Choosing to Live when Life Feels Unliveable

(Caption: A good day, when I actually had energy and took the kids on a mountain trail. If only I could predict the good days and the bad ones. -Amber)

Hello, Dear Ones. Tonight I just want to share my heart and where my head space is lately. First off, this post is all about encouragement for you and myself when we feel limited and discouraged by major health changes. I want to share several youtubers who have inspired me to be thankful for what I still can do. But first I have to explain some basic things. Note: I will put those vids by brave youtubers etc in between my posts. I realize this is a long post and normally this particular blog will be about the Bible and end time events. I hope to start a separate blog just for chronic illness and Aspergers. For now though I need to get this off my chest.

In saying that, the last week to two weeks has changed how I live dramatically. Those who know me well, know that my previous doctor and I were seeking a dysautonomia diagnosis along with other chronic illnesses that fall under that umbrella: Ehlers Danlos- hypermobile type (I already know I don’t have Vascular like my Dad but I show symptoms of the other type he had- hypermobile) and POTS (has to do with low blood pressure and the heart), and looking into a sleep disorder (possibly hypersomnia). I already dealt with endometriosis and adenomyosis (also falls under that umbrella) by getting a hysterectomy. And in that process, I found out I have an incureable bladder disease called interstitial cystitis. I also have scoliosis, chronic pain, chronic migraines and nausea, chest pain from inflammation, anemia, chronic bowel issues, and Aspergers (which has it’s perks along with frustrations…it’s not so much a disorder as a different type of brain).

(Caption: Scar talks about staying mentally strong despite chronic illness)

Anywho, I say that long list to just explain what I deal with and that I have been dealing with elements of all of these since I was a little kid. I need to explain this before I get to the good stuff. Along with that I have the symptoms of dysautonomia and POTS. Dysautomia (A dysfunction of the nerves that regulate nonvoluntary body functions, such as heart rate, blood pressure, and sweating). I have random nerve misfirings that cause weird pain and burning and sometimes numbness in different parts of my body. Sometimes it’s like I’m being poked with needles, clawed, or like an iron is running over my skin…sometimes it tingles and I can’t feel anything in parts of my body. Sometimes it feels like I’m being pinched hard. This happens randomly and I’ve had it happen in strange places all over. As a kid it terrified me but people always said I’d be okay and didn’t really pay attention. So I started not talking about it. As an adult it has gotten worse and usually I just stop and pray when it happens. Also, another symptom is I go back n forth between sweating and shivering. I literally am “hot and then cold”. Vitamin D deficiency affects these things too…so I take that and I take magnesium to help with many things.

My POTS symptoms (Pots Info) are drops in blood pressure that cause me to black out, faint, see spots, become dizzy, get headaches, and have brainfog. This happens when standing for long and sometimes from standing at all. It also happens in certain positions while sitting. It has happened when walking…driving. I have a hard time with showers. I can’t turn my head and look down at my underarm without seeing spots and blacking out. My hands and feet are usually cold. I’m very pale and my face is often numb. I have a hard time with the heat and the cold. Both make me worse. Anxiety symptoms in my body even when there is not emotional cause for it. I’ve suspected for awhile now that my anxiety is actually a physical thing because my heart races.

As a kid I dreaded band practice for fear of fainting while standing in line. I was picked on for being weak physically and slow. I had asthma and an inhaler when I was little. I always had chronic migraines. I got sick a lot. I was just puny and could not keep up with kids in sports. I’ve always loved to dance though. Anywho, that was a bunny trail…back to the point.

(Caption:The girl who lives in a bowl but still dreams of owning her own store.)

Anyways, these symptoms have went up and down over the years. Before I went to Belize and even before I drove with Michael to Disney World, I was terrified of passing out while driving. I had to pull over and call my stepdad to get me because I was going out of it driving. I had several episodes spread out over the months around that time. Then I went through a period of not having any episodes. My mom is a CNA and we figured out that it was my blood pressure dropping that put me out of it. So I started eating a lot of salt and doing whatever I could to bring my blood pressure up. For years, I was able to deal with this problem by using salt….getting a soda and a fry when I started to go out of it. Well…not so much now.

