Barre3 & Yoga classes this AM, and then Power Hour at Zengo Cycle with Shannon Ryan = how to procrastinate when you have so much to do, are beyond behind with work, and can’t see straight (literally and figuratively).
Working out 3x in one day was the lesser of two evils and less painful to wrap my head around.
Bonus! I picked up this shirt for the silent auction at Wellapalooza 2017 Integrative Wellness Retreat!
The last 14 days have been some of the hardest, most painful days I’ve had in a long time. I had two back to back reactions to medications and the per usual hellish time of month, which was way worse than it’s been.
Legit natural child birth pain – exact same pain, in same place as when I delivered baby #3 naturally. Pretty sure it’s a lock I’m headed for a hysterectomy soon.
My husband was unfortunately away for most of it, or had early morning OR cases. I’ve had to figure out how to parent, get my kids to school, deal with horrid medication reactions, intense pain like no other, and still run my small businesses — one being a new nonprofit (EDS Wellness & plan its upcoming retreats – Wellapalooza, etc.). All I wanted to do was stay in bed and sleep. Seriously, I just wanted a break from everything. One day to just have nothing to do and not worry about it, but that’s not my lot in life and it’s far from what I’ve chosen.
I barley held my “Just 5 Minutes” classes, but I still showed up for our weekly Mind-Body for Hypermobility with Chronic Pain support group class last Thursday. I *think* I somehow got my 5 workouts in last week – one being hot yoga with my neighbor Saturday night. On Sunday, I put a smile on my face as my husband and oldest packed to leave Monday morning for 3 days for outdoor education school. Let’s not discuss my mad parenting skills while my husband and oldest were away, and how I was so exhausted that getting the littles to school on time, if at all, was my biggest struggle.
Yes, we went to bed on time. No, I didn’t stay up all night working. And no, I didn’t take a single medication or supplement to help me sleep or help the pain. So, I can’t blame my pure exhaustion and lack of hearing my alarm on anything other than – it just is what it is. I’m doing the best I can each day, with whatever deck of cards I’m dealt that day. The kids also slept in too. So, technically, it’s not all my fault. 😜
While the reactions to the medications have subsided, the hangover effects last a while. It totally drains your body. The “I want to saw off my legs” pain is also back and has decided to hang around for a few days – just for fun. The mornings are by far the time it likes to test me the most.
My husband and oldest returned home today — on my son’s birthday. Since today was his birthday and he was returning home, I, of course, ran around making sure we had the appropriate birthday supplies to welcome him home. Because of life, and pain, I had I cancel my “Just 5 Minutes” class again today. Reliability isn’t my strength right now.
We celebrated my oldest’ birthday, despite the pure exhaustion written all over his face and body, or the fact that two littles continued to kill each other after promising they would stop for one day – “just for Johann’s birthday.”
Have I mentioned that they have been home a ton also the last two weeks? I might have pulled out the “Bedste voice” today (AKA – the voice my mom used to use when she was REALLY mad) – complete with eyebrows fully slanted in diagonally on my forehead.
As soon as we were done cake, my husband ran to catch a flight for a business trip. All I could think was “I just want to rest. I just want the pain in my legs to go away. I just want to not feel so exhausted or like I’m velcroed to the floor.”
So, instead of wallowing in more self-pitty and focusing on how much pain I’ve been in, I decided to get on the Pilates reformer for “Just 5 Minutes” to work and stretch my legs out a bit. I bought the new Pilates reformer specifically for my legs and when they are killing me.
So, here are my pictures to prove my #Just5Minutes for today. All I can say is thank God Pilates machines have the option for you to lay supine. There’s nothing like working out your legs in a safe way, especially when they hurt like hell from muscle spasms.
I’m grateful to be leaving for Costa Rica in just over a week to give my body the much needed break it needs.
I’m grateful for my husband who supports me going to Costa Rica and purchasing things like a Pilates reformer (and puts it together for me). Grateful that I can move my legs and body.
And I’m more than grateful that I trust myself enough to know what works and what doesn’t work — especially when all logic and conventional medicine flies out the door.
YTT Weekend – Session 1: The Language of Yoga (2 hrs)
Instructor – Dr. Deborah Norris
You end-up mass purchasing the only clothes/loungewear/PJs that does not hurt your skin because everything else feels like a razor, and only adds to the burning feeling radiating off of your body in several places.
I will surely say “no thank you” next time a script is filled with a different brand of generic of a medication or supplement I take, because feeling like my veins may burst open through my skin from the horrid pressure and swelling, should be enough in and of itself.
Or, the feeling of my hands and fingers being inflamed, swollen, and stiff from pain would be enough as well. And the feelings of having hot spots all over my body and that my skin is burning in places should also be enough to make me say “no thank you” next time also.
Oh, and the feeling as if my skin feels is burning on the inside, yet is actually so hot to the touch on the outside also that it does seem as though I may have been burnt somewhere – that should be enough also for me to say “no thank you” to some new generic.
