27• CREATIVE LIFESTYLE YOUTUBER • Blogger • California • Life • Books • God • My Motto: "Be Yourself. Let people see the Real, Imperfect, Flawed, Quirky, Weird, Beautiful and Magical person that you are." - Mandy Hale
Being chronically ill (CFS/ME & POTS) my health goes up and down I can’t even tell you the amount of times I get vertigo or other symptoms in a day.
I’ve started selling a few things on sites like Postmark. But something I’ve always wanted to get into in graphic design. I make things all the time for my YouTube channel or my Bookstagram. Canva is a site I use to make those items. I have a very creative mind and selling some templates on canvas would be fun and help us out too. I like to be able to contribute.
I am writing this for more people to truly understand what it feels like to be chronically ill. Knowing about chronic illnesses and actually experiencing it is a whole different level of pain. It’s therapeutic for me to write about too.
My view right now
Last week I wasn’t doing great lots of tiredness, vertigo, and over all just yucky. No other symptoms of Covid so wasn’t worried about that. September 15th planned to hangout with me two friends in the evening to play games. We hung out for 4 hour sitting at the table, I started feeling sicky probably 2 hours into the hangout. But I was loving the game! So I didn’t want to stop.
Was that my mistake? Should I have changed the hangout to just chatting in the couch? But I needed this conversation and real girl time more than you can imagine. I noticed during the game I started to get really really confused. It was a new game I was leaning but I felt like my mind was moving so slow.
My friend needed to leave by 10pm, so I texted my husband to come pick me up by then. We all moved from the table to the couch although I was just reclining which I thought would be good enough.
I guess it wasn’t. When my husband came and we got in the car to drive home I started getting really car sick, REALLY BAD vertigo in the car. I felt like he was driving sooo fast and I kept on losing my breath. I was trying not to freak him out since he was driving but he knew once I got quieter and quieter. When we got to our house I asked to stay in the car for a few mins to have it subside. But it didn’t. We got out and tried to make our way into the house. I tripped over my feet some due to the dizziness.
Once we got inside Ricky was trying to convince me to go upstairs but I couldn’t even take 5 more steps let alone 10 up stairs, I kept seeing myself laying on the stairs. He understood realizing how bad it was and I laid down in the front room flat during this time my heart was racing and pouring hard, shortness of breath, and since I felt like passing out a few seconds before getting over that too.
This is SCARY. It isn’t simple. There’s so many old trigger’s happening when I feel like this like “will I be down again for months, years?” “What is going on and how can I fix it?” “Is there a way to keep this from getting worse?” I know the not getting movement isn’t good. But I can’t control that right now. Possibly long haul Covid which I think is dumb how can you have POTS and that.
My makeshift bed for out here
Anyways just a little update. I’m really praying and hoping I bounce out of this soon. For no staying laying down as much as I can do. Trying to find things to do laying down and that I enjoy.
I thought last time was going to be the last time that I was crying and upset about not being able to do something. Last year I got engaged and married and started our new life together. I thought I would do anything, nothing was IMPOSSIBLE. Well that’s not how chronic illness works…it’s scary, with so many unknowns.
Here’s the story, my sister invited me to the Taylor Swift concert in the cutest way!! She made me this pdf which I will cherish forever!! I really really really wanted to go of course Taylor Swift is my absolute favorite and an Eras tour of all her music is absolutely a dream. 🤩
But that’s not the reality of my condition I was so thankful to be invited but I knew in my body I couldn’t go. It looks like such an AMAZING experience full of lots of great memories. But what you don’t see from the disabled perspective is bright light, flashing lights, fire, lots of movement, and loud noises, plus the crowds can trigger a POTS episode. All of a sudden I will get chest pain, shortness of breath, my body will start to shut down telling me to lay flat which isn’t possible at a concert. I’d end up on the dirty floor probably crying.
I am REALLY bummed I thought I’d be at a place to go but my health just isn’t there. Too many unknowns and it wouldn’t be smart to put myself in a situation where there was no exit plan. Even bring my wheelchair wouldn’t work.
If you have the ability to walk, the ability to go do fun things without symptoms, the joy of being out in the world and not worrying you’re going to get sick, GO Do the fun thing!! Have the best time and don’t ever for a second take it for granted cause you never know when you will not be able to again.
Update: the concert would have definitely been too much for my body between the height of the seats to the walking a mile to get picked up. But my kind sister got me Merch!!!!!!
Shout out to the guy who doesn’t have an Instagram but deserves the real shout out.
The man in my life my Husband Ricky. We started a crazy healthy new lifestyle and he’s been making 3 meals a day full of protein, veggies, and fermented foods. I’m just overwhelmed with his dedication and willingness to help me.
I may be emotional lately, but the amount of work he puts in for me is absolutely astounding. He knows how I’m feeling before I even say. He helps me remember to take pills and other routine things.
And now he’s been making so many healthy lifestyle choices, I’m very proud of him. We are doing this together!
We had our first Valentine’s Day married and it was amazing. Just a little bit of bragging about my husband.
So much has happened lately…In December my husband and I both got Covid. My body handled Covid in not an easy way. Fevers, shakes, so much chest pain, and a bunch of my POTS symptoms got worse.
It all started after Covid, a week after recovering from covid my husband got RSV. We were sick and at home for way too long. Not to mention we had to stay further a part so I didn’t get sick again. That was REALLY hard, especially since my love language is physical touch and quality time.
Then after covid my depression got WAY WORSE. It was really scary for a bit I got an appointment with my psychiatrist which is Medi-Cal….I’m really not a fan. He changed my medication to help and it did the opposite. Why can’t my body just listen and do the right things, well the definition of my chronic illnesses are literally dysautonomia this means my body doesn’t do the normal functions correctly. I guess I should know but years and years of this dang it’s hard. Finally after fighting for another appointment and me having to tell him EXACTLY what I needed change, then I helped it.
But then after that my body physically started getting worse, like my chronic illness symptoms started flaring up. You don’t need to hear the whole list but some main ones are definitely chest pain, vertigo/dizziness, and body pain with neuropathy. This was also hard for a while, I was really nervous I was going to just keep getting sicker and sicker to the point where I was before having to use my walker and not be as independent anymore. Thank God this didn’t happen after a week in a half, it started to get better.
I’ve also noticed more swelling again which kind of scares me. I’ve been really swollen before and that was really hard to control.
I started seeing my Functional Medicine doctor again. She did give me some tips. 1) I need to start cutting out sugar slowly and then get rid of it mostly. 2) Some special tests she wants me to get done. 3) Movement and strengthening each day. 4) Seeing my nutritionist again and learning how to eat healthy again. 5) Need to create a better sleep schedule again being asleep by 10pm and up by 8:30am. 6) Get more sun each day to help with depression and energy.
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