Lived Experience Forum

[tyme]

Dear All,

Please meet @Minerva .

Let's rally around and share the connection, support and care for one another for @Minerva 

@Minerva , feel free to share a little more about yourself.

Here are some prompts which may be helpful: 

1) What brought you to the forums?

2) What do you hope to achieve from the forums?

3) What are you currently doing to help yourself?

4) Do you currently have any supports in place?

Also tagging some of our wonderful members @ArraDreaming  @Asgard @Tilz @MermaidHair @Shaz51 @NatureLover @Snowie @Zoe7 

[ArraDreaming]

Hi @Minerva I had a quick squiz around and noticed you had commented on a post about Neurodivergence, I have adhd and struggle with some of things you described. In happy to chat and support 🙂

[MermaidHair]

Hello @Minerva, Welcome to the forums, its nice to meet you 🤗

I am MermaidHair one of the peer guides here and I chose that name because I love the ocean and always wanted to be a mermaid, I just read you really love nature and the water too. I also saw you have used journaling as a tool and that is also something I am really into!

I look forward to seeing you around the forums 💜

[Minerva]

Thank you for the warm welcome @MermaidHair 🙏 I love love love your chosen name. I have a bit of an interest in all things related to mythical creatures and how they have been used to represents aspects of self etc .

i myself have always wanted to be either a mermaid or a snow dragon, because I love nature and water (even frozen water)

I would love to be consistent with my journalling. It’s one of this ADHD quandaries, the need and desire to journal vs ensuring it occurs daily.

looking forward to getting to know you and the group 

[Minerva]

Hi @ArraDreaming 

oh my , ADHD is currently a big challenge for me and I would love to have someone and others who relate.

 
looking forward to exploring  our shared challenges and supporting each other. I firmly believe that a group of like minded people can come together and create great change.

[ArraDreaming]

Hey @Minerva sometimes the best support is being able to connect with similar people which is why I like it on here…
What are some of the challenges you’ve faced in regards to adhd? or some things that have helped you? I have a few little tips and stuff I’ve implemented in my life…

[Minerva]

@ArraDreaming 

specifically with ADHD, I have identified that when my Type 1 narcolepsy is not adequately managed, there are some symptoms which are similar

“narcolepsy / impaired executive function: ADHd / what is this Executive Function you speak off?” 

In Narcolepsy this is caused by sleep deprivation and amplifies any Executive Function issues with my ADHD.

i feel this is worth sharing because in my sample of one person (🙈) sleep deprivation plus , for example Vyvanse , has the result of Vyvanse been ineffective. And anecdotally this has been validated by my psychiatrist.

As the Department of Health makes  requests approximately every 5 years or so to “review and reassess my narcolepsy treatment plan it is unfortunate that this has been occurring whilst I deal with a severe mental health relapse.

in saying that, it has also highlighted to me the need for structure 🙈🤯 and I have the ADHD which requires structure , does well with structure and struggles to set up and maintain structure.

The main areas in which my medication does not help are

- time blindness

this is a big big challenge for me, and even  some sort of assistive technology or person or accountability framework, I still struggle with “when I am?” 
an example of how this can escalate very quickly, we recently had a power outage and my use of “smart” decives resulted in highlighting to me the need for a mitigation plan… as I sketched out an ideal plan for solar powered solution , and three days later realised I hadn’t eaten 🙈

task paralysis is a huge challenge, especially right now when I have essentially been “unwell for two years” and every room I enter is a flood of “ too many tasks “ and it feels like almost all aspects of my life are impacted.

it is so hard to describe this to someone who doesn’t experience it and also has a misunderstanding of the issue. I am considered “book smart” and my inability to just start what feels like an overwhelming task of objections and having no idea how to prioritise , causes some sort of dissonance in the non ADHD brain, or at least in those that I  have tried to explain.

i have almost a phobia of storing items in the usual places (aka clothes in drawers) . I literally forget the exist the moment they are tidied away, and the amount of money that I have spent purchasing something I need , is troubling.

this then leads to “doom piles” which I inadvertently fall into if my narcolepsy triggers cataplexy… plus just as many others, I need a chill , zen, clutter free environment to thrive …

I do struggle with identifying if I am experiencing Task Paralysis or a Trauma Freeze response, or cycling between the two. As I can become non verbal in both cases, tense and unable to move and I have been told by those who have seen me, the only difference is that my Trauma Freeze response suddenly stops and I either sleep or am relieved ; whereas my ADHD task paralysis seems to last for longer and longer.

I am yet to identify a “reward” system which I can use to motivate me to “get started” .

