District nurse

[Time_2_drink]

Yesterday. I was told I was being signed of rapid response But because nurse contacted GP for me they rang me at teatime to say they were coming next week because I had to have return visit when sats where low Wednesday .I rang to find out what day they coming yesterday was told someone would ring me back they never did so Frank rang this morning was told they would ring back when nurse assigned. Just rang and told me they are not coming till week after. They said ring if you have any problems I told her I've been upstairs since Wednesday and sats still playing up can't win can I

[Magpuss]

I wonder if its occurred to them that your anxiety and panic attacks might possibly be triggered 'in part' by them chopping and changing the arrangements they make with you?

[Time_2_drink in reply to Magpuss]

They don't seem to realise what a impact all this chopping and changing does to me you are so right .

[Damon1864 Volunteer in reply to Magpuss]

It's terrible they way are are being treated. It's about time they got all this sortedxxx

[Time_2_drink in reply to Damon1864]

You are so right Bernadette I think they are just asking there hands of us. Need to try to go downstairs later or I can see me hibernating again lol xxx

[Damon1864 Volunteer in reply to Time_2_drink]

Hope you get downstairs soon, it's awful feeling isolated. Will check in with you later xxx

[Time_2_drink in reply to Damon1864]

Ok Bernadette still in bedroom door ve just sat on bed all day not laid down at all Frank has been to Boots to get me some sleepeaze get a couple of hours sleep with them but better than none xxx

[moogle]

Well since they said to ring if any problems.... ring.

[Time_2_drink]

I told them the problems I have at the momment it fell on deaf ears as usual .

[sassy59]

Hope you get to go downstairs Margaret and things can get to a more normal way of living for you.

Always thinking of you. Xxxxx

[Time_2_drink in reply to sassy59]

Thank you kindly sassy Best wishes to you and Pete xxx

[judg69]

Margaret, please keep calling. Enough is enough! I have not ever heard of such callous incompetence. I would call/write head of NHS a blistering letter and solicit aid of my MP. Call, Call, Call! I really feel for you, judg69

[Damon1864 Volunteer in reply to judg69]

Well said, I totally agree with you. Love Bernadette 😳 xxx

[Time_2_drink in reply to judg69]

Thank you when I get the matron Back I am going to ask her to go through everything with me and get some answers hopefully. And hopefully the clinical psychologist is coming with her if not on first visit on next I am going to let her know all that has happened and maybe get some answers there on Tuesday if I get to the hospice I will speak to someone they are pretty good thanks once again Margaret

[katieoxo60]

Good morning Time_2_drink, seems the saga for you just goes on and on, it seems like your problems are being put down to anxiety, even when you live alone these things happen. They most likely veiw it as Frank is there in an emergency. Not right of cause but that's how it is these days. Even Ambulance Services are under stress. Some one should ring back but even nurses have to prioritise. Wish I could give you hope, but I can't. Do you not have access to a hospice nurse on the phone ? Or could you not have an home visit from a hospice nurse ? I agree messing you around with your treatment ect causes more anxiety. I get confused if they mix my routine up and takes a while to adapt to changes. Best Wishes for a speedy resolution to your problem, tomorrow is another day as they say xx

[Time_2_drink in reply to katieoxo60]

Morning Katie what infuriates me is they say they are ringing or coming and they do neither yet when. I told them I was at PR one time they telephoned me from my Doorstep asking where I was another time I was on the way home from hospice and they did likewise .I always make sure anyone who needs to know knows what appointments I have to avoid this issue ?I only have a few weeks left at the hospice then I will be turfed out lol .I Do realise other people have need of them but both Frank and I have found them invaluable. Even though I do have panic attack before I leave the house .Grandson managed to do a couple of hours in the garden for us yesterday before the rain started hope your grandson gets yours done xxx

[katieoxo60 in reply to Time_2_drink]

Yes the hospices do do a brilliant job. Glad your grandson got some garden done during the showers. It's very showery here today and more forecast for tomorrow. My grandson, is laying the lawn this week borrowing some waterproofs incase it rains. Decoraters in on Monday the border for the walls came , supposed to be yellow but it is not however it will match the paint colours. Been busy taking down pictures, lightshades ect so my backs aching now but I will survive as the song says. I appreciate your frustration with the surgery, I get like that myself on occassions, but does not help us all the stress does it ? It seems no matter how we tell them we are elsewhere it does not penetrate so to speak. Try to help but they have a system that must be adhered to at all costs in my opinion.

