Introducing my invisible companion – pain

A sweet member of Chronically Hopeful, Angela, is sharing a beautiful post with us today. Thank you from the bottom of my heart for taking the time and spoons to be here with us today.

Bio from Angela,

I am a christian and lay-preacher. I worked in finance for 25 years but I am currently unemployed and looking for a new opportunity when my pain is managed effectively. I enjoy writing, public speaking, mentoring young people and spending time with family and friends.IMG-20170818-WA0004


When you meet someone for the first time, what do you think that they see or observe about you? Maybe the color of your eyes? Your radiant smile? Your height? Weight? Or whether or not you wear spectacles, walk with a cane or use a wheel chair? It is possible that a person may see and notice all of these outward features but for me, there is one thing that whilst all-encompassing to me, it is something that no one sees. I consider that it is significant but it is also invisible (at least to the untrained eye), and that is my pain!

Pain, caused initially by an injury and then by disease. Pain that wakes me up and often prevents me from sleeping. Pain that dictates my activities or lack of them. Pain that varies, but is my closest companion. I have never asked for its presence, but daily I am forced to contend with this intrusion, this reality, something that cannot be explained and that has a devastating effect on the quality of my life.


My “relationship” with pain, for want of a better word, began in the autumn of 1989 following a serious road traffic accident. For about six months I was unable to leave the house alone and needed help with every aspect of my life. Over the months that followed, my father and the physiotherapy team at my local hospital helped me to recover my strength thereby allowing me to return to work.

It was my dream to return to the relatively pain free life with the energy and freedom that many of my peers in their mid 20’s enjoyed. Sadly this was not to be and I had to find and accept a new and unwanted reality. Even though I was a Christian, this was still a challenge.

I was truly grateful for life, after all, how many people do you know that have been knocked over by a fire engine on call and have lived to share their testimony? I knew that I was blessed, but somehow at the back of my mind, there were some nagging questions: Why did this happen to me? Did I do something wrong? Suppose I had taken another route home or left work on time would things have been different?


As I battled with questions that I could not answer, I had further complications as I encountered a modern-day equivalent of Job’s comforters. People came to pray, give thanks, and to comfort me but sadly a few came to discover what “secret sins” I had committed that had led to this terrible accident.

Over the next few years as I grappled with the effects of widespread chronic pain, I found myself dealing with people who demonstrated a lack of understanding about chronic conditions and whether or not my pain was real or imagined. I asked God for healing, friends and family came for special prayer sessions, but when healing did not come, my faith was questioned.


What do you do when the promises of God don’t seem to apply to you or when you look around and hear stories of miraculous healings? When people question your desire to be healed, to be whole, to once again contribute to your church, your community, your family or even take care of yourself?


I didn’t have the answers or the strength to cope with them alongside the fatigue, nerve pain and all the challenges that both fibromyalgia and complex regional pain syndrome, brought to my life.


Moving forward however, I try to encourage myself and others by what God shows me through His Word. No matter how hard it is, I still have HOPE! Why? Well after nearly 20 years in chronic pain, I had another life-changing accident, one that left me unable to work and crippled by excruciating pain. Yet in all of this time I have been able to eat, have a roof over my head and I have my basic needs met. Has it been easy? Absolutely not! I lost some things that were important to me but I held on to that all-important, life-saving ingredient, Hope! Here’s how the Apostle Paul describes it in Romans 5: 3-5 ESV:

“3 Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.”

Hope as described here keeps us from being disappointed. Life is difficult for those who are suffering, but believing that a better day is coming, gives us hope. The Apostle Paul also has a disability, we are not told exactly what it is, but we know that he prayed three times for it to be removed.  When God chose not to, Paul accepted that God’s strength would be revealed in Paul’s weakness:

2 Corinthians 9: 7-10 Message

7-10 “Because of the extravagance of those revelations, and so I wouldn’t get a big head, I was given the gift of a handicap to keep me in constant touch with my limitations. Satan’s angel did his best to get me down; what he in fact did was push me to my knees. No danger then of walking around high and mighty! At first I didn’t think of it as a gift, and begged God to remove it. Three times I did that, and then he told me, my grace is enough; it’s all you need.
My strength comes into its own in your weakness. Once I heard that, I was glad to let it happen. I quit focusing on the handicap and began appreciating the gift. It was a case of Christ’s strength moving in on my weakness. Now I take limitations in stride, and with good cheer, these limitations that cut me down to size—abuse, accidents, opposition, bad breaks. I just let Christ take over! And so the weaker I get, the stronger I become.”


