8 Mistakes Most Spoonies Make

If you haven’t been around here very long or your newly diagnosed, you may not know what a “spoonie” is.  Allow me to explain.

mistakes most spoonies make

The spoon theory was written by a woman named Christine Miserandino. She happened to be out to eat with a close friend who asked her what it felt like to be her, to be sick. Her explanation to her best friend has become what we now call “The Spoon Theory.”  You can read about it here on her website, or if you’d rather watch a video, here ya go….

 

The gist of the story is that we all have a certain amount of energy we can use in a day. Unfortunately, for those with chronic illness (spoonies), our energy reserves are low and depleted quickly.

Learning how to pace ourselves and balance our physical exertion can be critical to getting anything done in the course of a day. Even if that one thing we get done is to simply survive.

Over the past few years I’ve watched as others navigate their own journey with chronic illness. Just like with anything in life, some do it better than others. I’ve noticed there are a few mistakes that most spoonies make at one time or another. Especially in the early years of their illness. Me, well, I’ve made them all.

Here are 8 mistakes most spoonies make.

 

  1. They don’t allow themselves enough time. Whether it’s how much time you plan for getting ready to leave the house or how long it will take to run a few errands – your time schedule has changed.  Your body can no longer keep the pace it once held. Allow yourself extra time to sit for a bit, take a nap, recuperate, etc.

 

  1. They leave home without their meds. When you leave the house you may not plan to be gone very long, but things come up that might change the direction of your day, and you don’t want to be caught without your meds. I did a review of a cool product called PillSuite that I’ve found works great for keeping a day’s worth of meds in my purse at all times. Whatever you choose, a ziploc bag or a bejeweled pill box, carry your meds with you!

 

  1. They forget to keep creature comforts handy.  Things you might have taken as a creature comfort when you were healthy might very well be the key to get you through whatever activity you’re attempting. Have a bottle of water with you at all times – that way if you’re out and it’s time for your meds you don’t have to take extra steps to find a drink. A snack of some sort like an energy bar, small bag of nuts or a piece of fruit is always good to have on hand. It can help to keep your energy up and your blood sugar stable as well as give your stomach something to do so you don’t take your meds on empty.

 

  1. They blindly trust their doctor. I know, I know. He has the medical degree and the $400,000 student loan to prove he knows more than you.  I get it. I didn’t go to college for medicine either. But, he hasn’t spent the past 1, 5, 10 or 30 years in a chronically ill body with your specific illness.  That automatically gives you a bit of a upper hand. No one cares more about your health than you do – it’s going to take some homework, but do it – be a well-educated patient. Get a second opinion, search the web, read some medical journals. I felt overwhelmed at first and didn’t understand all I was reading, but in time, you learn more and more and you’re able to take part in drafting the best healing and self-care regimes for your body.

 

  1. They care too much what others think. When you’re too worried about what someone will say you’ve lost the focus off what your body is trying to tell you. You can’t make anyone believe you or become more compassionate. All you can do is live honestly and share what you feel comfortable sharing about your illness and the rest is up to them. Unfortunately, some won’t get it unless they get it.

 

  1. They hide too much from others. We become award winning actors, don’t we? I think this piggy backs right off #5. We’re worried what they’ll say so we try to hide our symptoms and struggles. This will only make matters worse. You don’t have to announce every pain, stomach issue, etc, but there is also the other extreme of not sharing enough.

 

  1. They spend a good day catching up on work instead of having some enjoyment. This one has been the hardest for me. The guilt of not being able to keep up the house the way you used to, or your workload at your job, can be overwhelming and you may have to spend some energy catching up. But burning yourself out due to lack of rest and relaxation will compound your symptoms and make your flares and down time last longer. Give yourself a break. Do something you enjoy when you’re having a good day. (And no, binge watching NetFlix because you’re flaring too bad to move does not count as rest and relaxation!)

 

  1. They excuse bad eating or exercise habits. Have you ever noticed how some of the most pleasurable foods aren’t good for our bodies – at least not in the quantities we often eat them? I’m so guilty on this one! We’re having a pity party because we had to cancel plans for something we were looking forward to and now we’re stuck at home, miserable. To make up for our loss, we reach for a quick fix. Something salty, fizzy or sugary (you pick!). Food was meant to nourish our bodies, not make up for bad days. Poor eating habits and lack of movement will make your conditions worse. To top it off, it may also bring on more problems you don’t already have like diabetes, obesity, depression and increase your risk for other diseases. Do your body some good – feed it based on need and move it!

