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My Hopeful Brain

By Roni Jones

Even Warriors Need To Rest

“As important as it is to have a plan for doing work, it is perhaps more important to have a plan for rest, relaxation, self-care, and sleep.”
― Akiroq Brost 

I recently took a week-long break from Facebook, no I didn’t have withdrawal symptoms, or cravings to get back on before my week was up! Instead I spent those hours and yes, time spent on social media, can easily add up to hours a day, reading, playing with my new kitty Sugar, having actual conversations with my husband, Rick and generally just letting myself breathe and relax. The last couple of weeks before this had been very stressful for our family. Rick’s oldest son, age 39, died unexpected and under suspicious circumstance. Though I wasn’t close to Kyle, he was Rick’s son and Rick needed my full support. If you are a spoonie, you can see how this situation quickly depleted my daily allotment of spoons. A week of self-care was sorely needed and did me a world of good. 

Now I want to talk about another reason we Migraine warriors need rest. For a very long time I was under the assumption that, letting people know you took a cave day, was the same as admitting defeat. Migraine Warriors are tough, they don’t let a pesky Migraine keep them from living their life, they power through, grocery shopping, cleaning, cooking and keep up with their exercise routine. When I read accounts like these, I thought to myself, what am I doing wrong? During a Migraine attack I don’t even want to see sunlight, my head is staying on my pillow with an ice pack and the only exercise I’ll be doing is the trips to the bathroom to vomit or deal with diarrhea! Believe it our not there is stigma placed on us by our peers, though they may not realize that they are doing so. 

Recently I had an epiphany after reading two blog posts about rest, it completely changed my mindset on the need to rest and still be a Migraine warrior. First rest isn’t a naughty four letter word, it is a necessity for our bodies that battle pain 24/7. I have days that fatigue literally drains me and I feel like I’m walking in wet sand. Living with Migraine and chronic pain can drain your internal battery pretty darn fast. So it stands to reason that one will have to recharge, this is where rest comes in. Grab a cup of tea and a good book, or take a nap. Your body will tell you when it is fulling charged. There is no guilt here, would you feel guilty if you were tired due to cancer treatment? NO you would not! You are still very much a warrior, just a tried one and why not? Fighting against Migraine everyday is very hard work, both physically and mentally! 

If a Migraine attack is severe enough for you to need a dark quiet space use your cave. Again there is no guilt here, your body and brain needs rest and treatment. It is better to try to nip that Migraine attack in the bud, rather than pushing through it and avoiding the  possibility of a longer Migraine cycle. Don’t let the fear of stigma keep you from speaking about your Migraine, you don’t have to go into detail. Yes, speak you Migraine, the more advocacy efforts the less stigma. Shame on anyone in the Migraine community who would make a fellow Migraineur, feeling less of a warrior, if they need a rest, self-care or cave day. We should strive to thrive and by being a supportive and encouraging Migraine warrior, you are helping a fellow Migraine warrior thrive.

I came across this description of a Woman Warrior, while looking for the best definition of warrior. It really spoke to me!

“Women warriors possess a determined spirit, a “can do” attitude that drives their actions towards their goals. When faced with limitations, disappointment or opposition, a warrior woman only gets more determined to make what she envisions happen. She won’t take “no” for an answer and will find a way barrel through obstacles until that “no” becomes a “yes!”

I know many Women Warriors who fit this description when it comes to their Migraine treatment. They are not willing to sit back and do nothing, because one, two, three or six, treatments didn’t work. They keep pushing, advocating for themselves to try more treatments, whether they be infusion or oral. They will not hear “no” or there is nothing more we can do. No way! They will keep looking, researching, never giving up. That is a Migraine warrior! 

Live with hope,
Roni

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Sugar in Dive mode! lol 5 months old & we love her to pieces! 

 

 

**Dedicated to:  Angie Glaser who taught me about the concept of rest and to never be ashamed of it. You inspire me Angie with your strength, openness to speak your mind, loyalty to your friends and willingness to speak for the migraine community! 

Top-Secret

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There’s something about the words top-secret stamped across a file, that invokes a visceral response, we want to know what is in the file. We can’t help ourselves, it’s a wholly human response. Sort of like kittens and their unlimited curiosity, something that I have had a lot of experience with the last couple of months! So why are we so secretive about our pain?

