Letting support workers into your life as a Disabled/Ill person is challenging. Not only are you asking them to do tasks you would usually do for yourself, you are inviting complete strangers to your home to view you at your most vulnerable.
What if you don’t get along? How do I employ someone? What if they’re set in their ways, and don’t want to adapt to my circumstances? What if their profile on HireUp talks about how they think children with disabilities are a blessing from God who inspire them to get out of bed every day?
That’s not even mentioning that with ME/CFS, being around people and stimulation in general is my kryptonite?*
Since mum’s circumstances have changed so dramatically due to a new diagnosis, we now have 4 support workers (or PAs) come to us a week, plus garden/yard maintenance. We are lucky to have gathered such an understanding team around us, but it took so much time and energy to accomplish. I’m still not quite comfortable with having new people in my space, and this new life.
*Hence the title of this post: am I so sick that I can’t do things for myself, but can’t stand having people around doing them for me either?
My hero for today is the woman with MS who, in pre-pandemic times, fought NDIA (National Disability Insurance Agency) in court for her right to have a sex therapist funded. Bloody legend. Disabled people have as much of a right to consensual sexual expression as everyone else, and if sex toys and Tinder are physically out of the question (yes, this was assessed in the case) then hiring a sex therapist who specialises in clients with disabilities seems a logical choice.
I don’t want to be like every think piece from the past 8 months that begins with “in these unprecedented times”, so I’ll just update you briefly on what 2020 has brought for me. I started with health crises in the family and a whopping concussion, then a massive relapse which led to me needing my powerchair in my own home, a first for me.
Having ME/CFS is like being stuck in a timeless place, while the world passes you by. In my mind, I’m still 20. I’ve just finished uni, and I’m waiting to start my honours degree. My friends are still living here and I’m not long out of school.
In reality, 10 years have passed. My younger brother will soon surpass me in academic achievement. People have moved away. Weddings, funerals, celebrations pass and I am not a part of them.
I’ve missed a lot, but one of the hardest things in my time being ill will be missing my grandfather’s funeral this week. He passed on Christmas Day. The whole family, gathered to mourn his passing, while I am in the Chronic Illness Twilight Zone, unable to mourn, grieve and move on.
For a change of pace, I thought I’d share something I’ve had stuck next to my bed for at least the past 12 years. It’s a table of beliefs and socratic questions which challenge those beliefs. Naming and challenging unhelpful beliefs is a cornerstone of therapies such as CBT (cognitive behavioural therapy).*
When you live with chronic illness, sometimes you find yourself facing dark thoughts – I know I relate to many of these beliefs (such as needing a correct solution to every problem)! You might relate to some, or not any of these, but I hope you find this table and line of thinking helpful.
Just a quick post to say that after a brief 9 months on the NDIS (National Disability Insurance Scheme), my eligibility is being reviewed. What does that mean? Your guess is as good as mine, but I’d say, “you don’t deserve these services, you fraud, and we’re going to take them away unless you ‘prove’ your disability all over again.”
CW: neglect, death, possible manslaughter of a disabled person
Ann-Marie Smith was a 54-year-old woman with Cerebral Palsy. She lived alone in Adelaide, South Australia. And on 6 April 2020, Ann-Marie died from severe septic shock, multi-organ failure, severe pressure sores and malnutrition.
Fun fact: the NDIS’ primary response to COVID-19 has been to increase provider fees by 10% so they remain viable. Participants’ plans have not been increased by the same amount. In effect, the amount of services they can access with their plans has been reduced.
2019 was a hard year in many, many ways. My sewing and knitting production slowed down significantly – I made 11 garments compared to 29 the year before, and probably more the year before that. This was largely due to health reasons.