Thank you for the warm welcome @lavenderhaze
At the moment I am gratefully able to access a G.P. I trust and have a longstanding relationship with as well as a Sleep Specialist who actively advocates for the appropriate treatment of Type 1 narcolepsy.
I have access to a Psychiatrist and Specialist Cardiologist, however there are barriers to accessing these.
A very significant incident which occurred with the treating team as an inpatient , followed by my psychiatrist apparrant lack of support for my experience has left me with significant challenges in reconnecting with my psychiatrist. Although there is a plan in place, due to the advocacy of my GP and Sleep Specialist, I am needing to overcome the challenge of following the plan. I am grateful for the help of my GP and Sleep Specialist however they are not able to provide the support I need to get from “I can’t leave my house” to action the plan. However, this has helped highlight that a support service I had in place , a weekly
support /social worker , is key in bridging that gap.
I also have some barriers to seeing a trusted
psychologist. Financial, waitlist, need another appointment with my GP for the MH plan. Again highlighting the impact and benefit that I receive in having that weekly support worker/social worker.
I do have a list of “what has worked in the past” and this links to the mindset I need to shift.
Previously Daily structure, journaling, exercise, nutrition, connecting with nature, creative activities , meeting up with various groups or friends with lived experience or at least a compassionate understanding has helped in the past… I have identified that as my support network disappeared and like many, COVID saw many services move to the online space which is a place I have felt safe in for most of my life…. However I do better when I balance “being connected with nature” with connection through the internet.
I have realised that the various attempts I have made to “self care through the internet” is not actually helping me to take actions, and I am shifting from “I need someone to help me to set up structure , to engage in activities that help me” towards “what small step can I do today thay I can do on my own”
So I have joined this community and am leaving the spaces online that were ultimately only providing a distraction, and that distraction is no longer helping me.
I am accepting that being stuck in bed means I need to slowly reintroduce movement , and focussing on gently yoga and stretching and getting out of bed and moving around my house.
I am walking around my garden are foot in the sun to connect with nature , because the mindset of “I need to travel to the beach / the hills/ the park” was keeping me inside🤷♀️
I am working on noticing what these “barriers” are telling me…. Myself and my husband both agree that we both want to live in nature and we both isolate when we feel we are stuck in an I unnatural environment. So we are working on shifting our perspective towards downsizing and relocating to somewhere that is in nature…
I suppose I am looking at , what seem to be self care take that need to be “set up “ for me, and finding different approaches to access the same sort of concept. Eg , I love water and being in water, swimming pools and the beach are not an option but I am blessed with having access to a bath .
And so on
Thank you for listening and being so welcoming