For many years life with chronic migraine and fibromyalgia for me meant, living in isolation, fear of the unknown, symptoms that were frightening and I didn’t understand, darkness, unrelenting pain, stigma of having both the diseases I was now living with being so misunderstood. Sadly it wasn’t family or friends who didn’t understand my chronic illnesses it was my doctor. At that time I wasn’t as knowledgeable about my chronic illnesses as I am now. My doctor made me feel guilty about my pain, accusing me of being a drug seeker, when my husband ask about seeing a headache specialist out-of-state, he told us that wasn’t necessary as my condition didn’t warrant it. Through a series of events that I have blogged about before, I bid that doctor adios and indeed saw the headache specialist out-of-state. Where I finally began to become more knowledgeable about my chronic illness and that was empowering!

Another thing that I have learned that can be empowering is to share your pain with others who are on the same journey you are. For far too long we have hidden our pain because we were afraid of the stigma attached to migraine and other chronic pain conditions. I think that the time for hiding is over no more putting our pain behind a top-secret stamp and filing it away. I think that the Elle magazine #migrainepose furor showed that many migraineurs are more than willing to be heard. A big part of advocating for yourself and others is being open about your pain. How can we talk about caring for the chronic pain patient and the opioid crisis if we never share our own experiences with pain?

The journey with chronic pain is a daily struggle, but I meet each day with hope, that today will not be a high pain day, with thankfulness, for my supportive husband and migraine warrior sister’s, with knowledge, if it is a high pain day I have the skills to deal with it and with empowerment, hoping that the pain I share can help someone else that day. The top-secret stamp has been thrown in the trash!

 

Live with hope,

Roni

 

The Monster Within

“When you have an invisible disease, your sickness isn’t your biggest problem. What you end up battling more than anything else, every single day, is other people.”
Heidi Cullinan 

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There is a Monster that lives inside of me, it cannot be seen, but can be felt. This Monster makes his presence known on his time schedule. He loves to come out when it rains, storms, snows or the barometric pressure changes. He can be sneaky and use other people and places as his emissary, too much perfume or strong smells, to let him in.

Make plans to go out with friends or family and the Monster is sure to show up to ruin those. Instead of having a good time, you find yourself lying in a dark room, curled in a fetal position, ice packs on your raging head, trying so very hard not to vomit. Can’t someone make the room stop spinning? My stomach is cramping so badly, diarrhea is not far away, the heating pad becomes my friend. Food does not. The Monster just laughs and laughs, for he is in charge right now. Sometimes the Monster stays in charge for days on end, they days turn into weeks, then into months and years. Before you realize it the Monster has stolen two years of your life. 

Life becomes almost unbearable, depression and anxiety become best friends with the Monster. They work together at making sure you don’t have any strength to fight back against the Monster. I begin to have nightmares about pain, awaking crying, screaming, punching and kicking. The Monster has taken over my waking and sleeping moments, there seems to be no escape.

Well meaning family and friends, make suggestions about cures that worked for their cousins, aunt by marriage twice removed, daughter. These just make me tired of having to explain there is no cure for the Monster.

When I think that I’m at the end of my rope and just can’t do this anymore, that I’m losing hope. One of my sweet friends will contact me, sending messages of hope, inspiration, support and love! These acts of kindness, caring and sharing, will take the sting out of the Monster. And renew my hope again. If you hadn’t already guessed the Monster has a name, Migraine. I will never stop fighting against it, nor will I ever let it steal two years of my life again! Migraine does not own me, it just happens to be a disease I was born with. I will continue to use everything available in my tool box, to live the best possible life with migraine that I can! As well as, being a source of support, encouragement, inspiration and hope, to my fellow migraine warriors.

“Step into my shoes follow my journey, my mountains, my valleys, my surprise potholes & if  you keep going the way, I keep going, perhaps you’ll understand my choices & strength.” ~ Karen Salmansohn

Live with hope,

Roni

 

 

Photo credit: Storyblocks

The Painful Truth of Pain

“You may encounter many defeats, but you must not be defeated. Please remember that your difficulties do not define you. They simply strengthen your ability to overcome.”

~ Maya Angelou

 

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September is Pain Awareness Month and I am extending an invitation, to join me on my journey navigating chronic pain. Let me first warn you that, this blog will be longer than my usual blogs and some of the things that I discuss are not at all pretty. But to make this an accurate accounting of my pain journey, I can’t leave anything out.