 

Which of these mistakes have you made throughout your chronic life? What mistakes have I missed?

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Where To Turn For Help When You’re Chronically Ill

Finding help when you’re chronically ill can be a daunting task. There’s not just the difficulty of finding the help but also the problem of having the ability to pay for it.

help when you're chronically ill

Here a list of 19 places to check out that offer free or affordable help when you’re chronically ill:

 

LOCALLY

  1. Your local chamber of commerce. They might have a list of organizations that offer services you may need.
  2. Your local churches. Often they have services available like a have a meal donation system or they may serve as a meeting place for local organization they can put you in contact with.
  3. Dial 211. Some communities have a 211 operator available that can connect you to local service groups.
  4. Local youth programs. Many youth programs will offer services free of charge as a community project.
  5. Department of Health and Social Services. Your local branch will be able to direct you to services based on your qualifications.
  6. Your local Council for the Aging or senior center. If you’re over 55 you may qualify for special assistance.
  7. Your local Independent Living Center. They may be able to provide help or lead you to the right resource.
  8. Your doctor. Ask your doctor if he knows of programs or organizations that can provide support.

 

HELP NAVIGATING SOCIAL SECURITY DISABILITY

  1. Allsup, Inc. Helps to submit SSDI paperwork, offers guidance through the appeals process and assists in hearings for denied claims. Only paid if client collects. http://www.allsup.com/

 

US NATIONWIDE PROGRAMS

  1. Salvation Army. They offer various services that might meet your needs. http://salvationarmyusa.org/usn/ways-we-help?_ga=1.8534258.677331659.1465920960
  2. Meals on Wheels. They deliver hot meals to disabled or homebound individuals at an inexpensive rate. http://www.mealsonwheelsamerica.org/
  3. Independent Living Research Utilization (ILRU). Nationwide network that can provide a number of disability-related services and referrals. http://www.ilru.org/

 

INSURANCE

  1. Your health insurance provider. It’s worth a call to see if there are services that may be covered by your insurance and a list of approved organizations.

 

PROGRAMS FOR LOW-INCOME AMERICANS

  1. Center for Health Care Strategies. Promote quality health care services for low-income populations and people with chronic illnesses and disabilities. http://www.chcs.org/
  2. Department of Health and Social Services. Your local branch will be able to direct you to services based on your qualifications.

 

PROGRAMS SPECIFICALLY FOR CHILDREN AND TEENAGERS

  1. Family Voices. Promote quality health care for all children and youth, particularly those with special health care needs. http://www.familyvoices.org/

 

PROGRAMS SPECIFICALLY FOR THE ELDERLY

  1. Your local Council for the Aging or senior center. If you’re over 55 you may qualify for services they can put you in contact with.
  2. The American Geriatrics Society. Dedicated to improving the health and well-being of all older adults. http://www.americangeriatrics.org/
  3. Foundation for Health in Aging. Offers resources to older adults based on their special needs. http://www.healthinaging.org/

 

FAITH BASED MINISTRIES

  1. Joni and Friends International Disability Center. Has many area ministries that operate across the United States.  http://www.joniandfriends.org/area-ministries/

 

If you know of a group or organization that should be added to this list, please contact me by email at kim@graceissufficient.com.

 

**This is in no way an exhaustive list and a listing on this page does not constitute an endorsement on my part. Please research these groups and use care and discretion when joining with health care support teams.

 

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How Can You Make A Difference When You Have A Chronic Illness?

Do you think it’s possible? Can you make a difference when you have a chronic illness? After all, we’re the ones that need help. You can find articles all over the internet explaining how we’d like to be treated or taken care of but there isn’t much out there about the difference we can make in the lives of others.

can you make a difference when you have a chronic illness

I don’t know about you, but I don’t want to be defined as the “sick” friend who needs help from those around her but never gives anything back in return.

I shared this video on Facebook the other day, and in case you haven’t seen it, it’s worth the watch.

It’s nothing extraordinary. No one saved from a burning car, no gorilla, no tiny child slapping his mother while others laugh. Nope, it’s kinda simple actually. It’s just a man who looked out his window and saw another person as another soul and not just an object he looked past. He doesn’t have a chronic illness, at least not that I know of. But he does have a compassionate heart.