I definitely fall into the “consequences are not a facotor” mindset and if the “reward” is too far away , eg I love snowboarding and if I book a snowboarding holiday, that  doesn’t motivate me to restart healthy eating and exercise 🤷‍♀️

I have tried vision boards, I have tried saving up for something I want , I have even purchased an item and left it in clear view , and none of these have worked so far. 

I welcome all and any suggestion, I will try anything  🥰

[Minerva]

Thank you @tyme , this is a wonderful and inspiring way to create that sense of welcome. 🤗 

i have a very interesting (conplex) combination of rare illnesses, allergies and comorbid mental health isues which can create the perfect storm of my current situation.

I have been unable to work in ten years due to this interesting mix of conditons, and approximately two years I had reached a level of recovery and functionality which I had not dreamed possible. I was so hopeful that I had started looking at potential part time employment or volunteering. I was needing a purpose other than “not living like a zombie “.

then a series of traumatic events snowballed (as it seems this is how the universe works) and I found self relapsing to what feels like “the lowest point of my life”.

I have joined many online communities with a view to peer support and attempting to get back on my feet however it transpires that many of the online communities have evolved into an environment  which was negatively affecting my wellbeing.

I found these forums when I searched for resources for those still impacted by COVID, as I feel that when a lot of my supports were moved to online, they didn’t return when that limitation was removed. And while I am comfortable with remote delivery of support, this really doesn’t support those of us who, can literally become bed ridden for months and months at a time.

I had a significant medical mismanagement of a my complex medical health last year and this lead to me withdrawing from life. I was shocked and horrified that the medical team who have overseen my recovery, did not support me or , when I stopped attending appointments , did not follow up .

I feel that the inability for any one service to take responsibility of overseeing my entire medical plan is a huge barrier to anyone realising that I have gone from a good set of supports to barely none.

I am hoping to connect with others who face similar challenges and perhaps see if strategies that work for them might work for me. As well as having others who truly understand and get it, and perhaps I might be able to help someone else.

currently I am taking each day as it comes, focusing on one small step leading me towards a place in which I can better reasses my needs and create a more long term plan.

I have started to introduce gentle yoga as a first step back to exercise, working on ensuring I meet nutritional goals rather than “waiting until I am at my goal weight”.

I have accepted the help of a lovely young couple to act as “body doubles” in helping me to declutter and clean up , and this has been fantastic. I am so grateful for them both.

i have had to remove myself from certain online communities , and turn off the news to prevent a trauma response. 

additionally I have begun to plan a journal to help me keep on track , see what assistive technology can help, and have applied for some 1:1  support.

the only supports I have in place is my husband and this is causing a strain on our relationship. I struggle with “I’m a burden”‘thoughts and being reliant on one person is a challenge to overcome this.

my husband is out of work and we face serious financial challenges and I am working on taking one step a day towards obtaining support for myself so that I am

more able to feel I am contributing to our marriage .

thanks for listening 

[tyme]

I sure am listening @Minerva . Thank you for being so open and honest. Truely, the power of peer support can make such a difference in giving people a sense of hope. 

There are certainly many others who are going through complex health conditions. You are totally not alone in navigating the challenges of finding support in both physical and mental health.

That's why we are here to support each other. We need people to know they are not alone in their journey. We may not be able to 'fix' things, bit we can certainly walk alongside the person.

With your complex health conditions, do you have financial supports, therapeutic supports, NDIS or anything?

Hugs

[Minerva]

🤗 @tyme Thank you for listening.

the NDIS! Well I could honestly do a TED talk series on my experience with the NDIS, and I doubt I am alone in the perspective.

In certain circumstances, the NDIS can be life changing and at times I have experienced this. I have met with significant challenges as my medical needs cross psycho-social and physical , and at the last review which was a year and a half ago, there was no concept or entry point to have the combined impact of my health impacts considered and or included and taken into account with funding.

as I am completely dependent on the person who helps me apply and deal with the NDIS, I really struggled when a “glitch” on the side of the NDIS create huge challenges and set backs for me. As someone who previously worked in IT I understand that these incidents happen , it is just a reality of life that those that can’t “wage the war against injustice”

are the ones who have to live with these impacts.

in other news it is my hope that one day I will be well enough to be the person who can both advocate for those who are unable at that time and also  be proactive in providing the solutions to prevent these glitches.

I have seen my Support Coordinator slowly reduce interaction with me, and then I realised after being in and out of hospital that I didn’t have a support coordinator. that my support services stopped and , yes “why haven’t you phoned them” is a question I am constantly asked.

Using the phone, for whatever reason is a HUGE barrier to me accessing support. So while I am grateful that if I find a new Support Coordinator by the 20th of December this year , my NDIS plan is sorta “on hold” or something .

however, I am grateful that I am a partisant and I know  am respectful that there those who are not in my position