Hello, Dear Ones. How are you feeling? Really? Are you holding up your head today? Are there activities you did easily before illness, that you have had to give up? I recently moved...a new start. I used to introduce myself and get involved in a community by leaning on my talents. I would join the choir or worship team. I'd dance or act in theater. I would lead kids' ministries and jump around with the kids. I was the artsy musical girl. I was the teacher. Plug me in and watch me change the world. Yeah, this move was different for me.
Right before we left our home of 15 years, I had suffered a miscarriage and then had a hysterectomy. In the middle of ridding myself of Endometriosis and Adenomyosis, I found out that I have an incurable bladder disease, interstitial cystitis. I had hoped the surgery would cure certain pains. Although I've been relieved of a whole mess of hormonal hardship, I still have my bladder and bowel issues (which both tend to mess up my daily plans).
Not long after recovering from surgery, we moved to a place that is double the elevation of our previous residence and to an upstairs apartment. I had no idea the trouble that would cause. My occasional fainting, breathing struggles, and chest pain increased to a debilitating degree. I was fainting in the hall and driving became impossible. After a terrifying experience in the ER with a doc that treated me like a nutjob, I finally got to a heart doctor who tested me for and confirmed that I have dysautonomia, specifically P.O.T.S, Postural Orthostatic Tachycardia Syndrome.
So my heart likes to race (tachycardia) when I change position. I sit up, it thinks it's in the Olympics. I stand up and continue standing, my heart just keeps climbing Mount Everest. So when I actually move about and exercise, say chase my 5-year-old or go to the grocery store, my body feels like I've been to Mordor and back. I've yet to get an Olympic medal from all this. In fact, to the average Joe, I probably look lazy. I'm the girl who sits down in church when everyone else (including the elderly) is standing.
The move just doubled what I was already experiencing on a smaller scale. So all the activities I was apart of have faded away. This heart racing and failure of my autonomic nervous system leave me breathless, chronically fatigued, and often sick. I'm on heart medicine but it hasn't been the magic cure I thought it would be. Also, it only deals with my heart...not all the other systems that are malfunctioning.
I also deal with the opposite symptoms at night, bradycardia, my heart rate gets super low and the chest pain is almost unbearable. The worst part is how much I struggle to breathe and then my body likes to shake. I feel completely out of control. I can't lay flat on my back or I can't breathe at all. I feel there may be a sleep disorder (possibly sleep apnea) involved too. Sleep has always been hard for me. I don't think I've slept a decent sleep since I was a kid. I never feel rested and I often have nightmares, sleep paralysis, and sometimes hallucinations. I also get bouts of insomnia mixed with hypersomnia. I can see a connection between my health issues and Aspergers. My youngest son, who also has Aspergers, also struggles with sleep. He takes melatonin. I don't take it. I'm afraid to sleep too deeply because I'm not sure I'll wake up. https://all8514.wixsite.com/chronicallyamberdovr/post/if-i-die-before-i-wake
Anywho, I talked about this in my last post. I'll try not to keep rehashing. Here's my point: As much as I'd love to belt out worship for Jesus, I get breathless and faint trying to do so. I can never stand in a choir for long periods. I know that now. In the past, I didn't understand why I struggled to be in the choir. It was embarrassing to quit and many people didn't understand. I just seemed to be an irresponsible church member. The more I've had to quit, the harder it is to explain to others. I feel useless.
As I'm getting involved with a new church and community, I'm not sure where my place is anymore. I struggle to homeschool my super special kiddo with his super senses and I'm also busy teaching my high schooler. My Aspie kiddo is stronger than me physically and his sensory needs require me to be more active than I can often handle. I'm exhausted before the day begins!
So...yeah, when Sunday comes I'm thankful to get a break from kids. But I've put in my time over and over through the years, VBS, an overseas mission, children's church (a paid minister once), leading youth groups, little girl's dance class, and teaching in Co-Op. If you've read my craft or homeschool blog, you know I've hosted big events where I taught the Bible and history to kids. I ran myself down, stayed up late nights making props, I wrote plays, and kept kiddos in line. I can't do it anymore. I wish I could. I can't.
I've sung in choirs and on worship teams. I played the flute (which really requires breath), guitar, and piano. I danced (ballet, jazz, tap, flags, clogging, and interpretive movement). My eldest son and I played for our local nursing home. I volunteered at Christian events. My son and I went to concerts together where I rocked out to Christian music. I got to meet Christian bands. I loved it. I could live in that environment...keyword could. I wish I could. I can't.
