AIBU - Is it fair for me to live like this?

Charleygirl5

ferry it sounds as though the GPs are waking up to your existence and lack of care over so many months.

It sounds like many GNs, if they lived locally, would help if they could. Please make use of the kind offers.

I made my original statement over a week ago that you should be hospitalised. I stand by it, and you would receive proper pain relief.

I would pack a bag, go to A&E, burst into tears and stay there, saying it is too painful and you need the wound dressed more than daily.

The treatment beggars belief.

It really does, and in my view ferry you shouldn’t be stoic at all but do like Charleygirl says and cry in front of nurses/ GP and medics generally.
I won’t go into details but some time ago one of my DD’s had real problems and got nowhere until she burst into tears in front of her GP. Then she got results and an immediate referral.
Glad you managed to get some sleep, but a situation like this is scary when you live alone.
Meanwhile call this The Leg Diary and keep us updated.
The other thing to do is now claim that you really are housebound as your leg has become far too painful to go outside.
Them that shout loudest are the ones to get attention!

I've tried to play the good guy from the beginning but enough now. I've done the bursting into tears, the 'I can't go on like this any longer' whilst wiping my furrowed brow, the wobbly voice and gulping on the phone. Now it's shouty angry time.

It is shouty angry time, ferry. You can do it but it shouldn't have come to this. Here's to a better outcome. 💐

If there's any nurses -current or ex - around this morning I wonder if I could ask for some advice? -

The dressings on my leg are sticking to my skin, presumably because of the fluid discharge as I have no adhesives on my skin. Yesterday it was very painful when she tried to get them off to apply new dressings and I can feel they're stuck again now - in fact I knew after a few hours of getting home yesterday that they were sticking.

Not only is it incredibly painful to have this pulling at my very vulnerable and not yet healed skin all the time, but this was part of how this sorry tale started. Pulling an adhesive dressing off of the original cut which ripped my skin off. The original cut is at last healing but the cuts caused by the rip are the ones giving the problems and where it's now ulerated and now here we are having to pull the dressings off.

Is this an inevitable outcome of having such leaky legs or is there something else that could be used to stop them sticking? I just want to be prepared when I go for my dressing change later because I'm just in a constant spiral of dressings on - they stick to legs - they have to be taken off and then we start the circle all over again.

I'm not a nurse, so I can't advise on the sticky legs thing, but I really think you need to shout LOUDLY now about this whole situation.

I was wondering how you feel about phoning 111 and asking for an ambulance??? Sounds a bit drastic and I know others have mentioned it, but you really need 24 hour care - in hospital. This is no longer something which should be dealt with at home, and especially alone.

Hope today is a better day. xx

I sympathise with you regarding being recognised as housebound. I have several different conditions causing me to be housebound, I can't even get to the surgery for a blood test ! I've been in severe constant pain for the last 3 years plus other conditions that make it impossible for me to leave home. After 3 years of trying to get the surgery to recognise my situation, at last I've been accepted as being housebound .
I've had a home visit for a blood test and a home visit GP appointment. It's so frustrating to have to deal with all of this and being genuinely ill and getting no treatment.

I take liquid morphine, what dose do you take Ferry ?
I don't drive but I certainly couldn't after I've had a dose of my Oramorph, makes me very sleepy though it only just takes the edge off of the pain.

I'm not going down the hospital route. I'm hoping there will be some decision on the District Nurses coming to me today as the one I had over the weekend was clearly very experienced and was confident she could deal with it. I have my vascular appointment tomorrow, hospital transport is booked and I just n eed to get today out of the way.

I'm taking 1.5 - 2.0 ml morphine sulphate - but it has no effect on the pulling of my skin from the dressing.

I take 6ml of Oramorph and still don't get much pain relief.

I'm not a nurse but there are dressings that you can put on a wound that don't stick, such as Aquacell Extra, which I have used when DH has a wound as his skin is very fragile now.

Nanato3

I take 6ml of Oramorph and still don't get much pain relief.

I was given Oramorph in hospital, it worked but then the itching was unbearable and they gave me just paracetamol which did nothing much to relieve the pain.

Why can’t they use a dressing and then bandage the leg instead of anything that sticks?
You will def have to ask for something different.

