Dear Purple Butterflies,
Lately I’ve been in a bit of a depression. Ever since Thanksgiving, I’ve been experiencing more flares than usual and spasms. Naturally, I have found that it is difficult to be inspired to write under those circumstances. I was lucky enough to get an appointment to see my Rheumatologist before the end of the year. Aside from the updated MRI’s they want me to have, my fingers are crossed that they’ll adjust my medications. For now, I’m soldering on with a brand-new entry. I am excited about sharing this with all of you!
As warriors, each of us have had experiences being there for each other. From online discussions, zoom phone calls, and virtual conferences, we’re all in this together. We’ve been a lifeline for someone else. We know better than anyone else what it’s like to have a chronic illness. Have you ever wondered what your family and friends think about on what you are going through? Intrigued by this topic, I interviewed my husband and four best friends individually, with the outcome of creating a blog about it. It has given me an insight into an “outsiders” point of view of thinking about my illness.
I conducted five separate interviews. The first was with my husband, Dale. A quick background about the two of us. We met while working at the same attraction at Walt Disney World. I’ve known him for eighteen years, while we’ve been married for fifteen years. For most of our relationship, my Fibro symptoms started getting worse. After a lot of online research, it was Dale who suspected I had Fibro. It was later confirmed with my doctors that he was correct.
“What is it like to have a wife with Fibromyalgia?”
Dale: “I don’t think it’s that different from having a wife without Fibro. I would say the only difference is being worried, wishful, as well as sympathetic. I’m worried for her possibly having a heart attack, wishful for a cure or at least better medication, and sympathetic that she has to endure pain daily. “
“How much do you know about Fibromyalgia?”
Dale: “I know Fibro is a chronic pain syndrome. Fibro is neuropathy with overactive nerves that send a signal to the brain that you’re in pain. A possible cause could be from some sort of trauma, at least that is my theory.”
“What is your worst fear about my situation?”
Dale: “My worst fear is that because of all the medication you have to take, it may affect your health and shorten the time I have with you.”
“If you could ask my doctors anything about chronic illnesses, what would it be?”
Dale: “I would ask if they knew of any holistic medicine that would help you.”
“If we met earlier in life, what would you change, if anything?”
Dale: “If we met earlier, I would catch you to keep you from ice skating when you blacked out, and keep you from having the plantar fasciotomy, because I have often wondered if they were the cause of your Fibro.”
“If you were to write a letter to your younger self about our relationship, what would you say?”
Dale: “I would tell my younger self to be patient. You will finally meet your best friend for life.”
“What do you miss the most, that we used to, that we can’t now?”
Dale: “I miss our daycation’s.”
“As my spouse, what is the one thing that frustrates you about my condition?”
Dale: “I feel helpless. I want to fix it and take away your pain.”
“How would you describe Fibromyalgia to someone who has never heard of it?”
Dale: “Fibro is like being set on fire while being electrocuted at the same time.”
“Do you have any questions for me?”
Dale: “How do you keep positive considering your daily ordeal?”
Me: I stay positive by distracting myself by reading, watching TV, hanging out with you and my friends, and of course Therapy Shopping!
I then turned to my four best friends, Jennifer, Amy, Camille, and Brandi. I’ve known Jenny and Amy for thirty-six years. We grew up in the same neighborhood. I met Camille twenty-two years ago while working retail at Walt Disney World. I met Brandi through Camille eight years ago. All these ladies have both witnessed what I go through both separately and together.
“What is it like to have a best friend who has Fibromyalgia?”
Jenny: “It breaks my heart to see Rachel in pain, let alone anyone in pain. I get that helpless feeling when I see someone in pain, so I pray for them. These bodies are like vehicles and breakdown.”
Amy: “There really isn’t any difference than any of my other friends. I just keep in mind you may have some limitations for something we may be doing.”
Camille: “It is honestly at times somewhat frustrating. The way it interrupts life, especially your plans. The frustration is at the condition and not with you at all.”