Or, maybe the fact that my chest felt like it was burning on the inside, but I also felt very cold and as though there’s a constant draft of cool air blowing across me will be enough.
Oh and I itched like crazy and had a million pins and needles pricking me. My HR spikes, but I also get incredibly tired, to the point of not being able to keep my eyes open at all. The fatigue is intense. Reacting to this med is also giving me intense reflux/GI burning. My skin gets red and splotchy like I’m sunburned. My lips, mouth, and eyes get super dry, and my lips start constantly peeling as if they are shedding. And the whooshing in my head is 10x worse, which isn’t surprising.
So, I purchased enough soft, comfortable, breathable, natural fabric lounge wear/PJs from Sandra Maiden on Etsy as I could, becuase when you can’t stand anything touching your skin and your autonaumic system is completely whack, you need to be comfortable.
To find Sandra Maiden on Etsy, go to sandmaidensleepwear’s shop on Etsy – https://www.etsy.com/shop/sandmaidensleepwear http://etsy.me/1ajzftP
Dave’s class with Laurel at TMC. Awesome class!
When you teach #Just5Minutes classes 2x a week live on your foundation’s Facebook page, and you are now holding a weekly movement and mindfulness-based program and support group, you feel obligated to purchase and “try” the various movement programs that say they help people manage chronic pain. Or, maybe it’s just an excuse, so my husband doesn’t say, “don’t you have enough workout stuff already?”
Nope, did not have the MELT Method or Yoga Tune Up®, but now I do!
My other excuse? These will be perfect for the Life Hacks table at Wellapalooza 2017!
EDS Wellness’ “Just 5 Minutes” class on Monday at 11 am (EST), just got a whole lot more exciting. 😉
(Massage pillow, knock-off TRX bands, and resistance band set were purchased previously and are some of my necessities for living as well as possible with EDS, and ensuring that I always have a way to keep my muscles strong – all are easily portable for traveling)
You react to something in an “organic” Cliff Bar – or, it’s probably the “natural flavors.”
The reaction started as soon as I started taking bites and then just got worse. And that was this morning. It has not let up. I’ve taken cromolyn sodium and have tried to avoid needing something else, but I can’t get it under control. I feel terrible – sick to my stomach and like I have hot spots all over my body with a million needles pricking me. I also feel cold and chilled – like a cold draft is constantly blowing on me.
My bladder is also been on fire. That was one of the first really bothersome signs that I was having a bigger reaction – bladder pain woke me up and I felt like it was burning inside of me. This is when I hate Interstitial Cystitis (IC) with a passion.
My body is clearly flared and angry because I also got an ocular migraine for the first time in 5 years.
Resources:
Can’t wait. Pura Vida Resort & Spa in Costa Rica with The Mindfulness Center at the end of February 2017!
RP HypermobileYogi Instagram Account
That time you decided to take back your muscles, because you are 4 weeks from going on a Yoga Retreat with The Mindfulness Center at Pura Vida Resort & Spa in Costa Rica, and you decided to go back to what works best – old school Firm workout videos. And you even bought a VHS VCR to play your library of VHS workout tapes on.
But, then you almost died 20 mins into your workout…..
In college when I didn’t do the FIRM for one week, despite still working out, I used to get what I called the “one month of leg pain” when I started doing it again. In just one week, my muscles can decondition that fast, even when I’m still active. The good news is, muscle has memory, and the FIRM does deliver results in 10 workouts. I was lucky enough to go to the actual FIRM Gym during my freshman year of college Charleston, SC.
After I had left the College of Charleston to transfer to the University of Maryland, The FIRM came out with workout tapes and then an infomercial — thankfully, I was able to continue the workouts I loved. I started doing the FIRM to incorporate strength training into my workouts after I dislocated my knee my senior year in high school. My physician, being very intuitive back then and probably not necessarily realizing how impactful and important his recommendation would be years later and over the course of the rest of my life, said that I had to start strength training to help stabilize my knee caps and strengthen my “loose” joints. The FIRM was a mix of aerobics and step aerobics, which I loved, and large muscle and 4-limb movements with heavier weights that most women at the time would dare to lift. Results don’t lie. The fastest way I gained strength ever. So, I’m going back to what works the next four weeks, while still doing my normal workouts that I love.
What I loved (and still love) about the FIRM, is that it was a mix of high-low aerobics and step aerobics, and large muscle and 4-limb movements with heavier weights — or, heavier than most women usually lifted. Results don’t lie. The FIRM still remains the fastest way I’ve ever gained strength and stability in a given period. The workouts are incredibly efficient — most complete in an hour or less. While I’ve remained active since I’ve stopped doing mostly the FIRM and other videos at home, no other mainstream workout or studio class has reshaped my body, while providing the same level of strength and stability as the FIRM.
