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Chronic Illness Resources

Please note: This post may contain affiliate links. It was also updated and reposted on 10/12/19. Thank you.


I’ve been wanting to do a sort of round up post talking about the various resources available through the Zebra Pit. As you know, I’m always collecting resources for my posts and such and I’ve begun collecting everything so you can access it, too. We’ve also been growing like mad, so I want to make sure that new visitors know where to find everything. This post will let you know all the ways you can do that and just what we offer on each social media platform. It’s also a great opportunity to brag a bit about being named a MUST READ BLOG in 2019 by Morgan, who runs Brains and Bodies Blog!

ZP a Must Read Blog in 2019

I was so honored to  recently have the Zebra Pit named a must read blog for 2019 by Morgan, who also has and writes about Ehlers-Danlos Syndrome. Here’s what she had to say about the Zebra Pit:

Brains and Bodies Blog Review
From “10 Must Read Chronic Illness Blogs in 2019” by Morgan, Brains and Bodies Blog.

Thanks so much, Morgan! I feel truly blessed by being included! The Zebra Pit was named among some of my own favorite blogs, while the list still managed to introduce me to a couple new ones. Be sure to check out her post to see who else she selected and look through her work while you’re there. I think you’ll like what you see: Brains and Bodies – 10 Must Read Chronic Illness Blogs in 2019

On Blog Resources

The Zebra Pit has been putting out blogs for over 4 years and now contains over 300 posts! No, not all of them are eyes-glued-to-the-screen-pulitzer-prize style writing. Some are inconsequential rambling and some are even downright bad. I suffered from much worse cognitive issues when I was first starting out; my writing took a huge hit during that time. It’s part of why I chose to go by a moniker. But those days are long since past and hopefully they’ll stay gone a while.

There’s also a lot of good stuff. Great stuff, in fact, and it’s not always easy for me to admit when I’m proud of something. I reshare and repost the good stuff all around the net so people who have never seen it before get a chance to read it. I believe in what I do here and I hear more and more on social media that my posts are helping people uncover long undiagnosed conditions and ways to treat them. It’s great motivation to keep writing and sharing and updating my work.

But you don’t have to sit idly by and wait for something good to come along on one of my social media streams. I maintain primary or static pages that list my work by category or section and I do my best to keep my pages well organized and up to date. Here’s how to find what you’re looking for:

On a Computer

Links to the page sections are listed in a menu at the top of the page:

Screenshot of the Zebra Pit main menu

On a Tablet or Smart Phone

The Main menu is hidden in a pop-up menu at the top of the page that’s symbolized by a white box with three lines on it:

Where to Find the Zebra Pit's Main Menu
The yellow arrow indicates where you click to access the main menu on mobile devices.

When you tap the box, the menu opens to reveal the categories you can choose from:

Screenshot shows the main menu expanded in a pop-up view on a mobile device in a web browser. It lists the following categories: "About; Recipes; Contact Us; Medications; Health & Wellness.
The Main Menu open on a mobile browser (Mozilla Firefox)

Categories

There have been a lot of changes to the Zebra Pit recently and our categories are no exception:

Our content catalog has grown, so of course our static content pages had to grow with it. Our category pages for now broken out in the following way:

  • Conditions – All our health and wellness content by condition. Looking for the latest news on Ehlers-Danlos Syndrome or MCAS? They each have their own sections, along with all the other conditions we cover.
  • Product Reviews – This section includes all of the health and wellness devices and books we’ve reviewed on the Zebra Pit.
  • Medications – This is really more supplements, vitamins, minerals and OTC’s, but it’s where you’ll find everything we’ve reviewed and discussed in these categories.
  • Diets & Recipes – Whether you’re looking for general nutrition information, instructions for specialized diets or just a great recipe for some gluten free stuffing, you’ll find it here.
  • Movement & Therapies – Fitness information and body work tips for chronic warriors, from pilates to fasciablasting.
  • Spoonie Arts and Culture – Looking for something to read, new ideas to get your creative juices flowing or something to tickle your funny bone? We’ve got it!

