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_Alumni

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_Alumni

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