I’ve had migraine disease since I was 16 years old, episodic and treated well with Propranolol for many years. Then as life often does, it threw a curve ball in the form of Adult Onset Asthma. I did okay for a couple of years with inhalers and was able to stay on the Propranolol. Until I started having more asthma attacks and being hospitalized, at this point my doctor took me off of the Propranolol. We tried a couple of different beta blockers, but I couldn’t tolerate them and breathing is kind of important. 

It was at this time that everything went to hell in a hand basket. My migraine became uncontrollable, this was seventeen years ago and I knew virtually nothing about migraine, except that it caused my head to feel like it could explode and I vomited all the time. The first thing my Internal Medicine Doctor did was treat the pain with Demerol injections. Nothing was mentioned about a preventive to take daily, so when I would get another horrid migraine I would call his office and ask about a pain shot. Next thing I know my doctor was talking about me being a drug seeker. When it was he who started giving me the Demerol for pain! 

On top of all of this, the doctor’s office I was working for tried to fire me while I was in the hospital. The head of Human Resources let them know that they could not do that. The Family Practice Clinic I was working in, was owned by the hospital that I started working for when I was 16. To make a long story short, they found another way to fire me. When I was discharged from the hospital that last time, before going back to work, I had seen three different doctors as consults. Between all these doctors, I left being on twenty-three different medications. Yes twenty-three, that was not a typo! It’s a wonder I knew which way was up!

They used the excuse that I wasn’t doing my job properly, not because of my illness, but because I was overmedicated. Move along now, you’re defective you can’t do your job properly, as for the 21 years you’ve worked for this hospital, they don’t mean crap! The many times that I had worked a double shift, in a department because someone called in. My loyalty to the hospital counted for nothing! That was one of the lowest days in my life! One of the doctors was especially unkind to me, a couple of years later I heard he had started getting migraines. Then he had an affair with his office nurse, the entire practice split up. He no longer works for that hospital. The hospital itself was bought out by SSM a few years later and is now in the process of being bought again by The University of Columbia, the hospital I use. Karma is a bitch!

In July of that year I had a Total Hysterectomy, in October I was diagnosed with Fibromyalgia. When I asked my doctor what could be done for the pain, his response was to take hot showers. So helpful…like a person can stand in the shower all day. Now remember I had a hysterectomy, fibromyalgia and chronic migraine. Giant moods swings from the surgery and horrible pain from the chronic migraine and fibromyalgia, neither which were being treated. I was also deeply depressed, very deeply depressed. Our oldest son Nathan, had just moved out on his own. Our very best friends at that time, moved away. I retreated into myself and sat curled up in a ball most of time.  I started cutting myself, it was something I could control, I had absolutely no control over anything else in my life.

I was headed for a crisis, I just didn’t know it at the time. I started having thoughts of suicide and of course I kept all of this to myself. The depression, hopelessness, cutting, the big black hole that I felt myself falling into. Driven there by such horrible pain, with no end in sight. All I wanted to do was escape it all! I had no one to talk to, who was going through the same thing I was. No one to reach out to, it was just me and my thoughts. But when my thoughts actually took me to the point of making a plan to commit suicide, it scared me so badly that I called my doctor’s office. I really didn’t want to die, I just wanted help. Their Nurse Practitioner was there and I knew him very well and vice versa, he was gentle and very kind! He set everything up with the intake counselor at our local Psychiatric Unit. That phone call was the best thing I’ve ever done for myself! I spent seven days inpatient there, the Psychiatrist helped me more in seven days, than my Internal Medicine Dr. had in a year. He started first with the depression and anxiety, them the pain issue, he actually prescribed pain medication for me. Basically because he realized that all of my problems stemmed from the same source. Pain! Treating my pain, depression and anxiety, made a world of difference. No more cutting, no more suicidal thoughts, I began to feel like myself again. I continued to see him and a therapist for quite a while, as for my Internal Medicine Dr. I fired him and got a new one. By not listening to me, he almost caused me to take my life. I learned a lot from that and will never again put up with a doctor who is not willing to listen, or treats me with disrespect.

Finding a good headache specialist is not an easy task, especially if you live in a rural area. My sister had some contacts in the Chicago area, who told her about The Diamond Headache Clinic. So I was able to make an appointment and she drove me there for my first appointment. Chicago is a six-hour drive one way from where I live. My appointment was with Dr. Seymour Diamond. I went prepared to stay and I was admitted. Their standard operating procedure is to take new patients off of any medications that have addictive properties. It took me seven days before I started having any withdrawal symptoms, but when they hit, WOW! Not pleasant at all! I went to Diamond for three years, until an insurance change caused me to be unable to continue. I learned a lot about migraine will going there, much more than I had before. Their inpatient program included, group therapy, biofeedback, physical therapy, dietary classes, art therapy, pharmacy classes, tai chi, they covered the whole migraine.

