rosematthews.bsky.social
Autistic researcher, author, and illustrator, Durham UK.
Autistic people’s experiences of menopause, sex & relationships, work, loss, grief, ageing, palliative care, death, & dying. https://www.rosematthewsresearch.com/
#AcademicSky #AutRes #Skybrarians
1,044 posts
3,145 followers
2,410 following
Getting Started
Active Commenter
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It’s my first gluten-free #PancakeDay so tips like this are really helpful!
Thank you!
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It’s awful when access to hearing aids is delayed or restricted.
I was given 2 NHS hearing aids aged 51 but several years later the criteria were tighter and I wasn’t allowed any.
It’s a false economy. Hearing loss often impacts employment and it can even sometimes contribute to cognitive decline.
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Living with severe fatigue made me marvel at the exuberant energy of the horses galloping along the beach.
It was the day before spring.
The sun was warm.
I soaked it all in.
Hope hung in the air and swept in on the waves.
There is strength in holding ground and hanging on.
#SlavaUkraini
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I need to keep stress levels low to avoid exacerbating auto immune disease so I’ve considered not following the news.
It’s important to know what’s going on though.
Gentle walks in empty places are a remedy for being triggered by injustice, bullying, and abuse; they’re an antidote for toxicity.
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Many years ago (when I had young children) I turned down a colleague’s collar which was sticking up at the back.
Then they pointed out that wearing it that way was actually a deliberate fashion statement!
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I’m overwhelmed by having so many medical appointments at the moment which means my tolerance for additional stimulation is really low, especially if it is unexpected and unwanted!
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Thank you Emma.
I’m hoping my GP will increase the thyroid hormone replacement dose soon, which should improve my symptoms.
Until recently I had no idea just how many physical and mental functions the thyroid controls.
This small butterfly-shaped organ is incredibly influential!
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It was. It felt very infantilising. Think I will have to get wing mirrors so I can keep a lookout for people sneaking up behind me!
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Non-consensual touch isn’t just an ageing or disability related issue.
I experienced it in childhood and as a young woman when men sometimes violated my agency by touching me.
I understand it better now.
Unwanted, unexpected touch shocks me into silence and inaction, but this isn’t consent.
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Losing agency over being touched is especially profound when sensitivity to #touch is heightened by #autism.
Being perceived as older and disabled seems to be making me vulnerable to unwanted #touch.
I had no warning on either occasion as I was approached from behind.
We need to educate people.
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I might have thought this was a fluke but it happened again later on that day.
I was looking for something in a shop when I felt a hand on my shoulder.
This time a voice said:
“What a pretty hat”.
I often get compliments about my mohair beret, but I’ve never been physically accosted before.
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I was perfectly comfortable with how I was wearing my bag but they hitched the strap high up onto my shoulder.
When I looked round they were beaming as if they’d done me a great favour.
I was too taken aback to say anything.
They bustled off leaving me dysregulated and shocked.
#Autistic
#touch
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Yesterday I got some intriguing insights into how older disabled people are deprived of agency.
I was walking along the street when I felt a hand on my shoulder which startled me into a state of shock.
A voice said: “I’m just adjusting your bag for you because it’s knocking against your knee.”
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TSH isn’t always a good indicator of what is happening with T3 & T4 thyroid hormone levels. Worth getting both of these tested plus thyroid antibodies if you can.
Antibodies increase risk of progression from what the NHS describes as ‘sub clinical’ to ‘overt’ thyroid disease.
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Do hope you can get good thyroid advice and support.
Family history and symptoms persuaded my GP to investigate.
After four weeks on Levothyroxine and a loading dose of Vitamin D I’m feeling a tiny glimmer of hope that the meds and gluten free diet may be working.
Next step is an ultrasound scan.
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Hard to know given limited data.
Subclinical doesn’t always equal asymptomatic as you know.
GPs vary in their knowledge of nuances of thyroid disease and proactivity in managing it.
There are risks with both over & under treatment.
Vitamins and minerals need monitoring too as they may be depleted.
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Really feel for you.
I recently went gluten free because of the type of thyroid disease I have. Blood tests revealed vitamin and mineral insufficiencies so I’m taking some supplements too.
It can take a great deal of effort to make healthy living part of our daily routine when energy is already low.
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Illustration was a complete switch of track from what I usually do professionally, which is probably why I found it so refreshing.
Sometimes a change can be as good as a rest.
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Energy is a huge problem for me currently. Every action has an opportunity cost. I have to be realistic about what I can and cannot do. It ‘s easy to get sucked into doing too much. Scheduling rest times and leisure activities sometimes helps.
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When I was a freelance artist for a while drawing too much of the same kind of thing dulled my enthusiasm.
Novelty keeps the fun alive for me!
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I think the key word here is probably ‘fun’.
It so easily gets squeezed out of life when there is serious stuff going on.
