Do I or Don't I

Topkitten

It's very simple, do I shower or not tomorrow. It is extremely painful for me to shower without because of removing strapping and replacing it before and after. I have put off showering all week but, with the heat around, desperately want to feel clean. However, 2 weeks ago I tried to kill myself on the Sunday due to the pain I suffered and a week ago I went to A&E to avoid doing so again and was treated horrendously by a doctor trying to get his own back from a previous visit when I made him look like a fool (which he was). My situation is more complicated because I cannot stand at the sink and wash nor can I move the stuff through and do it whilst sitting, at least not without help. Social Care rang today and aren't making much (if any) progress with getting help arranged and so no idea when (or if) I am likely to get any.

Not a good feeling being unable to keep yourself clean.

TK

Oxonlady

Hi Topkitten, Sorry to hear of your problems. 
Do you have a walk-in shower room? If you cannot get the help of a carer then your last resort is to sit at the basin and slowly wash yourself bit by bit.
I have to do this sometimes when my carer isn't here. Given that any movement hurts, I just do as much as I can. 
If you can't get help, it's better than nothing... 

Are you under a pain clinic? If not, can you request a referral to one? You shouldn't have to live with uncontrollable pain.

With regard to the doctor and other people who obviously don't understand your situation, you may have to accept that some people have no empathy. I no longer have any expectations of other people. I prefer to rely on myself as much as I can.

I'm sorry to hear that you are feeling suicidal. What would help you feel better? I hope you can find something to ease the pain, both the physical pain and the psychological distress. 

janer1967

Hi @Topkitten Would it be possible to get a bowl of water and the soap, sponge and towel and give yourself a bed bath ,just a suggestion it may not be possible for you

It has been very hot this week so understand how hard it is if it is so painful for you

It really is disgusting you dont have regular care 

Topkitten

I used to have regular care but 3 or 4 years ago it was taken away due to the mistakes of a young Social Worker and everybody covering it up. I have managed ever since. Lately I have become much worse and just reaching my foot to  put on and remove thus damn bandage has become too difficult. Care has supposed to have been in place since 15th August but didn't happen (according to SC, not that I trust them). I can't really carry anything due to using sticks and I don't have anything to sit on in the wet room except the shower seat and that is fixed.

Never thought I would get this bad so quickly.

TK

janer1967

Cant you have district nurses in to do your dressings 

janer1967

It is 15th August today so maybe care will be in place after the weekend 

Ross_Scope

Hi @Topkitten

Sorry to hear about that situation. 

How are you doing today? 

Oxonlady

Hi Topkitten, how are things with you today?

If you can, think about ordering a stool to place in front of your basin in the bathroom. I use mine all the time as I can't stand up. You can find adjustable-height, sturdy bathroom stools for less than £25. I try anything that makes life easier. 

Someone has suggested that the District Nurses should be changing your dressings and I agree. 
Take care. 

Topkitten

Oops, I meant 15th July not August, brain dysfunction.

It has only been the last couple of weeks it has been really difficult however, it isn't dressings just crepe bandages to put pressure on and limit ankle movement. I get these changes and they have only caught me out recently since I started relying on Social Services for help. Prior to that I was fairly well organised in advance but since late last year things have gone awry. I am supposed to be in a wheelchair, not walking at all but the system won't let me move because they are idiots and because I keep finding ways to cope for a while. Unfortunately I am running out of ideas now and still no one seems to care that I am in such a state.

TK

Oxonlady

Well, we care Topkitten, otherwise we would not be responding to your posts... 
I know you feel that the system is letting you down but in fact Social Services are letting many people down. 
I've actually been involved in litigation for 18 long months since Social Services reduced my Care hours. My life is much more difficult without those hours they took away. They've condemned me to a perpetual lockdown with their incompetence. So unfortunately we all need to keep raising our voices until the authorities can hear how Social Services is letting people in need down. 
If I get the chance to speak to a judge, I will say all this on behalf of all the people who are not getting the help they need. 

Meanwhile, I'm not sure how else I can be of help to you. I just wanted you to know that I am thinking of you. I hope you find something more positive to lift your mood, despite your challenges. Take care. 

Topkitten

Ty @Oxonlady, we all get wrapped up in our own problems and I guess I forget that sometimes. I am too in permanent lockdown but in my case it's the fault mostly of my GP.

I wish you good luck.