I’ve been with my current headache specialist for over tens years and I absolutely love him. From day one, he has worked with me on my treatment plan. He is kind and considerate, he doesn’t just treat my migraine, he also treats my fibromyalgia, insomnia, depression and anxiety. When I’m in a long migraine cycle and need to come in for DHE infusions, plus the other medications we add-on. I can just email his office nurse, to let them know what’s been going on and they set up the admission. He has never once doubted my word or questioned me about the need to be hospitalized. We show each other respect, a partnership that has worked very well for more 10 years.

The hospital that I use is a teaching hospital, so I’ve seen many residents over the years. And have educated many about migraine, during my last hospital visit, I had a resident who for whatever reason, couldn’t wrap his brain around fibromyalgia. As I tried to answer his questions, his arms began to cross against his chest, I knew then he wasn’t buying what I was selling. My husband even explained that during a flare, the slightest touch from him caused me great pain. I just left it at that, fibromyalgia is often stigmatized as much as migraine is. As he watched me struggled with pain over the next couple of days, his demeanor changed, he became more considerate of my pain. His seeing was better than words I could have continued to throw at him.

Barring a miracle, I’ve come to accept that I will live with chronic pain everyday of my life. My baseline migraine pain level is a three, pain from fibromyalgia fluctuates depending on, the weather or if I’ve done too much. I also have degenerative disc disease throughout my spine, I have been dealing with a lot of low back pain from that. Sometimes the pain is so bad that I can hardly walk, I feel like a 54 year woman in 90-year-old woman’s body’s. I have an appointment with Pain Management to work on some of these issues.

How I live that life, is up to me. On my good days, I enjoy time spent with my husband and my kitties, Belle and Sugar. Reading, which is my passion!  On bad days, I will still enjoy time spent with my husband and kitties, I just might be asleep on the couch! I will still read, unless migraine pain level is too high. But I will never again allow migraine to steal two years of my life! I am not trying to trivialize pain, not by any means, living every single day with chronic pain is hard, no it’s hell! I’m so very thankful that I don’t have to do this alone anymore! I have support now, friends who know what’s it’s like to go through such pain. Friends that I can reach out to and I know that I will never, ever get to that awful place I was years ago, when I felt the only way was to end to my life. Supporting and encouraging one another is vital, I’m living proof! Tears are running down my face as I write this, if only you could see inside my heart and understand how much I love all of my fellow pain warriors. Never give up on one another!

“Pain nourishes courage. You can’t be brave if you’ve only had wonderful things happen to you. ”    

~ Mary Tyler Moore

Live with hope,

Roni

 

I Feel Good!

“Wo! I feel good, I knew that I would, now
I feel good, I knew that I would, now
So good, so good, I got you
” ~ James Brown

For the first time in two years, I can say, I feel good! Getting out of a two-year cycle of intractable migraine, is like winning the lottery to me. Two years of never-ending pain that kept me in my cave, for about ninety percent of that time. The isolation was almost unbearable, without the support of my husband and my dear migraine friends, who encouraged me, through texts, phone calls, cards, special little gifts in the mail, on Messenger and on Facebook, I don’t know if I would have made it!

Definition of intractable ~ from Merriam-Webster

1 : not easily governed, managed, or directed

  • intractable problems

2 : not easily manipulated or shaped

  • intractable metal

3 : not easily relieved or cured

  • intractable pain

My last hospital stay changed all of this, I was inpatient August 6 through August 12. For this admission I asked about adding IV Steroids, along with the DHE Infusions I always get. I’ve always been very leery of steroids, my Mom had to take them after her kidney transplant and I saw what havoc they played on her bones. I know that long-term and short-term steroid use, are two different animals, but it was still very hard to get the imagine out of my head. When you see someone you love so deeply, suffer so horribly, that just doesn’t go away!

I did four days of IV Steroids, the side effects were not too bad. Hot flashes, mood changes, I cried very easily, stomach cramps, oral thrush and the worst for me nausea, even though I was getting IV Zofran. Being nauseous is more debilitating for me, than the head pain! I would have to lie very still, to keep my tummy more happy, thankfully I slept a lot. By Friday I could tell that I had made a turn, as bad as the nausea was, I would do IV Steroids again!