So we just moved four hours from my Mom and we are in an area with a higher elevation. It’s been colder here and we now live in an upstairs apartment. All these changes have really affected my body…and maybe having major surgery in September affected me too. Anywho, I’ve been in constant pain in my joints at an intensity worse than ever before. I’ve always had weakness in my arms and simple things like brushing my hair and holding my arms up for a couple minutes, wears me out. I get out of breath going up and down the stairs….that’s not too unusual…but it’s been much worse. The chest pain from inflammation (maybe from POTS too since it’s heart related) has increased and has been constant. Some days I feel like a baby elephant is sitting on my chest, other days just a St. Bernard dog. I go to sleep with this pain and I wake up with it. Then I’ve started blacking out more and seeing spots more. I go out of it a lot and it feels like the blood has been drained from my head. I go numb etc. My head begins to hurt especially if I fight it and sometimes even when I give in. Then…

(Caption: The boy whose skin grows too fast but he still smiles despite the strange looks he gets.)

the other week I got overheated after already feeling out of it. I was walking in the hall talking to my kids when I went down. I just fell and blacked out for a few seconds or a minute (not sure really). I crawled down the hall to my bed and just really felt awful. I thought I was going to be okay but I woke up just as bad. Then I seemed to improve some for a day or so (yep even took my kids on a mountain trail), and then I started getting more spells. I kept having to take breaks and try to come to. When it happens I lose words and talk funny. So this past Sunday, I struggled to stand in church for worship. That’s not too weird. I normally can’t stand long, but then afterwards I couldn’t walk in Lowes with Chris. We had to go back home. My chest pain increased a lot and I kept going out of it while trying to grade papers. It wasn’t because I lacked sleep. Sometimes I get too much sleep or can’t wake myself. I also have issues with breathing while I sleep. This going out of it can happen any time of the day or night and several times. Allowing myself to go out of it doesn’t fix it. I still have to find a way to bring up my blood pressure before it happens again.

My family urged me to call the heart doctor. I had originally planned to do this before, but we moved and now I don’t have a regular doctor at all. Also, I have a fear of doctors because I’ve been mistreated by them and I’ve seen dear loved ones be mistreated and even die because of malpractice. But anywho, I made an appointment with a heart doctor to see if I can get a tilt test and have POTS confirmed. I had planned on staying in bed yesterday to keep the blood from pooling in my legs but my kids wanted to go some places and I thought as long as I got some salty food on the way I would snap out of it. Well, I didn’t…

(Caption:The girl whose muscle is turning into bone yet she has the courage to live on her own.)

I was driving Michael to church for worship practice (he’s playing now, yaaaa!) and in midsentence I just began to feel like I was floating…weightless and this feeling of not having a care. I knew it was coming on and that I had to pull over as soon as I could. I was praying that we’d make it to a safe spot to pull over. Thank Jesus, we did. On the way to pulling over Michael was quickly opening lots of salt packets (I keep them in my car). I pulled over had a lot of salt, drank water, drank an old coke cause I was desperate, and even found a honey packet from McDonalds. I reclined back and put my legs in the air….whatever I could. After about 7 minutes of that, I was able to drive my eldest to church.

So then I try to drive to Burger King on the way to the park for Leeland to meet up and play with friends. I pull on the highway and it hits me again and it’s this feeling of not really being in my body….like I could float away. It’s scary because I don’t feel in control and my fingers and face are going numb…and I’m worried that I’m going to crash with my baby boy. I realize I’ve made a big mistake trying to drive and now I’m too far from our apartment. I pray til I get off the highway and park at a random business. I call Chris and he takes off of work to come get us. (Note: I want to say for those wondering, that it doesn’t feel like an anxiety attack…instead of panicking, it’s more like a feeling of being on a drug and like I can say “Jesus, take the wheel” and just quit being. As I start to go into that state it is scary at first because I feel it happening but I eventually just get into this state of not feeling in the world, becoming weird emotionally, and not having words or proper words. Honestly, I can liken it to the feeling of being put under anestetia…right before everything goes dark. You want to fight it but you know you can’t.)

So I roll down the windows and wait. Leeland is upset because he wants to be at the park. I’m going in and out of it. Chris gets there and he holds up my legs while I lay flat in the back of the van, amongst the old popcorn and toy solders…ick. I can only imagine what the people passing by thought. Then he carries me to the passenger side and we go get food. Instead of hanging out with my friend, I lay in the van eating fries and trying to stay conscious, while my husband takes Leeland to play with friends and we figure out a way to pick up Michael and get all our vehicles back home…cause I’m not driving anymore…all week.

When we get home I let myself go out of it…which never solves anything because when I do come to I always have a bad headache and I feel sick. But I didn’t know what else to do because food wasn’t helping…changing positions wasn’t helping. So my entire day has been spent trying to stay conscious. Why didn’t I go to the ER? Because they are costly and I’ve found very little help in the past…plus, I know I need a specialist.

(Caption: The girl with no arms who uses her feet to eat.)

When I was younger I went to the ER a lot but it only brought heartache and bills. Specialist have been my only source of medical help and of course, my own research and that of those in similar positions. I wouldn’t have known anything about the Dysautonomia/POTS and Ehlers-Danlos connection if it wasn’t for my friend Karen (Who has all three). Yeah, my Ehlers-Danlos symptoms have to do with connective tissue issues, bruising easy, healing slow, joint problems (stuff popping, getting jammed, and a few times I’ve had subluxes: my jaw popped out for a day and then back in.I have weird stuff with my toes and fingers also), and all these other issues showing that my body is made of weak material (serously, my bladder which is made for urine can not handle urine). Anywho, thank you to those who speak out about chronic illness and inform us all. Awareness is so important.