TK

Oxonlady

Thank you, Topkitten. For me the important thing is that despite the challenges I face and whoever the instigator is, I refuse to be defeated. I did go through a suicidal phase last year but then I rebelled!
I thought, no, this is my life and I'm not going to waste it for anyone!
So now, although in some ways I feel that I'm treading water, I do all I can to enjoy each moment. I love stroking and brushing my cat, I started an Art Project, even putting my lipstick on feels good! I don't think ahead, I just live for each now.
I hope that you, too, can find something that makes you smile and cheers you up. 
Also look at practical solutions. I was fortunate to find the Disability Law service, who are helping me in my legal battle. 
You have the right to change your GP or at least write to ask for whatever specific action you wish them to take on your behalf in order to assist you. 
I'm still thinking of you and wishing you well. 

Topkitten

Being stuck indoors makes it very difficult to change GP as I've said elsewhere and my GP is crazy to have as many patients registered as possible with no regard to whether they can cope or not. I don't know anyone who is happy with them. I need help to change and I posted as much on FB hoping one of my kids would offer, but they didn't, so now I don't know what to do. As for finding something meaningful..... I ran out of meaningful things a few years ago and with a progressive condition that is not far off making me bedbound my natural reaction is "I don't want to end up that way".

It's very difficult getting much done stuck indoors.

TK

Oxonlady

Hi Topkitten, how are things with you today?

I know that things are very difficult for you but there is a lot you can do stuck at home, if you have access to a telephone and/or the Internet.
You might like to focus on finding solutions rather than being overwhelmed by the problems. This is what I have to keep reminding myself to do because no one is magically going to appear to do this for me! My son lives 400 miles away and has his own life. In any case I prefer to be self-reliant.

With regard to GPs: if you definitely wish to change your GP, your GP can't stop you and has no say in the matter. You'd need to contact your local Clinical Commissioning Group who are then obliged to give you details on how to change your GP and provide you with a list of alternative GPs in your area. They might even suggest help with registering with a new GP Practice. Your local council should be able to provide you with a list of volunteer groups, maybe a volunteer can help you register.

With regard to your medical condition, I have been researching UK charities for four years and I know that there is a support group or charity for any condition you might have, so it's worth reaching out to them. If you'd like help with this, I'd be happy to provide you with details. 

You must forgive me, Topkitten, I have trained myself over the years to focus on finding practical solutions to everything. But I know that it's not what everybody wants. You don't have to follow my advice! I mean well, anyway. Take care. 

Topkitten

Tired today, unable to do much.

I know I can change GP but I have tried the others and they refuse to let me register unless I go to the surgery. Physically very difficult and mentally impossible.

I have a condition in my lower spine with no name as it doesn't exist, except that I have it. There are many other people with similar, lesser and greater spinal damage and none experience the pain and problems I do, let alone the ongoing nerve damage. Actually I simplify because I have a second condition which is more simple. I now have my second and third internal rupture in the cervical spine and it's the hospital that is being difficult for those. Refusing to even investigate.

I have fought and complained for years, trying to get someone on my side and all I have managed is to alienate everyone who can help.

TK

Oxonlady

Ah, Topkitten, I fully sympathise. I really don't understand the attitude of neurosurgeons, they've left me in absolute agony many times in the last 13 years, refusing to do anything even when I've had nurses in A&E telling me not to scream because I was scaring the other patients! As if I was choosing to scream with pain!
Spinal care is simply inadequate and I wish I could afford private health care. People who haven't suffered the pain from compressed nerves don't understand how soul-destroying it is.

I'm not feeling great myself today, tried having a nap but can't even get comfortable in bed. I'm too exhausted to get up. So I'll just have to pray until I find the strength to carry on. 
I hope that you too, will find strength from somewhere. Best wishes. 

Topkitten

Maybe that's my trouble. I don't scream or shout or even moan or whimper. I just put up with it. My son says I turn pale and my eyes show the strain but you would have to know me to understand that, I guess. I live alone and have done since 2005 so what is the point of making a noise, no one will hear it or help with it. So, when others are around me, I guess they don't believe what I say because I don't show it obviously.... but then it's been 15 years going up and up and it's only pain.

Hope your day is going better @Oxonlady.

TK

Cher_Scope

Hi @Topkitten
I wondered how you were getting on today? Good I hope.

