have Chronic Pain

They say a picture is worth a thousand words, so today I present to you what it means to have Chronic Pain, in meme format:

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normal

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fibromula

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There is always hope

Communication Skills

Ah, communication. What a tricky thing you are.

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When you’re a person living with Chronic Pain (PwCP), you get asked the same question quite frequently.

How are you?

And my standard response has always been, “I’m fine”. But what a lie that is, when clearly, I’m not fine, or I’d be living a different life. If I was fine, I wouldn’t be on disability, using a cane or a walker everywhere I go. If I was fine, I wouldn’t be in constant pain from my Fibromaygia, or my D.I.S.H. or my osteoarthritis in every joint, or experiencing the issues that go along with my Bipolar Disorder or my Diabetes Type 2 or my Trigeminal Neuralgia.

If I was fine, I wouldn’t have insomnia, and be up 22 out of every 24 hours, even after taking valium to help me relax and sleep. If I was fine…I wouldn’t be blogging about being fine.

So why do I respond that way?

People Don’t Want To Hear The Truth

People don’t want to hear the truth. It makes them uncomfortable to know that someone is hurting when there is nothing they can do about it. It makes them feel weird, to hear about someone else’s pain. They get antsy, thinking they’re in for a long diatribe about medical procedures and doctor visits as if they’re at risk for catching something themselves. They get nervous thinking they’ll hear about your emotional state. And to be honest, a lot of the time, people don’t really care how your feeling. They ask you how you because they’re polite. It’s the right thing to do.

So, I’ve decided to stop telling people that I’m fine. I’ve decided to come up with a new response, and that new response is:

“Part of me is great, and part of me is not so great.”

I’ve decided this gives people an out. If they don’t want to know more, they can simply reply “well, I’m glad part of you is great” and carry on with their own lives. If they genuinely want to know more, they can ask about the parts that aren’t doing well. That way, I know that they’re sincere about how I truly am instead of just making polite conversation.

I hope this doesn’t sound like I’m being sarcastic, because I’m not. I’m genuinely trying to help people be more comfortable around People with Chronic Pain and to find a way to make it easier to ask and answer that question of “how are you”. It’s a tough one because there is no one good answer. The PwCP doesn’t know if you’re sincere and we don’t know how much information you truly want. The last thing we want to do is bore you with the latest in our medical news, and trust me…it’s truly devasting for us when we think you’re interested and then we find out you’re not.

Showing Real Interest

I doubt seriously there’s any malicious intent in your question either, but again, it comes down to being polite and being interested. I would rather give you a polite answer and have you ask for more information if you really want it, but that comes with its own complexities as well. Suppose I say “I’m fine” and you hear “oh, she’s fine, I guess everything must be okay” when what I really mean is “I’m fine, but not really and I wish you would ask me more about my day and how I’m feeling”.  It’s a communication breakdown because I don’t feel I can ask for what I want in case you’re not really interested, and you don’t feel like there’s necessarily anything else worth asking about.

If you ask me if I’m fine though and I tell you “actually, I’m not doing so great”, how would you respond? If you’re simply being polite, now you’re stuck. You either have to listen to what’s wrong or say something trite like “oh, I’m so sorry to hear that” and change the subject. Neither of us leaves the conversation satisfied, so my response, even if it’s the truth, isn’t the best one either.

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Two small words with so much meaning behind them.  That’s why you’ll be hearing a different response from me going forward. I’m going to try my best to stay away from those two words to make it easier on all of us and start answering with my new response:

“I’m doing as well as expected given the number of health issues I’m living with.” That leaves it open to the person to expand on the subject if they wish or to simply say “oh, that’s good” and move on.

I appreciate your thoughts and comments about this subject. And for those of you without chronic pain, I hope you’re doing fine – really!

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).

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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!

Pain In The Forecast

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

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

Chronic pain symptoms possibly affected by cold weather include:

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

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

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

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

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

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

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

 

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

 

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About the Heated Neck Pain Relief Pillow

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

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About the LANBRELLA

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

 

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About the Pajama Gram Robe

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

 

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About the Multi-Use Electric Blanket

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

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

There is always hope

Let’s Find Out If Fibromyalgia Is Real.

