Today's episode the life of Time. To Drink

[Time_2_drink]

Hi Have started to reply to all the lovely messages thanks. Well own Bed last night Unfortunatley the sandman didn't stay around for long had to take my ventolin a few times through the night. Today as Breatheasy Day the nurse said she would come 10 .30 I sat on the a Bed from 7 trying to pull myself round nurse came just after 9 so Frank sent her up I could see her looking at the minature vodka Bottle on bedside cabinet Frank puts my dose of morning and night Oramorph in them so I have it ready. She laughed .I Had problems controlling my Breathing and usual high Heart rate low sats should have Been at Breathe easy for 11.15 was midday when got there missed the excercise couldn't have done it wanted to try though. I had my readings done they dropped to 62 so when I got not mid 70s Frank bundled me into car back home .Trip to Bathroom ridiculous figures. Just recovered and nurse turned up to monitor me Said someone would come on Thursday I told her still haven't got rescue pack so she phoned the surgery for one. .Then Hospice rang about tomorrow nurse said to go and they will monitor me .Frank goes across to chemist to pick Oramorph up rescue pack not done yet. I told Doctors at the hospital that the Doctor had stopped my nebuliser fluid August 11rh good job I had some in reserve doctor said would get it back on script and got me some from hospital pharmacy just looked at prescription it has not been put back on repeat what else can be thrown at me to say I am at a loss as to what is going to happen is a understatement. Oh and just to confuse things further nurse just rang and told me she is coming tomorrow after hospice once again thanks lovely people still intending to carry on with replies when poss x

[sassy59]

My my people are in a muddle Margaret yet you and frank are having to try and sort the mess out. It beggars belief and l really feel for you. I keep hoping you will get proper efficient treatment.

Lots of love xxxxxxx

[cales in reply to sassy59]

My heart bleeds for you just seems like one mess up after another , I have experienced similar with my poorly mum and it's hard trying to get through to medical profession because they think we know nothing and they know everything , keep on trying my lovely someone will listen to you at some point

Much love Cales xxxx

[Time_2_drink in reply to cales]

I wish they would listen even thrusting oxi meter in there faces to show proof does no good it gets very tiring

[Time_2_drink in reply to sassy59]

The one thing you could do without is more stress when trying to cope with this cruel illness and yet I keep being doled out What seems like Bucket loads it's over cast and gloomy outside feels like the summer has passed me by and Frank as missed out .love Margaret xxx

[Time_2_drink in reply to sassy59]

Got replies muddled up its further down the page just like me all muddled up. Lol xxx

[Katinka46]

Well done for telling us the tale. But you really, really don't deserve all this.

Love and the gentlest of hugs

Kate xx

[Time_2_drink in reply to Katinka46]

Thanks I just want to be heard for once xxx

[Carnival567]

Usual thing, no one seems to listen. I do hope, again, that you get it sorted out. With love xxx

[Time_2_drink in reply to Carnival567]

Ain't that the truth i,asked the questions But got no answers for my trouble and as for the physio that must be hospital politics I Don't know if I mentioned But the physio from hospital. Was coming to see me last Wednesday about using the accupella So morning after I was admitted Frank phoned and said I was on the ward only to be told would have to make appointment for when I was Back home so here it sits j Take care

[newlands]

All these things your having to deal with Margaret,but you will pull through

You take care

Dorothyxx

[Time_2_drink]

Need to Believe it will be so Best wishes it's pitch Dark Here. Now Best wishes

[Shirleyj]

I can't believe they just can't get your Meds right, that is so stressful for you to worry about as well.

Write everything you need down and get the list to your doctor, that way there is no excuse for them to get it wrong.

Hoping you get some relief from all this, you take care x x x

[Time_2_drink in reply to Shirleyj]

Hi Shirley just Been to the hospice nearly never made it panic attacks and Trouble Breathing last night sat on the Bed from 4am till 8.30 trying to pull myself together then started to wilt again Had to go to give Frank some space. They were very good at Hospice and I owe them a great debt could not have coped without them Best wishes xxx

[helenlw7]

Goodness, soulnds like one hand doesn't know what the other is doing! It seems to me that too many people are involved in your care, and that they don't actually speak to each other!

[Time_2_drink in reply to helenlw7]

I agree whole heartedly with you the only people who do listen and care are the wonderful hospice staff .

[MoyB]

Thinking of you. Xx Moira

[Time_2_drink in reply to MoyB]

Once again thank you Moira take care xx

[judg69]

Margaret, I am rarely at a loss for words, but I am now. Absolutely incredible in a most incompetent way. Can Frank teleport you to another part of England, say 50 miles away, then call 999 to get you into a more competent hospital and healthcare support system. All Best Wishes! judg69

[Time_2_drink in reply to judg69]

Sounds like a plan if only we had a Tardis Frank Been to see if nebuliser fluid been reissued it hasn't The District nurse just Been had diffrent one each time I told her about neb fluid and that The matron and Hospital Doctor asked for it to be reissued bot forgetting ourselves She said she would phone Doctors. So watch this space the hospice where amazed at all the incompetence take care

[mskpjb]

They seem to think it`s been a great step forward for us to be told we have a named doctor at the practice. The fact that you can never get to see them is irrelevant ! There`s just no joined up thinking anymore - no-one wants to be the one to make a decision. I was told that I needed oxygen by a respiritory nurse while I was in hospital - so I waited. After 3 months when I saw my resp nurse at the doctors I told her. Ooh I wonder who`s organising that, she said. After six months had to do a walk test - oh you need oxygen. Nothing happened. A year later I went on PR and the physio there said Oh you need oxygen ! I laughed and said don`t tell me- I`ll never get it. She said Oh yes you will I`ll write the letter tonight. And she did bless her.

Now I`m not alone in this. A very elderly gentleman who also attends the weekly hospice and is on 24 hr oxygen suddenly said to me last week that it had taken him 2 years to get a cylinder so that his wife could take him out in the car.

We don`t need a "named doctor" we each need an advocate to follow things up for us and see that we get what we need. My blood boils when I think what T2d ( Margaret ) has had to

put up with when It`s the last thing she needs !! Sheila x

[Time_2_drink]

Hi Sheila what a shocking story your route to oxygen is just absolute shambolic. And the poor gentleman virtually held prisoner for want of a couple of cylinders the Health service is in chaos no Doubt about it it is laughable. That I was not given evening depression tablet Because no one had ordered them I had taken own Meds in with me But Frank was told to take them home to avoid confusion and just use my own inhalers .The saga of the nebuliser fluid is ongoing. The matron on her visit to me a couple of weeks ago phoned surgery to ask for it to be reissued this was her first visit Back on the Book for a few weeks then was told will not see her till 20 September she going on leave not reissued. Frank sent in a request not reissued. Hospital Doctor said he would get my Doctor to put it back on repeat not Done. Today Nurse just Been. She said she would phone the surgery if the hospital hadn't gave me a few days supply I would be in trouble all this just Drains you. Wonder what is round the corner hope it is a rainbow take care Margaret x