care coordinator

Let there be light

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I sucked in air with all my might

Like I was trying to light a fire in all my cells

Make your blood and sweat your sacrifice, desire your holy flame

And shout at full volume:

“Let there be light”

Intro song to Haikyu!! Season 3 (anime series about a volleyball team)

I’m still here. Still carrying on. Still dealing with OCD and anxiety. Still have days when I wonder if the effort is worth it.

I think it is. There is definitely light at the end of the tunnel.

After taking a break from running (I overdid it and hurt my knees), I’m trying again, but this time using the NHS “Couch to 5k” app to pace myself better, I’m on week 3, so far so good…

My care coordinator is changing jobs so I’ll have a new care coordinator (I’ve already been told who it will be, its a CPN I like). I’ll miss my old care coordinator.

I think that’s everything.

I’m not OK

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Trigger Warning: This post contains feelings and thoughts about self-harm.

I don’t feel able to say that.

I have wanted to cut myself, but stopped before I did it.

I’ve had thoughts of overdosing, but haven’t done it.

I feel frustrated at my own uselessness.

I feel not great.

I should probably telephone my care coordinator, but I feel like I’m not meant to do that, and I’m only meant to need my care co when they call me. It doesn’t matter that I have been told repeatedly to call them if I don’t feel great, it still feels wrong.

I did call them (as I was writing this post) – they’re in a meeting at the moment so unavailable.

I still don’t feel great.

Despondency

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When it feels like nothing matters, my OCD seems to go away.

If nothing matters then why am I trying to keep things clean?

When nothing matters I seem to alternate feeling high (some kind of euphoria) and low (depressed).

The highs feeling disconnected, or like I’m viewing the world through a different lens.

The lows feeling like doing nothing at all, just shutting down.

I mean, why would I run when there’s nowhere to go?

What’s there to fight for when you’re trapped and being trapped seems like your best option?

Context

I’ve recently changed to a different unit, which (for the first 14 days) has no leave. Initially I’ve been able to touch most stuff – as I’m trapped, what else is there to lose from touching it?

The unit has a “no visitors other than staff” policy for people in the 14 day isolation – I don’t have Covid-19 and, as far as I know, I haven’t been exposed to it. This seems to mean (at least to the staff here) that my care coordinator isn’t allowed to see me, which is something my care co. is trying to fix.

Moving day; new unit and staff

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Finally off the ward.

I’m in a rehab unit, basically a house with medical staff.

I’m in a 14 quarantine (separated from other patients, no leave, staff use PPE); I don’t have symptoms, but the health trust policy says I have to to protect the other patients and staff from Covid-19. I don’t really want to do it, but the being on the unit seems like good thing, so its worth trying to put up with it.

Being separated has the benefit that I’ve basically got a house to myself (for the time being). Being able to plug my laptop in is nice – allowed cables now (psych wards restrict access to cables for safety reasons).

The staff have been friendly.

My care coordinator has helped me calm down so that I don’t end up going missing from the unit (because of the leave policy) and explained some things that help me to the staff.

Its going to take time, and is anxiety provoking getting used to this location and the staff (as per usual for any new place). So far, mostly OK.

P.S. Only complaint is the leave policy, which I’ve covered my feelings on in multiple other posts, so not going to reiterate them.

The fear of losing control

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The fear that once surrendered, control might never be recovered.

The fear that the controller will abuse the control to put me in situations I’d never normally agree to.

The fear that the controller will be viewed as the way to get me to do something, and people stop assuming I have autonomy, and getting my PoV when making decisions.

The terror of the moment I say “no” – and the controller acts aggrieved as if its a personal insult for me to refuse to follow the directive.

The terror of being trapped in a situation where the best option is continuing to surrender control, as all the other options leave me without support.

Context

I’ve spent a lot of time thinking about what makes me scared of giving trust to and just following advice from staff caring for me. It’s hard, as I’m either fighting myself, or fighting them (in my mind, not literally).

Giving way

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Next step after being on a ward? Going to a recovery unit. Do I want to go? TBD.

Against

No leave for 2 weeks. That’s pretty much all my negatives.

It’s better than it was a couple of months ago, no leave at all; fortunately their policy has changed since then.

Would I have been under pressure (encouraged, advised, etc.) to go even if there wasn’t any leave? Maybe. Should I refuse to go based on that? Nope, that is hypothetical and deciding not to go based on an imaginary scenario is probably not a good idea.

For

Lots of positives.

  • Better environment than the psychiatric ward, more space (multiple rooms; kitchen, living area and garden to access)
  • I can have a power cord to plug my laptop in while using it (and a desk to use it on)
  • Own bathroom, no more sharing.
  • Psychologist who wants to help with my OCD
  • Staff (care coordinator and ward staff) view it as a good step forward.

Conclusion?

I feel like I should go. That it’s probably the right option. I’m just not convinced that I want to go.

Although as that that was how I felt about going onto a ward back in January and going onto the ward (eventually) helped, maybe this place will too.

I feel guilty about feeling…

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…anxious about the fact that I dislike the recovery unit’s status as prohibiting leave.

It’s OK to feel, its not bad or wrong, even when it feels bad and wrong for no reason.

I’m not in the unit yet.

I have a care coordinator who will ensure I get leave.

However…

I can still be unhappy with the policy of the recovery unit.

I can try to enjoy doing something not related to my recovery.

I can use sleep and walking as an escape.

Especially so when it feels like I can’t.

Even when just being me feels like it is something inexpressibly wrong.

P.S. I feel a bit better after writing this.