If you’ve been to my blog before, you know that I live with Fibromyalgia, Chronic Pain, Chronic Fatigue Syndrome and Invisible Illness. If this is your first visit, you now know something about me. I want it made very clear that YES…Fibromyalgia IS REAL.

Here are just some of the MANY symptoms that people with Fibro have reported experiencing:

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Walk a mile in my very painful shoes and you will know exactly how painful it is to live with Fibro. Every one of my muscles feels like it’s being dragged in concrete and every joint feels like it’s been twisted, then put into a mechanical vise and clamped as tightly as possible. I get shooting pains in parts of my body that I didn’t even know existed, for no reason at all. My arms burn and my hands and feet tingle or go numb.
The brain fog is awful…forgetting what you’re saying in the middle of a conversation is so embarrassing. I can’t remember what I ate for breakfast. I can’t remember if I ATE breakfast. I take medications that cause horrible side effects like weight gain and shaking hands and brain zaps…a sensation like an electrical shock that runs across your brain and where you can feel AND hear a literal buzz. I am constantly exhausted by the lack of sleep that comes with Fibro. It’s never refreshing and it’s never enough.
Yet, with all of this that I and my fellow Fibromites go through, there are still doctors who say “it’s all in your head” and “it doesn’t exist”. Well, tell me then…what DO I have wrong? All my tests come back negative for everything you tested me for…but I have all
18 of the 18 tender points that indicate Fibromyalgia is what I have.
Here are things I’ve had to say to friends and to DOCTORS who have questioned me about Fibro and Chronic Pain at various times over the last 10 years:

1. This is not “just in my head”. My pain is real.
2. I wish Fibro came with bruises, that way, you could see how much pain I’m feeling just so you could believe me.
3. It never goes away. My pain is always there, even when I’m acting “normal”. Don’t let my smile fool you, I am always in pain. Always.
4. There is no standard day or week or month with Fibromyalgia, It changes from hour to hour sometimes. Some days are better than others. Some days I think I want to die (this one always gets me in trouble).
5. Staying home instead of working or doing something fun isn’t all it’s cracked up to be.
6. You think I’m faking being sick, but really I’m faking being well.
7. The Brain Fog is terrifying. You try forgetting what you’re saying in the middle of a sentence and see how it makes you feel – you feel stupid and old and easy to dismiss. I lose things easily and am easily distracted. It’s so frustrating.
8. Day to day activities are exhausting. Heck, getting out of bed is exhausting.
9. Even if there were drugs that worked well, I am not a drug seeker and my history will show that. I have ONE Family Doctor and use ONE Pharmacy! I just want relief from the pain.
10. What part of “chronic condition” are you having a hard time understanding? I am not going to get better. I am going to live with this for the rest of my life. I hope to get better but it’s never going to go away. Don’t give me false hope.
11. I’m willing to try just about anything, but just because something worked for some Aunt’s friend’s cousin’s sister doesn’t mean it’s going to work for me. We’re all different and treatment isn’t a one size fits all option. But, whatever…I’m willing to listen.
12. Sometimes, I have to cancel my plans at the last minute. Sometimes, I cancel my plans with the same friend 2 or 3 times in a row. It’s not a reflection on the friend. It’s my body.
13. I wish more doctors understood Fibromyalgia and Chronic Pain and took us more seriously. Do you see me as a drug seeker too? What about when my x-rays show a body filled with arthritis? How do you deny my pain then? I just want you to help me find answers and relief.
14. Some days, even my hair hurts
15. There are days when the most I can accomplish is moving from the bed to the couch, and that’s okay. At least I did something.
16. On the days I feel good, I push myself too hard to get things done, even though I know I’m going to pay for it later. I hate being thought of as lazy. When my husband comes home, I can honestly say to him, “honey, today I cleaned up, did the dishes, vacuumed the house, did the laundry, baked cookies and scrubbed the bathroom”. And then I know I’ll be bed-bound for the rest of the week.
17. What you see on the outside doesn’t necessarily reflect how I feel on the inside.
18. My chronic fatigue is at times overwhelming and I can’t push past it. It’s exhausting to be this exhausted.
19. I wish a simple nap would help to relieve my pain, but it will not disappear if I lay down and have a rest.
20. I’m a real person with real pain. I didn’t ask for this but I’m being forced to live with it. I didn’t do anything to get this, but sometimes I feel like I’m being punished.

