Still Housebound 6 Weeks On

[Scarlett]

Apologies that I am still bleating on about this, but I am eager for your thoughts, especially Sqad. I’ve now spent six weeks in my room, unable to shower, unable to sit.I tried to sit on my perching stool in the kitchen earlier on and I could manage one second before a massive pain in my back, and I had to lie down which is where I still am. I still can’t see it, bend or reach. It definitely feels like a disc problem – even though I also have stenosis and facet joint arthritis. It has not improved or resolved in all this time, and as I am alone with no help, I am at my wits end. What can I do now? My GP doesn’t want to give me an MRI because I had one a few months back. I have seen physio and osteopath in my room, and honestly they seem to make it worse. I have an expensive private phone call with the spine surgeon on Friday, but I don’t see how this can help as I feel I need to be examined. I can’t get to hospital because I can’t sit in a vehicle. A&E will not be interested because it is not an accident or emergency as such.
I tore the ligament in my left knee pushing myself up in bed about a week ago, which was agony, and my left elbow feels subluxed as I have had to lean on it whilst on my bed. My physio said that my muscle tone in my legs has really deteriorated. I’m pretty desperate now – any ideas?

[ducksie]

Hi Scarlett, I've read your post a few times and I have no ideas or suggestions - I'm really just posting to keep you in latest posts and to say it beggers belief that you can be left like this. I've not read your other posts regarding being bed bound but really this cannot be right. someone has to care for you. I hope someone comes along with more positive ideas x

[Sqad]

Dificult situation and I agree with the post of ducksie.

This is a problem of inadequate pain relief in someone who lives alone.

You should be in hospital.

Bite the bullet and phone whatever the number is for an ambulance. Not satisfactory but the only option.

[Scarlett]

Thanks Ducksie and Sqad. I was told to phone 999 when my ligament in my knee went, because I needed an x-ray.

The paramedics came over and basically said they would have to take me to a hospital miles away, to A&E, where I would have to wait for hours and hours, and I would have no way of getting back. I don’t have anyone who could collect me, and I can’t sit in a car – I can only live at the moment. also, I have been in A&E at the weekend before, and had to wait on a trolley just to see a physio – I need to see a spine specialist after all this time. Also, 999 are not happy unless you are showing signs of cauda equina. It’s not considered an emergency otherwise :/

[ducksie]

Would it be possible, (I dunno your age bracket ) that maybe you could be a resident in a nursing home for a while - my sister worked in a nursing home and they often had young people - just a suggestion as that way you would be 'in the system' and get the care you defintely need.

[TheWinner]

who is making your meals and getting your shopping etc? it seems to me you should be getting help from social services. p.s. sorry you are in so much pain. :(

[Scarlett]

I am 52, so I slipped through the net for most things where you have to be over 55. Shopping is delivered to me, so that’s easy, but I have lived on picnic food for six weeks. I have had Social Services over, and they decided they were not suitable for me because they could only offer help to get showered, and help to get me to cook for myself. They basically rehabilitate old people coming out of hospital.

I can’t get in the shower because I can’t sit on my normal shower seat as my back will break/give way from the sitting. So they don’t really have anything they can offer me, apparently.

[ducksie]

I kinda guessed you were in my age group, I've often been housebound and had PHN (District nurses you call them in UK) over weekly, if I got really bad that I could not look after myself - they usually ring my GP and I end up in hospital for some time and that puts me in the 'system', I see all I need to see and the one thing is always told to me is never be in pain, that's why it's terrible to read that you are, there has to be a way through this, I'm lost for words and can only think like sqad, bite the bullet, exaggerate if you must, but how worst can you be. You need to be cared for.

[Scarlett]

It’s true, I am sick of being stoic.

The fact that my back is not getting better, and actually feels worse today, I am so angry that even though I have reached out multiple times, I am still alone and in pain. I have cocodamol and naproxen but it’s really not touching the sides.

[Scarlett]

Also, Covid is putting me off being in hospital such as A&E, because it really is everywhere, and I’m in the vulnerable category.

[ducksie]

Scarlett, I've been diagnosed and treated with cancer twice through covid, I had to weigh up the pros and cons of going into hospital, thankfully they tested me every 2 days for covid, I never had it (touch wood) and I think, can you be worse off with chronic pain, don't let covid put you off seeking help despite the agony you are in.

[Smowball]

Scarlett, that’s just horrific!! You are my age and even tho I have a fractured spine you are clearly in far worse pain than me. How you can be left like that is beyond me!! Have you tried calling 111!.?? Always here to chat if you want to swap numbers/names xx

[Scarlett]

Thank you. I have phoned 111 and number of times. Including this evening. They will only help if you have had a sudden accident or a bleeding or in danger. I have asked for a doctor to phone me back, and the reception have already called me to say but they are too busy and it is likely to be 24 hours before the doctor calls. So I’m looking at tomorrow morning before I can speak to somebody.

[Scarlett]

Ducksie, so sorry to hear that you’ve had to deal with that through Covid. But is absolutely right with cancer, but I suppose that I have been dealing with this for so long, but I am too stoic for my own good, and used to just putting up with pain.

[ducksie]

I'm ok scarlett, you need to get looked after xx

[Tilly2]

Sorry to hear of your travails, Scarlett.
Is there no one that can help you?

[Scarlett]

Tilly- I’ve tried everyone I can think of! GP/social services/physio/osteo/ acute responder team / OT (they always send you an OT regardless of whether you need one), chiro won’t touch me cos of being hypermobile… 111, 999.. and I’m still here on my own in pain with no answers.

[Thisoldbird]

I am sorry you are in so much pain. I am surprised Social Services have nothing to offer you. I know they would/should prepare you a meal at least. They would wash you even from your bed.
My husband is now in a nursing home on end of life care but I've nurses him at home for 2 years. I personally wasn't happy with the staff they sent in so found 2 private ladies who came each morning to wash and dress him. They would have got his breakfast, made his bed and emptied his catheter bag had I not been able to do those jobs.
I found the first lady on Facebook. She run a small business caring and home help. Her fees were the same as Social Services but I know she did a great job.
The second lady was word of mouth..equally as caring.
Non of that helps your pain but it hopefully will give you an idea where to start getting support.
I think I would pester 111 several times hoping they take you to get properly examined.. best wishes x

[gness]

I can’t believe what I’m reading, Scarlett. I am so sorry you’re going through all this and like many others wish there was something we could do to help. God knows what though. X

[Tilly2]

I am so sorry to hear that, Scarlett. There must be someone that can help!

[elliemay1]

I have no solution either but think it's terrible that you are left like this. Could you maybe get in touch with your local councillor and see if they can give some advice