I feel like my old self before the intractable migraine, I am out of my cave, getting up and dressing like a normal person, jewelry and all. While I still have chronic migraine, I’m being realistic also, I know that I will have my bad days when the cave will be needed. But my hopeful brain, says never again for any long stretch at a time! So yes, I feel good!

“Wo! I feel nice, like sugar and spice
I feel nice, like sugar and spice
So nice, so nice, I got you” ~ James Brown

For your enjoyment, James Brown singing “I Feel Good”, feel free to bust some moves, I did!

 

 

Live with hope,
Roni

 

 

A Tea Break

“If you are cold, tea will warm you;
if you are too heated, it will cool you;
If you are depressed, it will cheer you;
If you are excited, it will calm you.”
  ~ William Ewart Gladstone
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I have found of late, that some of the simplest pleasures in life, bring the greatest joy, the best source of relaxation and an excellent way to soothe anxiety. Having a tea break is one of those simple pleasures. The easy rhythm of getting everything together to make a pot of tea, is relaxing in itself. Choosing the flavor you want, boiling the water, getting your tea-cup and saucer out, honey at the ready. Then finally taking your first sip of tea, the warmth flowing through your body. Somehow letting you know, all is right in your world!
On days that I am feeling especially anxious and depressed, during a migraine cycle, taking a tea break helps to focus my mind on the ritual of the process. And off of the feelings of impending doom, that comes with anxiety for me. I can feel my heartbeat slowing down, the knot in my stomach loosening. Dealing with the head pain, sensitivities to light, sound, smells, touch are in themselves, a lot to handle without worrying about having a panic attack on top of them.
The tools we find to help us through a migraine attack, don’t have to be huge, over the top actions. In fact simple is often the best, our brains during a migraine attack are already on overload. Having our migraine kit packed with comfort measures is key, when a migraine hits, the last thing you feel like doing is looking for everything!

I hope you have enjoyed taking a tea break with me, it is ever so relaxing! As I was looking for quotes to go with my blog, I ran across this short piece about Irish tea. I found it most amusing and totally correct.

“In Ireland, you go to someone’s house, and she asks you if you want a cup of tea. You say no, thank you, you’re really just fine. She asks if you’re sure. You say of course you’re sure, really, you don’t need a thing. Except they pronounce it ting. You don’t need a ting. Well, she says then, I was going to get myself some anyway, so it would be no trouble. Ah, you say, well, if you were going to get yourself some, I wouldn’t mind a spot of tea, at that, so long as it’s no trouble and I can give you a hand in the kitchen. Then you go through the whole thing all over again until you both end up in the kitchen drinking tea and chatting.

In America, someone asks you if you want a cup of tea, you say no, and then you don’t get any damned tea.
 

I liked the Irish way better.”
  ~ C.E. Murphy

I have to agree, I like the Irish way better also!

“Rainy days should be spent at home with a cup of tea and a good book.”
  ~ Bill Watterson,  Calvin and Hobbs
Live with hope,
Roni

My Place in This World ~ Social Media Challenge Day 11

“You can dream, create, design and build the most wonderful place in the world, but it requires people to make the dream a reality.”
~ Walt Disney

For me I found my place in the world, when I began blogging. It became a way to be creative, reach out to others living with migraine, share my journey, tips and tricks and was also very cathartic. A positive way to turn frustrations into something good and rewarding. I like knowing that those who read my blog, come away with useful information, but am delighted when I am able to make them laugh!

Hope and humor are my constant companions living migraine and I try very hard to inject this in each blog. Hope is so very important, if you lose your hope, you will lose the battle with migraine. And it is very much a battle, why else would we be called Migraine Warriors?! Hope changes everything! Humor helps the rough days go down a little easier, “laughter is the best medicine”! You will feel better about where you find yourself, if you can see any humor in the situation. 

I love blogging, I might not be able to blog as often as I would want to, but I always want to make sure that I have a good topic, for a well-rounded piece. And am not blogging just for the sake of putting out a blog. That doesn’t have a place in my world. I would like to thank all of you, who have encourage me, been my cheerleaders, and have given me positive feedback! I am blessed to have you in my world!

