I have a lot to say about chronic illness because I’ve had it ever since I was a kid and I have had several different diagnoses in my 57 years on this planet. However, I find some of my fellow chronic illness survivors to be so inspiring and their stories share such important perspective and wisdom that I thought I’d share some of them here from time to time.
Tanya is a social media friend. I met her on Facebook and she is also a writer, blogger who shares some wonderful insights about chronic illness and Fibro in particular. She had a post on her blog that she has consented to share with us here.
People have asked me how can I smile while dealing with a lot of health issues. It isn’t always easy yet experiencing twenty- one years of chronic, intense pain, I have learned to use tools that are available to me. I have been in a chronic pain management program, been through tons of Counseling, and researched a lot about the pains and disease such as Fibromyalgia and Chronic Pain Syndrome that I deal with. I have learned what medications work or don’t work for me due to trial and error. I have a huge list of meds that I have a bad reaction to.
Another thing I do is when I’m in intense pain, I tend to keep to myself and try to rest and take care of me. I fought doing that for years but when the pain and symptoms became worse, I realized that I need to take care of me, speak up, and be an advocate for me because no one else will do it.
There are days that I’m not smiling but I try to keep my spirit and emotions up by watching funny videos on U-tube, spending time with friends in person, on the phone, or even on Facebook and finding humor in my pain or brain fog I get a lot. Yet the most important thing I have is my faith in God in whom I lean on for daily strength. Without Him, I would be way worse off then I am now. I can’t say it’s been easy or the road I’ve traveled was great. There were times I was mad at God for not healing me but I’ve learned that He is using all this pain I go through so I can identify and encourage others who are dealing with major health issues, as well. So for that, I am grateful.
NOTE: If you are a Chronic Illness Survivor who’d like to share your story of how you got diagnosed, what you learned, what you think people should know about chronic illness, or something else you’d like to share, contact me! I’d like to include one guest post per month if that is possible.
Ephesians 2:10 says, “We are His workmanship, created in Christ Jesus for good works, which God prepared beforehand that we should walk in them.”
So, long before we were born, God knew what our lives would look like and He gave us what we needed to do the good works that we were created for. The challenge for us, then, is to seek His guidance in how we do that because life can change drastically for us. While that’s not news to the Lord, it may require some tweaking on our part.
Some Background: I was perusing Facebook the other day when I came across a long time friend’s post (Cindy Rushton) talking about being an overcomer. She posted, “You are designed and destined to be an overcomer!” My first instinct was to be sarcastic so I said, “Well, I certainly have been given enough to overcome!”
As the discussion went on, I relayed how I had to make some adjustments over the years in order to keep writing. The limitations of chronic illness had a profound effect on my ability to write from the thinking process to the physical act of writing. However, I have found workarounds and even changed what I wrote about over the years-lending my voice to different passions I’ve had…and I’m still writing!
I’ve written a lot about my life on this blog and all the adjustments and limitations I have had throughout my years, but I had really never thought much about the ways in which I had to make changes in order to continue writing until one of her last comments to me, “That was powerful!
As I looked at her words typed there to encourage me as she so often does, it suddenly hit me that my writing testimony really IS powerful. Right then and there, I felt the Lord leading me to write a part of my testimony that I had never considered much up until this point.
I was born a writer and I started writing even before I knew the Lord at the age of nine. I wrote poems and songs in my youth. In my teens, I began writing humorous one-liners about life I called JoJoisms. I’ve got well over 700 of them now. When I began homeschooling, I wrote books about communication skills and articles for homeschool magazines. And my most recent writing passion is here writing in support of those (like me) with chronic illness.
Now, when God gives you a passion for something, He doesn’t usually give you a clear path to success. You may have noticed that people who have gone on to incredible things have usually had a lot of struggles along the way. The Lord allows struggles: heartache, difficulties, and trails because many times that is exactly what it takes to get them done.
Have you ever heard of an accomplished pianist, a professional basketball player, a famous band, an accomplished actor, or a prolific writer who went from zero to hero in a straight line? Everyone has struggles to overcome on the way to where God leads them. It’s not the absence of trials that brings success; it’s what you do with them. It’s how you handle them, how you overcome them that defines you.
