I have so much to say that I am annoying. But each time I go to start blogging, it is all gone out of my brain. I want to tell my story as it could help someone avoid the years and years of gaslighting that I endured by the medical system and just systems in general. For so many years that I actually have C-PTSD from medical trauma as a result. Right now I have 9 on the pain scale, and will not go to hospital as I would much rather put up with that 9 then the ER and explaining my situation/syndromes/my different brain and how it processes information, including pain and everything else that goes with having rare syndromes and a brain that this world does not understand. I don't want to deal with the judgement or the doubt, the looks passed between staff, the reciting of text book information that doesn't quite fit my presentation, the silent accusations.
I am Tink. Mother. Partner. Nani. Sister. Daughter. Friend. Boss. Colleague. Advocate. Neurodivergant. Autistic with ADHD-combined type, and like many of my neurokin, I have co-occurring conditions hEDS (hypermobile Ehlers-Danlos Syndrome), AS (Ankylosing Spondylitis), IBS (Irritable Bowel Syndrome-cranky a**hole), Fibromyalgia, Costochondritis, Dysarthria etc, etc etc. Although many of my neurokin also have these co-occurrences, there has been no research done on why, as they want us to disappear so much they would rather 'puzzle' out a cure (see what I did there LOL) then work on this link and let us suffer for years on end being misdiagnosed and our symptoms get worse. I finally got my diagnosis for them at 48. Good thing it was hEDS and not vascular as that's our life expectancy. I would have been really pissed if they FINALLY worked it out on the year I was supposed to expire.
If I wrote them like a list of degrees, I look impressive. Tink McMullen AUdher, hEDS, AS, IBS. What a genius
Anyway, I digress. Of course I do. Thank you ADHD.
This year has been huge for us. Jason and I. My girls and Cory. Their babies. They watched me go from the hyperactive, multitasking, roller skating, energetic, over-achieving faerie, to someone who can barely get myself out of bed and didn't have the energy to even care. I built two companies from nothing, and won awards every year for what our team accomplished. All my girls worked within the company and together we shaped it to what it is now. I made a space for myself, my girls and my neurokin to be supported while supporting our community and it is a fantastic place to work. Check it out one day. AUsome Supports. My team over there is made up of 46 amazing ND people who have made AUsome, well AUSOME!
I worked full time in the business and full time on the company, all while advocating and helping others build their companies, and mentoring staff to be their authentic selves. I presented workshops, one that was even the very first autism workshop that was developed and presented by an autistic in our town. I hassled our council and campaigned for access (pain in the ass), and granted wishes to people with terminal illness. Once I even organised a whole wedding for an amazing lady with terminal breast cancer. Look up that one too. Tinks Wish List.
I put my whole self into everything I do and my work, my charity and my advocacy are everything to me.
As of April this year, I was unable to do any of them.
March I spent 16 days in hospital after waking up unable to walk. Again. I had gone to the hospital in my town the last time it happened and even though I could not walk unaided, and no one was home but me at our two storey house, they sent me home alone with no treatment or answers to why I suddenly could not walk on my own. I could not bare to go through that again and be gaslighted, for the tenth year in a row. The experiences I had at that hospital over the years are abhorrent. I know I am not alone there, and it is horrifying to think that that is all we have there. So I got on a plane and went to Brisbane where my daughter took me to St Andrews. There, finally, after a life time, after many awful experiences, after a whole lot of misdiagnosis, I had my answers. And it all made sense.
