Today is a truly mixed bag! I started out feeling relatively well. The flu seems to finally have left me, although I still sound a bit hoarse. Then in the morning I ate just a little too much sugar-free liquorice. This type of sugar-free liquorice has manitol in it, which works as a laxative. If I eat moderate quantities of liquorice, I’m totally fine, but if I eat too much, I get like the worst diarrhea imaginable. I thought I hadn’t eaten too much, but apparently I had. If my husband reads th is, he’s going to say he warned me.
I was still relatively okay during the morning. Went for a short walk. Then in the afternoon I didn’t feel well. This usually affects my mood before I’m even aware I’m physically unwell. I started to get really frustrated with how quickly my iPhone battery level would go down, which honestly isn’t that quickly at all given it’s an older model. Then I started to get annoyed with my fellow clients’ sounds. My fellow clients are all non-speaking, so it really is no wonder they make sounds. Just because I can’t understand them, doesn’t mean they need to shut up. Finally then I got annoyed with my staff having mindless chatter while I was trying to indicate I wanted help finding something to do. I found a simple shape-sorting task eventually, but it didn’t satisfy me. In this sense, it frustrates me that I need the level of support and low-stress environment geared towards people with severe intellectual disabilities, but at the same time need much more stimulation. My range of understimulation and overstimulation even seem to overlap a lot, so that my window of tolerance is very narrow. I try to tell myself I just need to accept boredom if I want to keep my level of support, for if I am judged to be too much of a handful, the result is likely that I get less support. That being said, telling myself not to be a pain in the neck doesn’t mean I actually am not a pain.
Finally, I started talking to my assigned staff. We agreed to try out soap making again someday soon. It’s something I enjoy and is a relatively quick activity even if I need hands-on assistance, that will nonetheless satisfy me for a while. I will ask my husband to bring my soaping supplies when he next visits me.
When I returned to the care home, I browsed my favorite soaping supplies store. I was talking to my assigned day activities staff about also knowing how to make lip balm. That’s an even easier activity that can be made more complex by using individual oils and butters rather than ready-made lip balm base. While browsing the store website, I came across a starter kit to make your own bath bombs. I’ve been wanting to do that forever, but since the goal up till recently has always been full independence, I thought this wouldn’t be a suitable activity. When I get back in the swing of soaping, I may buy myself the starter kit. It has some supplies I already have, such as colorants and fragrance oils, but you can never have enough of those. We have a bathtub at the care facility, so I’ll actually also put them to use.
In the evening, I was so excited I wanted to tell my home staff about the soaping idea and the bath bomb craziness. Then however the staff were talking among themselves for like an hour. They weren’t talking about clients, but still I beat myself up over wanting to interrupt them. That led to more frustration and overload and I eventually ended up banging my head. I feel incredibly annoyed with myself for being an attention-seeker like this, even though I didn’t act out when I thought the staff were looking. They eventually were though. Now I’m not sure whether this will eventually be used against me to kick me out. The staff said no, I won’t be kicked out, but in the end if I don’t change will they not reason life isn’t better in the facility for me? It is better, generally speaking, but I still struggle a lot.
A Multitude of Musings 
Struggle is probably normal as you adjust to many new things and situations again, hang in there.
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“My range of understimulation and overstimulation even seem to overlap a lot, so that my window of tolerance is very narrow.”
Yes – like hypersensitivity; hyposensitivity and white noise. When that triad run together it is not decent for me or those around me.
“I try to tell myself I just need to accept boredom if I want to keep my level of support, for if I am judged to be too much of a handful, the result is likely that I get less support.”
Accept boredom. Don’t tie to your level of support – it is an indicator, yes, of things which need or want to change.
“That being said, telling myself not to be a pain in the neck doesn’t mean I actually am not a pain.”
And it doesn’t mean that you’re the pain you were in the past or fear you could be in the future. As for what it DOES mean … or could mean.
“I was talking to my assigned day activities staff about also knowing how to make lip balm. That’s an even easier activity that can be made more complex by using individual oils and butters rather than ready-made lip balm base. While browsing the store website, I came across a starter kit to make your own bath bombs. I’ve been wanting to do that forever, but since the goal up till recently has always been full independence, I thought this wouldn’t be a suitable activity. When I get back in the swing of soaping, I may buy myself the starter kit. It has some supplies I already have, such as colorants and fragrance oils, but you can never have enough of those. We have a bathtub at the care facility, so I’ll actually also put them to use.”
Yay! This is where partial participation/supported participation comes in. How cool are lip balms? The kind I have are aloe and coffee and strawberry and the original. You can show independence in initiative and sourcing and the bathtub. Do you think Walter White makes his goods purely independently? [#breakingbadreference ].
“They weren’t talking about clients, but still I beat myself up over wanting to interrupt them.”
One of my big triggers too. Interruption and disruption. Hard to realise 25 years on that I too have a right to interrupt and disrupt.
“That led to more frustration and overload and I eventually ended up banging my head. I feel incredibly annoyed with myself for being an attention-seeker like this, even though I didn’t act out when I thought the staff were looking.”
Frustration; overload; annoyance. My own tendency is to assume the staff ARE looking even if and when they really are not.
“The staff said no, I won’t be kicked out, but in the end if I don’t change will they not reason life isn’t better in the facility for me? It is better, generally speaking, but I still struggle a lot.”
They might say it’s better because you can actually show this stuff and feel less uncomfortable than otherwise.
Circling/cycling here:
“I started out feeling relatively well. The flu seems to finally have left me, although I still sound a bit hoarse.”
The way our good days begin they really make us distrust.
“Then I started to get annoyed with my fellow clients’ sounds. My fellow clients are all non-speaking, so it really is no wonder they make sounds. Just because I can’t understand them, doesn’t mean they need to shut up. Finally then I got annoyed with my staff having mindless chatter while I was trying to indicate I wanted help finding something to do.”
Soundmaking and mindless chatter! The weight of meaningful language and being punished when it comes to its thresholds and requirements. It is a thing I can fight 30 years on. [see the part about intrusion; interruption; disruption; insistence: try not to use against others what was used against me].
Please tell: which is your favourite soapmaking website?
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Thanks so much for your extensive response. My favorite websites are SoapQueen Europe and YouWish, both of which are Dutch sites.
As for lip balms, they’re very cool indeed. I never used them before making them myself. I love learning about all the oils and butters you can use in them and what they do (good or bad) for your lips. I mean, it was interesting to learn yesterday that a lot of lip balm ingredients are actually allergens, possibly contributing to chapped lips.
I’m so glad the staff won’t kick me out indeed and they may even say that, even if I exhibit the same challenging behavior I did at home, at least here is staff to assist me and avert a worsening crisis.
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For that I am glad [the staff and their commitment to you – yours truly is reading Arlene Taylor just now]
Thank you too for SoapQueen Europe and YouWish.
ALLERGENS! Best check intolerances and sensitivities and all the other stuff.
Wondered if lemon was at all an allergen?
And if there were such a thing as dragonfruit lip balm?
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