Topkitten

Not really @Cher_Scope, the Social Worker promised to ring today and didn't and I tried and failed to get through to the people supposed to be repairing my recliner. Having skipped the shower, just in case, the heat is making things pretty miserable.

TK

Oxonlady

Hi Topkitten, sorry to hear of further troubles. 
I spent most of Monday (17th Aug) in A&E. Could barely move the last two days. Doctors decided that since most blood tests were not too abnormal, they'd just send me home again. Need to see specialists really but none of the NHS clinics are open. I wish the NHS was more efficient. I'm hoping things will improve because it's very disheartening to be incapacitated. I'm not giving in or giving up though, I shall carry on regardless.
Wishing you better days, Topkitten and all at Scope. 

Topkitten

@Oxonlady, A&E are absolutely useless for chronic conditions. You get told by 111 or a doctor you need to go to hospital but when you get to A&E they do nothing for you and, after a few hours, send you home again back into trouble. I have given up on ever getting decently treated by A&E.

TK

Oxonlady

Hi Topkitten, how are things with you today?
The problem is that although I have several chronic conditions, one of them can rapidly become life-threatening so they do need to check it out with blood tests in A&E.
Having said that, yes, even with a new problem, they will often put it down to chronic ill health!
Wishing you some bright moments today. 

Cher_Scope

Ah that's frustrating @Topkitten - Have you heard from your social worker since?  

Also @Oxonlady I'm sorry to hear you've been in hospital.  How are you feeling today?

Oxonlady

Hi Cher_Scope, thank you for asking. I'm still feeling tired and rather fragile, hopefully things will improve.
I hope you are well. 

Cher_Scope

Make sure to take it easy today @Oxonlady
I'm with you on the feeling tired front but hoping a coffee in the not too distant future will help me push through!

Topkitten

@Oxonlady, @Cher_Scope. Heard nothing from Social Care but the chair company called back, said they will arrange an engineer. Whether he/she will arrive before it breaks completely and sends me to hospital is up for debate. Hoping that I get an OT assessment and that isn't delayed.

TK

Oxonlady

Topkitten, wishing you all the best with OT assessment and chair repair! 

janer1967

@Oxonlady Soory you spent yesterday at A&E and hoping you are feeling a bit better today

@Topkitten Hopefully you will get your chair repaired soon it seems to have been going on for a while

You both deserve to get dome positive outcomes soon

Topkitten

Ty @Oxonlady. @janer1967, the chair broke a week or so into the Covid panic so almost 6 months, gradually getting worse and worse. Excuses have been long delay for parts, no one to take calls, no engineers working, etc., etc.

TK

janer1967

Yes the lockdown has caused issues with things like this but hopefully they are back up and running now and can do the repairs

Cher_Scope

@Topkitten I'm happy you have an appointment for your chair to be seen to, at last!  Fingers crossed that goes ahead smoothly.

Topkitten

@Cher_Scope, I didn't say I had an appointment only that they would arrange an engineer to call me and make one. I suspect another unnecessary delay.

Still nothing at all from Social Care so I decided I couldn't go any longer. I showered and now my back is killing me, which is odd because my problems don't cause back pain, lol! Everyone seems to think spinal damage = back pain but I always tell people to look up Referred Pain, which is much much worse than back pain, although no one ever believes me. Anyway, I shall see how bad I get tomorrow, which is when the real problems will kick in.

TK

Cher_Scope

@Topkitten Ooft I'm getting carried away aren't I?!  Let's hope the appointment isn't too far off then.

Do you feel fresher for the shower?  and what do you have planned for tonight?

Topkitten

Yes thx @Cher_Scope, I do feel better but had to sleep a little to recover. I don't plan anything at all these days, I sit in the broken chair and either watch TV a little or go on the internet. Don't have much else to do. I did try reading but was too tired to concentrate. This is probably when it would be nice to have someone else around but I gave up on that idea 15 years ago.

TK

Oxonlady

Janer1967, thanks for your good wishes earlier. Been feeling off colour all day to be honest. Emailed specialist requesting further tests, hopefully she will be helpful. 
I'm always hopeful that tomorrow will be better!
How are things with you? 

Topkitten

I often wonder if anyone knows how to relax more when the pain gets worse and no longer permits sleep. Sleepless nights are becoming more frequent.

