What Next I Ask

Today was Meal and entertainment with Breatheasy. I Told Hospice yesterday I wasn't Going. Also District nurse Because my Anxiety. Is sky High. .Most of last night spent sitting on Bed Trying to Breathe. .This morning Frank was adamant that I was going He said you are not going Back to staying upstairs all the time Which is what I want to do now I've tried really hard to improve my situation But it feels futile when you are fighting for every Breathe and frozen to the spot One of the Senior nurses from Hospice phoned this morning to make sure I was going to Meal Did go But had to leave early District nurse coming and she also wanted me to go we had to leave early to be back for her visit .When we got home I physically couldn't move from stair lift again. and had full blown panic attack and the nebuliser decided not to work good job bought Battery one still have not got fluid from doctor all I have is 2 Days supply from the Hospital. The matron requested some before her leave Frank also. The hospital and 2District nurses. Today she is fuming Phoned surgery from here and she told them it is urgent so we will see what tomorrow Brings She also suggested that Doctor gives me anxiety pills whilst all this going on she took my sats and they are below the target range so she had to phone surgery to tell them out of hours Doctor may be coming out .Just had phone call from nurse aDoctor wants her to come Back and redo sats so just waiting for her to come Back she's Just gone sats just on target. So she coming Back tomorrow so it starts all over again and extra worry that we going to centre parcs. Next Friday why Did I Book it and will we Be able to go. Everything so hard .My Grandson just Been to see me I couldn't even go Downstairs. To see him he came up to Bedroom. Not how I want him to see me I'm not the nana he knows anymore .

42 Replies

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  • Oh bless you Margaret, seems like one step forward and three back. I hope the nebuliser will help and you get everything you need. Wishing you and Frank all the best.

    See how you feel about Centre Parcs but the break could be a good thing.

    I'm sure your grandson just loved being with you.

    Take care xxxxx

  • Thanks sassy i was looking forward to centre parcs. But I think I was being unrealistic and seeing the me before oxygen going away not the person I am now tied to oxygen and wheelchair Daft things like what about when I need the loo go through my mind I tell you my mind is super active lol ?I know the Break will do Frank good if I can pull myself together we can't loose anymore money on holidays Before I was ill I had Booked Ireland and Bournemouth and lost money on both Grandson going to earn a few bob doing some gardening for us he is at college so needs to earn a bit of pocket money take care of each other xxxx

  • Awe Margaret I wish they could get you sorted and feeling better. It must be hard for Frank as well, him having to watch you getting anxious and upset. I really hope things get sorted. Will chat again tomorrow, get plenty of rest and try to relax. Love Bernadette 😳 xxx

  • Thanks Bernadette yes it is hard for him to see me this way xxxx

  • I really feel for you , I know what it's like to suffer from panic......not just panic attacks but permanent anxiety, as you say to be frozen to the spot with fear.

    I hope you get anti anxiety pills soon, I was given Seroxat when I was at my most anxious.

    Have you been given oral steroids to take......I was prescribed a long , slowly decreasing dose of prednisilone to get my breathing under better control and reduce inflammation. It worked for me.

    Best wishes

  • Thank you you understand what I mean it is like you are totally rigid with Fear ?I haven't Been given anything to help with Breathing or anxiety When the matron comes Back a psychologist from the hospice who came to see me before is coming and I am hoping she will prescribe something. Along side my anti depressants The nurse today saw how it is making me act and could see the fear she was fuming at how GP is treating me in regards to nebuliser fluid it looked like I was headed Back to hospital at one point But realistically what would they do just get sats up and send me home again Best wishes

  • Time to drink, it can get better....I am proof of that . Although I still can feel anxious, that overwhelming paralysing constant panic has gone. I still have asthma /COPD but I am in more control now. I have my emergency pack, my nebuliser to hand, which I use rarely now, all reassurances which help reduce anxiety.

    The short course of Seroxat helped, but the best help I was given was by a fantastic GP , who has now left, who put me on a high dose, then decreasing slowly over a number of weeks, course of prednisilone . There were side effects but I could breathe, my body and brain no longer felt under threat , so panic reduced.

    Also have you had your thyroid levels checked....mine went haywire at one time....I couldn't bear hot weather, lost weight, bad anxiety.

    Could you ask today for a blood test.

