It happened out of nowhere. One minute I’m watching Supernatural on tv, my furbaby Samantha on my lap, relatively pain-light thanks to pain meds, the next minute tears are rolling down my face. No particular reason. I didn’t see a Folgers© commercial or have Sam claw me in a sensitive area. I just started crying. And couldn’t stop. My breath hitching as I tried to keep quiet and not let Mom hear. I hate for her to hear me and worry. The more I tried to hold it in, the harder it became. I started to have trouble catching my breath, could feel the signs of a panic attack beginning. My heart raced, I was sweating, and had chills. Dizziness and nausea came next. I tried breathing exercises to no avail. Samantha was purring and kneading on me, which usually helps. But I had waited too long and gotten too worked up. I got up and made my way to the bedroom for anti-anxiety meds. I took one with a big glass of water. I took a couple deep, cleansing breaths. Slowed my breathing. Eventually stopped crying and began to feel better. I scooped up Sam and sat back down in my chair. After a while, I began to doze and fell asleep to an encore episode of Supernatural which always eases my mind. My last conscious thought was Sam purring and wondering how much worse this panic episode would have been had I also seen a Hallmark© or Phone company commercial. I’m afraid I’m turning into a emo pile of mush. Hopefully, this too shall pass. In the meantime, carry on and always keep fighting!

Some days are better than others. I don’t mean a little better, but drastically better. Just like some days are worse than others. Much worse. Such is life with chronic pain. I don’t have good days as opposed to bad days anymore. I have a variety of low pain, extreme pain, high stress, low anxiety, panic filled, relatively bearable, can’t take it anymore days. Or hours. Or episodes. Time is broken down differently. I can’t foretell an entire day, so I break it down into small increments. I got out of bed. Success. I attempted to shower. Couldn’t do it. Will try again tomorrow. I got dressed for appointment with psychologist. Took my pills. Hit with wave of extreme exhaustion. Couldn’t hold my eyes open. Went back to bed. I guess 4 hours sleep last night didn’t cut it. Slept for an hour and pain woke me up. Got into chair with heating pad for lower back and ice for hip. Tried to eat. No appetite. Got frustrated thinking of all I had to do and couldn’t. Started crying. Exacerbated migraine. Took more migraine meds. Couldn’t stop crying. Took more anxiety meds. It’s now 9:00 am. Appointment is at 2:00 pm, 20 minutes away by interstate. Will the side effects let up by the time I have to leave?! Will I be able to wait until I get back home to take more meds. What if I get there and can’t drive home?! Dizzy and uncoordinated from meds. Can I drive?! What if I get pulled over?! Will there be a “missed appointment” fee?! Will Social Security get involved if I miss another appointment regardless of reason?! Depression and self-doubt. Guilt and self-pity. Fear. Why can’t I do simple things anymore?! Why does every part of my body hurt?! Why doesn’t the medication work?! Will I live the rest of my life like this?! Can I?! Do I want to?! Why is this happening to me?! My emotions are all over the place. My body hurts. My brain hurts. I’m physically and emotionally drained. I try so hard to stay positive. To believe that things will improve. I know this moment will pass. I’ve been through this so many times before. Deep breaths. In and out. Calming breaths. I can do this. I am stronger than this. I can beat this. I WILL beat this. Just not today. I’ll try again tomorrow. Better days ahead. 

By Kerrie Smyres – January 30, 2012
Pure pain best describes the migraines I’ve had this week. My entire head, including the roof of my mouth, throbs in time with my heartbeat. I hear blood whooshing in my ears.

They demand my attention for hours until, if I’m fortunate, two Midrin let me sleep. When I awake my head is usually still throbbing.

Those who have never had a migraine tend to think of it as a raging headache. While sympathetic folks may understand that the pain is awful, even they don’t realize that a migraine is not only a headache. While it is certainly a major aspect, pain is one of many symptoms of migraine. Personally, pain was a primary concern until I started taking indomethacin last June. Nausea, dizziness and fatigue were often present, but were overshadowed by the pounding. Now, indomethacin generally controls the pain well enough that I’ve been able to see just how debilitating the other symptoms are.

This recent bout with high pain levels has me thinking about how misunderstood migraine is by the general public and even by migraineurs and health care professionals. The pain is a big deal, but it is only a small part of this neurological disorder that impacts the entire body. Migraine: The Complete Guide, a book published by the American Headache Society in 1994, has the most comprehensive list I’ve found. Though the book is old and no longer available this list is invaluable.