When God put a calling (writing) on my life, He factored in my limitations, my frailty, my stupidity, my fatigue, my pain, and my stubbornness! And my stubbornness is one of the reasons I didn’t give up my calling, my dream, my purpose, and my ministry! The other is Almighty God. Because…I AM an overcomer. …And I’m still writing!
Pain and Fatigue: One of the first things that began to impact my writing was pain. Arthritis, neuropathy, and Fibromyalgia made my fingers and wrists ache. In addition, God only made me 5′ tall so, when sitting at a normal-sized desk, I was unable to reach the keyboard properly.
My first adjustment was to sit on my legs as I typed. Unfortunately, after doing this for many years, it took quite a toll on my lower back as well. Not too long ago, we solved that problem by switching me over to a laptop computer that I was able to use on the couch.
As the fatigue from Fibro began to increase, I was forced to let go of some of my other online activities in order to have the energy to continue writing. I had begun a copywriting service only to abandon it shortly after it launched as I didn’t have the energy to pursue that stream of income. However, that was for the best as I felt the Lord leading me to write in my own voice. …And I’m still writing!
Broken hand: About six years ago, I broke my hand in three places after a roll-over car accident. My left hand was in a splint for months and when it emerged, I found that my middle finger had decided to hug my ring finger when I made a fist. Not thinking that this was a big issue, I decided not to have another surgery to fix it as I thought it only was an issue of aesthetics.
Not too long after physical therapy, I realized that I would have to relearn how to type! It took me several months to get decent enough to go back to my blogging and about a year for it to become natural. I still can’t snap my fingers with that hand, but fortunately, that’s not a skill that is required to write! …And I’m still writing!
Essential Tremors: A little over a year ago, I was diagnosed with Essential Tremors. That’s what doctors call it when they can’t find a cause for your shaking. I had always had what I called jitters, but I had been told it was a sugar issue. It’s true that it was worse when I was hungry, but in the last few years, those jitters had followed fatigue and stress as well as JUST BECAUSE.
Further, they had spread from my left hand to my right hand, both legs, and my head when it was particularly bad as well as internal tremors that feel like I’ve just been asked “Your money or your life!” As you might have guessed, it’s even more difficult to type when your fingers have a mind of their own.
Part of the challenge for me now is that I like to write my notes for an article or book in a notebook, but it’s a bit hard to read my writing–even for ME! Lastly, it takes me 10x as long to type (or mistype) or write than it used to. I’ve been known to backspace and retype something six times and still have it come out wonky.
Final Thoughts: The Lord’s call on our lives is still the same, even after the heartbreak of trials and the limitations of this life. It might not look like we expected it to, but it can be even better if we stay the course and cling to Him.
So, it’s been a bit of a journey to overcome these obstacles, but with God’s help, I’m adjusting. …And I’m still writing! What are you still doing with God’s help?
I’ve been talking about exercise and diet as it relates to chronic illness this month. Last week I talked about my quest to find something that would allow me to lose weight. This week I’d like to share a sort of discovery I made that added more energy to my day.
I was talking about trying to find an eating plan for weight loss with my aunt when she mentioned that she was told to have protein shakes in place of meals. After looking into the kind she used, I found that there was some research that suggested that older women should have more protein than the RDA recommended.
Here is just some of the of the information I found:
“The current recommended dietary allowance (RDA) for protein is 0.8 grams per kilogram (g/kg) of body weight a day for adults over 18, or about 2.3 ounces for a 180-pound adult. But research is showing that higher levels may be needed for adults age 65-plus.” according to an article on Feb 12, 2018, called: How Much Protein Do You Need After 50? – AARP“
Further, the above article goes on to say: “In our older years, we are at risk of sarcopenia, which is the loss of muscle mass, strength and function. The essential amino acids in protein are key nutrients for muscle health, but older adults are less responsive to low doses of amino acid intake compared to younger people. A 2016 study from researchers at the departments of Food Science and Geriatrics at the University of Arkansas found that this lack of responsiveness can be overcome with higher levels of protein consumption. The study says that protein levels in the range of 30 to 35 percent of total caloric intake may prove beneficial, although the researchers acknowledge that level could be difficult to reach for many people.