[Time_2_drink in reply to katieoxo60]

Hi Katie seems you have been very busy and have a busy week to come my grandson was coming today to do some more in the gardening but has rang and asked if he can do it next week at least he phoned .Frank was going to a technology course today to do with Internet security but he wouldn't leave me I told him I would be OK to stay upstairs he said he hadn't committed himself so it was ok .Well he is still siting for me to go downstairs at least I've been and had a wash now waiting for my heart rate to go down before I can venture downstairs ..Its a good job the borders match the paint have you got the odour free paint I was very pleased with it when decorator did passage and stairs xx

[katieoxo60 in reply to Time_2_drink]

Yes I use the paints that don't normally effect my chest, but this time I have had to use some new types because they did not have my usual in the colour we need, so not sure how it will go. The stairs are a problem when your not well. I don't think, as I have a stair lift, and my chair can have the back lowered to sleep in. I will be glad to get back to a normal routine if there is such a thing hope your day is a little better today, but the weather looks aweful, and very cool here. Have to go to the local coop for some bread, was stuck in yesterday waiting for a delivery it came around five thirty. Got a letter to post to a penpal too. Took my chair away for repair on Thursday the loan one does not have heat or massage just a basic reclining chair, but its better than no chair. Why I ask myself does everything that is done these days be so long winded, faulty or complicated. One things for certain it is keeping people in work dealing with these issues. Bye for now , good luck on the health issue xx

[Time_2_drink in reply to katieoxo60]

Morning Katie The weather here is very Breezy I am still in Bed I must get myself up have been awake since 4pm with everything going round in my mind .It is very annoying when deliveries do not turn up when expected. I got a cooling pillow it was suppossed to come in August never came till I was in hospital they are good but a bit of a faff. Couldn't use it last night it had gone into a solid lump Frank had to manipulate it then it has to lay flat for several hours before it can be used again they don't tell you that in the sales pitch .Hope you don't wait to long for your chair to be repaired and hope all goes well with decorating Tomorow xx

[katieoxo60 in reply to Time_2_drink]

Hi Time_2_drink, like you I was awake early and lay thinking about the changes in my health and the fact that the GP thinks they are unimportant. Then decided I better get dressed before the workmen arrive. Yes when you buy things they don't tell you about the difficult bits do they. I bought a shower chair it was faulty but too difficult for a disabled person to assemble, no instructions either. I ended up with them refunding my money and told to keep the faulty goods. This was from a disabled aids company, they were very offensive in there email reply. Let you know how the decorating goes , did a good job last time. I hope the chair is back quick as this one has no massage or heat. Breezy here too have a good day xx

[Shirleyj]

Wow that's what you call rapid response. They will come in a week or so!! You must be so frustrated with all this. Thinking of you x x x

[Time_2_drink in reply to Shirleyj]

Frustrated isn't strong enough more hassle. Letter from oxygen nurse moved my appointment again had my oxygen raised end of July nurse suppossed to be coming August to reasses. She was off for a month. So arranged it for Wednesday coming. Then had letter to say she coming October the 6 th. Frank just brought post up another letter apologising. Not coming till Friday 13 October can it get any more stressful xxx

[Phil40]

Hi, nothing changes does it? First, how did you find the Lorazepam? Did it help at all?

Second; the Community Matron (band 7 £31k to £41k a year) who tries to look busy doing stuff but not really doing much came to Mum, after a full assessment she returned with a nice yellow folder with Mums health information, meds, etc., on it; all visits are noted in it and it is left at Mums for any other health professionals to look at and get the details. Also; there are several pages of Care Plan that she went through with Mum and I and signed them off.

Things like ' if Barbara notices spetum colour had changed then contact Community Matron ' .

Again; this is simply good practice and more importantly what she is supposed to do. She also has actions to complete such as referrals to other services etc.

Has she done this with you and Frank, because he is part of it?

If not ask her why not. What it does is state clearly what you and her have agreed to do to ensure you have the best care.

I can't see how she has though from what you say. If I were you I would contact PALS locally to help you. They are, to be frank, taking the @@@@. I would like to be there with you when she comes round.