 

he's having a bad day at work

His simple act of kindness for another person is something we can all emulate.

We all have the ability to do something kind for another person.

If you happened to follow along with our book club of the Choose Joy book, Sara Frankl was a beaming example of how a person with a debilitating illness, literally bedridden and unable to leave her home, was able to show kindness to others and make a difference in their lives.

Maybe we don’t have the money to go buy a bunch of flowers for someone, that’s ok. We do have the ability to smile or say a kind word.

We have the ability to pray or send an encouraging note.

We have the ability to look beyond ourselves and our illness briefly to show God’s love to another.

 

What are ways you’ve been able to show love and compassion for others, even in the midst of chronic illness? I’d love for you to share it in the comments below. We can make a difference!

 

 

 

 

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My Personal Review of Quell Wearable Pain Relief

**I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the Quell device was a gift, all opinions in this review remain my own and I was in no way influenced by the company.**

 

If you look up the word quell in the dictionary you’ll find it means “to put an end to, typically by the use of force.” When you’re talking about life with chronic pain the word quell sounds like a life changer!

quell wearable pain relief

 

In April I received a package in the mail. It was for a new campaign I had volunteered to take part in through the Chronic Bloggers Network. It happened to come at a good time. I had recently decided to cut in half the amount of meds  (gabapentin) I take for my fibromyalgia. The side effects I deal with had just worn on me to the point where I was literally choosing increased pain over the side effects, and increased pain is exactly what I got.

 

I decided to start wearing the device for at least six hours a day and see how it affected my increasing pain. 

How does it work?

The Quell unit is a small, thin black device that slides into a black leg band they provide. It’s comfortable to wear and fits under my jeans so I had no problem just leaving it on for the most part of my day.

It works by stimulating sensory nerves in your calf that carry pulses to your brain and central nervous system. Together they trigger your natural pain relief system that blocks the pain.

When I turned it on for the first time I was a bit concerned it might hurt. After all, it’s advanced neurotechnology that’s being delivered by way of electrodes wrapped around my leg. I wasn’t sure what to expect. What I found was that it starts out at such a low intensity it’s barely noticeable. Once you do the initial calibration, they recommend you let it run for two minutes before you customize the intensity.  I played around with the power until it was very slightly uncomfortable, but not painful. The best way I can find to describe it is that it feels a bit like when you’re foot is asleep and you tap it on the ground – a slight tingle but not painful. This setting seemed to work well and by the time the first hour long session ended I could tell my pain had decreased some. That’s right, Ms. Cynical was thinking this just might be a product that would work!

As I’ve tested the device over the past two months I noticed that on days where my pain is higher I can increase the intensity of the therapy session and it, in turn, increases the amount of pain it controls.

TMI warning here! The day before and first day of my periods are usually very high pain days for me. I guess my body thinks it’s giving me a heads up and needs to alert me of my hormonal cycling. Over the past year the pain during these days has been getting worse. So I decided, what better time to put the Quell to the test?! It made a huge difference. It decreased my overall pain and even decreased the intensity of my menstrual cramps. Not sure the company wants to be the poster child for period relief, but it made such a huge difference for me I thought I needed to mention it. 🙂

There’s a very convenient, free app you can download for your Android or Ios smartphone. From this app you’re able to turn the device on and off, increase or decrease the intensity as well as watch a series of tutorial type videos that will answer about any question you might have. The unit works fine without the app and the videos can be found on youtube, but it does make using the device very simple.

QUELL app screen shots

The best part of the device is that you have the power to control the intensity of the therapy sessions. If your pain is higher one day, you can simply increase the intensity for better pain relief.

I haven’t used the device while sleeping yet but it is safe to wear while in bed and also has three settings just for sleep.

  • Bedtime only – therapy cycle only last while falling asleep and turns itself off once you’re sleeping
  • Gentle overnight – therapy sessions continue through the night but at a lower intensity than your daytime setting
  • Full power – sessions will continue through the night at the same intensity you have it set for during the day

The Quell device is not just for fibromyalgia!

The neurotechnology works with multiple diseases and conditions that result in life with chronic pain. If you CLICK HERE to their youtube channel you’ll see a few testimonials from a variety of people with differing causes to their chronic pain.