People with sarcopenia may need 1.2 to 1.5 g/kg of protein a day, according to the Mayo Clinic; that’s 3.5 to 4.3 ounces for a 180-pound adult. It is also important to eat the right type of proteins, including some that include the amino acid leucine, which has been shown to preserve body muscle. “Leucine is found in higher amounts in animal foods: beef, lamb, pork, poultry, fish, eggs, milk and products made with milk. It’s also found in soybeans and, to a lesser extent, other beans, nuts and seeds,” according to an article on the Mayo Clinic’s website.”
From anther: “Researchers say that the percentage of protein in the diet had a positive relationship with pain threshold, meaning that subjects who ate more protein had higher pain thresholds. The pain threshold is the point at which sensation becomes painful, and a low threshold is associated with fibromyalgia” . according to an article, Vitamin E, Protein May Improve Fibromyalgia Symptoms, from Sept. 6, 2015
Armed with this information, I decided to have a high protein/low carb shake instead of breakfast and a high protein/low carb protein bar for one of my healthy snacks. What I found surprised me! After a short while, I began to feel more energy! Energy I hadn’t felt in many, MANY years!
As I mentioned last week, I had asked my doctor for her ideas for losing weight and she suggested I limit my calories to 1200/day. When I began keeping track of calories, I found I was only eating 900-1000 calories/day. Simply adding more protein, I began to feel more energy.
Something else I found was that actually eating more calories (the right kind of calories/foods) helped my weight loss program with my health coach. This got me thinking that those of us with chronic illness/conditions might actually need more protein or certain foods or kinds of calories to have more normal energy levels. I’m no doctor and I haven’t been able to find articles about this, but I plan to talk to my doctor about this when I go and this is why.
How many people with chronic illness fatigue have trouble doing normal activities? How many who are having good energy days fall off the energy wagon when they attempt to do exercise or housework or walking?
I also have Essential Tremors and I have noticed that, when I’m especially shaky, I feel especially tired. I’ve also noticed that many of my hot flashes are followed by an immediate lowering of my energy level. What if those of us with chronic illness fatigue need a higher amount of protein or a higher amount of calories from certain foods?
Has anyone else had better energy by eating more protein or more calories from particular foods? Is this a thing? Could this help Fibro? CFS? What say you?
Check back here next week for a look at food and chronic illness.
As you’ve been reading this month, I’m a pretty odd duck. I hope you’ve been able to relate to at least one of the ways in which I’m not your average Jo…Jo. I hope it’s allowed you to feel less alone and brought some comfort to you that there is someone else out there who also doesn’t fit the mold…ANY mold!
If you just joined me here on Life Beyond Surviving and want to read the beginning of this series to see How Life Works on My Planet, how I’m Living the Weird Life, and get more acquainted with JoJo: A Space Oddity, just click on any one of those links. Today, my weird topic is all about how even most of my doctors thought I was weird.
Most of my doctors have thought I was weird over the years and now that I’m finally formally diagnosed with several things, it is no different now than it was then. Here are just a few of the chronic or health issues that scream JoJo is weird!
Hayfever, Schmayfever: When I was a teen, I began having sore throats quite often. Since my tonsels are pretty big normally, I thought I had to have them out. Nope. I never had them out as a kid like most people my age did. I still had mine, HUGE as they are, in high school. My mom took me to an ENT (Ear, Nose, and Throat Doc) who told me that I have mild hayfever.
Huh?! Since I never sneezed, only had a sore throat and he never elaborated, I found that highly improbable. How do you have hayfever if you don’t sneeze? I disregarded everything he said and went along my merry way for years until I was in my 40s and a new doctor explained it to me. I guess some people, weird though we may be, can have hayfever and not have sneezing, but only a sore throat! Who knew?!
Just Mono My Own Business: A malady most get during high school is called The Kissing Disease. Mono is something that knocks you out as a teen for a week or two. You get out of school and feel better fairly quickly I’m told. It’s not always from kissing. In high school, I think it’s usually just from sharing a drink or something with someone.