Search for Content

Of course if all else fails, you can also do a search by keyword! There are two search boxes for your convenience, located at the top on the right side bar, or in the bottom footer area, where you can also find posts sorted by topic.

Off Blog Resources

I’ve been thinking about the fact that if you don’t follow me anywhere on social media, you probably miss a lot of quality content. In addition to the blog, which I save primarily for my writing and that of the occasional guest blog or reblog that’s strictly on topic for ZP, there are many other ways I put out news, information, other blog articles, general updates about my life and so forth. I do different things on different social media outlets, so I’ll cover each one in some detail. To follow me on any of these social media outlets, simply click the icon to the left of each description or the in text link.

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If you’re looking for the general life and health updates I used to do on here, I’ve started doing that sort of thing once or twice a week on Instagram, where I also share memes of encouragement, education, awareness and inspiration. It’s not unusual to catch me on there waxing poetic about life, disability, personal growth and mental health. You know, just the light stuff. I didn’t purposely set out to divide things this way, but it works well and saves the blog space for health and wellness topics. I’ll still write personal essays to post here occasionally. They’re just usually longer, more quality stuff than what I usually give IG. You can follow me on IG, here. When it works, my Instagram thread gets delivered to my Facebook page and Twitter feed, though with Twitter it’s not direct (you have to click through to see the image on IG).

Facebook-logo

Facebook is a great place to follow me, because absolutely everything I share, barring my Twitter interaction, gets shared to our Facebook page, with one caveat. I post just about anything that comes across my path of interest; research, articles, videos, blog posts, memes, posts, anything that’s helpful to spoonies. And of course my IG page and all Zebra Pit posts are funneled through this feed as well. Now for the caveat; if you follow me on Facebook, be sure you go into the follower settings and choose *see first. Otherwise, you’ll be lucky if you see any of what I post:

Facebook Follow First

There’s also our adjoining Facebook group, which seems to be growing at a tiny rate despite my terrible penchant to forget it for weeks at a time. I always respond when people post, but I admit, I’m not a very good facilitator. I really could use some volunteers who are about 200% more sociable than I to help me with this sort of thing.

Twitter Logo

I do a lot of the same thing on Twitter, but the content varies a little. I don’t always get everything to Facebook that I post on twitter and vice versa. It seems my attentions often get divided, but I do my best to check in and share the most important things everywhere, every day. Follow me here on Twitter.

Pinterest Logo

My Pinterest page is really quite amazing to me. It’s hard to believe I just began with it last fall and have over 650k monthly viewers and growing. I have nearly 100 boards on a variety of health and wellness subjects for spoonies. I even cover a few things I don’t cover here, but are of growing interest to me, like all natural and organic DIY hair and body products. I believe I’m becoming mildly obsessed (shhhh….just let it happen). And just think, last summer I was certain I could go my whole life without ever knowing what a pin was! I encourage anyone with chronic illlness to follow me, as I share a ton of information about many, many conditions on there.

If you’re a chronic illness blogger, be sure to join my group boards and Tailwind Tribe, if they suit your subject matter:

  1. The Zebra Pit Spoonies Group Board has almost 50 members. Come pin with us! Open to anyone with a chronic conditions of any kind who maintains a website or blog.
  2. My Poetry, Short Stories & Writer’s Group Board is open to any and all bloggers who focus on the topics of creative and freelance writing.
  3. My Tailwind Tribe, Medical Zebras and Spoonies Unite! is only 2 weeks old, but growing fast and has almost 30 members already. Grow with us in this incredibly lucrative way to pin. If you aren’t yet a member, you can save $15 if you choose to buy a plan when clicking the link. I’ll also get $15, which will help me pay for my renewal. Thank you!
YouTube Logo

And of course there’s the Zebra Pit YouTube channel that consists mostly of exercise videos whose very existence make me cringe in horror, but seem to actually get viewed from time to time. I’m working on getting up the courage and energy to do more with it. There’s a reason I write, though. My social and performance anxieties are no small part of why. I’ve had it suggested I should do a podcast, but I just can’t even imagine. I think I’ll save us all the torture and myself the psychiatry bills. I’m best served up in print. Still, if you want to get some pointers on safe exercise, hear me moan about my dysautonomia making it impossible to control my PTSD flares or whatever else I decide to take to the screen to discuss, you can subscribe here along with the 16 other brave souls who have chosen to, lol.