TK

Oxonlady

Hi Topkitten, severe chronic pain and lack of proper sleep are both problems I'm familiar with! I can't claim to have come up with any solutions. In fact I've been trying to see a specialist about my shoulder for months all to no avail. My reasoning is that if I can find something to lessen the pain levels overall, the nights won't be so bothersome. Well, I'm still hoping that there may be be an NHS doctor compassionate enough to try and help me, in the near future.

Do you think anything can be done to assist you in reducing your pain levels? Have you tried seeing a pain clinic? 

Cher_Scope

@Oxonlady
I was going to suggest a chronic pain clinic.  I wonder if you have one local to you @Topkitten that you could get a referral to?

Topkitten

I was under the Pain Clinic for 5 years the, ofc, they made a mistake and have refused 4 referrals since. however, I couldn't go if I wanted to now, my MH issues would stop me entering the building.

The engineer came and it turns out that the first engineer didn't know what he wa, ofc he didn'ts doing. when the chair broke the wood frame was also damaged so the new mechanism cannot be fixed to it. The chair will need to be replaced but now I have to wait. The engineer also said it isn't safe to use so now I have no TV, restricted to bed and this laptop runs on battery.

OT came and added need of a chair to my report and sent it in. End of..........

I told the woman I wouldn't get through the day because of the pain let alone the uselessness of my situation. I slept a little but no one called so I started an OD at 4pm, taking whatever I could keep down then rang 111. Then I got a callback from a "clinician" but all she did was argue with me, so I hung up and took more tablets. I'm gonna try sleeping again now. Hopefully I wont wake up.

TK

janer1967

@topkitten hopefully replacing the chair will be quicker than a repair 

You need to contact samaritans or crisis team to get some support with your mental well being 

We are all here to listen 

Oxonlady

Hi Topkitten. I'm very saddened to hear of your predicament. I tried to keep your spirits up somewhat but you are obviously overwhelmed and need professional advice and care. 
I hope you do wake up and ring the Samaritans or Mind. Don't give up. Maybe you need antidepressants for a while. Sometimes they help with physical pain as well... 

Cher_Scope

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_Scope

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_Scope

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_Scope

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... 

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_Scope

@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_Scope

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_Scope

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_Scope

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_Scope

@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

Cher_Scope

Hi @Topkitten

I'm glad you had a shower yesterday and have had a chair delivered.  This is good positive stuff to focus on  Let's hope chasing the OT and social care proves equally as fruitful!! Let us know how you get on and I hope you have a lovely Thursday.

chiarieds

Hi @Topkitten - I'm pleased to read you seem a tad better. I'm writing because of your difficulty walking, & wonder if you have any indoor mobility aids other than sticks. I know this is probably something an OT should be looking at, but, if any would help, some are not too expensive.

I use elbow crutches outside (& used them inside for a short while after a fractured hip). Personally, I just couldn't 'manage' a stick(s), & found elbow crutches gave me much better stability, as well as alleviating my back pain a little. Some cost just £11-12. See: https://www.completecareshop.co.uk/mobility-aids/coopers-crutches/

There are also walking frames....the ones you lift up with each step are OK, but not great if you have balance issues. The ones with wheels are good, depending on your floor covering. Anything which helps try & maintain your mobility & independence is worth looking at, if you haven't already. Please see: https://www.completecareshop.co.uk/mobility-aids/  for some ideas.

Ross_Scope

@Topkitten

I'm happy to hear that a couple of more positive things have happened recently and I keep my fingers crossed for you going forward  

Have you had chance to see any of your favourite bands live in the past?

janer1967

@Topkitten pleased you have had few positive outcomes with care and your chair 

As mentioned maybe get some aids to help with walking I recommend the wheeled Walker as they have the seat which you can use when you get tired 

Have good day 

Topkitten

@chiarieds & @janer1967, Ty, as far as aids are concerned it is difficult to see how I can use anything other than what I already use. I used to use a pair of Fischer sticks and still use one (normally left hand) but I had to stop using 2 because I woke up at 2am one morning completely unable to move my arms and had to wait an hour for them to work so I could call for help and 3 hours for them to go back to normal. What seems to have happened is that by using the sticks and putting pressure across my shoulders in order to relieve pressure on my legs I have exacerbated the neck issues. Where I used to have 1 fused disk (due to a rupture, not slipped), now I have one fused and 2 more ruptured. I have a frame but the leg pain is so bad I still end up putting too much weight on my arms and then the second set of pain kicks into high gear. In fact the only pain free part of my body is the trunk from hips to armpits (excluding some muscle issues in my abdomen, fortunately infrequent). I have various handholds, a wet room and a frame for the toilet to avoid bending as much as possible. Also I have 2 wheelchairs, an electric scooter and a Motability vehicle with hand controls and a hoist but these are seldom used as I am not able to use them except outside the property and I am not on sufficient medication for pain control.

