Do I or Don't I

Topkitten

@Oxonlady, @Tori_Scope. I have never been treated for OCD, in my past life (how I view pre-disability) it was a benefit and wasn't too intrusive, it just made me better at getting things done with some skill and it was probably exacerbated by being a computer programmer for so long. It is only in recent years it has become intrusive and, as my health goes down, so the OCD rises. However, I was treating my own Agoraphobia quite successfully until I was made housebound so I feel confident that someday I will get on top of it. A certain amount of OCD is actually beneficial when dealing with such idiots as I have recently.

As for the chair.... I have received post from the company but haven't felt able to deal with it as yet. One of my "get around to it" jobs.

Some good news though..... I have care starting Monday. How well I shall deal with it remains to be seen as OCD and carers don't mix to well, lol!

Sorry for the brevity but I had to go out today and get a keysafe as well as a few bits and pieces so I am exhausted. Hopefully I will recover, as usual, with extended rest. I made the mistake of not using the extra meds (the ones I am not supposed to use anyway) so I suffer more than usual.

TK

Oxonlady

Hi Topkitten, I'm glad to hear that you are getting a carer from Monday! Well done for persevering. I really hope it works out for you and you find your carer helpful.
I think, as with any new carer, you may have to give each other a little time to get used to each other - and perhaps a little patience. Certainly good will goes a long way!

I hope the carer has been informed about the help you need though I'm sure you will explain exactly what you need and how you'd like things done so as to avoid misunderstandings. 

Well done also for making the effort to go out today. Wishing you a good rest. 

I sat down to do the Sunday crosswords and promptly went out like a light. I shall have to go to bed soon, I'm so tired I can't stand up. 

I'm looking forward to hearing from you during the week, when you feel up to it. 

Tori_Scope

I also hope everything goes well with the carer @Topkitten, I think that's a positive step forward.

I think we've all experienced the feeling of putting off opening post! I've got my fingers crossed it's some good news.

I'm also glad you managed to get out and run a few errands. I hope the remainder of your Sunday is more relaxing  

Topkitten

And so, as usual, Social Care make things worse for me.

The care company was going to start today and the Social Worker put himself out to call me yesterday to assure me the paperwork was put through but someone at Social Care has it in for me and has deliberately delayed the paperwork for as long as possible. The care company contacted me and said Wednesday but....... I have my doubts it will be that simple.

TK

Oxonlady

Topkitten, how frustrating and disappointing for you!
I do hope that your carer can start sometime this week. 

I've also experienced the result of lazy and shoddy Admin recently. A doctor at the hospital had made special arrangements to see me on Friday, as I managed to convey how much pain I'm in. I also sent an email to Admin asking them to confirm the appointment. No one bothered to inform me, so I missed my much-awaited appointment. The doctor was not pleased and neither am I. I now have to wait another five weeks to see him.
If only people cared enough to do their jobs properly!

Please let us know how you get on this week. 

janer1967

Sorry to hear your care didnt work out for today at least they gave you a new day and it isnt too far away.

Im glad you managed to get out over the weekend it may be a struggle to do it but I always feel better if I get out even if its just for a short while.

As for OCD how about trying to reduce number of times you do things slowly eg down to three times then two and so on

Try and think of things that happen in a positive way rather than negative eg no carer today but will be on wed and what is another couple of days , you chair at least they have been in touch instead of ignoring you, and maybe a chair from OT will be a better solution and if you hadnt had the problems then they wouldnt have got involved

Take care hope you get the care and chair sorted

Ross_Alumni

@Topkitten

Sorry to hear that, hopefully it does happen on Wednesday and you don't have to wait any longer.

Topkitten

It also now appears that the woman from OT isn't returning my calls. I know I keep going on about things going wrong but that's all that seems to happen whenever I start hoping for something better than misery.

TK

Ross_Alumni

Hi @Topkitten

Sorry to hear that, are you sure that the OT was working on whatever day you tried to call (assuming today) ?

I hope there's an understandable reason why they haven't been available.

Topkitten

@Ross_Scope, I called her both on Thursday and today, left messages both times.

TK

Ross_Alumni

Hi @Topkitten

How are you today? 

Ah okay, I can only hope that she gets back to you. Have you tried getting in touch with the OT's employers to find out what's going on? I know you shouldn't have to do that, but it's all I can think to do.

Topkitten

Nothing from Social Care or OT @Ross_Scope. Due to past events I half expected to be shat on anyway. Someone high up in Social Care has decided to make my life as miserable as possible deliberately.

Had to sort out pension stuff today so I'm shattered and walking at all is now becoming an issue so I'm going back to bed. Hopefully I wont have to wake up again.... EVER.

TK

Oxonlady

Hi Topkitten, I'm also in bed today, too ill to stay up. I hope we both wake up because you never know what's around the corner. I'm determined not to be defeated. 

What if it's not actually something personal but you are simply dealing with a very incompetent bunch of people, unable to operate in an imperfect system? 

Maybe if you thought of it like that, you wouldn't expect the worst all the time, thinking that no one cares and that they are deliberately neglecting you. That can be depressing in itself. It becomes a vicious circle. 

I wish you better days. 

Topkitten

@Oxonlady, I could only sleep for an hour, nightmares woke me up as usual. It must be something personal because prior to Covid I was referred to Social Care for an assessment 25 times in 2 years and never got an assessment. That is something personal from someone high up trying to get revenge.

TK

Ross_Alumni

Hi @Topkitten

It's a shame to hear that, you deserve much better.

How did sorting out the pension stuff go? 