When I feel weak I go to God to receive strength from Him so that I am able to continue with the life that God has given me. I have lived with chronic pain for 28 years now and some days I am unhappy about the pain that I feel, that no one appears to understand and that no one sees. When my invisible companion tries to control my life, I try to reflect on better days and lift my heart to God who gives me hope.


Migraine 101



The word migraine is a familiar one to most yet there is a lot of confusion surrounding them. Migraines are anything but straightforward. In fact, many medical professionals debate over the definition, cause, and treatment.

The basic foundation of the definition of a migraine according to Webster dictionary is a condition marked by recurring moderate to severe headache with throbbing pain that usually lasts from four hours to three days, typically begins on one side of the head but may spread to both sides, is often accompanied by a variety of symptoms. Some people believe that it is a genetic neurological disease.

Of course, there can be other causes in addition to genetics such as stress, trauma, or chronic illness. Many times the cause of a migraine disorder is unknown.

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There are a total of four stages of a migraine, but not everyone encounters each stage which is prodrome, aura, headache, and post-drome. First, prodrome occurs one or two days before a migraine. Many people do not experience aura which is nervous system symptoms before or during a migraine. The stage headache also is known as the attack is an actual migraine which can last anywhere from 4 hours to 72 hours if untreated according to Mayo Clinic. Lastly, post-drome occurs afterward for around 24 hours.

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Being able to recognize the signs of a migraine are essential. A migraine can be accompanied by an array of symptoms.

Some symptoms include

  • extreme pain,
  • light smell or sound sensitivity
  • nausea
  • vomiting
  • pain on one side
  • pain down the neck
  • vision changes
  • numbness
  • Vertigo
  • Feeling lightheaded or dizzy
  • Puffy eyelid
  • Difficulty concentrating
  • Fatigue
  • Diarrhea – constipation
  • Mood changes
  • Food cravings
  • Hives
  • Fever

Symptoms of a migraine are vastly different for every person. Furthermore, symptoms may vary different episodes. Likewise, triggers are unique to everyone.

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Some triggers include but are not limited to

  • Stress
  • Hormonal Changes
  • Weather
  • Foods such as aged cheeses, salty foods and processed foods
  • Skipping Meals
  • Dehydration
  • Lack of Sleep
  • Additives in foods like MSG
  • Drinks like alcohol or caffeine
  • Sensory stimuli. Bright lights and sun glare can induce migraines, as can loud sounds. Strong smells — including perfume, or paint thinner


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The majority of the time migraines are diagnosed on a clinical exam and from discussing episodes with a physician. Additionally, they will consider medical history, symptoms, and perform a neurological examination. Other medical tests may be ordered to rule out another illness or if the pain seems unreasonably severe or is unusual.



Childhood Migraines

Childhood migraines are not rare, but it is not something we typically think of in children. In fact, it has been reported that an 18-month-old child had a migraine. Receiving a diagnosis with any illness can be challenging even more so when a child is so young and lacks the skills to communicate what they are enduring.


Migraine in kids is not just a bad headache.

It’s a complicated neurological disease, with head pain and other symptoms, like nausea, vomiting, dizziness, sensitivity to touch, sound, light, and odors. Abdominal pain and mood changes can occur, too. While kids generally have fewer and shorter migraine attacks than adult sufferers, childhood migraine can be just as disabling, and it can seriously affect the child’s quality of life. Consult a doctor if your child suffers from frequent or disabling headaches or migraine symptoms.”

