My name is Jenn Jones (aka, mom, mommy, Jams, JJ, goto and sometimes hey you- I answer to all). I’m an almost 50-year-old introverted, single mother to an always enthusiastic, extroverted 8-year-old daughter and a 30-year-old son who is content alone but knows everyone. My son was the first person in our family to get a name for our shared genetic, invisible illness.
I work a full-time gig, in corporate America, where I fix account errors. I know it sounds boring, but I enjoy the challenge of figuring out the why and how and making the corrections…plus I can Netflix while doing so.
In the part of my life that doesn’t pay the bills, I run a wildlife rescue out of my home for raccoons and opossums. It’s a thankless job that can sometimes require an exceptional amount of time, but it makes the heart feel good. This year we rehabbed and released 23 raccoons and 19 opossums.
In my spare time, I join my other nerdy friends, in cosplay costumes to visit children in the hospital or at other community events. I never would have imagined I would get to pretend to be a real-life princess throughout the entire year.
On top of all that, I am a person with multiple invisible illnesses. I am living with Ehlers-Danlos Syndrome (hypermobility type), Supraventricular Tachycardia, Myalgic Encephalomyelitis (fancy words to say I’m always tired), Mast Cell Activation Syndrome (MCAS), Osteopathic Hypertension, Polycystic Ovary Syndrome, Anemia, spontaneous Cerebrospinal fluid leaks, POTS (Postural Orthostatic Tachycardia Syndrome), and last but not least, PTSD.
All of that is rolled into little old me and hid away as neatly as possible.
5 Invisible Symptoms
- Dull, achy joints- all day every day – all the way down to my fingers.
- Seeing stars and blacking out just standing up.
- Brain fog (making lists saves me).
- Constant chronic pain (speaking from experience…you get so used to it you wait three days to go to the doctor when you break a foot and then you drive yourself).
- Constant fatigue (the kind a nap or full night’s sleep doesn’t fix).
4 Things That Help Me Manage Pain
- Heat, but not too much heat because POTS doesn’t allow my body to self-regulate temperature and I may pass out.
- Knowing what my limit is and accepting that it can change from day to day.
- Movement- even if I don’t want to. Getting up and moving helps (though I may complain about it).
- Humor-laughing at yourself can help when your body is far from working properly. Laughter is good medicine and it’s free.
3 Ways My Life Has Changed
- Seeing the good in hard things. Accepting that just because I used to, does not mean I still can. I am more likely now to give something a try and stop if I can’t do it. 20 years ago, I would have just suffered the consequences. Even holding a coffee cup some days is too much, but I also know that it’s likely I will be able to do it the next day.
- In loss comes added wisdom. I have learned to leave the things that do not matter and focus my energy on the now.
- Illness brought me to The League of Enchantment and their mission. The people in this group have changed my life in so many positive ways. We all fight our own battles and sometimes we come together to help strangers fight theirs.
2 People Who Inspire Me
- My best friend, who coincidentally shares the same first name, Jeni. She has overcome many things that would have set others back. She sets her mind to something and it’s as good as done. She is someone that no matter the situation, I can count on her always. She is witty, sassy and kind (well, if she likes you). She would give you her last dollar and then search for more to give you. I recently realized that at some point, one of us will be on this earth without the other, and I hope it’s not me because she makes my world a better place.
- My Aunt Mary. She, too, lives with invisible illnesses, but she doesn’t let them stop her. The amount of loss she has endured would have made anyone else bitter and resentful, but she is just the opposite. This woman has so much love and kindness in her heart that you cannot help but feel good in her presence. She not only raised two of my favorite cousins, but she also took on the majority of the task of raising her beautiful granddaughters into the powerful and compassionate women they are today. If I raise my daughter in their image, she is sure to make this world better.
1 Thing You Want People to Know
We all need saving sometimes. We may not all ask for it, but we will all need it. Big or small, our actions to one another matter. So, live your life expecting that the person you are interacting with needs saving today. Big or small. Be the hero someone needs today.