Research has now shown that Fibromyalgia is NOT an inflammatory condition like so many doctors first thought. It is technically NOT an autoimmune disease. What Fibro IS, is a NERVE disease where the brain misreads the pain signals going to the body through the spinal cord. This causes widespread pain throughout the body that can be felt in many different ways, and these include the various symptoms shown in the chart above.

Oh, it can be so frustrating having an Invisible Illness like Fibro. I truly do wish there were outward signs of this illness so that people could see that you’re ill. Something like bruises or a rash, or big F’s showing up on your body would be perfect (“oh look…she has F’s all over her…poor thing, she has Fibromyalgia…go get the door for her”). I truly wouldn’t mind that if it would help a doctor believe in what I’m going through, trust me.

But, as I always say…

there is always hope!

SoCS – A Day In My Life

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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. I wanted to share this question and then answer it:

What is a typical day like in your life?

From Pamela in Langford, BC Canada

It’s 2:30 in the morning and the house is quiet. I’m sitting in my recliner with Dorie, my cat on my lap, and the TV on the CatTV channel on YouTube. I went to bed at midnight but I only managed a couple of hours of sleep before I woke up, so here I am again, back on the computer in a quiet dark house. The only sound I hear is snoring – from both husband and cat, and I shake my head, not quite laughing as I listen to them both. I wish it was me, but once again, this means Wakefulness has won this battle and persists in keeping me away from Dreamland. I hurt all over, every muscle is aching and Painsomnia wins again.

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So starts a typical day in my life. I live with the Chronic Pain of Fibromyalgia, osteoarthritis and several other conditions and it’s often the painsomnia from these conditions the keeps me awake at night. At this point, I’ll probably just stay awake until Ray wakes up in the morning at 4:30. There’s no sense trying to sleep now because I’m too awake. So I do what I always do; I surf the Internet, I go on Facebook and I write; either on my blog or for one of the various articles I’ll be submitting to other publications. I often find it easiest to write in the middle of the night; my thoughts flow freely and things come to the surface that are easier to write about, whether they be memories or new subject matter.

At 4:30am the alarm in our bedroom goes off and Ray wakes up. I head to the kitchen and put the dishes away from last night and make a cup of coffee for myself before heading back to my recliner while he finishes showering. I stay here until he leaves for work, so I’m out of the way. He finishes his shower and comes to kiss me good morning, then makes his breakfast while I stay out of the way. I am busy updating my Facebook page and morning Devotionals. We exchange kisses and he heads out, and then I force myself up from the comfort of my recliner. I have some cereal or yogurt for breakfast and enjoy another cup of coffee before I get serious about doing some work. Much of my day is spent on the computer generally taking care of blogging, moderating a forum I belong to, checking my email and visiting Facebook. No real change from the wee hours of the night!

At 7am, I take my first dose of medications for the day. Every hour, I make myself get up and do some stretching. My body screams back in pain, but if I don’t do this my muscles will atrophy. I also try to get one major chore done around the house, whether that be sweeping the floors, scrubbing the bathroom, vacuuming, etc.

Lately, I’ve been dealing with back pain and spasms in my SI Joint on the left side and an area around the left facet joint in my lower back. The pain has lasted for 2 weeks and I’m off to see my Pain Specialist on the day of writing this (Oct. 22nd) as well as my family doctor, plus I’m meeting a friend for lunch. It’s a much busier day than usual. Normally I would eat lunch around noon, and then check the mail at 2pm – the highlight of my day!

