Hi.

Welcome to my blog.

My goal is to help provide EDS & Dysautonomia patients with resources to discuss with their healthcare team.

"I miss my old life"

"I miss my old life"

I know I've struggled with situational anxiety and depression, especially when it comes to having chronic illnesses that are invisible to everyone else. 

All of these thoughts have gone through my head: 
When do I tell people? How do I ask for help? Will they acknowledge my chronic illnesses?
Will they let me use the motorized cart or would they assume I'm healthy? 
Will people ever stop giving me dirty looks when I use my handicap placard?
Can I handle a trip to the grocery store today?
I miss being able to go out for the night with my friends.

I miss my old self. I miss playing sports. I miss weight lifting. 
...And so many more 

There's such a stigma around Anxiety and Depression. I was diagnosed with Anxiety years before my doctors agreed to look into my condition more deeply. Turns out the increase in my heart rate was due to POTS (a physiological condition) not a psychological condition. But I do get anxious in situations that have a lot of unknowns when it comes to medical accommodations.

I do my best not to be stuck at home and most of my friends are healthy. They don't have to think about how many spoons they have, if they packed their medications, if there will be places to sit and rest....or how much they'll be paying for it the day after.

I struggle with the isolation of chronic illness. I've had to cancel plans with friends and family so many times, that some of my friends don't invite me anymore. 

What I've learned:

  • If you're feeling symptoms of depression, find a therapist. I try to see a therapist at least once a year, even if I'm not feeling depressed/anxious, I refer to it as my "mental health checkup". Therapists have the tools to help empower you to make positive changes in your emotional health (and it's a great place to vent to a neutral third party).
  • It's okay and natural to feel sad at times about the things chronic illness and/or chronic pain has robbed from you. It's healthy to let out the anger/frustration. It's part of the grieving process. But, don't live in the grief. Recognize the things you can still do, appreciate the friends and family you have, color a picture (adult coloring books are in style and easy to find), find a positive outlet (personally, I've found blogging to be empowering). 
  • Join a support group - in person or online (or both!!). I've found these groups to be a powerful resource tool and area of support. I was diagnosed with POTS and found out about EDS because of these groups (a year after my POTS diagnosis). I caution you to be careful of the negative posts - do not wallow in others grief. 
  • Rather than cancel, if you can, adjust your plans. If a friend wants to spend time doing an activity that you can't handle that day, suggest an alternative. Even on my super low spoons days, I can handle having a friend over to my house to enjoy coffee and conversation (or to watch a movie and heat up some popcorn).
  • Make a list of all the things you can still do and regularly commit to doing something you enjoy. Here's my short list of 10 things
    • Skype/FaceTime with friends and family
    • Coffee - I can enjoy a cup or two on my good days - best served with friends
    • Adult coloring books
    • Writing - this is why I blog
    • Playing with my cats - sometimes they snuggle too :) 
    • Photography - When it's nice out, I enjoy taking photos of the city
    • Going for a drive in my car - I have a sound system and the bass helps when my heart is racing
    • Getting things done on my to do list (I'm really task oriented, it's probably odd to most people I enjoy getting these things done) - balancing my checkbook, paying bills, organizing my apartment, etc.
    • Going to the dog park with a friend and their dog. I can manage walking or sitting on a bench while tossing a ball.
    • Running a support group - this involves a lot. Everything from finding the space to coming up with topics to discuss and creating materials.

What are 10 things you enjoy doing? Leave a comment below :)

    I overdid it

    I overdid it

    Support Groups List

    Support Groups List