Of course there’s more reason to subscribe than just my videos. I’m saving valuable videos on playlists, too! I haven’t gotten very far in this venture as of yet, but if people show an interest, I’ll reserve more time to do it. I find I really enjoy curating all of these things. Perhaps there’s a bit of librarian in me, after all.

There’s my new blog, which I’ve been remiss in inviting everyone to check out, but it’s probably not going to be everyone’s jam, either. Mostly it’s a place to showcase all of my writing, some of which is actually about things NOT chronic, gasp! A very little sum of late, but that’s okay with me. I like hanging out with you fine folk here at the Pit. If you enjoy poetry, the occasional short story and some other creative work, personal essays, opinion and pop culture criticism pieces, give my other blog a follow. My posts from Mykie Writes It also get pushed to Twitter.

Email Symbol

Finally, we’re still working on getting our newsletter up and running but we’re getting closer. The idea is to offer a weekly or monthly “best of,” along with any special offers I may have from affiliates, things to watch out for and other news from the Zebra Pit. My goal is to have these out no later than January, 2019. Subscribe now and you’ll be all ready to go:

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Calorie Counting, Cardio and POTS

This video covers issues of exercise equipment calorie counts and why they’re never accurate, along with some information about heart rate and POTS. The second subject, I cover in depth in my article on POTS and exercise, but I wanted to cover a little of it video format for my YouTube page.

For your convenience, I’ve included the Heart Rate chart shown in the video so you can determine your ideal range. Remember, it is very important that all people with any form of dysautonomia monitor their heart rate during exercise to ensure they stay within safe limits. For more tips and information, see my post on POTS and exercise.

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If you’re looking for a good calculator to help you determine how many calories you’re burning, try this one, which has quite the variety of exercise options and allows for full user statistical input: https://www.mapmyride.com/improve/calorie_calculator/

I also feel like I should correct something I said that’s not accurate. When I shot this video a few weeks ago, I mentioned that I’d hit “my first 100 miles” on the bike, which isn’t entirely accurate. I’ve probably done twice that. However, my bike resets after a week of inactivity, so this is the first time I’ve clocked 100 miles before it reset on me due to inactivity. As of yesterday, I hit 155. This is important, not as a point of pride (though I admit, there is that), but because my PT helped me to realize how much I was setting myself back by taking long breaks when I went into flares or fell ill, so I’m not doing that anymore. Instead, during flares, I do a reduced work out, getting in what I can. My usual work out is a fairly hard hitting 90 minutes. When I’m flaring, I might do closer to 60 or even 30 if that’s all I can manage. I’ve done as little as 10 minutes of cardio and surprised myself by doing as much as my full 30. Don’t underestimate yourself. Once you manage to start exercising on a regular basis, you’ll be delighted by how much more energy you have, even during flares, especially if you take antioxidants and/or bioflavinoids.

If you need a boost to your energy levels, take a look at our supplements page!

 

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Get Moving! EDS and Exercise

Exercising when you have EDS is no small matter, yet building strong muscle is an integral part of getting healthy and staying healthy. Since a primary feature of Ehlers-Danlos Syndrome is dysfunctional collagen that causes our connective tissue to stretch and tear, it’s essential that we protect them. How do you exercise and still protect your joints? How do you get started after months or even years of de-conditioning due to illness? I’ve been researching these topics to try to come up with my own exercise regimen and the information I’ve found takes a lot of the guess work out of how to treat your body to exercise and stay safe.