While most days are spent at home, I do have doctor appointments on a fairly regular basis. I also have work that I do for my volunteer positions, including conference calls that happen in person and online. As part of my health journey, I go for regular massages as well, and there will probably be some physiotherapy appointments coming up too so my calendar will start getting busier. My rule of thumb is to keep an open day after every day that has something planned so I can rest, otherwise, I become too fatigued to manage.

At 3pm, my alarm goes off to take my afternoon medication.

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I often lay down for a nap at this point and can usually sleep for about an hour. When I wake up, I’ll read for a while, or watch something on Netflix, and if I have the energy, I’ll start prepping dinner. We do a lot of prepared food in our house as I don’t always have the energy to do a lot of cooking. M&M Food Stores get a lot of business from us! Tonight though it will be leftover Chinese food, so no worries about having to cook! I’ll get back on the computer until Ray is home, and then we’ll sit down for dinner and talk about our days.

The evening is quiet. Ray plays a game on his computer and I continue to work on blog posts and hang out on Facebook, etc. or read a book or magazine. Dorie, our cat curls up with me and it’s a comfortable place to be. I take my evening medications at 7pm and by 8:30pm, Ray is heading to bed. I’m tired, but I know I’m not ready to sleep, so I tuck him in with a goodnight kiss and head back to my recliner. I’ll do up the dinner dishes shortly and then spend the rest of the evening on the computer, chatting with friends, reading magazines, and unwinding. I take my final medications at 11pm and turn off the computer. Sometimes I read, and sometimes I just listen to relaxing music until midnight. That’s the end of the day for me. I crawl into bed, my body aching all over, and pray that sleep will come. I drift off, finally and start dreaming…

It’s 2:30 in the morning and the house is quiet. I’ve just woken up…and there will be no more sleep tonight.

There is always hope

 

 

Tired vs. Exhausted

I’m so tired, I’m repeating a post from the past!!!

Have you ever felt exhausted? So exhausted you could barely move?  The kind of exhausted that leaves you feeling almost helpless? Guess what…I have a new word for you!!!

Actually, I think there are many people in my life who this word could apply to…the warriors who struggle along every day despite the illnesses that try to hold them back. My friends and fellow Warriors…you are simply Quanked!!!!!!

Quanked

Taken from Grandiloquent Words:
Quanked
(KWANK’d)
Adjective:
-Overpowered by fatigue.
-To have the strength reduced or exhausted, as by labour or exertion; become fatigued; be sleepy. Origin uncertain Used in a sentence:
“After sprunting all weekend, then frooncing to get my chores done, I’m well quanked.”Quanked is a condition in which one’s energy and vitality have been consumed. One who is quanked has used up his or her bodily or mental resources, usually because of arduous or long-sustained effort. To feel quanked at the end of the day; quanked after a hard run; feeling rather quanked; quanked by a long vigil.-See forswunke
Now, in all seriousness, I think the word is an excellent one to describe how it feels to be exhausted when you live with an Invisible Illness. It’s beyond any type of tiredness you’ve ever felt before. It’s sleeping for 12 hours and waking up just as tired as you were before you fell asleep. It’s like climbing a mountain when all you did was go up one flight of stairs. When sleeping on the couch is easier than trying to get up to go to bed.
Now add in being in pain constantly and what do you get? You get you. You get me. You get people like us, who have been living in varying stages of agony for varying periods of time.  I’ve talked with several friends who live with Fibromyalgia, Chronic Pain and Chronic Fatigue plus various other Invisible Illnesses and they’ve described their fatigue and pain like this:
  • It’s like swimming through concrete while being on fire at the same time (this was mine).
  • It’s like constantly having a “pins and needles” sensation that never goes away
  • I feel like I’m being randomly stabbed by a crazed maniac, but that crazed maniac is inside my body and I can’t stop it.
  • There are parts of my body that are numb and parts of my body that are burning and other parts of my body are throbbing and it all happens at the same time.
  • My brain is foggy and I can’t remember things like I used to. I hurt everywhere all the time and I’m always tired, no matter how much sleep I get. I don’t like this me that I am anymore.
  • I feel like I’ve been in a war, but you can’t see my wounds
  • Do you remember when you were young and you could stay up for hours and hours at night and never feel old? Yeah, well I can’t do that anymore. I’m lucky if I can stay up past 7pm and I don’t even have kids. I’m too tired and achy and sore.