Hope you have a better weekend, I will be thinking of you and Frank. Keep on at them if you can xx

[Time_2_drink in reply to Phil40]

Hi Phil didn't take the Lorazapam with having so few think I will be better taking them when and if we get away although I may take one half to see what reaction if any I have 0.5 seems a very low dosage so I hope they do what it says on the tin .Todays Little Drama oxygen nurse I had my literage raised end of July from 1amd 2 to 3and 4. She was suppossed to come back in August to reasses but she was of for a month carpal tunnel so appointment was arranged for this coming Wednesday. Had a letter couple of weeks ago to say been changed to 6october. Frank just brought the post up postponed till Friday 13th of October can't make it up can you Best wishes xx

[MoyB]

Good luck with getting downstairs later. I keep looking for my magic wand to make things better for you but some one has nicked it, I'm afraid. Meanwhile, I'll just send you my best wishes. xx Moy

[Time_2_drink in reply to MoyB]

Thanks moy hope you find the magic soon. Yet more messing about. Just had letter from oxygen nurse she was suppossed to come in August to check after she had raised my oxygen from 1and2 to 3 and 4. But then she was off for a month so rearranged appointment for September. I. Told them not Tuesday's because of hospice unless they came later hospice even told her they could see me there appointment was made for this Wednesday. Then I got a letter saying the appointment rescheduled for 6 October. Just looked at letter they apologise but now coming 13 October which I think a Friday always something with me xxxMargaret

[MoyB in reply to Time_2_drink]

Doh! It's surely time for something to come right. I'll keep looking for the wand! Lol! xxMoy

[Time_2_drink in reply to MoyB]

Thanks for that moy keep looking lol xx

[SquirrelsHolt]

Oh T2D your situation just gets worse as regards appointments being rearranged at the very last minute etc. You've certainly not had any luck,apart from the hospice who I know you have found very helpful towards both you and Frank. I read that you say this will be coming to an end shortly and was wondering if you could ask to continue with their support? When I read about the missed/changed appts that you've had,it is not helping your anxiety at all. Please take matters further and contact the Respiratory Consultant in charge of you and inform him/her of exactly whats happening and see if there's any thing that can be done to help you.

[Time_2_drink in reply to SquirrelsHolt]

Hi haven't got a respiratory consultant only seen one once. I will bring it up with the matron when and if lol she returns just my luck new oxygen appointment on Friday the 13 th .I do hope I can continue with the hospice after the struggle I have to get there I do find it beneficial .I haven't been downstairs since Wednesday Frank says he is making me get up today and do some excercise on the pedals xx

[SquirrelsHolt in reply to Time_2_drink]

My pedals have got a layer of dust on them lol! Think I've got a layer on me when I sit still for too long!!!!

[Time_2_drink in reply to SquirrelsHolt]

You and me Both Frank just shouted your 15 minutes are up I've asked for a extension lol .

[SquirrelsHolt in reply to Time_2_drink]

Was Frank in the Army.....I'm thinking a Sergeant Major,lol

[Time_2_drink in reply to SquirrelsHolt]

No he was in the RAF. And also his brother and there Dad was in for 20 years. Frank was brought up on RAF Bases around the country and overseas .

[SquirrelsHolt in reply to Time_2_drink]

What a good man! How wonderful to have a solid,secure man who loves you to bits,unconditionally. So come on now,downstairs you must go.....that or give me 10 squat thrusts!!! Lol !!!

[Time_2_drink in reply to SquirrelsHolt]

I think I am pushing him to his limits though trying not to. But I'm not strong enough to cope with all this wish I was .

[SquirrelsHolt in reply to Time_2_drink]

So by just moving downstairs will not only please him greatly but more than that,it is you pushing yourself to do something that you really dont want to. Comfort zones are all well and good but every now and then we have to push ourselves out of them. What harm will it do you to go and sit with Frank downstairs? Really,it won't hurt you...yes maybe feeling SOB,but that will pass and think of how happy Frank will be knowing you did it? Go on girl xxx

[Time_2_drink]

Ok message recieved and understood he has just been up and brought me blackberry pie and custard. And is insisting I eat and then have a wash and go down or it will be bed time again lol xxx

[SquirrelsHolt in reply to Time_2_drink]