Visual Aura (before the pain begins)

a bright shape that spreads across the visual field of one eye and appears to block some or all of the vision; can be seen whether the eye is open or closed
flashes of light and color
wavy lines
geometric patterns
blurred vision
partial loss of sight
Sensory

numbness or tingling on the face or upper extremities
a sense that limbs are a distorted shape or size
heightened sensitivity to light, sound, and smells
smelling odors that aren’t actually present (like natural gas or something burning)
skin sensitivity and intolerance of being touched (allodynia)
Motor

partial paralysis
weakness or heaviness in the limbs on one side of the body
Cognitive

mental confusion
disorientation
inability to concentrate
difficulty finding words
problems understanding spoken or written language
Digestive

food cravings (particularly for carbohydrates, candy and chocolate)
stomach rumblings
constipation
Fluid disturbances

increased thirst
frequent urination
bloating/fluid retention
Mental/Personality

fatigue, lethargy
mood changes
irritability
high energy
irritability
depression
anxiety
nervousness
euphoria, feeling of intense well-being
Digestive

nausea
vomiting
intolerance of food odors
loss of appetite
diarrhea
constipation
Skin

paleness
cold, clammy hands and feet
facial swelling
goose bumps
bloodshot eyes
black circles around eyes
sweating
Respiratory

frequent yawning
sighing
hyperventilating
nasal congestion
runny nose
Circulatory

changes in blood chemistry
changes in blood pressure
blood vessel dilation
difficulty regulating temperature
changes in heart rhythms
Though quite detailed, this list is by no means complete. I can add dizziness and trembling. What about you? Which of these symptoms do you have? Do you have other symptoms not listed here?

NOTE FROM JUDI – Since I hear at least once or twice a week “it’s only a headache!” (Cue music from “Psycho!”) This article bears posting over and over again! Thanks Kerrie! Much love! 💕

January 12, 2016

Our caregivers are a valuable and necessary part of our health care team. Without their help with day-to-day needs, our lives would be so much more difficult. Have you ever wondered what would happen if you lost your caregiver? Does the thought fill you with panic? Do you know how you would cope? Recently, that very thought caught me unprepared.

My turn as caregiver

In October, my husband needed outpatient surgery. We were scheduled to check in at 5:30 am. Knowing I might be waiting for several hours, I stocked a backpack with water, snacks, and entertainment to occupy my time. At 9:30 am the surgeon informed me that he was in recovery and should be ready to go home in about 30 minutes.

Hours passed without any news. I started to worry that something might be seriously wrong. A nurse finally called me at 12:30 pm. She explained that my husband was having trouble waking up from the anesthesia and estimated he would be ready to leave within the hour. I was relieved to hear that he would be able to go home soon. Unfortunately, that was just the beginning.

Ninety minutes later, the surgeon reappeared asking me to follow him. I entered a tiny room where my husband was sitting up. A nurse was encouraging him to take deep breaths. She explained that although awake, he was still struggling to keep his oxygen levels high enough. She urged me to keep him awake and breathing deeply as he would not be released until his oxygen levels stayed high for at least 2 hours.

That is when things got scary.

He was upright, but certainly not alert. He kept falling asleep and resisted my attempts to wake him up. I watched the monitor as his O2 level dropped lower and lower. I reported this to the nurse and she called the doctors to recommend admission overnight for supplemental O2 and monitoring. I knew he would not like that idea, but still agreed with her assessment. I was really scared for him.

A respiratory specialist was called in to evaluate him for admission. By the time she arrived, he was a lot more awake and talking. After a chest x-ray and exam she determined the problem was undiagnosed sleep apnea. He would need a sleep study in a few weeks, but otherwise he was okay. After 10½ hours, he was finally going home!

It’s easier being the patient.

Even in the middle of a bad migraine attack, I am still in control. Sitting on the sidelines, watching my husband struggle, and being unable to do anything about it was nerve-wracking. I felt so helpless. Instinctively I started breathing deeply as if my breath could somehow give him the oxygen he needed.

My mind wandered to that unthinkable outcome: “What if he dies?”

He is my rock, and quite practically, my caregiver when things get bad. The thought of living without him is difficult to imagine. In addition to the emotional loss (which would be unbelievably horrible), there are practical matters – things that he always does. I like to think that I am pretty independent, but the reality is that I depend on him a great deal. The transition to living alone would be difficult.