There are ways you can try to improve your sleep with Fibro and Chronic Pain and the key is consistency:

  1. Sleep in a quiet dark room with a slightly cooler temperature than normal. Wear a sleep mask if necessary.
  2. Power down the electronics (TV, computer, Smartphone, etc.)  one hour before bedtime. The light from your bedside clock is also enough to disrupt your sleep, so check and see if there is a dim light setting, or face the clock away from you at night.
  3. Set a regular bedtime and wake up time. Establishing a schedule can help the body recognize good sleep habits.
  4. Consider downloading and listening to “sleep music”. There are many recordings that are free, including delta wave music which works with your brainwaves to help lull you into a natural sleep. A “white noise” machine may do the trick for you. These can be found in almost any electronics store and come with various sounds and settings, designed to help your body relax and let go.
  5. Limit Alcohol before bed.  You know you’ve read this before but for good reason. Alcohol may make you “feel” tired but actually will wake you up more often.
  6. Eat a healthy snack 45 minutes before bed. This would be something with protein in it like half a turkey sandwich, a small bowl of whole-grain low-sugar cereal, milk or yogurt or a banana. Eating like this before bed helps stave off the “midnight munchies” where you wake up starving in the wee hours of the night.
  7. Get some exercise! Regular exercise like walking or swimming can help the body to rest well in the evening. Start slow and build up over time. Work with a personal trainer if possible who can help you set up a routine tailored to your specific needs and abilities.
  8. Check with your Doctor to ensure there are no other underlying health issues that could be causing your fatigue (i.e.: thyroid issues, anemia, etc.).
  9. Don’t just lay there – get up! If you haven’t been able to fall asleep within 20 minutes, get up and leave the bedroom. Read or do something that doesn’t involve your TV or computer/Smartphone until you feel sleepy and then try again. The bedroom should be for sleep and sex only. The longer you lay awake in bed for, the more used to being awake in bed your body becomes. You need to break that cycle so getting out of bed and moving to a different room is the smart choice.
  10. Medications should be the last resort but are available to help if needed. Talk to your doctor or pharmacist for information about over the counter medications to try first.

If you tend to be a worrier at night, with a million things running through your head, allow yourself 10 minutes of this. Set an alarm and let your thoughts go wild. At the end of those 10 minutes, it’s time to stop. It takes practice but it gives you the opportunity to get all those worries out without mulling them over for hours. This isn’t the time for solutions, just the time to acknowledge that they’re there. In the end, say something like “I’m glad I had this time to worry about everything, but now I’m going to sleep on them. I’ll deal with them in the morning”. It tells your brain you’ve acknowledged the worries, and you’ll do something about them later. And off to sleep you go.

Another way to sleep better at night is to be organized during the day. The less you leave to chance during the daytime, the less you need to stress at night. “Did I sign Johnny’s papers for camp?”  “Where did I put the chequebook?” “When is the next Book Club meeting?”  Whether you use your smartphone, an organizer or the calendar at home, by having a regular system for keeping track of appointments, meetings and paperwork, you’ll stress less knowing you have it all in one place and you’ll sleep better at night.

Sleeping better isn’t always about being in less pain. It’s about doing all the things you can to make your environment as sleep-conducive as possible which may result in less pain. Removing as much stress as possible from your sleeping area is one of the biggest and best things you can do, so try and think of all the things that will make your bedroom area the most comfortable it can be. The key is, whatever you do, do it with consistency. None of us wants to feel quanked.

Remember…there is always hope

Medication Frustration

It’s a frustrating thing when the medications you’ve come to rely on suddenly decide to stop working. Pain meds no longer manage your pain, and brain meds no longer manage your brain. It’s no fun to find yourself in this situation, but for People with Chronic Pain (PwCP), it happens all the time.