So if you’ve read this far you are brave and thank you for lending me your valuable time. The fact that I’m still conscious at this time is also awesome for me. I think Gatorade is helping but my head still hurts and feels tingly.

Anywho, now onto the motivational part for me and for you…

So I’m stuck at home this week. I’ve already been feeling down about chronic fatigue (yeah, add that to the list…forgot that one) and pain keeping me from dancing, painting, and playing with my kids. I kind of just sit and watch them these days and then suffer for getting out, when I get home. I don’t sing in the choir anymore because there’s too much standing…no flute because that takes too much breathing.

I play guitar rarely because of hand pain. I don’t use a pencil much to write poetry….I mainly type because it hurts less. Then I just got upset because it takes me a long time to comb my hair because my arms are weak….but I saw this video of a little girl who has no arms (vid up above). She uses her feet to eat with a fork. She is amazing and inspiring. I realize it could be worse. At least I have arms. I’ve always been thankful for my legs, especially since my Dad had his amputated before he died. He inspired me too.

Then there’s this kid who has too much skin…another who is turning to stone because her muscle turns into bone when it’s injured. All of these amazing people living with the worst ever and they are still doing all they can to live and love.

Well, I was feeling a bit better and I’ve felt that this slowing down is pushing me to really focus on writing books again and maybe devotionals. Then I started having more fainting episodes and I was super bummed. I thought now what can I do. I’m stuck at home, not driving, and I’m struggling to stay conscious to even watch a show or eat supper. I’m just useless. I can’t even write now because that takes time and I’m not awake for long. Then…

(Caption: Vandar and Xena’s journey)

I listened to Good Times with Scar talk about his chronic illness and about mentally being strong when your body is weak. And I watched Xena’s video anouncing her hubby Vandar, finally died from the brain cancer. I said a prayer for her and I watched videos of Vandar’s journey. The video that got me was of a physical therapy session where he called a “cup”, a “sandwich” instead. He struggled to identify a plate and a fork. And my heart bled for him…I get so upset when brainfog steals my words…but to have terminal brain cancer and to lose the ability to think forever….that is just too much. I also saw videos of Vandar laughing and being silly. Vandar’s last days were spent with his loving wife and their 7 puppy dogs. And I thought, I have my cats…my family…friends…church members who pray for me…and I still have my mind. I still know what a fork is.

So I’m going to the heart doctor and I’m praying to get answers and if I have to go to several doctors to get help I will. Because I do have a healthy mind and I can advocate for myself, even if it is scary. I ordered compression stockings. There are things I can still do. I believe I still have purpose and a reason to live. So I choose to live and to be mentally strong. If I have to take medication to function and be the mom I need to be…well, I will…even if it’s scary…even if I hate it. I can’t just quit.

As my sister often reminds me, I would never tell someone else suffering like this to feel guilty or to quit. I would take care of them and push them to hope. I need to learn to do this with myself. I need to be an advocate for myself. And ultimately, I know I have the greatest advocate always with me, my Lord Jesus.

I have a new friend who has Sjogrens syndrome and I’m learning from her that it’s okay to talk about chronic illness and it’s okay to say no and be honest with people. I often feel guilty because I can’t do what I used to. I’m way less active in the local church. I don’t volunteer like before and I haven’t danced at the nursing home in over a year. I tell my kids “no” more than “yes” these days. But I didn’t choose to go downhill and I can’t help my body is malfunctioning. I was born physically weak and that hasn’t gotten better….still, I was blessed with a mind that can imagine wonderful things and think about deep subjects. I have a mouth that can share encouragement to others and counsel my kids.

So somehow, when I am conscious, I need to seize those moments. Sunday night I dreamt about my angel baby Hannah and as the dream progressed she became invisible like a ghost. My Hannah Elizabeth didn’t get a chance to walk in this world or have a voice. I know she’s happy in Heaven, but she didn’t have much time down here. I have a voice for her…to tell people she existed and is special. My Dad is gone and I can no longer hear his voice on this earth…but I have a voice. I can tell the world about him.

So I encourage you dear ones…while you have a voice, use it. While you have a brain, think deeply. And if you can walk, go places. If you have arms, hug people. We are given such a short time on this earth. May we never waste it. Love deeply and live. None of us are alone. Please pray for me and I pray for you.

Love in Christ and remember the High King lives! -Amber Dover

PS: Do you have a chronic illness or a health issue that makes life scary for you? How do you stay on the bright side? What are you thankful for that you can still do? Do you have fellow warriors that inspire you? I’d love to read about it in the comment section. 🙂

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