The sunrise on the way to barre class this morning – beautiful. It makes getting up super early just a bit easier.
– I’ve worked out 1-2x a day, every day.
– I’m focusing on doing yoga 2x a week – not just when teaching it. My next goal is to do it daily for a 30-day challenge.
– I’m still going to PT an average of 1x a week
– I’ve made sure that I’m walking as much as I have been – especially when taking the kids to school or picking them up.
– I’ve gone to bed at a reasonable time each night, but I’m still working on getting enough sleep and rest. Pacing has never been my strength.
– I’m making sure that I’m taking my supplements each day, and working on improving my nutrition even more (although I’m super hungry all of the time, which isn’t usual for me).
– I’ve been trying to make sure I make time for acupuncture, massage and other alternative therapies that I know help, but I often don’t have the time for or the money to spend on regularly.
– Because of constant medication reactions, I’ve had to adapt to life without pharmaceutical help, which isn’t easy – and especially not when planning another conference.
– My head is clearer. I can actually write emails and send them – a task that would usually take me forever to just do and finish, or just didn’t get done in a timely manner.
– The POTS episodes have decreased (as long as I get adequate sleep), and I’m not feeling like I’m going to fall over most of the day (or that I have to sleep constantly).
– The pain in my hips and legs and the constant “hot spots” on my thighs is getting better. It’s not perfect, but I’m realizing just how deconditioned I was – not just physically, but biochemically and internally. I still have a long way to go, but every day gets better.
– I resumed teaching the weekly “Just 5 Minutes” classes on the EDS Wellness FB page. That was a big goal for me.
– Still waiting for the water/fluid retention to subside though.
– And I’m still getting all work associated with my businesses, life, parenting, house, etc. done. Slowly, but I’m getting it done.
– I still struggle with the debilitating cognitive issues associated with fatigue, pain, Dysautonomia, MCAS and all else. It can be incredibly frustrating because it just happens like a light switch turning off and on – and with no warning. There’s nothing that helps either other than complete rest or sleep. Some medications help, but that changes daily and isn’t guaranteed.
Climbing out if the “EDS Spiral” isn’t new for me, nor is dealing with medication reactions and the physical and biochemical adjustment that happens when you suddenly have to stop something that was helping you but was also making something else worse.
Medication issues are something I go through nearly every month or so.
Getting through the first 2-3 weeks is always the hardest, and then I suddenly start to feel like my myself again. Once I get through the initial few weeks, I also don’t have the extreme swings up and down – feeling completely normal with no pain, etc., to feeling like I can’t move an arm. It often feels like a bad joke when something helps you so much and you feel so “normal,” yet it makes other “related conditions” worse.
It can make you feel trapped and isolated as if you have nowhere to go and nothing that can help you — or no one who can help you.
Accepting the less volatile peaks and valleys that come with not trying from find “the cure” or the one med (or supplement) that fixes everything, is often much easier to “ride the roller coaster” of EDS with, then the incredibly taxing, debilitating and deconditioning cons of going through the mainstream healthcare Russian Roulette.
This the reality of living with EDS and it’s related conditions. Humbling, shocking and scary.
I’m not anti-med at all and still have to take them, but realizing how they affect me overall, has been eye-opening. This is something I’ve had to test (often not purposely) off and on for the last 2-3 years because of increasing symptoms, yet even more adverse reactions. What’s amazing is that when I give myself time to get through those initial 2-4 weeks and keep doing what I need to do in other areas of my life, it’s amazing how much better I feel. Don’t get me wrong, I often tank when I push myself too much and then need medications to function.
It’s just often such a hard, fine and consistent balance – one that is different for each of us. And it 
constantly changes. I’m thankful that I’ve learned to be well aware of how each food, medication, hormones, supplement, sleep, stress, and all else affects me. I’ve also reconfirmed over and over what does work for me – no matter how hard, tough or unfair it seems versus other people.
We do have to work harder. It just is what it is. Doing so gives us the best chance of living well.
And realizing that, accepting it, and just doing it, feels like freedom.
