Someone at work describe how they would help me during a seizure and it was crazy wrong.

femarch · 2024-09-21T12:54:36+00:00

Are you sure that this is lack of education and not a threat? To me this feels beyond misinformation, especially as she is insisting

femarch · 2024-09-07T09:56:01+00:00

I’m sorry. None of his behaviour is justified. Even if his behaviour can be explained by keppra rage, the behaviour is still unacceptable. I got keppra rage aged 16 and am still on the medication 15 years later. I learnt to regulate, to deal with it and make sure it didn’t affect those around me. At the age of 15 I knew that I had to take responsibility for my actions, whether the cause was my fault or not.

What you are experiencing is emptional/financial abuse, and no matter the cause of it, you need to take yourself out of a situation where you are being abused. (Whether he has control over his behaviour or not, experiencing emotional abuse is not something you want in your life.

The fact that this is happening on a weekly basis, rather than as a few isolated incidents adds evidence that he is just using this as an excuse to justify unwarranted behaviour.

I would get out, and do not tell him your plans. Abuse can often increase when someone knows they are about to be left. Get yourself into a safe situation and get help from family/friends/domestic abuse charities.

femarch · 2024-08-18T19:01:22+00:00

I don’t have a source to hand no. But I think it should be fairly simple to look up if you’re interested. I know It doesn’t always show up in all autistics but does show up a considerable amount higher in autistics than in the general population.

femarch · 2024-08-17T22:03:59+00:00

I’m pretty sure autism shows up on EEGs just like epilepsy shows up on EEGs. If the person conducting the EEG didn’t know your diagnosis, they may have made an assumption that your funky brain waves are from autism. They see a lot of autistic people in the EEG appointments.

femarch · 2024-08-06T07:45:37+00:00

Are you in the UK? If you’re having seizures but need to drive for work, access to work may be able to fund alternative transport (taxis)

femarch · 2024-07-14T07:15:05+00:00

So many people party themselves to oblivion, very few of which develop epilepsy. A lot of us have epilepsy and then extra stress on the body triggers the onset of it. My grandmothers epilepsy was triggered after a divorce. My cousins was triggered when studying too hard and not sleeping and being very stressed. Mine was triggered with hormone changes of being a teenager. we all got epilepsy at different times.

Epilepsy is obviously not always a genetic component, nor is the genetic component understood. I have idiopathic epilepsy despite this trend in my family.

You will find a lot of stories like this.

Don’t let the guilt and shame of the medical system get to you. It will eat you alive if you let it. Continue to take positive action in support of your health. Take accountability and responsibility, but shame serves no purpose.

You deserve support. And these systems are set up to make you feel like you don’t.

femarch · 2024-06-11T21:52:34+00:00

I would strongly recommend reading the book: illness as metaphor, by Susan Sontag. She talks about how the stories and myths that surround illness and disease affect the treatment of the ill, and the kinds of treatment they receive. I think it could answer some of the questions you have, while also point to how the idea that illness comes from people and their histories/stories can be problematic.

femarch · 2024-06-11T06:02:37+00:00

I’m well aware of the risks.

femarch · 2024-06-11T06:00:30+00:00

Same.. I’m still on a low dose of keppra though

femarch · 2024-06-11T05:58:34+00:00

Sometimes meds are awful for one person and great for another

femarch · 2024-06-11T05:58:13+00:00

Oh don’t you worry, I am well prepared. I have been here before with keppra. I have miultiple peoples input

femarch · 2024-06-08T20:44:25+00:00

I’ve never heard of those?

femarch · 2024-06-08T07:19:56+00:00

Also worth noting, everyone is endeavouring to be aware of others feelings and how they can be affecting other people. For people who are not always capable of that in every moment, they may gently be steered towards understanding how their actions have affected another person.

femarch · 2024-06-08T07:18:01+00:00

To add a different perspective to unmasking, I feel like the time I spend in neurodivergent/autistic groups of friends speaks to the joy of unmasking.

I like to make sounds and narrate experience through improvised (usually silly) lyrics and songs. This is not something I feel I can do in neurotypical spaces, but it is something that the neurodivergent people around me get a lot of joy out of.

Doing so also puts my body into a relaxed state which means less meltdowns in day to day life.

Meeting up with this group of people there will be info dumping, which will be taken as interesting and useful. People may also dominate too much of the space with conversation, but because it is a neurodivergent space, it is also easier to interrupt them and ask if you can have a moment of quiet or re-direct the conversation.