My name is Courtney Jordan. I am the Mom of 4 amazing kids and Ne-Ne to 2 sweet grandbabies. I love life and do my best to enjoy every second and make long-lasting memories. I live with Crohn’s disease, Ulcerative Colitis, Gastroparesis, Migraines, R.A., Osteoarthritis and a Seizure Disorder. I refuse to let my body dictate how I live my life (even on days when I must give in). One of my greatest passions is helping others who live with lifelong diseases. We are more than what we fight!

Courtney Jordan Migraine Warrior Current Age: 44

Migraine Onset Age: 8 or 9

I vividly remember experiencing my first migraine. I woke up because the pain in the left side of my head was absolutely excruciating. Opening my eyes and taking in the light in the room made it even worse. I was nauseous and made my way to the bathroom where I began vomiting. At this particular time, I had 4 siblings and several of us shared a room.

My Mom covered the windows in her bedroom to make the room dark and snuggled me in bed. She would alternate ice packs and heat to help with the pain. This became a normal occurrence and I suffered from these all through my teens and a lot of my adult life. Usually, my migraines would last for several days, which impacted my ability to attend school. Thankfully, my parents were great advocates for me and I was able to make up my school work at home.

As a child, it is very hard to recognize warning symptoms and it is sometimes hard to explain what you are feeling..png

As a child, it is very hard to recognize warning symptoms and it is sometimes hard to explain what you are feeling. Even more difficult, is the issue with dealing with the emotional stress caused by dealing with health issues. You feel different and sometimes even feel alone because your friends and siblings can’t understand what you are going through.

These problems are hard to even as an adult, but as a child, it is compounded by not having the “tools” needed to deal with psychological effects. I think it is very important for parents of children with health issues to be aware of and to make arrangements for emotional and psychological support.

My migraines were physically debilitating and affected not only myself but my family as well. I often felt like I was a burden on my family because I disrupted the normal schedule and required more attention when I was feeling poorly.

I did not receive the medical help I truly needed until I was in my 30’s for my migraines. It was truly life changing when I started taking maintenance medication. I still suffer from migraines, however, it is now only once or twice a month and usually only 24-48 hours.


Things that I feel are very important to remember for parents of children that suffer with migraines:

1. Your child is in a great deal of pain and may be withdrawn or act out because they are not sure of what is going on with their body.

2. Your child may not be able to fully explain to you how they are feeling.

3. Your child may be worried about the impact they are having on others and may deal with guilt.

4. After an episode, talk with your child about how they feel, both physically and emotionally. Ask what they find helpful and comforting during a migraine. Try to learn the warning signs and help them learn to recognize them as well.

5. Be loving, patient and supportive.


Thank you, Diamond Headache Clinic for the childhood migraine slideshow. Please take time to check out their web page here. A huge thank you from the bottom of my heart to Courtney for sharing her story with us.

Wisdome from a Chronic Illness Warrior

I am excited to have a beautiful warrior from the Chronically Hopeful Facebook page guest blogging for us today! “Ellie is a 45 year old woman living in South Carolina.  She has battled Malignant Multiple Sclerosis with grace and courage. She works as a cashier, but is always dreaming of more, she’s just not sure of what more is. Her favorite hobbies are reading, writing and yarn crafts. Her biggest hope in blogging is to help no one ever feel alone in their journeys with chronic illness, or anything else.” Please check out her blog here.


She never wants to meet me for lunch. It’s the only time my health will mostly fully allow me to socialize outside the home. My friends know this. She never answers my phone calls. That email has been sitting there unread for days. He won’t answer my texts, but he’s all over social media with all those silly memes. The phone shouldn’t ring off the hook every time I call for an oil change appointment only for me to come home to 3 messages on the answering machine asking why I haven’t scheduled my service appointment.


There’s no reason I can see for me to be number 68 of 123 on hold for a customer service rep when I call to try and straighten out yet another medical bill. Yet I am. It’s only more aggravation added to a life already made extra stressful by multiple serious and chronic illnesses. Can’t people act right if they’re going to be a blip on my radar? Don’t I deal with enough already just fighting to live?