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There are only 3 medications that are specifically prescribed for Fibromyalgia: Lyrica, Savella and Cymbalta. Lyrica, in particular, is known for weight gain as a side effect and when I first started taking it, years back, I gained 30lbs in 2 months time. I’m a short girl (5’2″) but I have a large frame, so I didn’t want to gain anything…I’m already stocky. I told my doctor that I couldn’t handle being so heavy (I think I went up to 160lbs), so she took me off the Lyrica and put me on the Cymbalta instead. I lost some of the weight and for a long time, seemed stable at 140lbs which I was okay with. I was still working out at the time and had a muscular body thanks to my trainer and her torture sessions every week (hi Terrianne…love you!).

Fast forward 10 years and I’m still on the Cymbalta, but I don’t think it’s as effective as it used to be. The problem is, science hasn’t kept up and there is nothing newer to try. Even though I continue to take my daily doses on schedule, I find that I develop brain zaps in between and my Fibro pain seems to have increased over the years as well. Part of it might just be from ageing, and part might be from my Osteoarthritis getting worse as well. I’ve also noticed that since I had my right hip replaced and I developed this Haglund’s Deformity in my left foot, my legs are constantly achier than they’ve ever been. I’ve always put that down to walking with a different gait, but I wonder if that’s my Fibro flaring up as well.

The other medication that has been difficult to regulate is what I take for my Bipolar Disorder. I was on Seroquel for a couple of years with good success, until I started having auditory hallucinations. I would be hearing music where other people heard nothing. It took a long time before we determined it was my medication causing the problem, including a visit to a Psychiatrist to determine that I didn’t have Schizophrenia. Once we realized the Seroquel was the problem, we switched to a new drug called Abilify. That worked great for the first several months, providing me with energy that I hadn’t had before and a whole fresh outlook on life.

Unfortunately, it also brought some side effects like shaking hands and trembling tongue and brain zaps – those internal lightening-fast buzzes in the head. We cut the dosage in half and then in half again, but to lose the side effects meant to lose the benefits as well. I see my doctor again soon and I think we’re going to have to try something new. The problem is, everything new is in the same general category as what I’m currently taking, so not sure what type of success we’ll have.

Speaking of seeing my doctor, I have to say that my new doctor is lovely. Dr Penny Wilson is from Australia and is in Canada for a year at least (with the promise that if she decides to go back to Australia at the end of the year, my care will be taken over by another doctor in the practice so I won’t be left stranded). She prefers to be called Penny rather than Dr and she’s simply delightful to talk to. She’s matter of fact and down to earth, and genuinely wants to see me as healthy as possible, so on my last visit there, to get the results of blood work and to get a prescription refill on my opioid medication, she decided she wanted me to book another appointment asap for what she called a Complex Care Review. As she said, “if anyone is complex, it’s you”. How true!

Basically, this appointment will be a chance to sit down for 30 minutes to go through EVERYTHING that I’m experiencing healthwise so we can triage what’s important, what can wait, what Dr Winston, my Pain Doctor, is dealing with, and what needs to be sent off to other doctors. For instance, I’ve had ongoing pelvic pain, likely due to a build-up of scar tissue/adhesions from several previous abdominal surgeries. I do know that when I had each of my ovaries removed, there was scar tissue attaching my bladder to my bowel. When I move certain ways, it feels like my insides are ripping apart, like velcro being torn open and it’s crazy painful. This is something I haven’t dealt with yet, because there have been too many other things wrong with my body. Penny will likely refer me to either the Gynocologist or to a General Surgeon to have a laparoscopic procedure done to see if they can remove some of the adhesions so that pain can be eliminated. Yes, a surgical procedure will cause more adhesions, but if they can get rid of 90% and have only 10% more grow, then those are good odds for me.

It feels weird to be looking forward to a Dr appointment, but I think this will be one of the most beneficial ones I’ve had in ages. I’m also taking in all my medications, so we can do a review and see if there’s anything I can stop or any dosage changes I need to incorporate. Yes, Penny is very thorough and for that, I’m very grateful. I have a feeling that when the appointment on the 27th is over, I’ll no longer have medication frustrations. What an answer to prayer!!

there is always hope!

