So, I’m not sure any of you know but last year I signed on to be a Community Leader with Dysautonomia Support Network . This is so important to me. I want to connect other patients and other caregivers. I want to work together and get doctors involved in learning more about dysautonomia. This is a passion of mine. This I do, for all of us, for you, your wife, sister, mother or friend. For anyone that suffers with a chronic illness it is important we build a support system together! I’m working on projects and still learning the ins and outs of things. It’s been an amazing time learning and volunteering with so many amazing people.
Now, I know I have touched on it in some of my other writing but I walk with a limp or an unsteady gait. I usually use a walker. Well, my rheumatologist is sending me for Aquatic Physical Therapy. I had my first consultation this past Tuesday. It was interesting, long and tiring. I have motor control and planning issues. My joint instability also lends to issues as well as having major balance problems. My goal is to WALK down the aisle this September, dance my first dance and dance with my Dad! She recommended a wheelchair for distances and anything that involves a lot of walking. This, unfortunately I knew was coming. We are now at a safety thing, a wheelchair will give me a bit more freedom, and allow me to do things with my son/family. When I got home, I was upset, I cried, and just did not want to acknowledge she was right about the wheelchair. My fiancé reassured me that if I need it, then I need it and that I need to stop being stubborn with it. Two amazing friends, whom I met through DSN, also were amazing at reassuring me of things, and how it does not have to affect my life as a mom or wife negatively, unless I let it. Between them and my fiancé, they really eased my mind. I know it is not an easy thing to accept, but we need to acknowledge our body’s limitations. We need to listen to our body, not push it till we fall, or are utterly exhausted. We need to take care of ourselves too!
This brings me to my next topic. Self Care! What do we do for ourselves? To relax, refresh our mind, and body? Self care is so so important. The below quote is all too true. We must take care of ourselves! What’s your favorite thing to do?? Leave a comment and let’s start a discussion!
Alrighty, someone asked me how can I be disabled, sick, and plan a wedding.. Well, it’s not easy. Honestly though, a lot can be done via emails, and phone calls. I set aside one task per week. Worked on that and then once that was done I would on move to the next. I did not let it overtake my life, I did not let it stress me out. I struggled at first with guilt, which I did not think I should even have. I felt guilty for the life my fiancé was signing up for. For the wife he is getting. The sick, in a wheelchair, not active wife. This really weighed on me. I did not want to be a burden to him, I did not want to “hold him down”. In all honesty, I nearly called everything off. I talked to him about my fears, and insecurities. I talked to my counselor, and she helped me to see myself for who I am. I am strong, I am independent, I am compassionate, passionate, loving and caring. I’m a silly in the car singer, dancer, and goofy person, I love memes and jokes. Why WOULDN’T anyone want me?? My physical limitations do not have an impact on WHO I am. They DO NOT define me. I think that’s what we, in the chronically illness community, deal with. It’s become a part of us, our life, and we are so quick to just dismiss the chances of life, or really living life. My fiancé has always told me how he feels, how he’s always by my side. He’s been there for each diagnosis in the last two years. He’s been to countless appointments, he’s held me a I cried in pain, or from a new diagnosis. He’s been my rock, cheerleader, strength and lastly, my best friend. I think we need to always remember, we are people. We are not our illness. We are not our dysautonomia. We are not our Ehlers-Danlos, our Lyme, or anything else. We are ourselves. We are who we are. We are people with dreams and goals. You deserve all the love and happiness. Do not let your illness define you.
I can’t stress this enough, always be true to you. Always be a voice, always know you are beautiful. You are strong, you are a warrior. Most importantly, you are not alone, there’s a community standing behind you. There’s always someone there to listen, just reach out. If you are new to a diagnosis, reach out to a group. If you are new to being a caregiver, reach out. I will be here to listen. Maybe someday I will get my fiancé on my blog, or we will do a video together answering questions, or a video with my dad, as he’s been my main caregiver for the last 5 years. For now my beauties, stay who you are. Continue being the warriors you are, be proud of who you are.