For what it's worth, we always hope you wake up, we always value you on this community. Maybe listening to some music might be a way to help you feel better? Judging by your signature, you're a fan of metal music? 

Oxonlady

Hi Topkitten, unfortunately I didn't sleep much either, the cat woke me up to let him out... 

What puzzles me is, why hasn't whoever referred you challenged Social Services for not taking up the referrals? Have you liaised with them to let them know that their referrals were ignored?

Also, revenge for what? What did you do to Social Services that they need to exact revenge?

Could you not contact the Council's Complaints officer? What about the Leader of the Council? (I've done both).

As a last resort, you could contact your local newspaper and ask them to write an article about the poor care you have received from your local Council. You could ask to remain anonymous. 

It appears to me, Topkitten, that you and I are fighting similar battles with Social Services. I am currently awaiting news from my solicitor. I will carry on fighting because I can't stand injustice and I'm not willing to accept a poorer quality of life because of the attitude of Social Services. I think that your quality of life is also worth fighting for so please don't give them the satisfaction of knowing that you want to give up. If I can keep going, given the state I'm in, so can you! 

Topkitten

@Ross_Scope I cannot stand silence so if the TV isn't on then music is playing and the radio all night. I do like metal but lots of other stuff too (like Pink, Nightwish & most 70's stuff).

@Oxonlady, years ago I was assigned a trainee Social Worker when my Senior one left. Tbh she was atrocious and consequently I complained when she cut my hours in half for no reason at all and without an assessment. However the complaint was whitewashed and then I was assessed in secret and she was completely exonerated and my care removed completely. I complained to my MP and all he did was to forward it back to Social Care's internal complaints dept. and another whitewash ensued. That silly young girl was protected at the expense of my health. that's someone high up. Every time Social Care are supposed to help me someone senior blocks it, so I doubt I will ever see that chair from OT because they come under Social Care in this area. My only hope was to move into a new SC area and that has been blocked too. Social Care have written some awful comments on my record that I have no legal recourse to know, let alone challenge but I only found out what they were by accident from a hospital Social Worker who doesn't come under the control of Community Care.

I have fought and fought like crazy through 15 years of deterioration to a point where I only get out of a bed or chair by sheer stubbornness, because no one else would walk or even stand in so much pain. I have had enough. I expect nothing because I get less and not even my kids contact me to see if I'm ok, because they know I'm not.

I have overdosed 5 times this year for pain control, 3 times for other reasons and fallen and knocked myself out once and still I get shat on. Honestly what is the point?

Whatever moronic bleeding heart decided that living in unloved misery is a good thing should be shot, or better still made to suffer what I do.

TK

chiarieds

Hi @Topkitten - I've been reading your posts & am sorry about the problems you're facing. Like @Oxonlady I try to find solutions:

a) Do you think having an advocate may help? Depending which area you live in, the following have helped one of our community members when they were having difficulty with social services. Please see: https://www.voiceability.org/

or try: https://www.richmondfellowship.org.uk/

If neither are available in your area, try searching for 'disability advocacy UK' to see what may be available.

b) Is a laptop rest for your bed worth considering? e.g. from Amazon:

https://www.amazon.co.uk/Adjustable-Standing-Breakfast-Folding-Notebook-Black/dp/B07PQWFZTN/ref=psdc_430923031_t1_B07VPGFM8Z?th=1

There's a customer's photo there showing his gaming laptop. This link will show you others to consider, or search for 'laptop rest for bed.'

'Hope' some of this may help, if not just say. Take care.

Ross_Alumni

@Topkitten

Great choice there with Pink, she's great. Although I prefer her older stuff. I'm a fan of metal music myself, and rock in general. I also can't stand silence, there's always something on to listen to haha

Topkitten

@Ross_Scope, metal wise my son got me interested in Five Finger Death Punch and before that Amaranthe. I particularly like both them and Nightwish because I like something very different. FFDP's lyrics are often extremely well thought out, Amaranthe use 3 singers and Nightwish have a Soprano singer.

@chiarieds, I will look into those links when things have settled a little. Ty for taking the time.

On a general note I finally had care start yesterday and managed to shower without being too bad today....... so far, I will know better this evening. Also OT have delivered a chair this morning. A little primitive compared to what I was using but then perhaps it will be more reliable. Just a little concerned with the material used as it seems more aimed at those who "leak" rather than for sweat absorption but at least it seems comfortable. I have managed to get my laptop through so at least should now be able to get online more. Still no contact from either OT or Social Care so I will somehow have to raise the enthusiasm to chase them.

@Ross_Scope, my pension assessment wasn't great. I used to have 5 different private pensions and consolidated 4 but the returns have been disappointing. I don't know if this is down to their charging structure or the markets themselves or having made a poor choice of investment structure but at least the markets are recovering from the Covid panic. However, the worrying part is that it appears that I shall be worse off when I retire than I would be on benefits unless I can find some way to defray costs. I was hit hard on top of everything else but I did manage to avoid doing anything "silly", as people call it. When I found out about the pension issues I hadn't heard about the care or the chair so at least I am feeling more positive now, not that I could have felt any lower, lol!

I would sincerely like to thank everyone who has taken the time to reply and for their support, though I seem to have gotten worse again in the last few days and my walking days are definitely numbered and I have had no luck with Social Housing (who called last week) or my GP who (called Wednesday). They just don't seem to listen when I tell them I am almost unable to walk again and this time I have no idea at all how to overcome it. Being bedbound seems to be beckoning fast and it's probably my worst nightmare.

TK