The Best Decision of My Life

I really want to write, but, as usual when I’m like this, so much is spinning through my mind that I cannot ultimately get anything out of my fingertips. To get myself started, I decided to look at the book Journaling with Lisa Shea and picked one of the journaling prompts on gratitude. It asks us what the best decision of our life was. Was it an easy decision or a hard one? I’m pretty sure I already covered this topic several years ago, but the answer may be different now.

After all, up till quite recently, I would have said the best decision I ever made was to consent to being admitted to the psychiatric hospital in 2007. That, after all, set in motion the wwheels that ultimately got me into the care system. However, looking back, I could just as easily have selected my choice to go to the blindness rehabilitation center in 2005 rather than to university. After all, that was what led me to the training home and to my autism diagnosis.

I honestly don’t want to give the psychiatric hospital people, particularly my last treatment team, the credit they get if I say that getting admitted was my best decision ever. After all, like I have said before, I didn’t make much progress in those 9 1/2 years in the hospital. Worse yet, the only difference between my care arrangement before the hospital and after it, was that my husband was now in my life. My husband deserves the kudos for that, not any mental health professional.

Instead, the best decision I ever made, I made rather offhandly on September 20, 2018. This was the decision to allow my support coordinator to schedule an appointment with her regional care consultant on getting me into long-term care. The appointment itself took place on October 4.

I say I made the decision rather offhandly, in that we were discussingn living options and I eventually said, sort of half-heartedly: “Okay, you can ask your care consultant to come.” In truth, the decision was a really hard one.

Even though I had planned on going into supported housing ever since my initial psych hospital admission in 2007, it felt kind of like I was betraying my husband, my parents, my former treatment team and everyone else by admitting this is what I needed. For this reason, my husband’s first words when I said my support coordinator had scheduled the appt with her care consultant, were very comforting: “You know I support you, right?”

What Day Is It Anyway? (March 24, 2020) #WDIIA

Okay, so I’m back with another #WDIIA post. As I write this, it’s March 24, 2020, 8:50PM. My paternal grandmother, my last living grandparent, the one who died in 2018, would’ve turned 96 today. It’s weird that I think about that now, as I didn’t call her for her birthday for the last several years of her life. She was profoundly hearing impaired and had severe memory loss. Then again, I could’ve sent cards, but didn’t. I do miss her though. Still, I am thankful that she doesn’t have to suffer through the COVID-19 thing.

I awoke at 8:36 this morning. Had a quick wash, brushed my teeth and got dressed. Had another bowl of yoghurt with crunchy muesli for breakfast. Thank goodness they still had full-fat yoghurt. I normally have fat-free yoghurt, but the unbranded ones are so extremely watery they’re really disgusting.

I went for two walks today, one in the morning and one in the afternoon. Didn’t go for a walk in the evening this time, but did go on the elliptical for twenty minutes. I went on it for twenty minutes yesterday too and only burned 66 calories according to my Fitbit. Today I burned 90. That’s not very good, as a brisk walk burns off more. Still, I’m feeling my legs and back now. Besides, burning calories isn’t the only benefit of exercise. I do really hope that, when I can get weighed in again, I’ll have lost weight. I usually get weighed in at the day center once a month, but not sure that will be happening now.

The week’s groceries arrived today. Tomorrow, we’re going to make toasted ham and cheese sandwiches for lunch. I’m looking forward to that.

Not much else happened today. How has your day been?

2018: The Year in Review

The year is nearly over. I have been debating whether to post a review of the year for a while, since I didn’t start this blog till late July. As such, most of the people who read it, may not be aware of what’s been going on for the first half of the year and I might need to explain too much. However, I want to do this review for myself if for no-one else. Here goes.

The year started off rather bad, with me having a major meltdown at day activities on January 3. I didn’t know at the time how significant that event would be, but it was the one event that defined me for the rest of the year and probably into 2019.

I looked back at my old blog’s posts from January 2018, and I can’t believe how blissfully ignorant I was. In the second week, I chose “Be” as my word for the year, for I intended 2018 to be a year for rest and staying present. A week later, it was decided that my day activities hours would be cut and I would eventually have to find a new place.

In late January, when I had more meltdowns at day activities, I started thinking of involving the Center for Consultation and Expertise (CCE) on my case. They had been involved with me in 2010 and 2013 previously and I’d hoped they could help me find some perspective. For those who don’t know, the CCE is an agency that helps people who fall through the cracks in the care system due to complex care needs and severe problem behavior. I didn’t really know whether my situation was bad enough, but I was desperate.

I was first told by my community psychiatric nurse, who called the CCE on my behalf and minimized my problems, that I’d have to go to the blindness agency for support. My need for sensory activities, after all, was due to blindness and I couldn’t possibly have severe problem behavior, as that would mean I couldn’t be married or live independently. This assertion caused huge internal turmoil. Some parts of me thought we must be too good for day activities and that’s why we’re being kicked out. After all, aren’t we oh so intelligent? Most of the parts in me felt desperate though and didn’t care about my IQ or our marriage in this sense for that matter.

With the help of my support coordinator, I finally was able to get an orientation meeting with the CCE in May. I apparently expressed my despair well enough that they took me seriously and found a consultant.

In the meantime, my support team and I didn’t sit still. This was why we had already found new day activities by the time we’d start the consultation at the end of July. At the time, I was feeling a bit conflicted about my living situation. My husband was trying to warm me up to the idea of buying a house in the city where he works. I didn’t feel like it, but I pushed those feelings aside. Until late September, that is.

Thankfully, the consultation hadn’t been completely closed by this time. I finally gave in to my feelings and admitted that I want to go into supported housing. I initially felt a lot of shame about this. I didn’t know whether my husband would be supportive and I knew my family wouldn’t be. Particularly when creating my care plan and reading the application for long-term care funding, I felt embarrassed. There is this voice inside my head. It’s my mother telling me, shortly after my admission to the psychiatric hospital in 2007, that I can’t even wipe my butt without a support worker’s assistance. I can, but so what if I can’t?

My husband turned out to support me. The CCE consultant is willing to stay on my case until we’ve finalized the process of getting me long-term care funding. The application was finally mailed on the 20th of this month.

Can I say this year that I fulfilled my word of the year? Not really. However, over the past few months, since deciding to apply for long-term care, I’ve felt a certain sense of calm. It seems as though I hit rock bottom this year and I can only go up now.

Besides the day activities and living situation, other things happened too. My paternal grandma died. This, for whatever reason, helped me find the strength to distance myself a bit from my family of origin. Since no longer expecting them to be genuinely interested in my life, I’ve felt a sense of calm in this respect too.

I’ve also learned to accept mysselves, that is, my alters, as they are. I am still not fully at a point of accepting myself without the need for diagnostic labels, but I am getting close.

With regard to blogging, I’ve improved much in the past year. I’ve been able to keep a pretty regular blog for five months now. I am so glad I started this blog, even though sometimes I feel disappointed in my stats. This blog is where I can be myself.

Lucy At Home UK parenting blogger