This week we’re talking about the Thoracic Outlet Syndrome with Jen Hein and I have been waiting a long time for this episode because I really want to talk to another person who has a chronic illness and had to close of business that they built. Some of you know that I also had to shut down my Menlo Park photography studio when my Ehlers Danlos became too severe to continue. We talked about everything from pain management, medical marijuana in California, the opioid crisis has always been a big one here, and getting on drug seeking lists when accessing pain medication, and the kind of behavior you have to show to be a "good" patient. Listen to the very end because we talk about what it’s like for spoonies to be in a relationship together, we talked about sex and disability (check out Kyros and my panel discussion about chronic illness and sex and relationships here), and we talk about some really good ideas for romantic low-stress spoony dates.
If you would like to contact Jen you can find her on Instagram at rebel__lioness
Recommendations and Links
Spoonie & Spoonie Relationship Advice
1) This is probably the most important one: having massive patience, understanding, and flexibility with each other. Pain does not work on a timeline, and neither can we. These are all skills and practices that take time.
2)Teamwork cooking. We decide what we want to eat for dinner based on our pain level and what we are able to do. Then we help each other make the dinner. Some nights it’s “tap out” style. Like, I can’t keep cutting/doing this anymore, you’re up! We also cook things that are easy to make, often even prepared foods. We use paper plates, and plastic cups (it kills me inside to make waste, but dishes aren’t a thing either of us can do anymore).
3) Having a plan before we do anything. Cooking, going to the store, leaving the house for a doctors appointment, etc. Take the time to plan out what you will both realistically need before you start the activity/outing.
4) Divide and conquer the chores. Decide what each of you can realistically do, what you cannot do, and what you can do together as a team. Despite the fact that both my partner and I have pain in our hands and arms, we manage to get most of the chores done around the house. Of course the deep cleaning is out of the question for us, but we are lucky enough to have friends and family that help us with that when we need it.
5)Take a day just to relax. This is really important to avoid complete burnout. We try to do this on Sundays. It doesn’t always work out, but at least try. To us, this means a day where neither one of us have to do anything physical to anger our pain. It also means a day where we don't talk too much about doctors appts/frustrations, etc. A true day off for your mind and body. A guided meditation is great way to start that off (I use a wonderful app called Insight Timer).
What is your disorder? *
Do you have any life hacks? *
Definitely yes. I use electric everything possible in the kitchen, can openers etc. I have a stool and every room so I can reach up to high places without having to lift my arm over my head. I have plastic cups and paper plates, which I hate because of the waste, but have to do because I am unable to do dishes. I keep things that I need on an accessible shelf instead of in a drawer or cabinet. I only use speak text is I cannot type. I have many pillows that I use for various things, for example, I have to use a pillow on each side of me while in the car to prop up my arms. I wear a scarf most of the time to keep my neck warm so it doesn’t flare up. I live in Yoga Pants and a tank top off my left shoulder, bras are never coming back into my life. Wireless headphones for my phone, so I don’t have to hold it. I’m sure there’s more. Meditation is high on the list for sure. I also use medical cannabis, which helps. I do therapy weekly. When I’m in a flare-up, I find my best coping mechanism is distraction. TV, podcasts, music, or taking a walk. In the rare days I’m not flared up, I’m usually OK with a set of tools that I have kind of created for myself.
Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.
Basically just promoting awareness about TOS. I am a member of a few Facebook support groups that have really helped me, and I would like to spread the word about that if people don’t already know.
What is the hardest and/or best lesson your condition has taught you?
What is the best purchase under $100 that helped your life