    Are you managing to breathe only through your nose, I know that must be difficult with oxygen, and with relaxed shoulders and upper chest. Easy for me to write but difficult to do in practice I know

    Thinking of you.

  • I have tried to Breathe through my nose But getting no where fast I had lots of Blood tests in hospital Don't know if they checked my thyroid .The District nurse is coming today I'm. Thinking if my sats don't recover I will be Back in hospital and Definitley Be no Holiday why did I Book in first place just trying to get some so called normality I have Been sitting on end of Bed for over a hour and sats still not recovered I am fighting a loosing Battle made Frank angry and nothing I can do about it Take care

  • I hope things get sorted out for you, quickly. Your going through so much, that it's giving you severe stress, which is then causing the panic attacks.

    I started feeling I couldn't breath but, I soon realised the panic attack was causing that feeling. Still, I went through about six weeks of panic attacks that started as soon as I opened my eyes and lasted till late afternoon. It was horrendous.

    You need something to change and fast. I hope the doctor does give you something to help you start feeling less stressed. You might still make your holiday. xx

  • Hi Casper just had another horrible night fighting for breathe I am really struggling again or is it still I know I am stressing Frank out wish I had never Booked holidays Was Being unrealistic wasn't I just thought it would do us Both Good But looks like all I've Done is waste money and angered Frank He is starting to loose pacience with me .The District Nurse is coming again Today to check my sats at the momment they are In the mid 70s When am I going to get a Break from this wish to God I'd never smoked Because my future looks so Bleak thanks for listening xx

  • Hello Time_to_drink

    Panic is one awful thing to deal with I do understand and your GP really needs to start getting onboard with you and helping you instead of hindering fingers crossed the nurse will get things to happen today . Its hard for Frank to really know how your feeling when your struggling for breath and in the middle of having a full blown panic attack its not easy for others to understand but worrying about him being cross with you will only add to your anxiety so try hard to concentrate on calming yourself down and get control of your breathing even just a little bit .

    Which Centre Parc's are you going to? do you have a mobility scooter that you can use to get around with? ,we went to Elveden Forest in March this year and I was quite poorly at that time too but it was mostly on the flat which helped although I tended to avoid doing anything that I knew was going to make me breathless.

    Well my lovely lady try and take care and I really hope that today you can get some sort of relief and some positive help from the GP

    With best wishes

    Cales xxxx

  • We are going to Whitfield Forrest Cumbria haven't got scooter can't drive so Frank will be pushing me have got oxygen sorted and disability lodge Daft question But do they supply Bedding and towels By what I have seen it seems pretty expensive to eat there hopefully will find something so Frank can have break from the kitchen sorry you were poorly when you were there did you cope alright this is a really frightening illness which people don't understand take care xx

  • Yes all bedding and towels are supplied so no need to worry about that..... some places are expensive to eat the Sports Cafe is by far the cheapest and does a good selection of meals we have always had a good meal there so should be able to give Frank a break from the kitchen :-) ......... I really hope that you can go might be just what you need :-)

    Take care my lovely

    Cales xx

  • Thanks Cales will have to check that Whitfield Forrest have sports Bar can I ask are you a oxygen user Best wishes xxx

  • Hi they all have a sports bar my son works at the longleat Centre Parcs so will ask him when he gets up about the one your staying in :-) he's stayed in most of the other Parcs while he was doing his management training .

    I'm not an oxygen user Time_2_drink

    Best wishes xx

  • Thanks for that Cales hope you never need oxygen not a good look lol. I just can't accept it don't think ever will looking forward to what your son has to say xxx

  • Your having a rough old time at the moment, I wonder if they give you something to help your anxiety you will be able to cope with your breathing a bit better. Wishing you well x x x

  • Thank you I know I get into a Blind panic just had episode of panic Breathing I just know if I don't get sorted soon things will spiral even further out of my control and I feel that I am alienating Frank so I feel so alone and don't feel like I can talk to him anymore District nurse coming today xxx

  • I hope they sort you out soon, panic attacks are debilitating, on top of your breathing problem.

    Your husband probably feels helpless that he can't fix it for you.