Good girl...enjoy the BlackBerry pie and custard! Can smell it from here...yum,yum. I know once you're off your food it's so difficult to get back into eating again so nibble away and see how you go. When I was at my worst,just diagnosed,out of hospital ,put on oxygen etc,I found even simple things could throw me into a panic. Take everything nice and slowly, nice and easy and be moving and rest,moving and rest. I'm just Like you my dear and I've no magic remedies but if you can get your head to be a bit more positive you'll be amazed at how much better that can make you feel. After all, you've been away twice now and that's taken some real courage . I've driven to Clare's house and she's saying she will stay over at mine so we can watch XFactor and we pretend to be the judges,lol. (Think I look like Louis Walsh more than Nicole Shirtlifter!!) Cx

[Time_2_drink in reply to SquirrelsHolt]

That will be a nice evening for you Clare sounds like a fantastic caring friend. A true rarity in this day and age well I've made some progress I've had a wash and brushed teeth need to tackle hair hedge backwards comes to mind lol Been listening to pick of the pops memories .Now I'm waiting for my heart rate to go down before I go downstairs Frank hasn't put the stair lift down so I will have to wait for him to come up don't think any point in getting dressed change of kaftan only coz I've got custard all down this one sloppy beggar still better than getting it on the sheets lol xx

[Damon1864 Volunteer]

Come on Margaret let's have you downstairs, it will be a great achievement if you do it. Hope you enjoy your BlackBerry pie and custard. Love Bernadette 😳 xxx

[Time_2_drink]

I don't know if it was my dinner or breakfast first I've had to eat today it's looking pretty gloomy outside at the momment Bedroom pitch Black typical north east weather xxx

[Damon1864 Volunteer in reply to Time_2_drink]

You just take your time doing things, whatever you manage will be a great step forward for you. Take care and try not to get over anxious. Will check with you again later. Love Bernadette 😳 xxx

[Time_2_drink in reply to Damon1864]

Well some progress made just had a wash and cleaned teeth that's a major struggle heart rate went up to 134 so waiting for it to go down love Margaret xxx

[Damon1864 Volunteer]

Good afternoon Margaret how are you today. Weather here is a bit dull and breezy but not as. Don't blame you for staying in bed if you haven't had much sleep, you get some rest. Hope you are feeling a little better today and Frank is ok. Have a relaxing day, I am not to bad at the minute, just a bit of pain in my chest. Will check in with you later. Take care love Bernadette 😳 xxx

[Time_2_drink]

Hope your pain goes soon Bernadette I've stayed in bed because I can't face getting up Frank tells me i have to I hate being this way just so depressed it's awful can't be bothered doing anything even brushing hair and it sure needs it Frank never signed up for this life that's for sure. Wish I could pull myself together but I am just not coping being on oxygen and yes I know the alternative I think when I stay in bed I can pretend I am normal and all is ok sorry for droning on Bernadette you look after yourself xxx

[Damon1864 Volunteer in reply to Time_2_drink]

Please don't ever be sorry Margaret, these things can't be helped. You just take care as we are all worried about you. Frank is doing a great job and is caring and supportive. Take care check in later. Love Bernadette 😳 xxx

[Time_2_drink]

Well I've managed to drag myself downstairs Frank gone to get a bit of shopping. I wish I could do something in the house to help him but I only need to move a muscle for sats to tumble on isn't it strange when fit you would just love a lazy day when I'll it's reversed just wish you could be busy Hope that pain as gone now take care xxx

[Damon1864 Volunteer in reply to Time_2_drink]

I know what you mean, I wish I could do more in the house, I do what I can but get very breathless and tired. There are times I feel so useless. You take care glad you managed to get downstairs. Love Bernadette 😳 xxx

[Damon1864 Volunteer]

Goodnight Margaret, hope you sleep better tonight.xxxlove Bernadette 😳

[Time_2_drink]

Night night xx

[Damon1864 Volunteer]

Good morning Margaret hope you are feeling better today. Hope the decorating goes ok. Have a lovely day, will check in with you later. Love Bernadette 😳 xxx

[Time_2_drink]

Morning Bernadette was suppossed to be going to breathe easy but my sats have been low all night and I'm coughing up green stuff again plus bit of blood did tell doctor wasn't concerned. Think some wires been crossed was replying to Katie oxi about her decorating hope you have a good day xxxx

[Damon1864 Volunteer]

And you Margaret xxx