I understand your reluctance about hospital admission. Hope I didn't upset you by mentioning it again. You have to do what's best for you. Hopefully the nurse's visit today and the vascular appointment tomorrow will at least start you on the path to being fully healed. X

Sorry just realised that the district nurse isn't visiting today but that you are waiting for a decision about home visits. Hopefully they will do the right thing and agree to those.

There is a spray which was given to my dh after prostate surgery which stops dressings from sticking. I am sure the nurses will know what it is called and can bring along.

Just back from dressings change. The nurse I saw I haven't seen since last Thursday. When she took everything off and looked at my leg she gasped. My heart sunk.

But no, she said she was astonished. One wound is dry and healing well, the other (nastier) one is half the size, drying up and there is no granulation. I too was astonished! Half the size - but double the pain. She can't work out why the pain level is so high.

She said I must emphasise the pain when I see the vascular nurse tomorrow as it's a lot of pain for what appears to be an improving wound.

I'm now preparing to do battle with the District Nurse team who I'm sure will refuse me as I'm not housebound enough. I shall then be asking them which member of their team I should direct the invoice for taxi fares of £100+ for one week as I can't afford to pay that any more. Plus I tripped up the step to my front door today.

Some positive news today.
So difficult, though, for you to be in so much pain.
Interesting to see what the vascular nurse will say tomorrow.

Can you contact the very nice district nurse who came out to you last weekend? It will be good if you can arrange someone to help you this coming weekend although I realise that, according to them, you’re not housebound!

I can understand you not wanting to go down the hospital route if you feel it’s not the solution for you.

I’m a bit confused after your post yesterday about whether or not you could refer yourself to a local wound clinic.

I don’t claim to know anything about them but I know they exist so wouldn’t it be worth trying to make an appointment and then get there by whatever means is available ?

Who knows, if you went and were in their system, a home visit may be possible if someone took pity on you.

They are bound to be experts there, aren’t they as they are seeing wounds day in and day out.

It might be more painful because it's healing? The nerve tissues are regenerating??
So pleased it looks better.
How's your general health ?
Taking some vit c might help.

ferry23 it seems that your practice nurse isn't really taking any notice of the way your leg is reacting to the dressings she is using.

Can you make a note of the dressings so you can prevent her from using ones you already know won't suit you?

Hopefully vascular will get you on the right track at last.

The surgery won't class you has housebound because in reality you aren't. You have to have a lifelong disability for them to recognise you as housebound.
It took them 3 years to accept I'm housebound and in that time I've only been out twice , once to the surgery and once to the hospital. It goes on your records that you are housebound so all the nursing staff know that when they are arranging blood tests and such. It's difficult dealing with GP'S today, they don't seem to recognise when patients are struggling.

Better news on the healing front ferry not so on the pain, hopefully tomorrow may have the answer.

So glad to hear about the healing, ferry. I hope that you can get the pain under control soon.

Ask if there is an Analgesic Ointment which might prevent the dressing sticking. Also what non stick dressing does the V.nurse recommend. It does sound as if you may have turned the corner, but do NOT let them placate you. Keep insisting for proper care. You shouldn't need to be in hospital imo, BUT you definitely need transport assistance. Have you contacted your M.P.? Can your local Authority help? Remember questions can be raised in parliament.

ferry23

I've tried to play the good guy from the beginning but enough now. I've done the bursting into tears, the 'I can't go on like this any longer' whilst wiping my furrowed brow, the wobbly voice and gulping on the phone. Now it's shouty angry time.

I hope you’re shouting very loudly ferry. It is good news that it’s starting to heal, but not that the pain is so severe, which as loopyloo said maybe due to the healing process. All best wishes that tomorrow’s appointment goes well for you.

I have not been on gransnet for a while as DH is having health problems but I have a friend whose mother had leg ulcers which would not heal and my friend was driven to despair by the treatment for her mother. This was in Tasmania and the friend eventually was in hospital with a nervous breakdown ,not just the mother with the ulcers who was eventually taken to Sydney for care. I am appalled at the care you have had. I second the application form for attendance allowance . It’s long and tedious but should help with taxis and also I used to be a volunteer driver with the Red Cross to take patients and non driving visitors to hospital. I don’t know if they still do but it might be worth asking. I know it’s absolutely no use to you but I cried for you this morning reading the whole thread. DH sent useful advice to the friend in Tasmania and if I had read the thread from the first day I would have sent what he sent her which was very useful in addressing gps.