The only negative I have is that the device isn’t covered by insurance and I know the price tag will mean some of you aren’t able to try this as an option for your pain. I would love for more varying means of controlling pain to be covered the same way they’ll cover narcotics. I want to see people be able to pursue numerous options for pain relief – medical, supplemental, life-style, and devices like this.

Want to learn more?

Jump over to the QUELL website for more information!

A friend of mine, Donna from Fed Up With Fatigue, posted about this device on her blog as well. She conducted an interview with the Marketing Manager for Quell and it covers quite a bit. If you’d like more information you can CLICK HERE to read her post.

For any of you would like to dig deeper into the technology and medical science behind the Quell device, you can CLICK HERE to read a 12 page white paper written by Shai N. Gozani, M.D., Ph.D. It should answer any of the more technical/medical questions you might have!

 

 

 

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Whole Foods and Herbal Supplement Program for Chronic Illness

It's about to get real around here!

**I will be receiving this product as part of a product review through the Chronic Illness Bloggers network. Although the product will be a gift, all opinions in these reviews remain my own and I am in no way being influenced by the company.**

 

That’s right REAL.

Real honesty, real work, real dedication, real supplements and real food.

whole foods and herbal supplement program for chronic illness

I have a confession.  I’m a sugar-aholic.  I don’t mean this as a joke and I’m not making light of other addictions. I truly believe sugar addiction is real and we need to begin addressing it as a real problem. It’s not as easy as saying “step away from the Twinkie” and it can cause life changing disease and illnesses that can rival that of cigarette smoke.

When I started getting sick the first illness to arrive came by way of a hormonal imbalance – polycystic ovarian syndrome.

Then, over time, chronic and adrenal fatigue set in.  I ran to a quick fix. (Ain’t nobody got time for a long term fix between kids, husband and a full time job – or so I thought.) I ran to cola to provide sugar and caffeine to get me through the day.  As the sugar crash would come, I’d just fill my glass again.

Then more chronic illnesses joined and choked the life out of me. They left me unable to do the things I previously enjoyed.  I went to colas and sweets even more as a way of enjoying part of life when I felt like so many other forms of enjoyment had been taken from me.

The downhill spiral had been set in motion and the sugar consumption only made my illnesses worse and, possibly, even caused a few more.

Now, years later and roughly 50 pounds heavier with four chronic illnesses under my belt I’ve been presented with an opportunity. I’ve been asked to participate in a 3 month whole foods and supplement program for chronic illness from Vital Plan and I’m anxious to receive my supplements. I’ve already received my introductory emails for the six month online course, resource material, diet plan and recipe book and I made a trip to the grocery store to stock up for tomorrow’s kick-off!

It’s an opportunity to reset and restore my body to health.

Here’s the real honesty part.  I’m not looking forward to it.  I’ve never been completely dedicated to a long term whole foods and herbal supplement program for chronic illness.  Oh I’ve tried quite a few things for a short time and have supplements I take daily, but as soon as the exhaustion gets to a certain point I run to my trusty friends – sugar and caffeine.

The reason I haven’t adapted to anything long term is because I know it’s going to get worse before it gets better and I don’t want to face “worse”. When your body is addicted to sugar and processed foods you’re going to go through some withdrawls.

I want gentle, enjoyable, and sugary. I want one pill that fixes everything and allows me to eat whatever I want. But life doesn’t work that way does it? Anything that can possibly bring healing to my body is worth the work.

Here’s a few reasons why I’m taking this very seriously and going to be dedicated…

 

  1. I owe it to you.  It’s pricey and money can be hard to come by when you’re ill.  The burden of financial pressures from not being able to work, doctor bills, meds and necessary supplements make this kind of program a serious investment and I want to be able to give my honest opinion as to whether or not you should try it yourself.

 

  1. I owe it to myself and my family to try this diet and nutrition route. They are a great support system for me, but let’s face it, our family feels the weight of our illnesses too.

 

  1. I owe it to my future. I feel my symptoms getting worse as I age and maybe this will slow down the progression. It’s a little scary to think of what kind of shape I’ll be in ten years from now if I don’t make these changes.

 

  1. I owe it to Vital Plan They deserve an honest review of their products by someone battling chronic illnesses and they trust me to provide one.

