Do I or Don't I

Cher_Alumni

Hi @Topkitten

I've sent you an email, if you could please read it asap and get back to me 

Oxonlady

Hi Cher_Scope, I'm very concerned about Topkitten. Is there anything we can do to help him? 

Cher_Alumni

Hi @Oxonlady
I know it's difficult but please don't worry  We are doing our utmost to support @Topkitten through this challenging time.  It's great that he has people like yourself who care about him and the whole team are here whenever he needs us.  

Topkitten

I thank you all for your great comments and helpful support @janer1967 , @Oxonlady and @Cher_Scope but, as you may now appreciate, what I did didn't work and I am still here.what I do next I don't know. Sorry but I am not really up to saying much.

TK

Adrian_Scope

Morning @Topkitten. Thank you for coming back to update us, we've been worried about you. I know you're not really up to talking at the moment but we really want to try and help you get more support and we've sent you an email to explore the possibility of this. 

Topkitten

I have replied to the email but basically I need support from people here and I'm not getting it.

TK

Topkitten

Sry by here I mean physically in my area @Adrian_Scope

TK

Oxonlady

Hi Topkitten, glad to hear from you this morning. 
I'm wondering if there's an organisation or charity in your area that could help you. Someone objective, who can look at your situation with a fresh approach and take positive action. As you say, this depends on where you live and local services vary. 

Take it easy, look after yourself and let's hope someone can come up with practical help for you. At least you know that there are people here who care about you. 

Topkitten

I do appreciate that some people here do care @Oxonlady but I need to feel that I am making progress.

What finished me off was the loss of my recliner. Not only could the engineer not fix it because the first engineer didn't do his job properly I was told they would telephone me with their decision. They didn't bother. So that was when I gave up on everything.

Since then I still haven't been contacted, so I called them today and got some jobsworth going on about having to wait for a report and giving all sorts of excuses why she wouldn't even chase it up. So I have now decided to get a chair through OT and told Oak Tree Mobility that as the product was mis-sold and is unfit for purpose I would require them to pick up what is left of the broken chair and I insisted on a refund. The jobsworth went on about waiting for the report to make a decision and I explained that if they didn't agree I would get a solicitor onto them. Then I hung up because she went on and on about the report. I'll ring them again tomorrow and have another go. Even if they had agreed to replace it I had to wait over 8 weeks for it to arrive and I cannot get through that length of period as I am now.

Currently I have spent almost all day in bed. The table that goes over the chair with my laptop on it is alterable but won't go over my bed because I sleep ion a 4 foot double not a single. As the bed is electric and cost a small fortune I have no intention whatsoever of getting rid of it. Without the table the laptop goes on my legs which cannot take it for long (why I haven't been online hardly at all today. Also, when sitting up, I have no way to reach drinks or the telephone and have to have cigs and ashtray on the bed cover. I have no access to TV at all and yet I am paying Virgin for their crappy service constantly. I will have to change that but for now it will be difficult due to not reading the letters they initially sent me (supposedly any way because I have gone through all my post and can find no "welcome letter").

Not feeling great tonight but not in such a low state as before so ok for now.

TK

Oxonlady

Hi Topkitten, I'm glad you are feeling a bit better despite your problems. 

I hope you do get a suitable reclining chair from the OT. Could you not ask if you could have one of those tables with castors that people use at hospital beds? Would that be a suitable table for your bed? You could keep snacks and drinks near your bed and perhaps even place your computer on there?

May I just say something, Topkitten, but please don't take it as criticism, it's not what I intend it to be. You said "What finished me off was the loss of my recliner". This really puzzled me. I understand that you need things around you to work so that you can at least be comfortable. But surely the value of your life is far above all of these things? Yes, you are facing considerable challenges but they can be addressed, whether it's by the OT or a charity or the council. It may be that different people can help you with different things? 
Don't despair, there may be avenues you haven't explored. I wish you all the best. 

Topkitten

I understand @Oxonlady that it seems trivial but it isn't just that. My eventual ending will be to be in too much pain to stand and to spend my days lying in bed with a cholostemy (spelling?) bag attached and wearing a nappy (just like when I came out of the coma). It's an absolute anathema to my earlier life of activity to end in such a way and, without the chair, I am in bed and stuck there. My ending terrifies me (even in part) and so I need the chair to avoid such an ending as long as I possibly can. Added to which I have thrown tons of chemicals at my system in the past and have yet to find any combination that even does me harm let alone finishes me off.I don't think I actually believe chemicals can do anything against such a resilient system as mine but it eases my mind to try, if that makes any sense. However, if I had a choice, I would voluntarily go before such an ending occurs because I see no point staying alive for the sake of it. Maybe if my kids were more interested in visiting and spending time with me I might feel different but they only seem interested in presents at birthday and xmas, not in helping.

TK

Topkitten

One further thought on that subject is something that I feel has been forgotten. A group called "Amaranthe" use this line in a song.......

"The goal in life is not to live forever but to create something that does"

Personally, as I cannot follow that idea, my life is worthless and has no value to anyone else.

TK

Chloe_Alumni

Hi @Topkitten, seems like a while since we last spoke. How are things today?

Oxonlady

Hi Topkitten, thanks for your thoughts. Please note that I did not say that the practicalities of daily life are trivial. I'm in constant pain myself and anything that helps or provides comfort is to be welcomed. 
When I wake up every morning I have no idea if I'll be able to walk. I keep my hopes up and keep trying. I never look beyond today. Each day is enough to cope with. I can only do my best for today, the future is not something I think about. 