Just the thought of it is scary. Thoughts spun out of control…

Who would give me those precious injections when migraine spins out of control?
Who would drive me to the ER at 3:00 am when nothing else worked?
Who would fetch ice packs, a drink of water, or something to eat when the pain weakened me?
Would I be able to take care of our dog and cat alone?
How would I ever keep up on the house?

To everyone else, I appeared calm, self-assured, and in control of my emotions. I was his rock, steady and solid. My nightmarish thoughts never broke the surface. I locked them away and let my subconscious catastrophize at will. There wasn’t time to process that mess. I was needed in the real world.

Making a plan

A few days later, I gave myself permission to unpack the mental box where I had stuffed all that worry. Examining my thoughts and emotions, a realization emerged. The odds are good that I will someday be a widow. It probably won’t be for decades, but women do have a longer life span than men. It doesn’t hurt to think about how I will cope from time to time. This won’t be the last time I sit in a hospital, worried about him.

When he was fully recovered, we talked openly about the possibility of his death, my fears, and then created plan. We scheduled an appointment with our insurance agent to discuss changes to our life insurance. While nothing can ever replace him, we now have a plan to ensure there are funds available should I require hired help. We’ve never avoided discussions about death. We just never thought about migraine in that context. Thanks to my temporary panic, we were able to plan for that possibility. Should he ever get sick again, I will be much better prepared to deal with any outcome, including my own irrational thoughts.

If you haven’t planned for your medical needs in the event of your caregiver’s death, please think about it. Just having a plan can make the fear of his or her death a lot less scary.

NOTE FROM JUDI: Tammy hit on one of my biggest fears in this article. In my case, it’s my Mother. I pray daily for her continued good health as we take care of each other. As hard as it is to think about, we must have a realistic conversation and a plan for the future. Thanks Tammy for touching on a subject so near and dear to all of the chronic pain warriors in our lives. Continued good health and happiness to you both. 💕

I’m not a cruel person. I don’t wish harm or pain on anyone. I am empathetic and compassionate. I value health and happiness above all else. I want that for everyone. Myself included. In my case, the health part has hit a snag. I have Chronic Daily Migraine, chronic pain, and Fibromyalgia. Most mornings, after little or no sleep the night before, I struggle to get out of bed. Some mornings I’m successful,, others not so much. I take pills when I get up, more at lunchtime, midday, dinnertime, and before bed. Rough nights, I may need something overnight. These pills are my only option right now to allow me to function. Depending on your idea of functioning. Most days I can’t leave the house. If I must, you know, it’s doctor appointments for me or Mom or vet visit for my emotional support furbaby Samantha. Pharmacy and grocery store are my other fun outings. I have to plan a day in advance to try to leave the house. Depending on the time of day, my pain level, when I took pills, side effects, weather, and many other outside forces that impact my ability to drive or even walk. I’m in Pain Management and my doctor assures me even though we haven’t exhausted all options yet, even with treatment, I’ll still likely be dependent on pills to get through the days. I have many doubters. I know I do. “It can’t be that bad.” “It’s just a headache.” “I’m sure you could work if you really tried.” “Be stronger and fight harder.” I’m the nicest person you’ll meet. Like ever. But I want to knock these naysayers and deniers on their collective asses! If they could only see my daily struggle to act normal. To do normal activities. To BE normal! And these comments are from colleagues and “friends.” Now I’ve got the government and CDC getting involved and lumping me in with drugs abusers and addicts. Trying to take away my access to the legal, prescribed pills that are my only source of relief right now. I resent the implications that I am a poverty stricken, low class criminal. I am without a job and unfit to work due to my medical and emotional issues (the emotional comorbid to the medical). I have never committed a crime and have worked full-time since I was seventeen years old. I EARNED my benefits. I am relying on Medicare and Social Security to LIVE or at least get by. I’m sure it’s just a matter of time before they try to take that away too. BTW, I had to fight for almost five full years to be awarded those Benefits, none of which I’ve actually seen yet. I won my Disability appeal hearing in October and still have seen no monetary payments. So, in conclusion, for now, the fact that strangers (laymen, NOT doctors) are going to decide if I can keep taking my prescribed pain medications is beyond insulting. I wish they could all spend a day with me or better yet, take even a few steps in my shoes. (If I can bend down to put them on.)