Why Exercise is Important

First, it’s important to understand why exercise is so critical to keeping the human body in optimal shape and researchers have come a long way on this subject in recent years, thanks to a group of Harvard scientists who discovered the existence of an “exercise hormone” dubbed Irisin in 2012. Irisin is present in all humans, but when you exercise, you produce much more Irisin.

Irisin has many functions. Irisin helps the body convert white fat to brown fat. Unlike white fat which simply gets stored in the body, brown fat is an active fat burner and energy producer, much like muscle, according to Dr. Joseph Mercola. He also adds that it’s great for heart health and may also help with endocrine dysfunction, as low Irisin levels are found regularly in women with PCOS. It also helps slow the aging process, induces greater insulin resistance, and helps to grow new neurons, improving cognitive function, according to Psychology Today. Amazingly, once you begin exercising and maintain a healthy weight, higher levels of Irisin actually protect the body from weight gain, as well. It’s also important in regulating stress and balancing our hormones over all. These are all things the spoonie population can benefit from, as we commonly suffer from fatigue, hormone imbalances, carbohydrate intolerance or diabetes, and cognitive dysfunction. Weight can often be an issue, as well.

But what’s also important is the mechanical function of growing strong, healthy muscle to shore up our loose tendons and ligaments. Building strong muscles helps to stabilize joints and keep us from subluxating and dislocating our joints, causing tears to these materials made fragile by our condition.

Additionally, exercise can have the added benefit of reducing our pain. Somatic exercise has been found to be very helpful in this goal and the more you exercise, the more benefits you’ll experience.

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How to Exercise Safely

If you’ve long been bedbound or experienced serious muscle de-conditioning, the best thing you can do is start slow. Consider beginning with clinical somatics, also known as Hannah somatics. This program is great if you’re still struggling with pain and autonomic issues that have made exercise seem impossible. Clinical Somatics provide you with safe exercises designed to decrease pain and regulate the autonomic system; making it great for zebras and a perfect way to get started with exercising.

Another great way to get started is by performing your own fascia therapy. Fascia is another form of connective tissue that gets ignored all too often, but is often as dysfunctional in EDS as any other connective tissue. Fascia is an interconnected web that runs throughout your body, wrapping muscles, organs and bone. When something is injured or unstable, fascia tightens, attempting to help. The unintended consequence is that sometimes it gets so tight that it can literally choke off the blood supply and nerve flow to whatever part of the body its effecting. This is where fascia therapy like fasciablasting is integral to getting you moving again and it has as many powerful benefits as exercise itself. See more information on fascia therapy here.

One of the best resources I found for exercise for all levels in EDS comes from a presentation given by a physical therapist for the Ehlers-Danlos Society called “Intelligent Exercise – How You Can Take Control with EDS.” It not only gives a lot of practical advice on what to avoid along with safe exercises to help you get started, it also explains why we need to take great care while doing exercise and why it’s important to still do it.

It’s a long presentation, but well worth the watch, especially if you’re just starting out and need extra protection to safely build up long unused muscle throughout. It provides much the same advice as other presentations and articles I’ve seen on how to exercise safely with EDS and gives you exercise examples that work gently and subtly to get you started. This is where I myself have started.

No matter where you’re at in your fitness, follow these basic rules to help protect yourself from injury:

  • Do not stretch before exercising or do exercise that focuses on stretching, such as yoga. Stretching actually loosens the tendons and ligaments, not the muscle! For someone with EDS, it’s more likely to cause a tear or dislocation.
  • Avoid high impact exercise such as jogging and things that require jumping, such as jumping jacks. Running and jumping put an incredible amount of force on your joints and cause subluxations, dislocations and jams. Our joints feel the force of five times our body weight when doing these activities and are hard on even normal, healthy joints.
  • Avoid open circuit exercise, or excise with large movements that don’t keep you grounded. Opt for closed circuit exercise, where you have at least two points of contact with the ground or equipment at all times, instead.
  • Protect joints by never overextending them during exercise (comparable to what normal, healthy range of motion indicates) during exercise
  • Start your exercise regimen at a comfortable level, avoiding too many repetitions or adding weights too soon. Soreness will only deter you from exercising the next day and too much weight can endanger your joints.
  • Protect your neck while exercising. Avoid putting your hands behind your head and always keep your head in a neutral position.
  • Do exercise your neck. Head and neck problems are prevalent in EDS and strengthening the muscles that support it is a great idea. The video above will show you how to do so safely and easily.
  • Stay hydrated. This us not only important for detox, it’s a must for people with POTS and NMH.
  • Workout at least 5 times a week and only take off one day in between. We begin to lose muscle as quickly as we’ve built it, stay in a routine to stay on track and provide what your body needs to keep succeeding.
  • Fuel your body with healthy food and ample protein to help build strong muscle and consider a supplement such as d-ribose to help give you added energy and fuel to develop string muscle.
  • Add to your challenge by opting for more repetitions and variety of exercise before stepping up weight. Weightlifting can only be done safely once you’ve built enough muscle to do so. Work your way up using only your own momentum and body weight. Again, the video above provides examples of how to do this and how to use walls and doorways to build resistance safely.

Once you’ve conditioned your body to move onto more challenging exercise, these are some great, low-impact ways of upping your game:

  • Work with a trainer or physical therapist who knows EDS and can help you design a workout regimen specifically for your needs.
  • Take a water aerobics class or make your own, a very low impact, but good resistance exercise that can be adapted by the user. I do my own every summer at my community pool. It’s good cardio in addition to strengthening.
  • Start T-tap, designed to be low-impact and deceptively simple, this workout program for all levels of fitness will give you a full body workout while protecting your joints and allowing you to go at your own pace. Their website even provides several exercises you can try before you buy the DVD’s, so you’ll know if you can handle it.
  • Utilize the Muldowney exercise protocol outlined in Living Life to the Fullest with EDS, designed by a physical therapist who specializes in treating zebras.
  • Check out some of the suggestions in this listing of exercises for EDS.

Cardio Exercise and EDS

Finding solutions for safe cardio is somewhat more challenging. Running is out if the question and personally, I worry about the wear and tear on joints of elliptical machines. Instead, opt for a recumbent bike, which will protect your back while cycling. Swimming is also another great option for low-impact cardio. Unfortunately, these are the only recommendations I’ve seen. Playing sports should generally be avoided, due to the need in most to run, jump and make forceful contact, but of course if you can modify something to make it safe and you really enjoy doing it, then go for it. The only limit is your imagination and the cooperation of those you do it with. Perhaps you love basketball. You can still walk, dribble and take shots, but running, jumping and jostling between players should definitely be avoided.

Be sure that when getting cardio exercise, you incorporate high intensity interval training, or periods where you go really fast with periods of slower, easier exercise. This has been shown in studies to be the most optimal form of exercise for cardio health and can even prevent common diseases associated with aging and extend your life. The older you get, the more important interval training becomes. It also helps you burn calories more efficiently and helps your body handle rapid change better by helping to regulate the autonomic system.

There’s no excuse to not exercise, no matter your level of pain and deterioration. Safe exercise can only improve these things and there are a variety of exercises available for every level of ability. If you have concerns, consult with your specialists about what’s safest for you and your specific conditions, how to get started and/or request physical therapy to help get you started. I myself had to do a several months of therapy with the fasciablaster before I felt ready to take on more, and for the beginner, if you are following all the instructions, it can be exercise enough while having the benefit of getting the fascia back into good working order, something that makes exercise a lot easier to handle!

Exercise is essential to keeping any body healthy, but for zebras, it’s especially important in shoring up our bendy joints with added muscle, helping to regulate our autonomic system, reducing our pain and stress and helping us to create more energy.

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