In a changed global world that is getting harder for me to navigate, since my twin passed, I live with worry and continue to live with anxiety. Losing my twin is still early days, I need to be able to regulate my emotions better. My disability is also concerning, because I have no way of knowing how I'm going to age with it.
Eagle Syndrome
My twin was my safety net and now I have and deal with Eagle Syndrome, every day is a fight to stay well. I want to get into my life, and it's already been on hold because of the pandemic.
I have no idea about my physical disability as I age and the doctors don't know either. All I was told when I found out about cerebral palsy in my forties, was that as I age, brain cells would die and I would start to see physical changes. That uncertainty is a concern, a worry.
The thought of going through the ageing process without my twin is scary
Going through the ageing process without my twin is concerning. I don't know how that looks. I feel better for writing, for getting my thoughts out there, but even with my writing, I still have to get on with my life and that's where I can become stuck.
Living with worry and anxiety
I live with worry and anxiety, often feel overwhelmed and lost, not helped by the external decisions that have been made by the UK government. I can go to bed with worry and wake up to another day feeling lost and alone. Now with Eagle Syndrome, I literally have no idea on anything.
The neuralgia pain I have in my face, pain in my ear and my jaw brings yet more worry and anxiety. My twin was good at being able to find resolutions on illness. She'd know exactly what to do.
Thank you for sharing your blog about worry and anxiety and I am pleased you have found writing to be a valuable outlet to support your mental wellbeing.
I am not sure if you have heard of UP-The Adult Cerebral Palsy Movement. We are a charity working to change the way people think about cerebral palsy.
We translate information from the researchers and medics learn from each other and educate, empower and signpost the community through the different stages of life as an adult with CP, weekly.
We also campaign for better services to enable people to live well and age well with Cerebral Palsy.
Thanks Miriam and welcome to the site. Sadly it comes with the territory of living with autism, made worse because of Covid.
Living with cerebral palsy and autism has been difficult, primarily because I didn't know I was living with cerebral palsy or autism. Yes, the world needs to think differently about disability.
People like me work with difference, people have to be able to work with us. The process has started and changes are being reflected, but we still have a long way to go.
Covid has shown a different side to people. Initially, people did come together through the emergency services, but 3 years in and society couldn't be further apart.
It's heartening to hear about charities like yours that endeavour to bring people together through disability. Thank you for speaking out for people with disabilities.
It's not fair that we have to live with so much anxiety and worry because of other people's decisions.
I had such a hard time sleeping last night because of this issue and I realize today just how exhausted I am because of it. I continue to try to figure out what options I may have, but I realize they are limited.
I want to make the best of my time but that's not going to be easy. That's nothing out of the ordinary for me and my life.
I agree with you, as you say made worse Randy because of other people's decisions.
Like you, we can only do what we can do. I hope you feel better, and so that you can continue to deal with any challenges you have.
If there was more support out there and we all worked to that end, our lives would be more enriched.
I admit and will always say when I am struggling. How many of us really do open up and admit we have mental and or emotional struggles?