HEDS
I have a disability called hypermobile ehlers danlos syndrome, or HEDS. This affects the soft tissues connecting my joints and means I often have dislocated or subluxed (partially dislocated) joints. This can happen at any time and for any reason. From trying to do too much while running after my 3 children, to simply putting on clothes can leave me in agony. It also affects my digestive system, meaning I have horrendous acid reflux and become constipated easily.
Arthritis
On top of the HEDS I also have 2 different types of arthritis. Rheumatoid and psoriatic. This means that when my joints aren't too loose, they seize up and make it difficult to move at all! I generally walk with a rollator, which is much easier on my wrists than crutches, but when my joints flare up I use a wheelchair or mobility scooter.
Living life
Despite the disabilities I do my best to remain positive and live as independent a life as I can. I take pain medications daily just to enable me to move. I have many adaptations to my home to help and I am waiting for a bungalow to become available so that I can move somewhere even better suited to my needs. Currently I have extra banisters, shower seats, steps, perching stools, bed handles and raised feet on my sofa. I've also got a fall alarm so if I do need help someone will be alerted, be it my mum or the emergency services. As I mentioned, I have 3 children. I'm a single mum to them so most of my time is spent chasing after them and picking up after them! I'm incredibly lucky that I have good family support in the form of my mum and brothers who help as much as they can. I also make sure I spend time doing things for me to keep my spirits up, so I taught myself how to do acrylic nails and do my nails every few weeks. I enjoy gaming and reading, and I spend time with my pets. I have 3 cats and a mouse. They're great although I do have to be careful with the mouse to make sure he doesn't get eaten!
Mental health
My disabilities often get me down though, regardless of how much I try and stay upbeat. I suffer from depression and psychosis which means I hear voices and hallucinate. These are worse when my physical disabilities are worse as I feel like I'm useless and can't do anything. My voices are very much linked to my mood. I'm receiving incredible support for these via the NHS, I'm so grateful to them for doing what they can to support me. I take antipsychotics and antidepressants and I'm finally at the top of the list for therapy.
Autism
Just to top off everything else I'm autistic! I was only diagnosed in January 2018. It started as I was working and researching autism to support a child I worked with. That's when I came across the differences between boys and girls with autism. It resonated with me and I began looking into assessment. I had one appointment and was diagnosed within the hour. My autism is very apparent! My mum had tried to get support with me throughout my life but was always brushed off and told she was overreacting. My diagnosis not only explained things to me, but made my mum realize that she wasn't just a paranoid mum, that she was right that I needed extra support. She gave me that support though regardless, and I'll always be grateful to her for being my mum and taking care of me as a child, and even now as a 30 year old woman.
