Phillip the Penguin Says Hello

Another bullet point update post as not doing great.

  • Johan’s legs started working last Thursday as quickly as they stopped. Still no idea what caused it, but he’s better now. He got home on Friday.
  • I stayed at the care home for a couple of days to let him get settled. I got home on Monday.
  • Care home said they’d contact social services for me as we need to speak to them. Not heard since but will give it a few days.
  • I’m really not doing very well. It’s an odd thing- I can do more in some ways (be propped up more, go on puter, watch telly) but a lot of my symptoms are worse and my thinking brain is now very very bad. Not doing things doesn’t make things any better though.
  • I have 2 weeks now to get the ESA50 back. We’ve not started it yet. I won’t be able to help, but we have had an offer of help to fill it in so I have asked Johan to contact them soon about it.
  • I have lots of appointments coming up and no idea when any of them are as they’re not in the calendar. I’m scared.
  • I think I might need some help with my mental health soon. I’m having major issues dealing with things. Not sure what help there is for someone who can’t really hold a conversation though.
  • I visited Johan twice in hospital. The second time he gave me a penguin. His name is Phillip, he is very nice and he has blue feet.
  • Having a specialist profiling bed and an air pressure relieving mattress helped me massively. I’ve had an increase in my pain levels since I got home.
  • I lost more weight while I was in the care home. I’m now underweight by every measure. Johan has lost the contact details for the dietitian.
  • My ability to communicate is getting worse.
  • I’m still mostly happy, and I could be a lot worse.
  • Penguins definitely make me happy.

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