How Are You Doing?

Hi, how are you? 

How are you doing?

How are you feeling these days?

Oh boy…do you ever get those loaded questions? I do and as much as I appreciate that people care and want to know how I am, I also wonder if these are “polite” questions, or do these people genuinely want to know how I am. It’s so hard to know how to answer.

So, generally, I respond with, “I’m doing okay thanks”. 

But what if I told the truth? 

The truth is, I’m struggling right now. I’m struggling physically with pain and exhaustion and I’m struggling with my blogging and I’m struggling with feeling lonely and housebound, but I’m pretty sure no one really wants to hear about all that when they ask me how I’m doing so I don’t tell them. 

But I’m going to tell you.

I’m averaging about 2-3 hours of sleep a night right now. I manage about 45-60 minutes at a time and then I wake up. I feel like I’ve slept for hours, but I look at the clock and barely any time has passed at all. I’ve always struggled with insomnia and I’m going to be trying some new meditation music, but it’s frustrating to not be able to get decent rest. It doesn’t allow my body to heal, which contributes to my overall pain. As I type this, I can feel my hands and legs and feet throbbing with pain. It’s almost like a drumbeat – thump THUMP thump thump, thump THUMP thump thump, thump THUMP thump thump, over and over again. My legs muscles feel tight and almost crampy and my fingers and toes feel swollen. My back is tight and tense and I can also feel the tension in my jaw and neck. My vision is blurry and I can feel the spot just under my cheekbone where my Trigeminal Neuralgia flares up – it’s gently pulsing, almost like it’s teasing me.

Now, I don’t tell you this to ask for sympathy. It’s just stating the facts. The same as I’m struggling right now to come up with various subject matter to blog about. With two blogs on the go now, I’m working at how to monetize one of them, and keep this one for posting on. I’m taking some courses about how to make money blogging and I’ve signed up to review a couple of courses as well. In the midst of that, I’m also taking a general writing course, plus I’ve applied for a new volunteer position – another committee that I’d like to be a part of. I’ll be back to work on one of my current committee assignments soon, which I’ll write about, but it still leaves me struggling with core subjects to blog about. It’s not for a lack of writing prompts, that’s for sure. Generally, what happens is I get an idea in the wee hours of the morning and then I write like crazy and bang out a post in about 30 minutes. It happens when I write poetry too. It just comes to me, I don’t plan it. When I wrote Wistful Thinking, I literally had the idea and the concept and completed poem done in 10 minutes. 

The other issue is that I’m housebound for the most part. It’s because I don’t do enough to get out and about, because of pain and exhaustion (and because I’m busy blogging). Well, no more excuses for that. I just bought a new walker/rollator to get me out moving again. She’s a pretty silver/blue Xpresso and I’ve named her Bluebird:
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Isn’t she lovely!!  So much nicer than my old one, as there are no exposed cables, the basket is deeper, the seat is thicker and so is the backrest, and the wheels are designed to go over gravel and other rough surfaces. The handle area is large and smooth and she rolls beautifully, plus it’s still a one-handed close…I just pull up on the handle in the middle of the seat and voila! she folds sideways, so easy to transport when needed on the bus!!  Hopefully, this will be the incentive to get me out and about more often…there is a gorgeous lake just 15 minutes from my house with a perfect walking path around it and I’m making it my goal to get down there at least once a week.

I also plan on getting back in the pool, and Bluebird will be great for walking to the bus and back. I’ll be speaking with my new doctor in the next week about taking an Aqua Therapy course at our local Pool and Fitness Centre. It’s a specialized one-on-one program for People with Chronic Pain, working with a registered Kinesiologist to help with rehabilitation in the pool, so it’s easy on the joints and muscles. By getting my doctor’s approval, there’s a good chance I can have the costs paid by my Long Term Disability provider. I’m excited about it and even though I have to take a bus to get there, it’s only a 20-minute ride. I’m sure there’s parking available for Bluebird as I’m not the only one who takes these types of classes.

