It’s been a long time since I’ve had time to sit down and write a blog. So, on this sunny Sunday afternoon, while one child is at a birthday party, and one child is snuggled up to my side watching Disney Jr, I thought I’d carve out the time and just DO IT ALREADY! I’ve found that this has been a recurring theme in my life lately…just stop making excuses and do it! To say I’ve been stuck in a rut is the understatement of the century! More like stuck in the Grand Canyon!
It’s such a strange way to go through life, this whole ‘living with a chronic illness’ thing. It’s a roller coaster that just never stops. It’s full of good days and bad days, and flare-ups and glimmers of your old self. It’s happy and it’s frighteningly dark and lonely. As I am rapidly approaching the (gulp) three-year anniversary of receiving my diagnosis, so much has changed, but so much has stayed the same. I’m better than I was, but I still have Dysautonomia. I’m proud of myself for how far I’ve come, and I’m disappointed in myself for losing the steam to keep fighting. It just feels so exhausting at times. For the first year or so I was so motived to get my life back, that it was all I could focus on. Granted I spent months bedridden, so I had a lot of time on my hands 😉 I pulled myself out of bed and worked out every single morning…hard. I saw many, many doctors and tried many, many different medications. I fought with insurance companies for the right to see specialists. I raised awareness. I traveled to DC to connect with other POTS patients and to lobby Congress. I lived and breathed my health and well-being, and raising awareness of POTS. So, where is that person?! I need her back…
I could easily list a hundred reasons why other things have taken over priority in my life. My job is busy, my kids are busy, my life is just busy…but you know what? People who live with a chronic illness don’t get the luxury of using those excuses. It’s just not an option. While I’ve placed so much pressure on myself to be successful in other areas, I’ve forgotten the most important piece to the puzzle. My health. Without that, the rest of it doesn’t matter anyway. Lately, I’ve been fatigued…like ‘fall asleep while sitting at a red light’ fatigued, been battling daily migraines, fighting brain fog, spinning through bouts of dizziness, and overall just having far more bad days than good. Something’s gotta give!
So, I guess this blog serves as a “new year’s resolution” of sorts. I know what I need to do…so it’s time to refocus myself and do it! In an effort to get the boxer back in the ring, I’ve registered for the Dysautonomia International Conference in D.C. this summer…and I will be joined by my husband, mother, and father! We’ll connect with other POTSIES and world-renowned doctors, and we’ll learn about recent advances in treatments. How awesome is that?! I’ve registered for the POTS 5k in Massachesuettes in May—which I plan to RUN…well, jog…let’s not get ahead of ourselves… 😉 And I plan to ask my support network (yes, all of YOU) to keep giving me some pushes…I really need it! What can you do?! I’m so glad you asked…
*Don’t be afraid to talk to me about POTS or Dysautonomia…I’ve been pushing it under the rug, and guess what? It’s still there…so let’s talk about it! If you have questions, ask!
*Let’s go for a walk…or a jog…or something active…I may lag behind…but I need to get back out there!
*Remind me that priority #1 is my health…my kids need me to focus on this again! They deserve a mommy who isn’t dragging ass at 4pm!
*Don’t judge me if I simply have to say, “no”. Part of this illness requires that I really slow down when I need to…it’s how I don’t burn out totally.
*Continue to love and support me like you already do…I couldn’t do it without you! ❤