Goodbyes and crying: I haven't wrote for... - Tourettes Action

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Goodbyes and crying

LittleClapham profile image
5 Replies

I haven't wrote for ages. I tried to last week but I ended up in a pool of tears and had to stop. This coming week is going to be really hard for me. Firstly I waved goodbye to my good friend 'C' who I used to live with at my old home. She is moving to a new flat in Essex. I would also like to move to a flat in Essex now. I am struggling so much in my new home. Things were going okay up until the extra service user moving in and causing no end of problems. That stressed me out enough (unexpected change plus she stared at my tics and kept telling the staff I was 'swearing at her'), but last week I was told 100% officially that the team leader M is leaving next week.

Since I moved M is the only person I have really come to trust. He has helped me more than he will ever know, not just with minor problems, but with things I have been struggling with for years. It was because of him that I felt comfortable enough to come out recently. About time too, the closet was starting to smell! He looked after me when I was sick and supported me when other staff were not kind to me. M arranges all the rotas at the moment so that I have the staff that don't treat me bad and a driver every weekend to take me to work. The office took over this week and my rota is completely messed up and I have no driver on Saturday next week. One of the support staff T, who I am starting to trust, is trying to rectify this but she is unfortunately, only support staff and in this company the support staff are treated like dirt. Oh yeah, and I nearly forgot to say that another support staff is also leaving two days after M. I worked with N when I first moved here and she was also nice to me and she's going too. Also, to top it off, this is the week I come off my 'pill' (ladies will understand!).

With all the stress and anxiety, my tics have become severe again. Shouting, punching, grabbing, falling, you name it I am doing it at the moment. Last night I had a wonderful (sarcasm intended there) tic fit before bed although that was probably because the staff forgot to remind me to take my baclofen. Whilst sitting cross legged on a chair, a tic propelled me forward and I ended up banging, then scraping my head along the rug. As my head banging hasn't been too bad recently, I wasn't wearing my helmet. It hurt. My rages are coming back, although they are more self-inflicted now (I tend to injure myself or damage my things). When I am not taking flying lessons from chairs, I am slamming my head into the wall out of complete frustration. I am starting to withdraw back into my own little world of Les Miserables and ended up learning the entire score off by heart. Needless to say I am really suffering with my depression at the moment, but the doctor was his usual not helpful self and just increased my fluoxetine once again. What part of 'I have been taking this c**p for nearly 7 years and the only time I improved slightly was with therapy' don't they understand!?

I'll finish with some good news though. Ralph and Lorenne returned on Friday. Their bonding was successful and it looks like they are going to be a happy couple forever! Lorenne is 6 1/2 months old and she's already the same size as Ralph! She's going to be a heffer! Lorenne still won't let me touch her much but I am working on it.

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LittleClapham profile image
LittleClapham
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5 Replies
catherinem profile image
catherinem

It's so sad the way care workers are treated, the do an essential job yet get paid a pittance. I'm glad you have found care workers that help, yet it's worrying that due to working conditions or offers of better paid work they have to leave. I hope their replacements will be just as helpful. Not like that guy who brought you to Birmingham one time. (He wasn't very good).

LittleClapham profile image
LittleClapham in reply tocatherinem

Ugh don't remind me about him! He was also the one in the 'cinema incident' plus there was a massive safeguarding battle after he 'restrained' me innappropriately... Thankfully he didn't move company with me!

David1082 profile image
David1082

Lucy my darling (its sam btw).... first of all, from the way you describe the home and staff... im guessing that this place is run by a private company, and not NHS!!! Have you got a CPN? have you got any other NHS staff that take care of you other than the stupid GP??? if so you need to get referred into a NHS ran home!!!!!!!!!!!!!! its not fair for you to be treated like this!!!!!!and change your GP!!!! i know this is all easy for me to just spout off, but can you get an advocate to help you. as a service user it is your right to receive quality and proper care to your need hun!!!!!!!! I worked for and along side the NHS for some years, and although different areas work slightly different, when it comes to YOUR STATUTORY rights as a service user. you have a say and if these are NOT BEING MET....... THEN ITS ABUSE!!!!!!!!!!!!!!!!!!!!! and people can and should be prosecuted for it!!!!!!!! if all else fails... take it to the papers! take it to the media!!!!! get it out there!!!!!!! these private companies cannot keep getting away with this!!!!!!!!

biggest hugs and pm us if you need anything xxxxxxxxxxxxxxxxxxxxxxx

LittleClapham profile image
LittleClapham in reply toDavid1082

I've just given up fighting to be honest. It feels like my entire life is a battle with the system. The company is private and completely useless. I don't know if I would go as far as to call the problems abuse, but possibly neglect. There aren't any NHS ran homes for autism/LD in the area, hence I am stuck here :(

catherinem profile image
catherinem

The NHS don't run many care homes, what they do run is currently been sold off to private companies. A CPN would be helpful, but you have a social worker don't you? So far you have had some good support workers, so I expect their recrutment is pretty good and whoever does the interviews is a good judge of character. Lets hope you get on with the new staff members and they stay for a long period. That's the problem really isn't it? The compnay treats good support workers poorly so they then feel they can't work for them and move on. In any caring role having the same care workers is essential. This is something that needs to addressed across the board in the care industry. Better working conditions would bring in better staff who stay with the company longer thus improve the quality of care.

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