There’s something I’m forgetting in the throes of all these medical appointments, treatments and pain-  the world won’t stop spinning because I’m always in pain. It won’t even slow down a little. I have to jump up on the ride while it’s spinning, full turbo blast speed ahead. Sometimes there’s a kind passenger already onboard willing to help out, but not usually. I must adjust and remember that people in my life are more than just blips on my radar, even the people just passing through and the strangers I encounter.


In a life full of illness and pain and the extra stress and hardships they cause, people are everything. My city is in the midst of a big cold snap with high temperatures in the 30s. I was sitting outside the library to cool off because my body doesn’t regulate temperature the same way as “normal” people. There was a shirtless man in shorts walking by on the sidewalk. He was singing loudly until a police officer pulled up beside him in his cruiser. I wondered if there was going to be some kind of huge scene because the lyrics the man was singing were not the nicest ones.


There was no scene. The police officer talked to him quietly and then reached back in his cruiser and put a coat on the man. They then got in the car together like they were friends. I hope they went to a shelter if the man needed it.


Many years ago I was grocery shopping with my mom and saw a woman crying in the store. We asked if she was ok. She said yes and we didn’t press the issue, but it didn’t look like she was ok. We carried on with our shopping and rounded a corner and there was the woman full on sobbing sitting on the floor in the produce section. The store manager was on his knees beside her praying. It seemed to help her.


Many years later, this event is still having a profound impact on my life. I didn’t know religion in any way at the time. I was dead set against it, actually, and quite vocal about my lack of faith. Time has changed that, and recently I went back to this store to see if that manager was still there. He was. He too remembered the crying woman. I told him what an impact it had on me. The conversation I had with this manager will stay with me forever, and well, is too private to share, but it, and the crying lady were a huge stepping stone on my path to a faithful life.


Please remember that as we go through life with disease and pain that everyone is going through something. Illness that doesn’t go away does not make our pain different than anyone else’s. It may mean there’s less of a break, but pain is in the eye of the beholder, everyone feels it differently. Just like beauty, and that is a beautiful thing.




Rebellious Worship

Rebellious worship, those words don’t seem to fit together. Except for, of course, in my case. I find it necessary as the Holy Spirit moves me to be rebellious in my worship.

You see, I have several chronic illnesses, one of which is Hyperadrenergic Postural Orthostatic Tachycardia Syndrome. Professionals are advising individuals with POTS to avoid singing. Generally speaking, I follow advice to a T. However, there are times in worship, I am rebellious. Personally, singing allows me to connect with God and worship Him in an extraordinary manner.

Worship is more than a song, therefore there are many alternative ways to worship God. No one style is better than another. Never the less, music holds a special place in worship. Perhaps this is because many admirable Christians worshiped this way; such as King David, Mary the Mother of Jesus, and Jesus.

I have been singing praises to God for as long as I can remember. Some of the times I had been most filled with Christ joy was during worshiping Him through singing. I have many lovely memories, which I cherish, singing praises to the Lord with friends as an adolescent.

It is a struggle for me today to sing most times. It is hard to get adequate air to reach certain notes or to get enough air when rests are scarce. At times, I have a dizzy spell. The focus though isn’t my physical limitations, but the righteousness of my Lord. The physical combat, for me, is no reason to stop singing praises to God. I believe He knows my heart and the struggle I endure. I also know without a doubt that my worship is pleasing to Him.

When A Warrior Passes

Honestly, I have wanted to write this post for a good two months, but it has been difficult to write.

You know once you have transported to the world of chronic illness that one day you will be devasted when someone passes away. However, you are never ready enough for that moment.

