Hello Helen. Thank you for your comment. If sharing my story helps others to find their voice I’m happy to share. It is scary understanding how easily this happens to us. I appreciate you.
Hello 👋🏼 Helen. Thank you for watching, for your support, and empathy toward my situation. I’m encouraged with all of the support. Today we spent time creating a place where I have access to a mini refrigerator and microwave so my water and meals are nearby. With the use of technology we have set it up to connect to devices I cannot reach where I have the power to turn off or on through voice. Through technology I will have someone remind me when to eat and drink. It feels absolutely amazing and helps mentally shift from feeling powerless to feeling like I have the power to control aspects of my life again. The right to food, water, heat/ac at the very least for now. The abuse is never ok. I’m very hopeful my therapist can help me get to a place of where I feel worthy to be protected so that I can heal and continue to advocate for myself and others.
Thank you so much for being vulnerable and trusting us with your experiences. People with disabilities are so susceptible to medical abuse, and you are brave for speaking out against it. Your journal also is going to be a great place to let it all out. ((hugs))
Hi 👋🏼 Beth. Thank you so much for all of your support. I appreciate you so much and I’m thankful for our friendship. You are right!!! Journaling is extremely therapeutic and I’m glad for the safe space in which I can write ✍🏼…. I’ve always wanted to try that wreck this journal. So I’m going to allow myself to stomp on it at the very end.
I’m so sorry to hear about your struggles with your home healthcare aides. I’m glad you were able to find someone you trust who is going to be able to assist going forward. I have two chronic illnesses, and both are invisible. This has lead to a lot of self worth issues because there are times I just can’t do the things I’ve planned, and my family has made full big time adjustments to their diet because of ingredients I can’t tolerate. It’s one thing when I have to make a concession or accommodation for myself; but asking others to make those same accommodations even if I pay for the swap makes me feel so horrid. I’m trying to give myself grace to internalize that even on my best day, I’m unlikely to start the day with the same amount of spoons as someone else. It’s a daily struggle to stop comparing myself to people who don’t have chronic illnesses, or who I feel end their day with so many more spoons than me and have been so productive. I’m working on progress, not perfection; because needing help or accommodations doesn’t make us unworthy. We are just as worthy of love and compassion as any other human. I’m sorry you went through something so horrible and that people took advantage of your good nature. I also forgot to mention before, but I think your journals for your family members are so special, and such a labor of love. I won’t have children of my own, but I treasure my nephews and niece and might start something similar for them.
Hello Ginger. Thank you for spending time commenting and sharing your story with me it sounds as if so many of us feel the same way at the same time knowing that we have the right to be safe just as we have the right to breathe. I feel like Invisible illnesses are harder to receive help and validation for. Your story gives me insight to how you feel and how you’re making steps to help change the areas you can change. Please don’t feel bad for your family making the changes to include safe foods for you. I make low sodium foods for my husband and buy him the pink Himalayan salt to help as he has high blood pressure. I do it because I love him just as they do it because they love you. You are appreciated and I thank you for commenting about my journals. I think it’s a great idea for you to gift your niece and nephew. It’s a slow process. I may have 1 -2 pages updated each month per person and that’s ok as long as I’m being consistent in them. My mama left journals hidden for my dad as a gift to him. It meant the world to him when he found them. They can be not only healing for you to write, but also healing for the recipient to receive. 💜
Oh sweetheart. I’m gonna cry too. That’s not right at all. I’m so sorry. As a chronic pain patient I know, it’s so hard for us to stand up for ourselves in the first place. Let alone have someone come into your home and take advantage of your situation. Sending you gentle hugs ❤
Hello. Thank you for watching, for your kind comment, and for your compassion. There’s a lot helper #3 did that should have made my alarm bells go off sooner. With the lying #5 did I just couldn’t continue to feel safe. I’m thankful for my best friend and husband who really helped me advocate. I hope and pray that you are able to surround yourself with doctors and nurses who protect and support you as well as having your 1 person who will help advocate when needed.
I feel like disability and morality have gotten so muddled together when they literally have nothing to do with each other and I hope you can remind yourself that you’re allowed to exist in spite of others. That’s an affirmation I lean on a lot. You’re not a bad person because people have chosen to treat you poorly. I appreciate you so much and hope you’re feeling and doing better. Naming the traumas can give immense power and I am hopeful for your journey to healing the psychological wounds you’ve experienced. Wishing you safety and happiness 💞
Thank you so much. You are very eloquent in speech. Therapy has been the most amazing tool I’ve decided to seek out and I cannot express loud enough that I believe everyone should have access to it. I’ve internalized my feelings for 10 years before deciding to get help. You are so correct. Morality and disability are often seen by others as a correlation when they aren’t. I love your affirmation. Thank you for watching and commenting. I appreciate you so much Tori.
Have you heard of the spoon theory? It’s exactly what you’re describing with the gumballs. Maybe look it up when you have a moment ❤or if you feel like it.
Yes, I have. I’ll have to read it more to fully understand more about it. I just started following jemma Bella on IG and was blown away on the product that she’s using to help her save her energy. She was using the spoon theory. It’s a tracker that she wears I can’t remember the name of it. The cost is a bit too much for us at this time. But it tells her when to rest and what she has remaining. Based on past algorithms tailored to her.
@@MamaGraciePlans that sounds like a great idea. I wonder if we could make something like that in a planner or tracker? I can’t handle wearing watches or anything tight on my wrists. But I love that idea ❤️
