Multiple health conditions and the changes they bring
I was diagnosed with diabetes at 9 years old. I barely remember not having it. About 20 years ago, I developed endometriosis, leading to multiple surgeries over the years. After my hysterectomy, I began showing symptoms of hereditary angioedema. This has been the source of my severe pain. When experiencing swelling from HAE, anything that touches my skin, clothing included, makes me feel on fire. The swelling is rough, since insurance will not cover the medication. This swelling recently affected my optic nerves, leaving me permanently blind about a year ago.
The blindness has been a catastrophic change, which has been very difficult. My hobbies are mostly lost. I have relearned how to crochet by feeling, and now I listen to tons of audiobooks and music. I’m feeling isolated and unseen, now. I always feel like a burden and the recipient of pity. I’m trying to be independent, but often feel like my skills are no better than a toddler.
How does one accept their change of abilities and find grace? How do I prevent others from man handling me in their attempts to help? How do I express what help I actually want?
@CreativeSolutionSeeker Welcome!
I have HAE as well, along with other health issues. I'm still trying to figure out how to manage it all. I don't have all the answers. I can recommend to go easy on yourself, adjusting to it all is hard and new situations seem to keep popping up. Stay connected to others - that doesn't have to be in person though.
@CreativeSolutionSeeker Hi there, I am so sorry to read about your conditions, I have an idea in answer to your questions "How does one accept their change of abilities and find grace? How do I prevent others from man handling me in their attempts to help? How do I express what help I actually want?"
We have a series where we 'interview' people here, this is a list of the interviews so far. https://www.7cups.com/forum/disabilities/ArticlesResourcesConditionSpecificInformation_458/InterviewSeriesMasterList_292976/ they live their life with different conditions. It would be great to interview you about your difficulties with your loss of sight and allow you to answer those questions?
Here is the form https://forms.gle/fNgsjKLvQ1Y9VEDh9 or message me https://www.7cups.com/@MistyMagic