 

I’ll update you at least once a month by way of a more detailed blog post, but for the daily nitty-gritty, I’ll be posting updates to Facebook and Instagram. If you aren’t following me there you’ll want to click over and follow. I’ll be trying to find ways to make it easy to stick with the program and I’ll share them with you – along with any tasty recipes I come up with! And yes, if I cheat on the plan or fall off the wagon I’ll share that as well.  I don’t expect this to be easy by any means – it’s going to be a lifestyle change.

The good people at Vital Plan only asked for a review once I’ve completed the program but I think it might be more insightful for you if I take you on this journey with me. Plus, I may just need your support and encouragement to get me through!

You can check out Vital Plan and the Restore Program I’ll be participating in for fibromyalgia by clicking here.

I’d love to hear if you’ve tried Vital Plan or a similar program and what your results were. 

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**This post was added to the Friday LinkUp over at BeingFibroMom – CLICK HERE to read other great posts from other contributors!

Self-Care Goes Beyond the Physical

**This is a sponsored post for Self Care Catalysts. I have been compensated through the Chronic Illness Bloggers network. All opinions remain my own and I was in no way influenced by the company.

 

I’m a huge proponent of self-care. I’ve already written about self-care in various posts and you can click the button at the top of the blog if you’d like to read them.

I’ve also been using this great app called Health Storylines that’s free in the Google Play or Apple App Stores. It has areas where you can track your mood, vitals, medication times, a food diary, and more. It also has a handy journal section that you can use to record questions you want to remember to talk to your doctor about at your next appointment. I love that! I may forget to grab a notebook as I head to an appointment but I never forget my phone! You’re going to want to check it out – so you can click here to find out more.

But before you click over there I wanted to take a minute to talk to you about spiritual self-care. Our chronic illness may have forced us to exercise physical and emotional self-care but feeding our soul doesn’t seem to hit the top of the list like the others.

Spiritual Self-Care

I’ve been reading a number of articles addressing the self-care movement and I’ve been a little disheartened when the topic is painted as a bad thing, self-ish or anti-God. We all have a responsibility to decipher the good sources of information from the bad but you don’t throw out the baby with the bath water, as the old saying goes.

I love this quote by Marshall Segal:

The power of effective habits is not in the seclusion, or the silence, or the journal, but in Whom you find in the habit. If you only find yourself, then your weaknesses, failures, and stresses can only be amplified and perpetuated. But if you find more of God, you have found resources far beyond yourself to address your deepest, most desperate needs.

As a Christian I don’t see the self-care movement as an attack on my faith. I believe my Lord is very concerned with my mental and physical well-being but He’s more concerned with the spiritual. So spiritual self-care needs to be our foundation.

It may be the “self” part of self-care that trips people up and makes them feel it’s something we’re fulfilling for ourselves. I look at the “self” part as being the work I can actually do to care for those areas of my life – not that I’m taking God out of the equation at all. Just as an example – God has met my need for food each day, now it’s up to me to eat my veggies instead of nosh on three Milky Ways and a Kit Kat and call it dinner. See what I mean, we do have a responsibility when it comes to our own care and when it comes to the spiritual side, we have the responsibility and privilege of drawing from an inexhaustible resource.

I wouldn’t be able to navigate life with chronic illness without my faith. Knowing I’m not alone or forgotten in my struggle can make a huge impact on my day and be the very thing that gives me the strength I need to continue.

In Matthew 11:28-30 Christ Himself calls for those who are weary and heavy-hearted to come to Him for rest. He understood our need for spiritual self-care and took it upon Himself to be our source of re-charging.

Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.  For my yoke is easy and my burden is light.

I know on the darkest days when your illness flares and your mind won’t focus it’s hard to take the time to feed your soul. Let me share with you a few ways you’re able to exercise spiritual self-care on those hard days.

