As I haven’t been keeping up with life recently, I’m gonna do a big catch up, so it’ll be all over the place. But, if you’re interested, you’re welcome to listen! (Don’t worry – no one has to read it!)
- So, there was the saga with my computer charger. The main problem was because that was the day I needed to send my novel off to a… PROFESSIONAL EDITOR! And I’ve done it. I’m terrified. I’d thought I’d feel good when I finished editing it again, but I’m too anxious 😦 I won’t hear ’til the ‘end of the month.’
- I also realised how reliant I am on my computer, and I don’t really like that fact. I hate the thought of how materialistic I am.
- My darling bottle-fed lamb Nancy is being weened: she’s down to one feed a day. I know it’s a good thing, because it means we’ve done things right, and she’s going to survive to be an adult (over 50% of bottle fed lambs die), but I’m finding it really hard. Those little moments of connections with her are part of the reason for getting up in the mornings. So I’m sad.
- Daisy (my Gran) had a big stroke (again), but recovered fantastically. She was THEN changed from aspirin to another medication to prevent further strokes. Unfortunately, she had one of the ‘very rare’ side effects, and had an internal bleeding. She has so weak, and completely white: they knew she was losing blood, but no one knew why. After ANOTHER stay in hospital where she had four units of blood – and she’s fantastic! I played Scrabble with her for the first time in AGES yesterday, and she didn’t need much help. I’m so pleased.
- They think she’s actually having mini TIAs a couple of times a week, because she shows some of the symptoms, but there’s nothing we can do. If no one’s with her, there’s no proof. And, at the moment, fingers crossed, they don’t seem to be making her go downhill any further.
- My dad’s been ill too 😦 Not seriously, but it makes everyone on ‘high-alert’ in case I catch it.
- TW: things aren’t good. I’ve been losing. And I know I’m weaker. There were two days in a row where I kept falling over, and I needed someone to help me walk. I’m fine now. But the idea is that I’m going to have tube feeding again (at my parents’ house, not hospital). Last time I was tube-fed, I was a lower weight. Finding this hard. I’m not ill enough to be tube-fed; all those symptoms went completely – I spent this morning walking around and was fine. They want me to start on MONDAY. I don’t know what to do.
- TW: I’ve got the beginning of pressure sources, so the district nurse has been over and I have to sit on these horrible things. I hate it. And there’s this little bit of me that thinks it’s good. Why does that voice even exist?
- I’ve been called to court, which is an ongoing saga. It’s the Court of Protection (CoP). I can’t remember how much I’ve said, or how much people will remember, but I was discharged because it was decided that there was nothing more they could do for me after six years. I now have paid carers 8am-8pm, and then my parents 8pm-8am. This is obviously a huge deprivation of liberty (DoLS). THEY called ME to court. And then told that the ‘interested parties’ (i.e. me, my mum and dad) had to pay £2000. We didn’t ask for it! They’re doing it to cover their own backs in case someone makes a complaint. AND they want a specialist to do aNOTHER capacity assessment on me because I’m ‘borderline’, and the judge specified it had to be a SEED specialist (Severe and Enduring Eating Disorder – I hate that acronym). I’d be happy with anyone, like it’s always been before. More money for a specialist. And more time.
- In this mess of a court thing, they managed to shut my bank account completely. God knows how or why. My card wouldn’t work at the local shop (just about as far as I go these days), so I went outside to get cash out, assuming it was their machine. Then the ATM said my card had been ‘retained’ and swallowed it. Rung HSBC. They told me to go the branch, so all the stress of going out. They said they couldn’t do anything because a solicitor had stopped it. What?? No one will take responsibility for it, they just pass the buck. It’s been a few weeks, but finally my care coordinator has got on the case, and it’s being sorted. Ironic though, that I went to something to make sure I had enough liberty, and they ended up depriving me of money?
- Back to DBSGIRL. Remember that was how this blog started out? Well, the trial is suddenly on again! But I’m so messed up, I don’t know what I want anymore. I might do another post on DBS. But I talked on Skype to Rebecca Parke, the woman in charge who said I looked like a skeleton. And my consultant said I look skeletal. I asked some of my carers, and they said it was rubbish – who’s lying?
Well done if you actually read all that! So, that’s what been going on. I’m knackered. Too tired to even be angry or upset. I just want things to end now. I’m done. It doesn’t seem worth the effort to get up most days.
Sorry to be so depressing. Hope everyone is still fighting the good fight.