Leonie Here: On Day Activities

Hi guys,
I’m quite new to this whole thing, so please forgive me if I make mistakes. Or in any case just shut up and move on. I’m Leonie. My name is derived from “lioness” and in Dutch, i also use “Leeuwin” (Dutch for lioness) as my name. I’m 32-years-old. I’ve not been around for a long while. In fact, I think I emerged last year for the first time when we had to get a second opinon on our autism diagnosis. That was a success! I’m a split off from Clarissa, who is our inner self helper. I’m more of a protector.

I emerged again yesterday only to find an E-mail exchange in my inbox between our local authority social consultant, CPN, home support staff and day activities staff. They were planning a “large meeting” about our care.

Background: we’ve been living independently with our husband since last May. We do day activities at a day center for intellectually disabled people, even though we’re of at least average intelligence. At first, we went to an industrial group, where we were very much overstimulated. Because of this, we were moved to the sensory group, which is a group for those with severe intellectual and multiple disabilities. We did well there for about five moths, until at the beginning of January, there were a lot of changes at the group. There are three new clients who all need intensive support, so consequently we get left out, being the “high-functioning” type. Some of us can’t handle this and were very irritable. We had a few major meltdowns and a couple more minor outbursts. Call us an attention-seeker all you want, but sitting in a room doing nothing all day with fellow clients who can’t talk and staff who run around, isn’t my idea of day activities. This led the manager to reduce our day activities hours. Initially, this would be for just two weeks, but I have an inkling they’re planning to kick us out altogether and this “large meeting” serves that purpose.

I had had a session with my CPN yesterday afternoon too. I had informed her I want to get the Center for Consulttion and Expertise (CCE) involved on our case. This is an agency that provides consultations on complex care cases where the person’s quality of life is in danger. “Is it truly that bad?” you might wonder. Well, not yet, since we still enjoy some of the time at day acitivities and aren’t melting down every single day. Now, however, we still do some activities inbetween the coffee, lunch and bathroom times. However, rumors have gone round about no more activities at this group, since the staff are too busy with personal care activities. That would affect the whole group, not just me, but that’s not my department. Call me whiney all you want again.

And yes, we are a complex case. We’re of at least average intelligence, yet are blind, autistic, have mild motor impairments and the weirdest set of sensory issues. We are lucky in this sense that we were allowed into the sensory group at all, despite not having an intellectual disability, let alone a severe one. Don’t get me wrong, we used to enjoy it there, but now, we’re either bored like crazy or overloaded most of the time.

In an ideal world, we’d do a mixture of crafts like soap making or jewelry-making, sensory activities like snoezelen, and movement activities like walking or yoga. We can go to the snoezelen room independently, but we can’t go for walks on our own and need a lot of help with crafts too.

Because of needing a lot of help with creative activities, we can’t function in a crafts group for mentally ill people, either. We tried at the institution, but the staff of course couldn’t help us all the time, so we went only when it was quiet enough in the activities room. Back then though, we had the nurses at our unit to fall back on when not doing well while at the unit. Now, living independently, we don’t have anyone to fall back on when not at day activities. The on-call CPN we called two weeks ago, said we’re spoiled if we can’t cope with being alone for a full afternoon. Well, screw her, I don’t care.

Back to the E-mail exchange. I fell right in when our CPN confirmed the “large meeting” for Februrary 8 at 4PM. We hadn’t been CC’d in the earlier messages, so weren’t sure whethr we were invited to the meeting. I wrote a reply asking whether I’m not supposed to come and that I’d really like to come to the meeting too. My husband said they may want to have the meeting without us. “Nothing about us, without us,” I replied. I was a bit paranoid at this time. Like, the reduction of our hours was decided upon without us and, because four people were involved in the phone conversation about it, I didn’t know who ultimatley made the decision. If my whole care team are assembling and making decisions about me, I may need to mistrust everyone.

Luckily, we were informed this morning that we’re certainly welcome to attend the meeting.

Self-Care for Sunday

It’s Sunday, which means we usually have a lot of time on our hands. We usually go swimming in the morning, but not today. I was quite tired in the morning and also a bit stressed out about the swimming, because last week the pool was quite crowded. With us being blind and having a mild motor impairment affecting our left side, we constantly swim in circles. We try to swim along the side, but this isn’t possible when there are lots of people in the pool.

Barry, our cat, had also been lying next to me in bed and pushing me aside. This caused me to wake up in some pain. I tried to sleep it off some more in the afternoon, while Barry wasn’t in bed.

After finally fully waking up at 2:15PM, I had some lunch. I treated myself to peanut butter on my bread. Usually I eat sandwich spread, which is lower in calories, but I like peanut butter more. I felt a little guilty, because we’re obese. However, I feel it’s okay to treat yourself even if you need to lose weight. I mean, it’s not like you can absolutely never have unhealthy food if you’re overweight. You need to be able to sustain a healthy lifestyle, after all.

After eating, I did exercise. I went on the elliptical trainer for half an hour. It went well. I listened to my country music playlist on Spotify while doing this. It has some really upbeat songs on it.

Tonight, I plan to relax some. Our father-in-law will be over to watch football with our husband. We don’t usually watch that, although we drop in every now and again for a cup of tea. I intend to put some soothing music on and melt a wax melt or diffuse some essential oils.

Introduction: Katinka

Hi, I’m Katinka. I’m one of the main day-to-day front runners. They’re called “daily parts” in the Dutch DID community and I think the official term for me is an apparently normal part. I do a pretty good job of appearing normal if I can say so myself. My job is to chronicle the day-to-day happenings without much emotion. We do dialectical behavior therapy at the mental health clinic and I would say I am mostly in rational mind.

I am 20-years-old. No idea why I feel like that age, as the body is 31, but I do. Not that we have many older adults in the system anyway. It’s interesitng, since psychologists and other health professionals usually say we look older than our age. Most of our family and friends disagree, but then again they may be playing nice. We don’t use anti-age products or anything, so it doesn’t surprise me if we look old.

I came about when the body was about 24 or 25. We were diagnosed with DID in late 2010 and felt increasingly like we were falling apart. Clarissa (who’s also in our system) looked for a DID therapist for us, but that never worked out, because we couldn’t get the appropriate funding.

By that time, our diagnosis was changed to BPD. The reason was a peer support group leader didn’t believe us. I understand her take on it to some extent, as we’re pretty open about ourselves and were to a compulsive extent back then. Apparently, trauma survivors aren’t supposed to show their inner worlds, as why did we create a dissociative system in the first place then? Well, our original, most significant trauma is not being accepted or even seen for who we are, so I can see how some of us desperately wanted to be noticed.

I don’t care if anyone who reads this blog is going to tell me that we’re fake. I know some of us do care. Some of us are wanting to be acknowledged, but I’m not one of them. So go ahead and tell me I have BPD and should get a psychiatrist to treat me. I don’t even care whether Dr. S, our actual psychiatrist, agrees with you. After all, I don’t write this for her or for the people who are going to tell me that we are fake.