Brandi: “Having a best friend with this disease is heartbreaking sometimes. It breaks my heart knowing that such a young, vibrant person is limited by this disease. She is one of the strongest people I know.”
“Before my diagnosis, had you ever heard of Fibromyalgia before? If yes, what do you know about it?”
Brandi: “I knew what Fibro was before I met Rachel. I knew that it was a disease that causes chronic pain.”
Camille: “Yes, I had heard of it. What I know is that it is a constant random pain. Which makes life difficult to say the least.”
Jenny: “Yes, I heard of Fibromyalgia over twenty years ago. I know it’s muscle spasms and the causes are different for everyone. I have heard it can be caused by the nerves in the body.”
Amy: “Yes, I know a couple of other people who have it. It causes muscle pain all over.”
“If you were to write a letter to your younger self about our friendship now, what would you say?”
Jenny: “I would tell my younger self and tell Rachel to keep smiling and laughing like she already does. Laughter is healing. We all must keep moving and going no matter what may stand in our way. Life is full of challenges with lessons to be learned. I know this very well from my struggles and challenges in my mind, body, and spirit.”
“Get busy living or get busy dying.” – Morgan Freeman, “Shawshank Redemption”
Camille: “I would tell myself that I have an absolutely amazing best friend, who is worth more than money can buy.”
Brandi: “I would say to that there isn’t anything that I can do to help, but to be there when she needs someone to just listen.”
“What advice would you give me?”
Amy: “I know there can be some physical limitations with Fibro, but don’t let it control your life.”
“How would you describe Fibro to young children?”
Brandi: “As a teacher, I would explain to my kids that it is something like if you were to touch a hot pot and burn yourself, but the pain stays with you always.”
Jenny: “I would describe Fibromyalgia as a muscular spasm condition that can be triggered by certain stress for different individuals. It causes constant pain and can only be less with strengthening the body and relieving stress.”
Amy: “I describe it as it’s something that can cause the person to be in pain.”
Camille: “It is a sickness that can make you be in pain every day.”
“Do you know of someone else that has Fibromyalgia or a chronic illness? If yes, what do they have?”
Jenny: “My mom has Trigeminal Neuralgia. It is a nerve in her jaw that flares up with excruciating pain. It’s a chronic pain and worsens in the winter. She’s not sure how she got it but uses Chinese herbs for pain management. She takes prescribed medication from the regular doctor as a last resort, so she doesn’t become dependent on it. She also must apply heat and be in a quite atmosphere. She says the flare ups come when a stressful event happens and when the weather changes to cold. She notices eating healthier anti-inflammatory foods help too. I also worked with a hairdresser that has Fibro. She was in constant pain but loved her work and didn’t let it get in the way of her life. Acupuncture worked for her. I have several clients as well with Fibro and they are taking physical therapy.”
Amy: “Yes, I know a couple of other people with Fibro.”
Brandi: “Yes, growing up, I remember my grandmother having chronic headaches.”
Camille: “Yes, I know one other person who has Fibromyalgia. I know multiple people with mental health issues.”
I want to thank Dale, Brandi, Amy, Jenny, and Camille for taking the time to answer my questions. I am lucky to have such caring, important people in my life that take an interest in what happens with my health. Not everyone can say this, which reminds me that I am blessed, and I am not alone. Thank you for reading my blog today! Are you following me on social media? For your convenience I have them listed at the bottom of this page. Simply click on the desired social media logo to be taken to my page. Tell your friends! Tell your friends to tell their friends!
Till next time! Be well!
About the author:
Rachel Barclift, has been suffering from Fibromyalgia for many years. She went to the doctor, never finding any answers for years. She went to one doctor who told her the pain was all in her head. In 2011, she finally found a doctor that believed her! She was officially diagnosed by her rheumatologist and she was so relieved! She writes blogs in hopes to help others find positivity.