 

Live with hope,
Roni

 

 

 

 

Migraine Warrior ~ Social Media Challenge Day 6

“Whatever you are physically…male or female, strong or weak, ill or healthy–all those things matter less than what your heart contains. If you have the soul of a warrior, you are a warrior. All those other things, they are the glass that contains the lamp, but you are the light inside.”
  ~ Cassandra Clare
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My migraine journey began at age 16, with what I thought were sinus headaches and have since learned that many people think this exact same thing. After finally seeing a doctor I learned they were indeed migraine and was started on Propranolol, with hardly ever a break through migraine. Propranolol worked beautifully for several years, until my body decide to play a trick on me. In early 2001 I developed Adult Onset Asthma, Beta Blockers such as Propranolol, exacerbate asthma symptoms. I had to stop taking the Propranolol at once, which caused several unpleasant side effects, due to the number of years I had been on it.
The worst thing that happened was that my migraine, became out of control and turned chronic, a state that hasn’t changed in eighteen years. In fact in the last eight months, I have swung back and forth, between chronic and intractable migraine, I will touch on this again. It took much trial and error to find the right headache specialists, they are not all created equally!! And more trial and error finding a preventive that would work and I didn’t have allergic reactions to. Thank goodness today I have a doctor who works with me on my treatment plan. Is kind and caring, totally gets me, and has a great office staff, sometimes that can be almost as important as having a great doctor.
The last eight months or so have been a real battle, dealing with intractable migraine and weather triggers, which also cause my fibromyalgia to flare, leaving me exhausted by pain. The fatigue can leave me with a foggy brain, problems with spoken or written words, which is so very frustrating! I began to have nightmares, waking crying, punching and kicking, from the pain. The doctor gave me Amitriptylin 25mg to take at bedtime, this helped for a short while, but the nightmares returned. My poor husband, he can tell I’m crying and talking in my sleep, but my words make no sense. I always wake myself up. Yes migraine is more than a headache, but it is also so much more than a migraine. It touches every part of our lives. It is truly a daily battle for me and one I want to win everyday! Do I always win? No in the sense that the pain is still there, but yes because I’M still here. I take this journey/battle one day at a time! I might not win every battle, but I will win the war! I am a Migraine Warrior!
In the picture at the top, is my WARRIOR bracelet, I wear it everyday to remind myself of what I’m capable of. The stickers I added sunglasses, rain clouds, help, together and love, are symbols of my migraine life. Sunglasses ~ my eyes are super sensitive to light, Rain Clouds = migraine, Help ~ even warriors need help, my husband is super supportive, I am very blessed. He gets upset with me, If I say that I feel guilty about him pitching in and cooking or doing laundry. He always tells me that they are his chores too, he’s retired and that does make a difference. Even so, he is very special! Together ~ Migraine Warriors need other warriors, to share support, encouragement, inspiration and hope! Love ~ I love my fellow migraine sister’s, I never could have made it this far without you!
“Courage, above all things is the first quality of a warrior.” Sun Tzu                 
Live with hope,
Roni
* Special Thanks to Michelle Tracy for showing me where to buy my Warrior bracelet, love you girl!

Family Tame The Beast

“I sustain myself with the love of family.”  ~ Maya Angelou

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Welcome to the fourth and final installment, to the series Tame The Beast. I am sharing today, someone I couldn’t live without on my journey with chronic migraine, my husband Rick!  Though when he see’s his picture on Facebook, I might have to hide for a while, he really hates having his picture taken, and putting it on Facebook even more. Oh well, in this case he deserves having it there!

I am blessed with a husband, who is very supportive! We’ve been through a lot together, on my journey with migraine. I would even say, he has walked along with me on this journey. Imagine if you will, a journey that takes you along a wide winding road. As your walking part of the trip is in sun, bright and cheerful, no cares in the world, we hold hands happy as can be. Then all of a sudden a storm breaks over our heads, lightening cracks, thunder roars, but he keeps holding my hand. The storm moves on, it’s sunny again. Before we realize it, we find ourselves walking through, very dark and gloomy woods, they are frightening. Still he holds my hand,  even putting an arm around me, as to protect me, we pass through the woods, into the sun again, and continue walking. Feeling relief that the ugliness is behind us. Out in front of us pops a strange creature, called Crabby, who hits me with his wand and now I’m Crabby! Taking little pot shots at Rick, but still he holds my hand. Soon Crabby wears off and I apologize to Rick, he understands, all is good and we continue our journey. Now imagine taking this journey, again and again, because that is what it is like for a person living with chronic migraine. 

