#edsupport

I did not check my meds and was out in the sun for a very short time and got burnt to a crisp.

I didn’t even think to check until my ma brought it up and was shocked to see that it was an issue with so many of my meds!

Learn from my mistake and be extra safe. Wear/re-apply good sun screen, wear sun shirts, and/or stay in the shade!

What’s it like to be high functioning and chronically ill? Probably not what you think unless you’ve been there.

Being chronically ill has a lot of baggage and a lot to think about all the time. Your brain I constantly thinking and calculating of how to do every single small task in the most comfortable way for the least amount of potential pain. On top of that, I also carry OCD. OCD isn’t being a neat freak or like things in color order. It’s a compulsive constant stream of thoughts that repeat and repeat until you act on them.

I work 40 hours a week, so physical therapy, and do other forms of exercise such as playing casual basketball, spikeball, corn hole, tennis, biking, etc. There are days when I have severe muscle aches throughout my legs, on top of extremely loose and painful joints, to where I can barely move — but I’m still working. It’s an unbelievably task to bear, but I’m one of the lucky ones who is even well enough to work!

My best advice is to make it a point every second of your day to make yourself as comfortable as you possibly can. DO YOUR PHYSICAL THERAPY. Don’t listen to every doctor, most of them are wrong when it comes to EDS. I have heating pads, I’ve packs that Velcro around my legs, compression gloves, tons of blankets, a memory foam pillow and mattress, in-soles, and weighted blankets. Do what’s best for you. Drop people, even family, who don’t believe your pain and health are real.

Feel free to message me if you want to talk more! Only about chronic illness.

My point is, it takes time to find your people, but when you do, they go above and beyond.