@Ross_Scope, I haven't been to see a named band in a long time. I did go to a local festival for a few years when I lived nearer to it but the only known name was Suzi Quatro who was there because her son was performing. As a teenager I saw Hawkwind, Slade, Thin Lizzy, Suzi Quatro, Slayer, Amon Duul II, Cockney Rebel and a couple of others almost all locally, plus was forced to see the Bay City Rollers by a girlfriend, lol! Unfortunately both my ex-wives weren't interested in music. My son has been to Bloodstock once or twice but I was too ill to go.

TK

Topkitten

Oops, sorry @Cher_Scope, missed the reply. Ty for your concern and I hope things settle a bit before I start trying to sort out paperwork and other stuff.

TK

Ross_Scope

@Topkitten
You've seen quite a few big named artists there, some of which are from before my time so I'm not overly familiar with their work, but I'm glad you were able to see them  

I hope that some day you'll be able to go back to a show, if you want to of course. I'm itching to get back to them personally

Topkitten

@Ross_Scope, unfortunately I never will. My prognosis is to deteriorate until I cannot walk at all, or even stand for that matter. Then I will spend the rest of my life in bed or being hoisted in and out into a wheelchair while I can still sit. There is no reason for this really because even the specialists have no idea why I am in such pain and I am gutted that I have only found out about Scoliosis surgery recently which, if it had been successful 10 years ago, would mean I would not be crippled now.

TK

Ross_Scope

@Topkitten

Sorry to hear that, hopefully someday there can be somebody who can help you and accompany you to places you currently want to go to but can't. Have you ever considered a befriender scheme? They can work for some

Chloe_Scope

So glad you've got your chair @Topkitten! I hope that makes you a bit more comfortable.

Topkitten

Much @Chloe_Scope. I will look into such things @Ross_Scope but I am getting close to the limit of pain I can stand so I don't know how much longer I have. It was a temporary solution at best and I had to come up with it myself, GP was and is useless because they wont put ANY effort into things.

TK

Ross_Scope

Hi @Topkitten

Yes do look into those things, I think they could be beneficial for you. And I'm sorry about the poor care you've received, have you ever tried to change your GP?

Cher_Scope

How's things today @Topkitten? Let us know how you are 

Topkitten

@Cher_Scope, don't know yet, only woke up at 2 pm this afternoon. Still waiting to see how things settle down.

TK

Tori_Scope

How are you now it's been a few hours @Topkitten? 

Topkitten

Sorry @Tori_Scope, I didn't get back on yesterday. I did ok yesterday and the care is helping. The new chair is ok but the material is a little uncomfortable with the heat but this morning I woke up with backache which isn't something I get much of and last nights nightmares were particularly distressing,

TK

Cher_Scope

Nice to hear from you @Topkitten

It's a long time since I had a nightmare thankfully.  They can take some getting over can't they?  I'm glad the new chair is ok.  Do you have much planned for the rest of the day?

janer1967

Glad you are using your new chair maybe now the weather is a bit cooler the material will be better. Maybe you have back ache as you are getting used tio the new chair it takes a while to settle when using something different

Have a nice weekend

Topkitten

I hadn't thought of that @janer1967, I'll keep it in mind.

The problem with constantly being on opiates @Cher_Scope, for me anyway, is having nightmares almost every night. Mostly I'm not too bothered but sometimes they are very nasty and last night was bad. Oddly, before the opiates, I almost ever remembered any dreams I had, just used to wake up sometimes a little anxious and couldn't remember why. Opiate nightmares though are considerably longer in experienced time, much longer than most dreams. My guess is that opiates cause a deeper sleep.

No plans for today except to pop out for milk and sugar, unfortunately I got the milk and forgot the sugar, lol! Still, I need to get coffee too and that means a different shop, so I'll probably go tomorrow. Other than that just watching some John Wayne films on TV. Can't beat a good black hat / white hat film.

TK

Cher_Scope

No you cant beat an old film on a day like today.  Enjoy your viewing with your unsweetened coffee