You may have guessed what some of the imagery stood for. The storm was a migraine attack, which lately have gone back and forth, from chronic to intractable. Causing me to spend more days in my cave, than I would like to. During these times, Rick never complains, he just picks up what needs to be done and does it. I’m fortunate that he really enjoys cooking, and is great at. I get tickled at him looking on Pinterest for new recipes. He gets upset with me, when I feel guilty for him having to do my chores. He tells me, this is not your fault and they are as much my chores as yours. He’s retired and actually likes to stay busy.

The dark gloomy woods, are days when depression and anxiety get the best of me. Even with medication, chronic daily pain takes a toll, and it can be frightening to feel that way. Especially when you feel anxious, I fear a panic attack coming on, and I do not want that. It’s these kind of days, that I am more likely to cry at the drop of a hat. Rick understands this and gives me extra hugs, making me feel safe.

Crabby, well what can I say about crabby? I tend to get crabby, during a migraine, or when I’m in a lot of pain from fibromyalgia, or the bad disc in my back, or all them combined. Poor Rick being the only one around, ends up on the receiving end of my crabbiness.  As it often is with families, we take things out on them, that we wouldn’t on anyone else. I always apologize and he understands where it is coming from. He is my rock in every sense of the word. I would be utterly lost without him and am thankful everyday, for his unconditional love and support.

Without Rick’s support, it would be much harder to fight the beast everyday! But he has stuck with me through thick and thin, since the chronic migraine started seventeen years ago. Countless hours in the ER, until I finally got a good headache specialist. Many trips to Chicago, a six-hour drive one way, when I was seeing a specialist there. Many trips to the hospital, where I go now, thankfully only about forty-five minutes away. And he drives over everyday to visit with me. He is my soul mate, my best friend, my rock, and I love him dearly!

You don’t choose your family. They are God’s gift to you, as you are to them. ~ Desmond Tutu

Live with hope,
Roni

Calm To Tame The Beast

“The ideal of calm exists in a sitting cat.”
― Jules Renard

Welcome to my third installment, to the series “Tame The Beast”. In this series I am sharing some of the coping mechanisms, that I found to be useful on my journey with chronic migraine.

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Calm at Daybreak

Calm is an app that can be download to your cell phone, and has some striking differences, compared to other mediation apps I have seen. First it does offer guided mediation, for several different areas in your life. But not just your life, there are guided mediations for children as well.

  • 7 Days of Calm
  • Mindfulness at Work
  • Breathe
  • 7 Days of Sleep
  • 7 Days of Calming Anxiety
  • Deep Sleep Release
  • 7 Days of Managing Stress
  • Relationship with Self Series
  • 7 Days of Self-Esteem
  • Winnie the Pooh Series
  • Calm Kids
  • And many, many more!

There are several different pieces of music that you can choose from for self mediation. They use a lot of nature melodies, which I find extremely relaxing. On first opening the app, it starts playing sounds of drifting water, birds calling, insects chirping and the peep of little frogs. When I find myself feeling anxious, I will open the app and just listen to this for a while. Paying attention to my breathing and any tension I may be holding, if I find tension I focus on releasing it. This is where my biofeedback training is so very helpful!

Another wonderful feature of Calm, is their bedtime stories! Yep, that’s right bedtime stories. For adults and children, they are simply amazing! The readers have the perfect seductive, relaxing voices. Get your mind out of the gutter, they are not those kind of stories. That is the best description I could think of, there voices draw you in, making you feel so relaxed, you’d think you had just stepped out of a day spa! The children’s stories are just as amazing, there are some for nap time and others for bedtime.

I absolutely adore Calm, it is well worth the price I paid for it. When I have a migraine attack, I often get anxiety. Having another tool to use to tame the beast is always a good thing, you can never have too many! Being prone to panic attacks, I like to be able to nip them in bud, before they become full-blown. Calm helps me with that, it really is an amazing app, totally different from anything I’ve seen before. I still like Headspace for guided Mindfulness Mediation, and will continue working with that. But Calm is my go to, well, when I need to be Calm, and tame the beast!

“If it comes, let it come. If it goes, it’s ok, let it go. Let things come and go. Stay calm, don’t let anything disturb your peace, and carry on.”
― Germany Kent

Live with hope,
Roni

 

 

Photo: Credit Storyblocks.com

 

 

 

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