I’ve also been trying to be more physical at home, and not just sitting in my recliner all day (although it is rather molded to my butt shape). I’ve been doing wall push-ups and bicep curls and was trying to do squats as well, but those became too painful for my knees and ankles. I’m going to start doing planks to see if those work and maybe some gentle lunges with no bouncing. Everything hurts my joints so much, but I need to become more flexible. I think my Achilles Tendon is ultimately going to need surgery as it’s responded to nothing else we’ve tried – no physio, no stretching, no taping. I’m not sure what else is left, but I see Dr Winston soon, my Physiatrist and we’ll talk about options. It’s slowing me down and affecting how I walk and causing my left hip to have even more pain than necessary, which is going to increase the time before needing a hip replacement on that side as well. I’ve also developed some painful Neuropathy in the left foot, on the top and into the big toe, that might be related to my Type 2 Diabetes, so more to talk to my new doctor about. This just came on in the last few days, while on the motorcycle trip. 

Mentally, I’m worried because I think I’m going to have to come off the drug I take for my Bipolar Disorder and it’s the med that has given me all the energy I’ve had lately, Abilify. It’s causing me some major side effects; brain zaps, tongue trembling, handshaking, vision blurring and an uncomfortable amount of weight gain. I’m only 5’2″ tall, so any weight gain over 145lbs is too much and I’m up to 160lbs. It’s the brain zaps that are the worst though…I can actually feel them…they’re like an electric shock in the brain, but in high speed, and you can both feel them and hear them – a lightning bolt that goes right through the head from one side to the other. If I had to describe them based on something we physically have, I’d say it’s like one of those electronic fly killers that buzzes when it kills a fly…same sound, that bzz-zap!

Annoying!!!

There are good things happening in my life though. Ever since we bought our new motorcycle, I’ve been able to get out for more and longer rides with my husband Ray, which is a real treat for me. Our new bike is a 2007 Yamaha Venture and more of a cruiser than the sports bike we had before, a Kawasaki Concours.

The Venture is super comfortable for me and I’ve been able to go for longer rides each time we’ve been out, including a very recent Grand Adventure! Ray and I took the bike and went to Mt. Vernon, Washington to visit an online friend of mine named Maura so I could hang out with her and binge watch the second season of This Is Us, a tv show that I started watching on Netflix, but is no longer being carried there. Maura is a huge fan as well, so I spent 2 days with her watching the show while Ray went off exploring on the bike, then we hung out with her and her hubby Paul for dinner the first night (and with their daughter Anna – their son Matthew was out), and on the second night, we took them out for dinner at a local pub. On Saturday morning, Ray and I left at 5am to head for home, taking the I-5 freeway to the Blaine border crossing and then the Tsawwassen ferry home to get back to our cat Dorie at just after 9am.

Altogether, I’d say I spent 2 hours in the saddle but every second was great!! I know I can go for longer now and be comfortable. I can get on and off the bike easily, and it just feels good to ride. As an added bonus, I have a new leather jacket and gloves! Ray bought them for me on Saturday, August 25th here at a leather shop close to home. I really wanted pink, but decided this black jacket was too sexy to pass up! It has just enough detail on it to make it look sharp without being tacky. The leather is buttery soft with black stitching up the sides on the back, and on the back of the arms from the wrists to the elbows. Ray will have to put a new snap in at the wrists to make them tighter (I have short arms and tiny wrists) but it fits beautifully everywhere else and I’m delighted to have it. I also bought proper bike gloves – I got gauntlets, the kind that goes over the jacket sleeves to protect me from bees flying into my sleeves, etc.

I’m still keeping busy with my volunteer work and have applied to sit on a new committee for Island Health’s Laboratory Services Quality Council. I access Lab Services every three months for blood work, so thought it might be fitting to be a part of their quality control council. I’m also waiting to hear back on a couple of other opportunities I had my name in for so it could be an exciting fall!

So there you have it…a bit more about me and what’s been going on in my life and how I’ve been truthfully feeling.  The next time someone asks you “how are you doing”, how will you answer them? With a short predictable answer? Or will you tell the truth? 

There is always hope