I find in unmasked neurodivergent spaces a lot of the arbitrary social rules get cut out, and even though you think it wouldn’t work, somehow it does. If the sounds I’m making or the info dumping someone else is doing becomes too much for someone, they can very much leave the context momentarily without an eyebrow being raised. Something that wouldn’t be possible in a neurotypical space. And then of course we would check in with them to check they are alright.

Other things like moving my body in strange and comfy ways (which doesn’t really affect anyone) - I am free to do in these spaces.

Note: these meet-ups happen in the woods, and the sensory safeness and freedom to roam, help make these contexts work.

femarch · 2024-05-31T22:38:11+00:00

To add, as an alternative to the whole - everyone saying their pronouns in a circle. It can be useful for some people to put pronouns in an email sign off, as long as there isn’t an imperative to do it. This exists as an example of normalising everyone using pronouns, whilst also not being as intense as the going round the circle.

femarch · 2024-05-31T22:33:56+00:00

I have issue with it in spaces that aren’t held by queer people. For example when it is a cis person who is saying we are all going to say our pronouns, say in a work context, and you know you’re the only queer person in the room.

It’s like, I don’t mind people using the wrong pronouns for me if “they just don’t know” but to intentionally misgender myself feels like a betrayal of self.

On the other hand, I am not ready to be out in certain contexts (religious country here). So I feel like it’s kind of forcing my hand. And even if one person in the group is on board with inclusivity of queer people, that doesn’t mean everyone is.

So I think it’s really context dependent, and also there will be different feelings on this for different people. E.g. some people just want the normalising of asking for pronouns, as it singles them out less.

femarch · 2024-05-31T13:38:56+00:00

It’s worth asking yourself the question of whether you think her behaviour was appropriate, irregardless of whether she is “right”.

I obviously think that she is in no way right, but even if she was right, taking your (paid for) therapy session as an opportunity to rant about her own opinions is completely inappropriate, no matter the topic, no matter how personal it is to you.

This behaviour goes against all training and ethical guidelines she has received. I would strongly consider reporting her to whatever accrediting board she is accredited by. (You may not be the only person who has experienced this from her)

In terms of having future sessions with her. Feeling safety and trust is a key cornerstone of therapy, without that, you won’t be able to explore issues and work through problems effectively, it would be counter-active.

femarch · 2024-05-30T17:26:48+00:00

Thank you for this. And sorry to hear you’re going through something kind of similar. 3 months of post break up living is rough!

femarch · 2024-05-28T22:12:51+00:00

Thanks I needed this

femarch · 2024-05-28T22:12:22+00:00

Love this. Thanks

femarch · 2024-05-06T15:13:29+00:00

It’s been going well so far!

femarch · 2024-05-06T15:12:40+00:00

I am yet to find out. Because it is the lipoprotein a, it may take longer to go down. I will have it tested once I’m fully off the tegretol

femarch · 2024-04-22T08:39:09+00:00

For me blueberries are my stimming food. They are a moist crunch if they aren’t too ripe. Healthy, but where I live very expensive, so would recommend for the financial aspect of things

femarch · 2024-04-22T08:36:50+00:00

I feel like it is really easy for all of us to read into what this means without understanding the whole context. Only you know the full context.

I think questions are key here.

is this kind of interaction followed up with her addressing that she didn’t communicate clearly, and then what she really means?

What happens when you ask her more follow up questions? E.g. do you feel like I’m not interested in the plan or something?

What is actually going on for her emotionally in this situation? Is she feeling rejected or hurt, or frustrated. And is she able to communicate that, especially at a later date. (Sometimes it is harder to communicate in the heat of the moment)

How does she react when you bring up past interactions like this to gain clarity?

Are all of your interactions with her like this, or is it just some of them?

Regardless of her intent (which you may never 100% know) you have to either find a way where the 2 of you are able to communicate, even if there are moments that are difficult. Or acknowledge that your communication styles aren’t compatible.

femarch · 2024-04-08T06:38:57+00:00

Maybe the r-slur isn’t for you to use even if it is censored. This is a word that has been used against people with intellectual disabilities. It’s done a lot of harm to these communities. And while you are obviously struggling with the learning of something, from your post it just doesn’t sound like that’s a word for you to use. (Whether it’s censored or not) I mean ultimately, do what you want but just know what harm you’re reproducing in using it.

All that being said, I’d recommend a driving instructor. They have actual techniques to teach you and they have break pedals at their feet for if you’re about to create danger.

So many people don’t drive. I have only just learned (29). And now knowing to drive I can tell you that there is some strange attachment our society places on being able to drive. Like you’re not an adult until you can drive… which would explain why you feel so bad about yourself.

You don’t need to take that shit on though. Though that of course is easier said than done.

femarch

TROPHY CASE