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February 15, 2024
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- Wednesday’s outfit of the day for a field trip bowling with my activity group! I loved my glittery dress. What do you think? I was enjoying being out with my friends and all dressed up. Do and wear what makes you happy because in the chronic illness community it is especially important that we do what makes us happy and don’t worry about what others think of us because our life is half enough without giving a dam about what others say about us
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- Enjoying a Chinese takeaway in my hotel room and in my massive bed! I miss it very much now that I am home! That what a proper Respite Care break looks like when it is done the right way and properly funded. This is only possible because of charitable grants, without of which I wouldn’t have a suitable respite at all and my unpaid carers would very possibly end up in care giving burn out or be able to access Tommy respite break whatsoever. If you know any charities can give me a grant to have a monthly respite break as a disabled person, you please let me know. I have found something like that for children but not for disabled adults. Disabled children do become disabled adults with more complexities due to medical advances. Some of us like me become our conditions aren’t life limiting, but we are still medically complex disabled adults. Mentally I can understand everything and that’s why care home isn’t suitable for me. Mentally I need stimulation even more so now with FND. Social services are brilliant for those with disabilities under 18, but once you’re over 18 they seem to think your disability just goes away and…. Newsflash! it does not and will not! They’re called disabilities and chronic illnesses for a reason because they’re dis-abling and they are chronic.
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