Instead of complaining about the bad things in my life, it’s time to be grateful. I’m sitting here with my furbaby Samantha in the dark at 4:00am on a Sunday. It’s so quiet. The temperature is surprisingly warm for January in Virginia so the windows are opened partway. All I hear are birds chirping. Samantha lightly snoring in her window seat. Last Sunday I was stressed and anxious about Sam’s upcoming surgery. Looking at her now, you’d never know it happened. She’s back to her playful, always hungry, always entertaining self. This time last week, I was so worried about Mom and her health issues. She is upstairs sleeping basically soundly, with a little medicinal assistance. She has a bronchial infection. We can deal with that. I had thoughts of pneumonia and hospitals and who knows what. They’re both healing and doing well. The two most important presences in my life. Mom, who has always been my biggest supporter, best friend, shoulder to cry on, strength to lean on, my constant. Mom doesn’t let me get too dark and withdrawn. She forces me to see the good things and stay positive. And Samantha, my emotional support furbaby. We rescued each other when Sam was 10 weeks old, almost eight years ago. Sam purrs away my chronic migraines and distracts me from my chronic daily pain. She makes me laugh through the depression and anxiety of not being able to work and my neverending search for relief and hopefully a cure. Between them, they are a formidable pair. I am so lucky and grateful to have them in my life and can’t imagine life without them. I realize that not everybody has a support system like mine and that’s heartbreaking. Reach out to someone, start a conversation, join a group, seek professional help. Do whatever you must to assure yourself that you are NOT alone and that YOU matter! Have a beautiful day! #AlwaysKeepFighting

Another rough day. I took Samantha to her vet at 8:00am for preoperative bloodwork and an ECG. I didn’t go back with her this time, hoping she wouldn’t associate me with the needles. (I know, pet parents!) I dropped a very hissed off Samantha at home and then Mom had doctor appointments, errands to run, and a couple of quick stops to make. We left around 9:30, so I couldn’t take my normal pain meds. I hadn’t eaten and my pet migraine (let’s call him Luci) was screaming in my head. He also has gotten very good at knowing just where to stab me with his pitchfork. I made it through Mom’s first visit reasonably well. Walmart was next with a time limit before Mom’s next appointment, so of course there was only one checkout lane open. We made it in time and we’re seen on time. Doctor decided Mom needed tests so we went to schedule and actually got a time on Wednesday. Samantha’s surgery is on Wednesday and I have to drop her to at 8:00am. I typically like to stay busy during her surgery procedures, so I was glad we had several things planned. By the time we got back home, it was 3:30. I hadn’t eaten, drank much, or had any pain meds since 6:00am. Hat trick of migraine “what not to do.” Luci laughed as I stumbled into the house. Pain 10+, nausea, dizzy, disoriented. Got food put away. Made quick lunch, ate, drank, and took pills. Sat down and started to cry. Samantha sat with me, which made me more upset, knowing what was going on with her tomorrow. I didn’t want her to pick up on my stress, but hey, that’s what she does. She laid down under the blanket with me, warmed me up, and started to purr. I eventually calmed down, meds kicked in, purrs helped relieve anxiety. My psych from years ago had told me repeatedly that my biggest enemy was anticipatory anxiety. Worrying about things when I have no control over the outcome. I try to catch myself, but I still do it quite often. Instead of considering everything I had gotten done successfully that day, I stressed about the few things I didn’t do. And it was nothing urgent for sure. I was very concerned about the following day. I had a dentist appointment that I had already postponed once. I had to get there. The dentist is 30 minutes away by interstate, which makes me nervous to drive with pain and meds. I had to plan my timing of meds for the rest of the day and the following day. I had to play catch up for the pills and dosages that I missed today. Needless to say, Luci and I were up the entire night. We could’ve played cards, but he cheats. I’d call him on it, but I was already in enough pain. This morning, I had the coffee on at 3am. I felt hungover from lack of sleep, strange pill doses, and that damn Luci. I had the dentist appointment at 2:00pm and then was going to stop with Mom at Trader Joe’s. Well, I certainly didn’t expect snow, 20° temps, and Arctic winds. I don’t drive often or well on icy roads, so there went my stress level sky high. (Satan is laughing hysterically in the corner!) More tears (which are my go-to for anger, stress, anxiety, depression, and panic) and decisions to make. I didn’t want to disappoint Mom, I didn’t want to cancel on Dentist again, I was confused about what meds to take, how much, and when so I could safely drive. I gave I  to the tears and just said, “Screw it!” Another lost day. I stayed in bed again. Hopefully better luck tomorrow. I fell asleep to Luci’s laughter.