    Take care x x x

  • You are probally right Shirley at the momment I can't talk to him without fear of a upset I didn't know you could cry in your sleep I woke about 4am with tears on my cheek it is so very hard for both of us and not being able to speak to him about it makes it even worse xxx

  • Hi and sorry to read of your continuing troubles. Lorazepam or a similar benzodiazepine is recommended in NICE guidelines for anxiety and panic attacks as a short term relaxant. Doctors are wary of prescribing benzos so you may have to be persistent and tell them to look at the NICE guidelines as that is what they are supposed to work to. My Mum had the same problem and Lorazepam sorted her right out. The last thing you need is to feel anxious as much as you do. Have a look yourself it's on- line. And if I were there I would sit in your GP surgery until the nebules are prescribed; the squeaky hinge gets the oil. Are you in touch with the respiratory specialist nurses yet? If not, Google their number and get in contact. The whole point of these services is to keep you out of hospital because it costs more admitting you there. Oh, and I am sure it has something to do with looking after the patients too. I am pretty sure. Well....anyway, keep squeaking and I wish you well.

  • I have got the nebules at last. Also took your advice when Doctor rang I mentioned the nice guidelines. After some hesitation have Been given Lorazapam But only 7 1mgs and told only to take half a tablet don't not see how 7 low dose tablets will help also told only take if needed well wouldn't have mentioned it if didn't think they were needed she said they are highly addictive I think in the scheme of things the least of my worries. Worry now is when to take them take care

  • I am glad you have got them and unless you have a history of using similar drugs then you will be surprised how effective they are. They are a longer lasting more drawn out relaxant than say Valium, so the lorazepam comes on slower but lasts longer. Doctors are very careful about prescribing these but once my mum proved she didn't have a propensity to overdose and actually took what was prescribed then they started prescribing whole months at a time! Like you when the (14 year old? Looked it) doctor mentioned the danger of addiction o thought that really is the last of her worries ffs. Have a read bit by bit of the NICE guidelines I think it's document 101 or something. Information helps. Regards and best wishes, Phil.

  • Thanks Phil Don't think the Doctor will give me anymore by the sound of things and it is only a very low dosage 1mg and only wants me to take half a tablet at a time can't see such a low dosage doing any good they are that small will probally loose them whilst trying to cut in j half. So only given 7 tablets like I said how can they be helpful Doctor quite adamant I won't be getting more .Dont know ishe' thinks I'm going to be addicted not on a weeks supply I won't Don't really think it does matter if I was addicted in the scheme of things I just lay down for first time today have Been sitting on the bed all day Frank says I've got to go downstairs tomorrow we will see Best wishes

    G

  • Well nothing will work if you don't give it a chance! Lorazepam is very strong so do what the doctor says and take half. My Mum was absolutely transformed into a dozing serene person and they have helped her no end. And if half is not working although it really should, then tell the nurse or GP and they may increase it as they did with my mum to half twice a day. You just have to show the doctors that you are not going to swallow them all at once and then they will work with you. And if they don't, well again, it is in the NICE guidelines. 1mg daily lorazepam.

    You need to be in touch directly with the Specialist Respiratory Nurse team. Do you have their number yet?

  • No I have asked the district nurse. And at the hospice they say we don't have respiratory nurses that the matron is my point of call however she not Back till the 19 th and then only for a few weeks I will make a point of speaking to her and clinical psychologist if she comes about respiratory care I won't leave it . Why I am worrying about the low dosage is 1mg seems so little and when it is halved it is only 0.5 mg just home I don't loose other half so small. I don't think the Doctor will repeat the script she as adamant. That she would only give me 7pills and I would get no more so I will also Be speaking to the matron about it I need to get as much as possible sorted before I loose the Matron again.

  • Hi, I have messaged you about this, have a read and let me know if you want me to. Phil

  • Thinking of you. Hope you soon get the help you need and manage to get to Centre Parcs. You really are a trier and deserve to get a nice break soon! xx Moy

  • Thanks moy sometimes feel that I will never get a break from this last night I had a proper screaming. Episode just couldn't help myself sounds pathetic doesn't it xxx

  • Not pathetic at all. It must be really frightening to be so poorly in the night - no wonder you have panic attacks. Poor Frank must be at a loss to know what to do - I know my other half panics a bit himself when I am ill - so tension probably runs high. I do hope you soon feel more in control. It would help a bit if the medics all pulled together, wouldn't it? It beggars belief what you have had to go through. Chin up! xx Moy

  • Thank you the nebulas still not put Back on prescription the nurse contacted a Doctors again yesterday about them In he matron who is coming to me for a few weeks not Back till 19th she on leave she has mentioned these tablets to me she is bringing clinical psychologist so looks like I will have to try and cope till then .I have asked about respiratory nurse told do not have them have matron But that is only for so many weeks take care

  • Oh I do feel for you. It's like a vicious circle isn't it? Your not breathing well which causes you to panic, which then makes your breathing worse, resulting in full blown panic and you gasping for breath.

