As I came home after a very unsuccessful start to another clinic, I realised I had appointment fatigue.

A few days later, still reeling from the outcome, I was wondering why I felt wrung out and overwhelmed.

A couple of days after this, I sat down, went through my diary, and wrote down a list of all the health and medical appointments I have had in 2025. Eleven months into the year, I noted that I had attended over fifty appointments at nine different health-related venues across the North East. By the end of the year, it will be approaching sixty.

And that’s not all, I totalled up the number of school, health and medical-related appointments for my daughter. These came to over 20. Meaning over the course of nearly a year, I have attended over 80+ appointments.  This works out at 6.7 appointments per month.

This doesn’t include the number of phone calls to the GP surgery to order prescriptions for my daughter and me. It doesn’t include the running around to pick up those prescriptions or the running around when prescriptions go wrong.

It doesn’t count the time on the phone ordering and reporting failed diabetes technology that keeps my child alive, or the running up to school to sort medication or replace supplies of hypo treatment, chasing consultants, nor dealing with bullying and anxiety experienced by my child.

Then there is taking into account the travel time to all of these appointments. Travelling an hour or so earlier to ensure you can get parked. The length of time spent waiting in the rooms for your turn to be called. The advocating, the diagnoses, and the plans for the future. The quick admin moments of confirming attendance online and through apps.

Looking back, I think this fatigue had started to set in when I was discharged from the breathing clinic, because I hadn’t been doing my exercises regularly.  I realise now that this was because we were dealing with another burnout period that my daughter was experiencing.  I didn’t ask to be kept on or given more time at that clinic. I now realise I have and am in constant exhaustion and anxiety.

Envious of people who have the time to work

As I sat in another waiting room, seeing health care professionals walk busily back and forth in clinics, I began to feel envious of people with paid and secure employment.

Granted, I don’t know these people’s circumstances, and I’m sure they’d rather not be working.  Yet, how many working people look at people like me, parent carers, with my own health issues, and perceive that we are sitting on our backsides sponging off the state?

I wonder if they are aware of or see the invisible labour, the running around, the giving of support, dealing with professionals, and advocating for yourself and your family. The fitting in your life and time with other people’s schedules, agendas and outcomes that makes it impossible to work consistently as society sees fit.

There’s an invisible grief that comes when you have to reduce your circumstances to fit the season you find yourself in. One where you put one foot in front of the other and do your best to get through the day without wanting to get back into bed and block the world out.

When I wrote the first draft of this post, I slept for a solid two hours, such was the enormity of the challenges that this year has presented, which hit me hard.

It’s not been lost on me that my freelance career has more or less stalled, but as a good friend said, you have quiet, restorative years where health and wellbeing need to come first. And that is what 2025 has been. Recovery from past traumas and illnesses, preparing, hopefully, for better times ahead.

I see current circumstances as a season of my life that I am in for now.  Yet, burnout and overwhelm still feel like it’s nipping at the door, though I feel more forward-facing than before.

The Positives of 2025

It’s not been all doom and gloom, though.

My HRT is now working after the first type sent me a bit weird, and I was really not myself earlier in the year.

My referral to the social prescribing weight management clinic worked wonders on my mindset towards moving and food. The results? I lost about 3kg in weight. Better still, I also started moving more, learning about counting calories and making better food choices. The impact of this support has helped my breathing, upped my stamina levels and given me a toolbox (and motivation) to carry on the journey of weight-loss. I started the year around 60/61kg and am now down to around 57kg. It’s not a lot in the grand scheme of things, but it’s a win I’m proud of. It goes to show that support tailored towards the patient can have the best outcomes.

I completed the documentary for the Karen Sheader Arts Award about the amazing lady herself. The work made me face my own disability journey and identity on many, many levels. My confidence levels in my practice grew throughout, but it did feel like I was having a massive birthing to ensure I did the project and Karen justice, which has been the privilege to tell her story. I can’t wait for you to hear the piece when it is broadcast, so you can learn about Karen’s amazing life and her contribution to the disability arts scene.

Earlier in the year, I wanted to do something for myself. Not related to participatory or visual practice that has left me feeling burned out. I took the plunge and enrolled on a surface pattern design course, which I had my eye on for many years and decided to take the plunge. I’m so glad that I did, the course consolidated all the skills I had learnt in surface pattern design over 12 years. I met a fabulous bunch of ladies to boot, who love a good patterned notebook or stationery, too.

Lobbying my local MP around the initial planned cuts to Personal Independence Payments and how the current PIP system discriminates against people with Dwarfism. This led to establishing the Dwarfism PIP Working Group and feeding back research that showed a snapshot of our experiences of this system. I’m hoping we’ll be able to contribute to the Timms Review process that is now underway to help ensure that our community’s challenges are included and considered in any new criteria for this particular benefit moving forward.

Taking my daughter to watch the 30th (!) anniversary screening of Clueless was an absolute joy – whatever! Her taking me to see COLORFUL STAGE! The Movie: A Miku Who Can’t Sing was a brief insight into the fast-paced, musical world of J-Pop that only youth seem to be able to comprehend! (I felt old!)

…And what for 2026

At this point, I’m not planning too much. We’ve got more health and medical-related appointments, assessments and surgery on the horizon that I need to prepare for.

I’d love to develop my surface pattern designs into washi tape and notebooks to sell.

I’d love to spend more time on this blog and give the body of work the attention it deserves.

Mostly, I hope to get through by continuing to improve my health and things to be more settled.

Here’s hoping, hey.

Wishing you all the best for the festive season and the new year.
Steph