I enjoy teaching and sharing the gospel. I loved ministering in Belize. I enjoy helping at soup kitchens. Recently, I got my eldest son started at one of these ministries. I was roped into helping and was enjoying it until my body just couldn't. I realized that even something as simple as standing for hours to hand out food is now off-limits. I wish I could. I can't.
I miss acting in community theater and church drama. As a teen, I wanted to travel with the Covenant Players and put on drama events all over the country. That was not my call but God allowed me to spend a couple of seasons being an actress and leading lady. This time was super short because homeschool became my priority. However, I was able to put on interactive plays for children in our co-op. The stage was thrilling. I wish I could. I can't.
I write and blog and I thank the Lord I can still do this. I've honestly struggled to write because of 1. brain fog (big dysautonomia symptom-lack of oxygen), 2. I get depressed because I hate these limitations (I want to travel the world after all), and 3. I get exhausted and overwhelmed by raising my super special kiddo (I run on fumes). I'm still hanging on to this ability though. Sometimes the nerve pain/ inflammation can cause my hands and other parts to hurt so badly that I get stiff and just spend a day in bed. Thankfully, those days aren't as prevalent as they could be. So when I say I'm holding on to what I CAN do, I truly am.
Still, it doesn't feel as gratifying to say, "well, I write." Yeah, I'm not published. I've had children's novels in the works since 2011. That's nine years! My big blog for years (amberdover.com) costs too much to run and now I'm starting all over again with several small blogs. It has taken nearly a year to publish these blogs (several are still in the works). Honestly, I get sad when I look at pictures of what I used to be. Yesterday, I watched a beautiful worship dance at an event. I found myself crying and longing. The Lord reminded me that one day I will dance again. Anywho, I've wondered how can writing help the Church? It is a great witnessing tool but how can I use this to build up the local body? Or is God going to call me down another path?
I've been going to Bible college online for a few years now. My sophomore year has been the longest! Ha! I want to share what I've learned. I'm just not sure about what all God wants me to do. This is the first time in a very long time that I have been this unsure. So I've been trying to take it day by day. This week, all my devotions were about encouraging others, so I did that. One small step...right? Some days I'm in bed or on the toilet most of the day (sorry but remember this is my gritty blog), on those days if I can just spend time with Jesus (Bible study and listening to preaching) then that is meaningful. Dysautonomia is a sporadic thing because sometimes the systems work and sometimes they don't. I can't predict the good days or the bad. So if I have a good day, maybe I will try to sing or dance...maybe I'll lend a hand. I wish I could predict and plan my daily but I can't.
Maybe you can relate? This is not the blog for putting on a happy face. This is real, raw, and down to earth. I made it for those of you who don't want to say "I'm fine" when you're not. It's safe here. I won't try to fix you and I won't shut you up. I want to encourage you that you're not alone. So many of us smile and pretend not to hurt because others can't handle our pain...heck, we can't handle our pain! Only God can get us through this mess. I don't want to launch into a lecture about my health problems during small talk at church or in the store. However, there needs to be a place for it somewhere. So here it is. It's long and it's detailed. If this is not the blog for you, again, I ask you to check out my peppier blogs on faith, family, and creativity. I go on adventures and make things. You can find them here:
My First Main Blog:
My Faith & Central Blog
My blog on all things Domestic:
So I end with this, I've realized that I need to grieve and celebrate what I used to be and then walk away....say goodbye. All I can do is focus on what I'm able to do now. If God calls me to do the impossible then I know He will make a way. For now, I feel He has a reason for closing so many chapters in my life. I feel I'm depending more on God to define me than all my abilities. Inability has opened up a different kind of faith for me...something messier but more real. So this is my funeral for all the "used to"s.
I'm thankful God allowed me to be involved in so much. I've met so many interesting people and experienced amazing things. My life has been full. The rest of my life may look different...slower. I'm not quitting. My Dad witnessed from his death bed. I know God can use my broken body as He has used my broken mind. I'm still alive so I still have purpose in this world. While I grieve, I wait for further instruction...even if He says "Be still and know..." God, thy will...not mine.
Are you learning new ways to minister during your disability? God still uses cracked pots. All He needs is a willing vessel. I think of Joni Eareckson Tada, and how God uses her through her illness. May this message encourage you.
Do you know Jesus as your savior? It's as easy as ABC. A-admit to God you're a sinner and need a savior, B-believe in your Heart that Jesus died on the cross and rose from the grave to save you, and C-confess Jesus as your Lord.
"That if thou shalt confess with thy mouth the Lord Jesus, and shalt believe in thine heart that God hath raised him from the dead, thou shalt be saved." Romans 10:9
In Jesus' Arms,
Amber Dover