    When I'm struggling to breath my mind goes straight into panic mood. I try to think my way through it but you can't. I was given steroids to help my breathing and I found once I could breath the panic attacks subsided.

    But try not to close yourself off. At one time I didn't leave my flat for 5 months and I got so much worse. It sounds like your getting lots of help though so try not to despair. 😘

  • Thanks at the beginning I didn't leave house for 6 month so have pushed myself today I am giving into it and hope to start afresh. Tomorrow The district nurse just left. She has phoned. Doctors for him to do a telephone consultation. She reckons I need diazepam or lorazepam for my panic attacks I am due to be signed of rapid response today they are phoning later to see what the Doctor says 😷

  • Good for you. It's easy to become depressed and just give up. I know I felt that way. I didn't even want to see the doctor at one point as I was so fed up with it all. When your not well you just want to be left alone, but it's the worst thing to do. I'm glad there going to help you with the panic attacks, diazepam does help calm you down a lot. Good luck 😉

  • Hello Margaret.

    Please believe me when I say your dear grandson wants to see whatever the situation. You are his precious Nan so please don't think otherwise.

    I really hope you are feeling better today. I am thinking of you and Frank.

    Sending much love.

    Cas xx 🌿

  • P.S. There is no need to write me a reply. I don't want you to tire yourself. xx

  • Thanks Caz Doctor just phoned she is giving me lorezapam But only 7 why can't they just prescribe them so if needed I have them she said they are highly addictive. I'm sure you are right about Callum just Breaks my Heart that he sees me like this hope you are doing ok xxx and of course chom your little Buddy x

  • Dear Margaret, I feel so sad for you. Do you not have Oxygen? I have only ever had a Nebuliser when in Hospital, been a lot of times over the last 3 years...I was told & read up on " Salt Pipe", which I have and it helps me so much as well as my Oxygen. It is not prescribed, I bought it in a Herbal Shop on recommendation, it has a 5 year supply, wouldn't be without it, my Consultant and Resp. Nurses know I have it, said ok if it helps. I have also been to the GP for Anxiety which goes hand in hand with COPD, I did not want any Meds for it, she was very good and gave me Phone Numbers if I needed to talk. Please be Strong, You have been Strong all your Life and now your Grandson wants to see his Strong Nana, we are good at covering our illness's for the sake of Granddchildren. Most of mine live Abroad, and I miss them Immensely, they see me on Skype, what I wouldn't give to Hold and Kiss them. Keep ya spirits up Dear Margaret, Don't give up. When you wake in the Mornings, it's because your meant to have a Good Day..Sending Hugs. XXX Carolina XXX

  • Could you tell me which pipe you got please I've looked on Internet seems so many does the salt come with it how do you use it and what do you think the benefits are xxx

  • thesaltpipe.co.uk, I sent for it with amazon, and I also saw them in herbal & Vitamin Shops. It is a Ceramic Pipe with Halite Salt Crystals, I had to read on the link above before I decided. I take it every Morning and Evening for 3/5 Mins, I feel a lot better with my Breathing after using..I have taken it with me when I have been admitted to hospital and use it openly, no one has ever said it doesn't work that I know of. Like all Meds, I treat it the same, I wouldn't be without it..2 Years ago it cost me £26. I think that is why I do not need a Neb at home. Good Luck XX

  • Sorry Margaret, Correcting my reply to you. I have re-read your post Margaret, I see you do have Oxygen, Silly Me xxx

  • I will look up salt pipes worth a shot I have had some counselling But it is a long slow journey today just going to rest in Bedroom took water tablet and still waiting for it to kick in can't face journey up and down stairs even with stair lift because once it starts to work it's non stop so. Will try to get my head in a better place so we are able to go away not fair on Frank if I say I'm not going but do wish I wasn't Best wishes xxx

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