Wow! What a summer it has been! It’s gone by really fast. I didn’t think it would go by as fast since we couldn’t go do as much or eat out, but I was wrong. Hopefully next summer will be more normal.
My health wasn’t great this summer. I was in a flare-up most of the summer and ended it with a double ear infection. It was rough summer health wise. Every year I think the summer will go better but instead it seems each summer I go downhill a little bit more.
This summer my flare-up has been so bad. I was on steroids pretty much all summer which has nasty side effects. My stomach pain also decided to ramp up. I feel like everyday I would wake up with the worst flu. I would think surely tomorrow can’t be worse but everyday I was wrong. I’m exhausted and tired.
My insomnia was horrendous. It’s usually 3-6 am till I could fall asleep. I’ve tried so many things but ultimately I had to get off the steroids because it was just adding to this problem. My fatigue has been really bad this summer. I’ve taken naps 1-3 times a day and that is not like me at all. Some of that was depression/anxiety but a majority of those naps were because I was exhausted. I didn’t do a lot to keep going into these flare-ups. After our first heat wave came my POTS (Postural Orthostatic Tachycardia Syndrome) also decided to get worse. I was so dizzy and nauseous when I stood up which also lead to staying in bed and sleeping.
My heart rate was 100-150 most of the summer. Keep in mind this isn’t doing anything physical it’s from walking a little bit and standing up. My blood pressure has also been up and down. With all the weather changes I’ve dealt with several migraines again. I slept with ice packs many nights.
I also had fun days in the summer! We watched my cousin’s daughter twice a week and that was always the bright spot in the week. It made me feel better and got my mind off my health. We also played with Daisy a lot! She also took a lot of naps with me too! She made me laugh a lot and often got my mind off things. It was nice to get outdoor breaks throughout the day also.
We did some fun tie-dye projects! I’ve watched Hamilton on Disney+ so many times I’ve lost count! I also cleaned my room and did some re-organizing. I always like to have a very clean room before school starts. My anxiety has also been a bigger issue for me this summer. I’ve been anxious about school as I’m sure we all have. I’ve been worried about my health and worrying about things that are completely out of my control. I worry for our country watching all these injustices happen. I’ve been really anxious about when this pandemic will slow down.
This may sound silly but if you know me you know I love college football and basketball. I’ve been a bit anxious that college football won’t happen. I know it’s a small and silly thing but I love football Saturdays. I miss watching college sports. I’m glad I can watch some Major League Baseball at least. I obviously don’t want them to play football if it’s not safe. I want all staff and players to be healthy and safe. I know they will run re-runs if there isn’t football. It just seems to weird to think of a fall with no college sports.
This summer has been good and bad. I thought this summer would go by really slow since we can’t do our normal activities. There was no county fair this year which was really weird. It went by really fast. The majority of the summer I didn’t really notice that things were so different because I felt so sick I usually wanted to be at home laying down.
When I reflect on this summer I feel like the best way to describe it is I felt like a boat that’s just been taking on water the whole time. When your body is slowly getting worse and you’re only 25 naturally you think of how much worse can this get? What will it be like next summer? I can’t afford to keep going downhill. Why is my pain getting worse? The thoughts just float around your head all day. Somedays I would often think how much worse is this going to get to get a diagnosis?
I’ve tried to focus on one day at a time. I got breaks from being in the house. We would usually go on a car ride to various areas and sometimes end up getting ice-cream.
This summer was also really hard on me mentally. I wished I could drive so many times this summer. I wanted to run to be free and get the exercise. I wanted to be normal and walk again. I can’t tell you how hard it is to be trapped in your body. Your mind knows what you’re missing and each year that goes by you crave it more. Personally for me that is one of the worst feelings when you have a chronic illness that is debilitating. I even miss something as simple as sitting on the floor or sitting in the grass.
I felt so isolated from people, with my health I couldn’t really be around people. We haven’t had a family gathering since the end of February or early March. I am so thankful for social media and technology so we can keep in touch with family. I’m thankful for my little Instagram community and some really good friends I’ve made on that app. Even though we weren’t together in person they were always there for me. I could tell them when I was having a rough day and we would pray about it and laugh about our good days.
So I’m ready for a new season and some normalcy. I hope this fall I start to feel a little better. I hope we have some football to watch also!
“The Lord will fight for you you need only to be still.” – Exodus 14:14