AS- Ankylosing Spondylitis- Ankylosing spondylitis, also known as axial spondyloarthritis, is an inflammatory disease that, over time, can cause some of the bones in the spine, called vertebrae, to fuse. This fusing makes the spine less flexible and can result in a hunched posture. If ribs are affected, it can be difficult to breathe deeply. Mayo Clinic.
hEDS- hypermobile Ehlers-Danlos Syndrome- hEDS is a heritable connective tissue disorder that causes generalized joint hypermobility, joint instability, and chronic pain. hEDS is also associated with a variety of other symptoms and related conditions that affect many different areas of the body. The Ehlers-Danlos Society
Fibromyalgia Arthritis- Fibromyalgia (fi·bro·my·al·gi·a) is a condition that causes pain all over the body (also referred to as widespread pain), sleep problems, fatigue, and often emotional and mental distress. People with fibromyalgia may be more sensitive to pain than people without fibromyalgia. This is called abnormal pain perception processing. Fibromyalgia affects about 4 million US adults, about 2% of the adult population. The cause of fibromyalgia is not known, but it can be effectively treated and managed. CDC Australia
So answers I had. But the damage was done. So many years of subluxation and dislocation without treatment mean I now have arthritis through most of my joints, and AS in my cervical spine, wrists and all throughout my hands. Some days I cannot do up my buttons. My wrists are fusing and I have bulging discs in my spine. We had to change our whole life. Leave our home, move six hours away, I had to handover all my work to my team, handover all the management of our company to my daughter. Give away my roller skates. They were rainbow roller skates and I loved them. I skated for emotional regulation. I would pop my headphones on and skate away until I felt ok. It is my glimmer. My happy place. I am a movement driven ND and I crave it still 7 months later, not having found anything that replaces it. And the giving away of those skates was a spiral down into depression.
I have always been a fiercely proud autistic. I 100% believe that my brain makes me see things differently and has contributed to my being really good at the things I choose to do. If something is important or interesting to me, I usually know it inside and out. Lucky for our participants, it was the NDIS legislation, and building plans that are individually tailored so I could get the best outcomes for them at review and at tribunal.
But I have really struggles to embrace these new parts of me. Admittedly, the hEDS was a huge benefit when I was an elite gymnast. And even though I have experienced these subluxation and dislocations always, they never caused any pain that I could recognise. In fact, I would just pop my hip back in and keep going. Same with my elbows and wrists. I joked forever about my emu knees that bend the wrong way and those rubber ankles, and admit to not hating the way people assume I am younger than I am. Got to be a bonus to my wayward collagen right? I am fair from vain, how can I be when brushing my hair is a sensory nightmare, but I think anyone would be happy getting asked for I.D at 38. Regularly. It is also a great tactic in meetings to be completely underestimated as people think you're a fluffy little fairy who can be manipulated. You would think that would not occur in the disability sector and you would be very wrong. There is a definite change in how people treat me as soon as I realise I am autistic. We will come back to that at a later time as it is worth its own blog post.
So EDS I could handle. I already have handled it without knowing its name, for 48 years, because baby I was born this way.
The AS is another story though, and paired with fibromyalgia it has been quite an awful experience. As it progresses, I do not expect it to get easier either. I recently applied for my own NDIS plan as I have had to admit to needing more assistance now. There are occasions where I cannot get myself out of bed unless I roll out onto the floor and crawl until I can get hold of something to pull me up. Some days I need a walking stick, some a 4 wheel walker, and others I can hobble around either wearing braces or less often all on my own completely. I am a specialist support coordinator in my paid work, and as mentioned previously, and advocate at tribunal. I fight tooth and nail for my clients to get the best plan possible. I have made enemies often when I have had decisions overturned that were incorrect, or provided evidence to show incorrect information has been given to those I am supporting.
I have seen the best and worst of how the scheme works and doesn't work. Unfortunately I have seen more bad than good. I have been a support worker, a support coordinator, a specialist support coordinator, the mother of a child on NDIS, the mother of an adult on NDIS. A service provider, a business mentor for others wanting to bring their dreams alive under NDIS. An advocate at the AAT fighting for the support that is actually needed. and now I am on it myself, being stuffed around, given misinformation on what I am entitled to, and having to continuously fight for the right plan.
I am going to share this whole journey on this blog in the hopes that it is going to help others. I am also going to develop educational workshops around reviews and collecting reports so the right evidence is provided and the process becomes less confusing and draining on us who barely have the energy to shower most days.
Hope it helps
xxx Tink xxx
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