 

  1. Take time to search for the beauty in God’s creation. When Christ was teaching how to pray He started with praise toward His Heavenly Father. When you’re having a hard day and you can’t even focus to read the Bible or pray, just open your eyes to the world around you and praise God’s creativity and power in nature.
  1. Pull out a journal and list something you’re thankful for. If you need some ideas you can always click over to Ann Voskamp’s website where she offers a daily list of ideas you can start with.
  1. Serve the needs of another. When you’re chronically ill you can feel like there isn’t anything you can do for others. Reach out to someone to see how they’re doing and offer to pray with or for them. Perhaps write out a prayer as you pray for them and send it to them in an encouraging card.
  1. Turn to uplifting music. Turn on a Christian CD or radio station and enjoy the way music can speak to your soul. Make a play list for those bad days. Rachel from Cranberry Tea Time has created an awesome play list you can find HERE.
  1. Let go of things that are holding your heart and mind hostage. Forgive someone who has wronged or hurt you. Remember, we forgive others because Christ has forgiven us. We may never be able to reconcile the relationship but forgiveness will be the catalyst to release the anger and bitterness you may be holding.
  1. Develop a journal of verses that speak to your soul. Here’s a few to start…
  • Are you anxious or fearful? Philippians 4:6-7   Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God,which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
  • Need reminded that your sins have been forgiven as soon as you accept Christ’s sacrifice? I John 1:9  If we confess our sins, he is faithful and just and will forgive us our sins and purify us from all unrighteousness.
  • Do you feel like you’re about to buckle under the weight of your illness and life circumstances?  Isaiah 41:10 So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you;I will uphold you with my righteous right hand.

Feed your soul beyond your own abilities – look to the only resource that will never be exhausted.

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11 Summer Self-Care Tips for the Chronically Ill

It’s SUMMER!!!!!

Summer has always been my least favorite season. I know, I’m weird. Most people tend to love the heat and sun but I’ve never been able to handle the heat very well. It drains what little energy I have and I burn to a bright pink in record breaking time.

So why did I use exclamation points when I announced it was summer? I’ve learned a few things over the years that have made summer more enjoyable and I’d love to share them with you.

summer self-care tips for the chronically ill

11 Summer Self-Care Tips for the Chronically Ill

  1. Stay hydrated. By the time you feel thirsty you’re already starting to dehydrate.  Infuse water with fruit for a tastier version or eat foods containing lots of water like watermelon or cucumbers.

 

  1. Use your air conditioner and fans. Don’t worry if the neighbors haven’t started using there’s yet – there is no award for toughing it out in a sweltering house. Be sure you’re comfortable.  if you don’t have an air conditioner and it’s getting too toasty at home you can go sit at a coffee shop with a good book and enjoy their air for a bit.

 

  1. Wear loose fitting, light colored clothes.  This is one of the keys for avoiding heat stroke in the summer according to the Mayo Clinic. Dark colored clothes will absorb the heat and increase your risk of heat stroke.

 

  1. Create a summer bucket list. Make a list of a few things you’d like to see or do this summer. That way, if you wake up feeling like you could handle a short outing you have a list ready to go and you don’t spend precious energy on searching and deciding what you’ll do that day. All that days energy can go right into your bucket list item. Taking time to play is so essential for your over-all well-being. Find out where your community posts the local events – you might find nights where they have music in the park or other similar things you might enjoy.

 

  1. Take technology breaks. When you’re chronically ill you tend to spend quite a bit of time on your computer, tablet or smart phone. Be sure to turn off the screens and allow yourself to get outside and breathe some fresh air and soak in some sunlight! If you’re unable to get out of bed, ask a family member or friend to place a hanging basket, hummingbird feeder or flower pot outside your window so you can enjoy the colors and the birds that come to visit.

 

  1. Go sit by a lake or some body of water for a while – even if it’s a swimming pool in your backyard. Watching the ripples across the top of the water and the movement of the waves will bring a calming effect to your mind, body and your soul. While you’re there, take a few moments to thank God for the amazing creativity He used when He created our world!

 

  1. Eat seasonal foods. It’s great for your body when you eat local seasonal foods. Enjoy fresh fruits as your dessert and benefit from the nutritional values they bring. Nothing says summer like a big bowl of fruit or veggie salad for lunch!

 

  1. Read a great book. If you normally spend quite a bit of time reading non-fiction or medically based articles try grabbing a great fiction book and get lost in a story. Take it with you to the water’s edge or your backyard and double up on the relaxation!

 

  1. Find a new summer recipe to enjoy. This turkey burger from Joy Bauer’s website is phenomenal. I’m sure I’ve shared it before. When I’m having a good day I’ll make a triple batch of these babies. They freeze really well and can be heated back up in the microwave in 35 seconds!