We have to make space for it and feel shameless about having it!
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Video games sound good! Only touch other people if you want to and it feels good! I spent too many decades ignoring my sensory sensitivities!
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When my physical and mental health were disintegrating towards the end of last year I was doing an illustration project that kept me afloat like a life jacket.
Illustrating was a source of great satisfaction, it gave me a focus and drew on capabilities which were unaffected by my health conditions.
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It’s difficult to give advice as so much depends on individual circumstances.
I try to pay attention to mind, body, and soul (not easy when under acute pressure).
Making space for what makes me feel fully alive (art and nature) while minimising exposure to toxicity, helps me to survive and thrive.
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PIP rejection seems to be the default option sadly, which discriminates against people who don’t have the energy to appeal the decision.
It’s only because I’ve stepped back from working that I am able to make an application at all. We need a better benefits system and universal basic income for all.
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Not sure that link worked, here it is again!
www.frontiersin.org/journals/end...
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It would be remiss of me not to share some of the information I have found about the diagnosis and treatment of #hypothyroidism in #elderly people.
This paper highlights key findings and research gaps, some of which I hope to help to fill.
www.frontiersin.org/journals/end...
#ageing
#autism
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This year’s pre retirement celebrations will be low key.
I’m enjoying simple things like a beach walk and two willing dogs to haul me back up the dunes.
I’m not really the retiring kind, so once my health improves I’ll throw myself back into #AutRes and activism.
It’s a relay race, a team effort.
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I’ve had a marathon #career with 50 jobs in 50 years.
Like many #Autistic people I am crawling towards #retirement, physically and mentally depleted, bearing the scars of #trauma.
It does not have to be like this, but change isn’t coming any time soon unless we fight for #equity and #justice.
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I’m surfing a big wave of endocrinology, phlebotomy, audiology, optometry, physiotherapy, hydrotherapy, and dentistry appointments at the moment.
I’m going with the flow to optimise my well-being as quickly as possible.
I want to enjoy my retirement as much as I can.
It’s been a long time coming!
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There’s a real chasm in #hypothyroidism #research relating to older people.
Just as with #AutRes I’ll have to be a trailblazing pathfinder.
The fine tuning of my treatment will depend on the extent to which I’m able to self-advocate effectively and the co-operation of healthcare practitioners.
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I’m getting peer support from other people with lived experience of #hypothyroidism #Hashimotos #AutoImmuneThyroidDisease
I’m realistically optimistic. It will take months or years to get better and I’ll be grappling with thyroid blood test results, ranges and percentages for the rest of my life.
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Not wanting to ask for help has always been a bit of a weakness but I have no option now.
I’m part way through a Personal Independence Payment application.
I’m being referred to occupational health.
I’m prioritising healthcare appointments over work.
I’m still celebrating but in a different way.
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Thyroid disease is exacerbating fatigue, joint pain and mental confusion I’d left behind after getting HRT.
I’m resting and sleeping more, trying to avoid stress and over exertion.
Lots of time is spent sorting out muddles.
My bag rattles with pills.
I’m hobbling around not striding up hills.
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I’d been struggling for a while, but that didn’t seem all that surprising given I’m #Autistic with existing health challenges resulting from hearing loss, tinnitus, arthritis, gastritis, Dupuytrens,
eye problems, and post menopausal complications.
My life had become a symptomatic smorgasbord!
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I’m so lucky to have found out what’s going on relatively quickly. Many people never discover the root cause of their symptoms, or don’t get optimal advice and treatment.
I’m a couple of weeks into being gluten free and this seems to be making a difference.
Levi’s too low (due an increase soon).
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I was with some older people yesterday.
Many of them have unresolved health issues.
A few may be #neurodivergent without knowing it.
Some were given statins for high cholesterol without having had thyroid function tests first.
All of them deserve optimal longevity and quality of life.
#ageism
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I’ve spent the last few years advocating for #health #equality for #Autistic people.
Involvement in #autism #research and activism has made me more assertive about my own healthcare needs.
It’s still exhausting, but I know how to navigate the system, and I have privileged access to information.
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#Hypothyroidism is quite common in older people and often goes unrecognised and untreated.
All parts of the body, including the brain, can be affected.
Physical and cognitive decline may be wrongly attributed to #ageing, stymying proper medical investigation.
www.btf-thyroid.org/older-patien...
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Optimising medication for hypothyroidism isn’t straightforward because of the complex interplay between vitamin levels and thyroid function.
Standard NHS blood tests (which generally omit T3 levels) can be misleading.
Thank goodness for patient-led charities and forums offering peer support!
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Research suggests that debilitating symptoms of hypothyroidism often persist in older people despite medical treatment.
I’m optimistic that adopting a more holistic approach may prove beneficial.
Medication is only part of the answer. Stress, diet and lifestyle are important factors too.
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