Doing A Difficult Thing
Reflections on a trip away from home
Image description: a mindmap graphic with 5 text boxes and a yellow background. In the centre the heading says ‘Doing a difficult thing’ with Chronic Resilience Lived Experience Occupational Therapy/The Chronically Resilient OT underneath. 4 arrows go out to the other boxes. Top left: ‘Scheduling it in’ (image of a calendar) - Where in the week does it fall? What else have I got on that week? Is it flexible timing or fixed? Bottom left: ‘Planning’ (image of a checklist) - How do I get there? What do I need to take? What is the space like? What do I need to take out of my week to have energy for this? Bottom right: ‘Doing’ (image of a movie clapper board) - Taking what I need (earplugs, sunglasses, footstool, water, snacks, fidget etc.). Taking breaks. Reducing sensory and social inputs where possible. Top right: ‘Recovery’ (image of a person in a hammock with a clock above them) - Solitude, reduce demands. Do something I enjoy. Focus on basic needs. Allow time between this thing and the next thing.
These were my Facebook posts from my first study block in February:
“Feeling proud for managing a long travel day yesterday, driving halfway down the South Island by myself. Supported by: podcasts, snacks, a slow start to the day and help with packing, frequent stops.
Also feeling nervous about starting study tomorrow as I haven’t done formal study since I finished my masters almost 4 years ago. I have a lot of strategies and new understanding about my brain and still there’s so much negative self talk. I’m also in a different city, staying with a friend (who is great and supportive) and without the support of my husband and away from my dog.
For the first time on a trip away I have brought my corner pillow, weighted blanket and weighted toy. I no longer feel like I have to pretend I don’t need these things.
I have contacted the uni disability services and my teachers and have a support plan in place.
I have to get through 3 days in a row of 9-4 classes and have supported this by allowing a rest day on either side of the study block.
I have brought with me lots of pre-made meals from home so I don’t have to cook.
I have strategies and supports in place and I am still nervous and that’s ok.
We can do hard things. It just takes a lot of extra thought and planning”
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“Day 1 of the study block done. I am more than tired but also hopeful about the mental health profession after a great day of learning and discussion that centred lived experience and cultural competence.
Supports I used today: footstool, calmer ear plugs, snacks and water, medication, soft fidget toy, moving my body on breaks, checking in on my breathing, changing posture regularly, printed slides to make note taking easier.
And all the prep work I’ve done.
Feeling proud and in many ways looking forward to the next couple of days.”
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“Day 2 of the study block was harder. Was still able to stay engaged but am noticing an increase in pain, brain fog and fatigue. Supports were all still useful today and finding I’m needing more rest this afternoon.
Currently under my weighted blanket with noise canceling headphones on and watching a show.
Just one more day tomorrow and then I have a planned rest day before doing the long drive home.
What a juggle all these things are!”
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“Day 3 done and dusted and the study block has finished. More study at home to follow.
The focus on class this morning was a bit too diagnosis heavy for my liking and I was hoping we’d get a chance to critique psychiatry and the DSM and discuss needing to look at the person in context not just as a label.
I managed to throw in a couple of comments about overpathologising and considering things like Autism especially in women who aren’t responding to treatment for depression.
The afternoon brought me back to OT and the way OT works with the person to figure out what’s important to them. We had the opportunity to explain to the rest of the class what the role of OT is in mental health and it’s so broad and makes me excited all over again.
One of my examples for how an OT might make sensory adaptations was to show my calmer ear plugs and I got lots of positive comments about my footstool and fidget. So great to have people responding positively to me using accommodations more openly than I have before and hopefully broadening their perception of what someone who needs accommodations might look like.
Had a lovely evening hanging with my friend eating pizza (Hell’s pizza here has a grain free base!) and watching a chick flick.
Tired and proud. Glad to have a rest day before having another big drive on Friday.”
Most recent trip
The second study block was 2 days of in person classes. This trip was harder than the one in February. I came into it with fewer internal resources and was really feeling the difference in capacity. I’m glad I allowed some extra time to have 2 days of rest before driving home.
As you can see from the posts above, my first trip was successful and also draining. This one has been more draining. It takes a lot to do these things and I’m doing the study because I think it’s important and learning means a lot to me. It’s also tough and it’s ok use strategies and supports. That’s why I wanted to share some of the things that have helped make this possible.