With regards to your children, I do understand. I miss my son terribly. But I raised him to be independent so I can't now complain that he's busy trying to establish a life for himself. So I give him space and have no expectations. Love can't be demanded.

Also, I want to remain as independent as possible, especially psychologically. I don't want to depend on anyone else for my happiness, not even my son. 

I agree with the Amaranth quote, that's why I began my Art Project. Maybe my canvasses will be my legacy... 

There is, however, another valid reason for living. Simply to learn to live with ourselves, make peace with our lives and find some joy wherever we can.

You say that your system is very resilient. Well, maybe your body is telling you that it wants to live and you are provided with the opportunity to find a peaceful way to live. Especially in the now. 
So it's a good idea to pursue anything that makes life more comfortable for you. Use the skills of your past to do more investigating into other sources of assistance. I wish you success in this. 

Topkitten

@Chloe_Scope, ty for asking but today is yet another bad day because I am in dire straits with the suppliers of the chair. They are now insisting that the engineer that called wasn't an engineer at all and they want to send the part back with a "real" engineer (presumably to fudge the fault and leave it dangerous to use) and, because I won't discuss this are forwarding further details to an ombudsman. They are obviously used to supplying inferior equipment completely oversold to those in great need or they would not be so familiar with the process. I think that this modern world we live in which is supposed to be good is actually disgusting and is run by people only interesting in money at any cost and taking advantage of people especially those in great need. I cannot imagine a worse world to be forced to live in.

TK

Oxonlady

The mystery deepens with regards to your chair, Topkitten. 
If the first engineer who came wasn't a "real engineer", who sent him, why did they send someone unqualified? And if you did allow the new "real" engineer to call, what guarantee do you have that the chair really will be fixed? If he says it can't be fixed will they replace it for you?

What does the OT say about this?

Sorry to hear about all this bother you are having. 

Ross_Alumni

Hi @Topkitten

I really hope that the "real engineer" is able to help with the chair. I'll keep my fingers crossed for you. 

Topkitten

@Oxonlady, @Ross_Scope. Here is what happened.... first the official repair company sent out an "engineer" who looked under the chair using his phone for light. He had no tools and took nothing apart, he couldn't because he brought no tools indoors. It took me 4 months just to get someone to look at the problem. He said the mechanism was broken and left. I had to wait a month for the new mechanism to arrive which I was told would just be delivered and then an engineer arranged after that. However, I contacted Oak Tree Mobility to let them know in advance when it was being delivered. On the day of delivery an engineer called me and said he would install the mechanism. He brought it in and his tools and dismantled the chair and then found out the wooden sub-frame was also damaged and it would not be safe to install the mechanism. He took photos and sent them to someone and had a long conversation but he also described to me the exact problem. Now Oak Tree are stating that he wasn't a real engineer but, as he works for neither them or their installation company they have no idea what his status is and, tbh, I think he was better qualified than their "tame engineer". Now they are saying they want to send another "tame engineer" to install the part but they cant because the guy that brought the mechanism also took it away again. My real worry is that they will bodge the job just to get it out of warranty. So I said no, I want a refund. The very next words they then said was "we shall go to the Ombudsman then". That was far too quick for a caring company selling to vulnerable adults and implies their goods are often shoddy and they rely on the Ombudsman to win cases.

What I need to do is dismantle it myself and photograph the damage to use as evidence. They obviously aren't used to someone fighting back, I think. I think I also have to check dates because i believe they are saying that warranty started on the day of purchase and not the delivery date 2 months later, which to me is wrong.

In the meantime I am getting a chair through OT as it is now on record that I MUST have one constantly for health reasons.

Now, as for why this has affected me so much...... I have always been high OCD and since I got ill that has become much, much worse. I have problems with carers and especially my cleaner because everything absolutely MUST be in certain places but other people tend to put things where they think it should go. It drives me insane because I can never find it again. I even have to have things spaced just so on the worktop, not pushed together. Tubs or pots must not be refilled until I am ready to have it done and even soap cannot be thrown away just because it is starting to break apart. LOL!!!! Then there is my "everything must be done 4 times" issue, like checking doors and windows at night or if I leave the property. I know it drives ME to distraction, let alone how it makes others feel. I am trying to work on the 4 times issue and some things I only have to do twice (like checking the fridge door is shut) but it's very hard work and sometimes leaves me fretting.

Anyway this is getting long and I can't have the laptop on my legs for long because it's a gamer laptop with 17 inch screen and is very heavy on my bad leg and gets more than a little hot.

TK

Tori_Scope

What a nightmare @Topkitten At least you're able to get another chair through OT to tide you over. I think you're right, they're not used to having people fight back.

I'm sorry to hear that you're OCD has been impacting your life more, but I think it's positive that you're trying to work on it. That must be difficult to do on your own, though. Are you getting any support to help you with your OCD at the moment? It sounds like a very frustrating situation.

I really hope the chair situation finally gets sorted. 

Oxonlady

Hi Topkitten, thanks for explaining about the chair, what a palaver! Which Ombudsman is the company referring to? Isn't this something that Trading Standards can look into? The chair is obviously faulty and should have been been replaced or refunded.
I hope you do get a nice chair from the OT. Can they also provide some sort of trolley or table to keep next to your bed? Anything to make life easier...

Thank you also for explaining about the OCD. This must be difficult for you, on top of your other problems. Is there anything that helps you? Have you ever had treatment for the OCD? It's not an easy condition for other people to understand...