 

  1. Pack your car. Throw a few things in your car so you’re ready for anything. A few things to include:  A jacket or throw blanket – yes, for summer. If you go to visit a friend or relative that keeps their air at the Igloo setting you’ll be prepared! A folding camping chair – if you’re out for a drive and your family decided to stop somewhere you’ll be able to sit and conserve your energy. A few snacks – toss a bottle of water and a protein/granola bar in an insulated bag. You can grab ice at a gas station while you’re out to keep the beverages cool. A hat and sunglasses – I never remember to grab these items until I’m out and having to shade my eyes with my hand. Grab a cheap pair and toss them in your car. Sunblock – I know, that one goes without saying.

 

  1. Maintain a self-care attitude. Give yourself a break, don’t compare yourself to everyone else. Listening to your body and doing the things that are best for your symptoms will give you the best possible summer!

Your turn to share! What’s your favorite self-care tip for summer?

 

 

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D-Ribose for Chronic Fatigue and Fibromyalgia

I get asked all the time if there is one supplement or medication I use that I feel I benefit from the most. The answer: I use D-Ribose for Chronic Fatigue and Fibromyalgia. My other medications have positively impacted my health; however, d-ribose has given me the greatest over-all results.

d-ribose for chronic fatigue

 

What is d-ribose and how do your cells produce energy?

Each cell of your body has a structure called the mitochondria. It works to produce the energy that your body needs.

D-Ribose is a form of sugar that is produced by your body and used at the core of your cells (mitochondria) to provide energy and recovery from activity.

It’s the key ingredient used by your body to produce ATP (adenosine triphosphate). ATP works to transfer energy throughout your body.

In a healthy body, d-ribose is produced adequately by your own body to meet your energy needs.

The energy problem with chronic fatigue and fibromyalgia.

If you think about how an average “healthy” person functions – they will participate in events or activities that drain them of their energy. After a day or two of rest their body has recuperated and they’re able to continue with life as normal and participate in energy depleting activities again.

In a patient with CFS/Fibro – after they’ve depleted their energy by participating in activities their energy reserve doesn’t replenish. Instead, their energy reserves are exhausted and their body doesn’t recuperate because the mitochondria doesn’t function properly.

They are left with drained energy levels that make them constantly feel like they’ve just completed a marathon.

Quite a few symptoms can be linked to this mitochondria dysfunction, such as:

  • lower levels of neurotransmitters causing brain fog and making the overall thinking processes harder
  • low energy production which results in muscle fatigue and insufficient energy recovery after activities
  • persistent pain
  • lack of energy
  • stiffness

How do you use d-ribose for chronic fatigue and fibromyalgia?

I was first introduced to D-Ribose by Dr. Teitelbaum’s book Fatigued to Fantastic.

In the book he explained his clinical study. Patients diagnosed with CFS and/or Fibromyalgia were given 5 grams of d-ribose three times a day for three weeks. The powdered supplement was mixed into any beverage or sprinkled on food. (It dissolves clearly and quickly. Taste is barely noticeable – if anything, it’s slightly sweet.)

Patients reported improvements in five categories: sleep, energy, over-all well-being, mental clarity and pain intensity. 66% of those in the study reported a 45% increase in their energy and a 30% increase in their over-all feeling of well-being.

After the three week “loading” period was over, patients continued taking 5 grams of d-ribose twice a day to maintain the benefits.

Other studies have been conducted, all with similar results.

My personal experience with d-ribose.

I have been taking this supplement for quite a few years now. I must admit, I go through times where I’m feeling a bit better and I think I can do without. But, it always catches up with me.

It is now part of my daily supplement regime and I take it twice a day. (In the beginning I took it three times a day for three weeks for the “loading” period.)

It’s pretty inexpensive and can be found over-the-counter at places like GNC and Vitamin World. I have also ordered it online through Amazon. I’ve used various brands and they’ve all had the same results for me. All the brands I’ve tried contain a 5 gram scoop to help assure a proper dosage amount.

I haven’t had any negative side effects at all. Some people report a mild headache or stomach ache.

WebMD offers a list of patient reviews you could check out.

As far as drug interactions – the only noted one would be with insulin. D-ribose can lower your blood sugar. You can read WebMD’s list of drug interactions here.

 

Be sure to talk with your doctor!

Whenever you start a new supplement you should always talk to your doctor first.

He/she can inform you of any side effects or drug interactions you need to be aware of.

 

**This post was also shared as part of the Chronic Friday Link-up over at Being Fibro Mom

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