Preparation
Preparing for an event or trip is always challenging and a lot of effort goes into it. There’s some questions that can be answered ahead of time and some things you try and plan for, but there’s still a lot of uncertainty.
When and were is it? Do I need to take things out of my schedule in the week leading up? How can I nourish myself? What do I need to take with me? What will I do if…..? And so on.
For this trip I prepared by:
Making food ahead of time (and getting support with this)
Cancelling other plans and dropping all other demands and commitments that weren’t essential
Focusing on good sleep and keeping up my self-management strategies in the week leading up
Planning the time away, allowing for rest days between long driving days
Packed things I would need (footrest, weighted blanket and toy, pillow, noise cancelling headphones, pain cream etc.)
Knowing where to go and making sure I was staying in a quiet space.
Doing the thing, managing demands, supports and strategies I used
What made it possible generally:
Pre-made food from home so I didn’t have to cook
A quiet place to stay that was familiar and comfortable without pressures to be social
Supplements and pain cream
Cancelling all other commitments during the week
Having my pillow, weighted blanket and weighted toy.
Specific supports for study:
Regular breaks during the study days
Getting outside and moving gently during breaks, not forcing myself to be social
Footstool so I can sit more comfortably
Fidget necklace
Printing the slides to make it easier to take notes
Sitting facing the board so I don’t have to crane my neck, sitting under a fluro light that wasn’t working
Water and snacks, medication.
Recovery
Having a plan for recovery is just as important as the supports needed before and during an event or activity.
For me this involved:
Planned rest days
Alone time
Sleeping in
Gentle movement
Radical acceptance of worsened symptoms
Doing things I enjoy (board games, movies, reading, crochet).
Image description: a graphic with a yellow background. Heading: ‘Supports I used for my most recent study trip away from home’ with the tag line Chronic Resilience Lived Experience Occupational Therapy/The Chronically Resilient OT underneath. Four boxes are below the heading. Box 1: heading in red letters ‘Before’ with an image of an arrow pointing left in a red box above the heading, text: Prepared, Cancelled other plans, Focused on good sleep, Planned the time away, allowing for rest days, Packed things I would need (weighted blanket and toy, pillow, noise cancelling headphones, pain cream etc.). Box 2: heading in orange letters ‘Driving’ with an image of a car in a orange box above the heading, text: Podcasts, Snacks ready, Comfy clothes, Regular breaks to stop and move, Familiar route, Reminding myself I have done this before, Having help to pack the car. Box 3: green heading ‘Study’ with an image of pencil and paper in a green box above, text: Earplugs and fidget, Footstool, Snacks and water, Getting outside on breaks, Printing slides out, Medication, Sitting facing the board, Not talking to others on lunch break. Box 4: heading in blue letters ‘Recovery’ with an image of an arrow pointing right in a blue box above, text: Planned rest days, Alone time, Sleeping in, Gentle movement, Radical acceptance of worsened symptoms, Doing things I enjoy (board games, movies, reading, crochet).
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Overall doing things with chronic illness and neurodivergence involves a lot of extra steps and strategies, which is ironic when we already don’t have a lot of capacity and often struggle with planning and activities with multiple steps.
Figuring out what helps you is a crucial part of being able to do the things you want to do. Everybody is different. And even with the strategies in place, sometimes your body flares or something happens and plans need to change. It is a complex web of things to manage and consider and this in itself can often be a barrier to doing things, as the number of steps is too overwhelming.
I am proud of myself for getting through this challenging week, becoming more comfortable using the supports I need, not asking permission and caring less about what others think. A new one for me this time was being ok with not being social during the lunch breaks and honouring my need for solitude. Still learning about what I need, how to support my needs and getting more comfortable sharing this with the world. I am beyond tired after this trip, but ongoing learning is something I value and I feel lucky to have access to this further education and want to make the most of this opportunity.
Note: This is my personal experience and different people will need different strategies and supports. I hope this has been helpful and has given you some ideas. I do acknowledge my privilege in that I can support myself in many ways, I have lots of tools and resources and have a supportive husband who helps a lot with the preparation for these trips. Also many of my supports are things that I can do myself and don’t require input from others, and I don’t have a skin colour or visible quirks that people might otherwise target.