I had expected to eventually lose someone in a Facebook support group not someone I went to school with. Two weeks before she passed I ran into her mom while food shopping. I barely remember anyone from high school and it is embarrassing as well as frustrating for me. But when her mom said her name I could picture her sitting next to me in middle school. I had assumed she moved not that she was chronically ill with at least one of my illnesses. I promised her mom I would talk with her and we could hang out. Her mom said they were attempting to get her paired with a service dog. I was so excited at the possibility of having an in person chronically ill friend my age.

I didn’t hesitate finding her on Facebook.I tried to be patient waiting for her to response constantly reminding myself she was flaring. Within hours I found out I was too late and it broke my heart in a new devasting way. I immediately regretted not connecting with her sooner. I know she suffered way too long and things were horribly unfair. She should be going to college and building a life for herself.

Lossing someone who has one of your illnesses or who is chronically ill is extremely different. I have balled my eyes out many of times for a life of a fellow warrior that I barely knew. My heart goes out to the families in a unique way.  I might not have known them well or maybe not at all yet I live a small part of their story. I live the pain, doctors, symptoms… the life of a spoonie.

The grieving seems to be unique to those with chronic illness. There is an element of guilt for living because you know it could have been you. You wonder why it was that person, what if someone listened better, could it have been avoided, or will that be me one day. Frustration with the health care system at times.  Angry with the people who brush us off.

It has been a few months but from time to time she’ll come to my mind. I wish I remembered more about her other than her pretty hair and sweet voice, like an actual conversation. This death has been completely unique in the way it affected me.

Anytime someone passes with a chronic illness around your age it hits home and it is difficult. When you lose someone to chronic illness allow yourself time to grieve. If someone in the chronic illness community you know passes find a special way to say good bye and to pay your respects. When a girl passed with IBD a few weeks back, I found great comfort in leaving her family a message on an online guest book in honor of her.

Regardless of how close you were let yourself cry if you need to.  Give yourself permission to get angry, to feel hopeless, or broken. Emotions are healthy. They are indicators of things going wrong and of heartbreak. However, emotions are not your dictator so once you have allowed yourself to feel you need to slowly move forward. Allow yourself to heal slowly. Seek support from others who are chronically ill, family, and friends. Cherish each moment in life and live them to the fullest as best you can.



Shake it Off

Living with a chronic illness is a challenge beyond words when encountering people who don’t understand. We have all had an experience of rudeness beyond belief. There are stairs when taking medication in public. Rude remarks when using a walking device. 

 I cannot tell you how many times people have been disrespectful or stared at me because I use a wheelchair in a store. The majority of the time people either stand in front of me, unwilling to move or practically run away. People act like I have the plague. I have heard over the few years I have used a wheelchair in a store that I am too young to use one or too pretty. The stairs and remarks make me feel like I owe people an explanation. However, I do not need to explain my life to everyone I encounter. If the right doors are open to education someone I don’t mind but there shouldn’t be a social pressure to explain it all. 

 Many people doubt the intensity of our pain and they question if we are indeed really sick. No one seems to understand battling against your body and taking care of yourself is a full-time job. Simple tasks are draining. Some people go out of their way to upset us or to be rude. They offer unnecessary options on how to break free of the chronic illness chains.


Too often Spoonies lose friends due to their illness. Some people want absolutely nothing to do with us while others act strangely towards us. 

Too often people judge us before they get to know us. People treat us at times like we are nothing or are stupid. 

Too often we hear phrases like: 

But you don’t look sick

You need to be more positive

Have you tried…

You’re too young to be sick

It must be nice not having to go to work/school

You’re just having a bad day

You need to get more exercise

It’s all in your head

Maybe if you got out more

These things get under a spoonies skin, to say the least. When people mistreat you, SHAKE IT OFF. It is not your fault. Don’t let them get to you. You are an amazing person. Even though you are ill, you are so valuable. You have so much to offer this world. Shake off the stares, Shake off the negative and nasty remarks, Shake off the heartbreak…. Shake it off.. It’s gonna be alright

Hold your head up high, cause it’s gonna be alright. You have so much courage. You are an inspiration for thriving despite every setback. Sending lots of spoons, prayers, and hugs. ❤