Spinning and barre classes are two other life-changing and body shaping workouts, but neither one by itself or both together provide the same level of strength and stability throughout my body and in all of my joints like the FIRM. When I went through my last major “EDS Spiral” (previous to this one), about 6 1/2 years ago after my youngest was born, and after the back-to-back pregnancies. I started climbing my way out about a year and a half later. I had never taken such a long break from regular activity or my consistent workouts since I was 11 yo. Not working out for 1 1/2 years total and after back-to-back pregnancies, gaining 60lbs + each time was more than devastating. And humbling. I was more than deconditioned at that point, swollen and retaining water all over that I couldn’t’ get rid of. I knew that I needed to change the way I approached beginning to workout again.
Eventually, I went to a cycling class, and it gave me the push to focus on strength training and cardio that did not use larger dumbbells and was overall less impact on my joints –, i.e., cycling and barre classes. Cycling and barre were incredible, and I still love them; however, as I got stronger, I wanted a strength workout that compared to the results of the FIRM. I discovered Megaformer Pilates, TRX, became more entrenched into different types of yoga and started studying natural movement principles. Slowly, I began incorporating kickboxing and HIIT boot camp-style workouts back into my routine but still focused on trying new strength and whole-body workouts, versus going back to my old FIRM videos. Part of me also wanted to prove to myself that I could gain strength through other types of workouts versus solely “lifting,” especially if my joints were not up for a more intense, weight-training type of workout. I needed other options, and I was a bit board with my FIRM videos as well, considering I’ve done their workouts since I was 18 years old.
You can read my story about climbing out of the “EDS Spiral” for the 6th time, by going here.
This time, the EDS Spiral is different.
The hardest pill to swallow in all of this?
I’ve come to realize and accept that my most recent spiral is not caused by a complete lack of “exercise” for several weeks or even a year, or because I haven’t gone to physical therapy consistently, but is the direct result of a lack of regular and necessary daily movement – the kind our bodies are made to do each day.
The spiral that I’m currently working to climb out was caused by working more than I ever have in my life and being more sedentary on a daily basis than I have ever been. While the risk I took was calculated and specifically made a choice to work so hard on building and launching EDS Wellness, and more, I underestimated how much “sitting,” despite still working out would affect my body overall — not just my muscles. The kicker is that while I’ve been building and planning the launch of EDS Wellness, organizing several Wellapalooza retreats and working on countless other projects – all with the purpose of helping others in the EDS community understand the importance of moving more and moving better, I wasn’t doing it myself.
What I’ve learned, is that the type of “EDS Spiral” that happens when the body deconditions from a lack of daily “nutritious movement” that it needs to sustain proper biomechanical and biochemical functions and stability, is far more devastating and harder to climb out of than the EDS Spiral that occurred when I didn’t workout at all for 1 1/2 years. During that time, I was not working as much on the computer as I need to now, and I was able to balance my intense work weeks, with easier, more stable ones. And overall, I was always on the move. I’ve never been as sedentary in my daily life (and I’m not solely referring to the number of times I workout each week), as I have been the last 2-3 years. Even when I work with my medical sales business, I am always standing, walking around the hospital, doing wall sits, or ballet barre exercises while I wait or am in the OR supporting a surgical procedure.
My point to sharing all of this?
There’s something to say for low-impact cardio intervals, mixed with strength exercises that focus on large muscle and 4-limb functional movements — i.e. The FIRM workout videos. And the EDS Spiral is real. It can happen even when you are working so hard to fight against it — both personally and professionally. So, my plan is to go back to what I know works best over the next four weeks, while still doing my usual workouts that I love. Plus, I like contests. I’m going to take measurements and pictures to compare not on the before and after this time, but the few years before, to now and then to pictures taken after going all in on what I know works well — and doing it daily, for more than “Just 5 Minutes.”
Links:
‘What is the EDS Spiral?’ – http://strengthflexibilityhealtheds.com/strengthening-exercises-for-ehlers-danlos-syndrome-and-physiotherapy-resources/the-eds-spiral/
‘The EDS Spiral is Real and Devastating, but You Can Climb Out’ – http://strengthflexibilityhealtheds.com/2015/04/06/the-eds-spiral-it-is-real-devastating-but-you-can-climb-out/
‘WHAT DOES THE EDS SPIRAL REALLY LOOK LIKE? READ THIS!’ – http://strengthflexibilityhealtheds.com/2015/04/06/what-does-the-eds-spiral-really-look-like-read-this/
‘CLIMBING OUT OF THE EDS SPIRAL – MY ZENGO STORY’ – http://strengthflexibilityhealtheds.com/2015/05/13/climbing-out-of-the-eds-spiral-my-zengo-story/
The day I decided to take my Hypermobile DPT after my PT appointment to Yoga and Alignment with James, and she left with crazy Dysautonomia symptoms like she’s never before.
That’s what happens when you do a bridge and you have not done one in years! 😉