Anyway, I got it in my early 30s, if I remember correctly. I was working from home as a small business owner, raising a young daughter, and I didn’t know it at the time but I had Fibro. The doctor told me to just rest for a couple of weeks, but I didn’t have that luxury as a small business owner so I continued to work. It took me several months before I felt any better.
A Pox on Chicken Pox: Most people (my age) got Chicken Pox as a kid. In those days, when someone in the neighborhood got it, your mom would take you to their house and have you play with their child so you’d get it as a kid. That way, you didn’t get it as an adult when it is more of a problem or (in the case of men, can leave you sterile). Well, I never got it in all the times in all the years I had been exposed. My mom said it was probably because I had a mild case of it as an infant.
Fast forward to my mid-30s, I felt awful. I didn’t have any health insurance so I called the doctor who said I had Shingles, the adult version of Chicken Pox! I immediately called my mom and asked her how mild a case I had as an infant. She said I had two or three Chicken Pox marks. Two or three?! So, folks, in case you’re wondering if you can get Shingles as an adult if you already had Chicken Pox as a kid, the answer is YES!
Fabulous Fibro: Most of the people I talk to who have Fibro talk mostly about the pain of Fibromyalgia. Most of the memes on social media are about pain. For me, Fibro is much more of a lack of energy than pain. I have Fibro pain and I’m no stranger to pain. I had two kids with natural childbirth.
My Fibro pain is mostly controlled with a muscle relaxer I take at night that controls the pain through the day while allowing me to sleep a bit more at night. However, even when I had bad pain, I could usually muscle through it to get things done around the house. The energy drain during a flare is so severe that I sometimes cannot keep my head up or muster the energy to talk on the phone. Having to lay on a couch for hours or days severely limits your ability to DO anything.
As Fibro isn’t my only chronic illness, there are several other symptoms I have from other diagnoses that contribute to my fatigue.
1. Essential Tremors seem to take a lot of energy so, the more I shake, the more fatigued I get.
2. I’m still getting several hot flashes per day and it turns out that redistributing the heat in your body generated by a hot flash also takes a great deal of energy.
3. Insomnia means the body doesn’t get all the rest and rejuvenation it needs on a daily basis. After 20yrs, that may have a great deal to do with my lack of energy.
4. Finally, after gaining so much weight after my hysterectomy, I found myself using a great deal of energy just to do normal activities like walking around the grocery store while shopping.
Surgeries Surgeries Everwhere But I Still Have My Appendix: I think I stated before that I’ve had nine surgeries in my life. In all the surgeries I have had, I’ve never had the usual/normal things removed. I still have my tonsils and my appendix! I’m not sure if I’m waiting for a special time or I’m one of the ones who will die with her tonsil/appendix boots on!
Neurologically Nutz: Last, but not least, is the area of my life in which a doctor actually TOLD me to my face that I was weird! So, about a year and a half ago, I was finally diagnosed with Essential Tremors. I’ve had tremors in my hands for a long time, but they usually were attributed to being hungry/sugar levels being low. It turns out, I have tremors not due to any other known cause–which they now diagnose as Essential Tremors. I’m not sure yet what is so essential about them. I could certainly due without them!
While the doctor was examining me (and again at the next appointment when he was formally diagnosing me), he kept looking up at me and saying…”hmmm…” I asked him if I stumped him and he said my symptoms don’t make sense. You see, in addition to tremors, I had asked him about my smelling smoke that wasn’t there, feeling water drops on my legs that weren’t there, and feeling something touch the outside of my right leg when something touched the INSIDE of my right leg. He said they could be neurological, but it’s not something he usually sees, he has no idea why my body sends sensory signals the way it does, and I’m just weird.
And I appreciated that! It’s not often you find a doctor who will admit they don’t know it all and not accuse you of making it all up. Although, he DID say it was probably all in my head! ROFL And he’s probably right about that as a lot of the issues that are yet unexplained appear to be neurological.
So, there you are. JoJo is weird–even in all the diagnoses I have that many others share. Does that help make you feel a bit less like a weirdo out there? Can you relate to any of these or have similar things that are different about your experiences? Well, I’ve got one more post for you next week that might help too so come on back next week, ya hear?
