It had been months of agonizing stress waiting for court process after process to finally adopt our children. Nearly 18 months after parental rights had been severed in fact. During those months of stress and worry I was in a constant flare. My body was the remains of a desert rave after the hundreds of people partying had gone home. I was a husk. I was working non-stop, trying to be a ‘good wife’ (what is a good wife anyway??), mom-ing 5 kids and trying to keep up with schedules, laundry, sports, appointments… keep it all under control. But, the funny thing about the word control is that we in many ways have none. We have free will of course to make decisions but, in the end control is not something anyone really has, especially those of us living with a chronic illness.
A couple of days ago I talked about some amazing Fibromyalgia books and in particular, triggers and managing ourselves to do our very best to avoid ending up in a flare in my post titled: Then There Were Two And Also Five… These months it was as if I’d never read those texts. My mind was in overdrive with worry and the daily amounts of pain had made my brain numb. I was carrying a burden that was not mine to carry and it was slowly killing me from the inside out. I was in motion continuously and refused to stop moving because then the stress and worry mentally took over and for me, in that moment it was worse than being a husk. I chose husk over laying down my burdens and finding rest. I chose being a husk over asking for help, prayer, meditation, slow, gentle movements and things I could actually physically handle. I chose husk over my husband and my children. It’s not as if I made this decision consciously but still, looking back I could have chosen differently.
I had been in a ‘good place’ relatively speaking. With the help of my doctors I was managing my symptoms and doing my best to keep up with our life and then once again in what felt like an instant I was a completely broken, non-functioning mess. Anyone relate? The tiny construction workers came back and built another wall and BAM I was down for the count. I missed so many days of work I can’t even tell you how many. (Or maybe it’s my fibro-fog today, we’ll never know for sure. HA) I stopped seeing my friends, singing at church or meeting up for a shopping or coffee date. My husband and I stopped going on date nights. I was consumed with just trying to get out of bed each day and paste on the fake smile and look like a normal, healthy person. Anyone relate?
But, here’s the thing… I don’t necessarily agree with the give up and adjust your whole life so your symptoms don’t put you in bed or the hospital or you end up lying on the floor unconscious. (I’ve tried it and I still end up in bed, in the hospital or lying on the floor unconscious.) I also don’t agree with the mental games of trying to play mind over matter. I think we (those battling chronic illness) need three things.
- Faith, Hope, Light… it is a strength outside of our own.
- Education: Knowledge is powerful and the more we can learn about our illnesses the better we can take care of ourselves, advocate for proper medical care and fight for ourselves and others. There are far too many uneducated doctors practicing within their specific focus and not learning about things like MCAS(D) and POTS. Both cross into so many different specialities and require so much medical intervention and unfortunately we have to be the ones to put evidence based studies and education in their faces and teach them how to care for us sometimes.
- Community: I can not even begin to describe the loneliness chronic illness creates sometimes. We can become remote desert islands with just a washed up volleyball named Wilson to keep us company. Often our meds, therapies and health practitioners become such a large part of our focus that we forget there are people around us struggling with the same things. Our immediate friends and family members may have NO clue on how we really feel or what exactly we are battling but rethink your outlook on community. Look beyond the traditional sense…
- Follow blogs like mine and interact/comment/ask questions that others struggling along side you may have answers to or know how to help! Often you can send a comment the the authors and they can ask the page anonymously if you don’t want to initially put it out there with your name on it! I’ve done this a few times and the responses can be so uplifting.
- Find pages on FaceBook, Instagram, Twitter etc and again, get involved in the threads. (Here is a link to my FB page!)
- See if your local church or behavioral health providers have support groups for people struggling with chronic illness. Even if it feels weird, try it! We ALL need community and we all need someone who hears and actually understands, not just shows sympathy towards us.
Give yourself room to say this is what I can do today and that has to be ok. Also, give yourself room to push through on the days you need to, even though you know you’ll pay afterwards. Some things are worth it and some are not. So friends… I challenge you today to comment here and tell me what you do that works for you or what you’ve tried that was an absolute BUST. Share your struggles and triumphs and let’s build a community of supporters, encouragers, virtual friendships to help ease the burden of life with our diseases and people to come along side us on our own journeys to wellness.