When Does the fear go just lately i seem to be going Back over I seem to be in a permanent grip of fear and i feel its all engulfing it overwhelms me .I only leave the house to go to Breathe easy and hospice and have missed hospice this week Breathing to Bad to leave home and wind from monday had kept me wake even with a sleepease tablet i usually get a few hours sleep with them I have never missed hospice except for being in hospital or on antibiotics some days i dont get up till teatime Days are so long cant do anything to Breathless so sit on chair or lay in bed I am on olazapine 5mg morning and evening setraline 100mg morning and recently lorazapam 1mg half once aday if needed all for my nerves I was told next week would be my last at hospice But when frank rang on tuesday to say i wasnt going they told him i have got a extension just needed to get how i feel off my chest .

51 Replies

This is the place to come to get things off your chest Margaret. It’s what you need to do. I’m glad you have an extension to continue to go to the hospice.

I hope you can get out for a little while very soon and send lots of good wishes to you. Xxxxx

Thanks sassy i just feel as though there is a black cloud over my head love Margaret xxxx

Sending you lots of love Margaret. It's good to let it all out and not feel you have to keep pretending that things are OK. Do the anti-anxiety meds help at all ?

I look at it like this if i am feeling so low with the pills how would lfeel without i try not to take the lorazapam every day but come early evening feel i need to the matron says that some people take half a tablet up to 4 times aday but ive only been prescribed 14 amonth to half take care

Sending lots of love Margaret, hope you can get out for a little while soon. Glad you have the extension from the hospice. You take care. Love Bernadette 😳 xxx

Thanks. Bernadette it just seems so hopeless at the momment love Margaret xxx

Take Care Margaret thinking of you

Dorothy xx

Thank you Dorothy appreciated x

You don't sound good at the moment, I hope you feel a bit better soon. Thinking of you x x x

Thank you shirley. I hate feeling like this xx

((((Hugs)))) Margaret,

Thank you appreciate hugs and vitual hugs 😷

Sorry you are not feeling so good at the moment. Hope you pick up again soon. xx Moy

Thank you moy hate living like this its horrid xxx

Hello Margaret, I hope you don't mind me calling you Margaret as we have only just met. I have read your post and it has really worried me.

You say that you are consumed by fear, I can really relate to that, there are days when it is hard to function because of it. You also say there are days when you don't get up till tea time, and that is what is worrying me. I am at end stage COPD and a couple of other problems, so I really do know what you are going through.

What I wanted to say to you is, it is so so importent to keep moving, I don't mean running round the block or riding a bike, I mean walking round your home, even if it is just a few steps, start small and try and do a little more each day, I know it is difficult and I have to force myself to do some exercises but I do them every day, even when I feel like death warmed up. If you don't move about as much as you can the rest of your body starts to give up and that is the last thing we need. When you get breathless or anxious try doing some pursed lip breathing until things settle down, it does work, honest.

This is beginning to sound like a sermon, I am sorry, but I am really concerned about you. Please try to move about a bit each day and force yourself to get up before midday. Please take care of yourself and breath easy xx

Great advice.

Thank you christina ive found out only by a note the GP had give me for hospital admmition written on a prescription of all things that i am end stage too .I do pursed lip breathing but i dont think ive quite mastered the art sometimes the breathlessness is so bad i think im going to pass out i know or i think one of the reasons i stay sat so much is because i have not accepted the oxygen and being tethered to a trailing lead makes me feel im on a leash like a dog cant explain how awful i feel thanks for the advice xxx

Hello again Margaret. When you do your pursed lip breathing, sit comfortably, relax your shoulders and arms and put your hands palms upwards in your lap, keep shoulders relaxed and breath in slowly through your nose to the count to of 3 them blow out slowly as if you are blowing out a candle to the count to of 6, do this until you feel less breathless or less anxious. I am on oxygen but I only use it when I get breathless, I try to walk to the bathroom without it, then use it if I am breathless when I get back to my chair. I don't use it when I am sitting down, I find I can manage without it then. I just feel if I use it all the time now I have got nowhere else to go when things get worse.

I really do know how hopeless you are feeling , it is a feeling I fight every day, but there is no way I am going to give into this disease of ours, I will carry on fighting it for as long as I can. I think that a lot of our problems are in our heads, I know sometimes I sit and think 'what's the point' then I think of my kids, grandchildren and my new great-grandson and that helps a bit. I also knit a lot which keeps my mind off me and on the knitting.

I hope that you are able to keep fighting this dreadful disease of ours and live your life the very best way you can. Remember my friend, keep moving. Take care xx

I know how you feel about oxygen useage but if i dont use mine my sats drop quickly they even do it at times when i have it on so i know how it feels to have no where else to go Best wishes Margaret xx

My reply to you went further down the page meant to say only been on oxygen since 23 december already had it upped xx

I have been an oxygen user for many years and am so grateful for it. Without oxygen I am a gasping wreck who can go nowhere and do nothing. With it I can lead a fairly normal life. Do persevere with it Margaret and you will soon get used to it being there. See it as a friend and supporter, because that is what it is. Sending (((HUGS))).

Thanks Mrs mummy

I wish i could be like you i find it very difficult to go anywhere and do anything with the oxygen i am still a gasping wreck one day maybe hope things can change x

It takes time. Don't give up. :)

My heart goes out to you Margaret, life like this is a real pain in the button, but I suppose there is nothing we can do about it except make the best we can of it. I have no idea what my sats are, and I don't really want to know because I know if I knew they were going down I would start to worry about it and I don't need any more stress 😊 so I just use my instinct.

Anyway Margaret, keep doing the pursed lip breathing. Take care, love and hugs xx

Thanks christina my sats go so low i have to keep a eye on them I took half a lorazapam and had a Bath in and out have real panic attacks this is the woman who could lounge in the Bath for a hour with a glass of wine and a magazine those were the days xx

I am no doctor but wonder if it has anything to do with the medications you take as some of those types of medications can have side effects that change one's mood. I think they are meant to improve mood but sometimes can have the opposite effect.

I Have Been like this more or less from day one with Brief very Brief respite i also know i could not function without them maybe they need a tweak even so i dont see a answer .

That sure is too bad

Hi time to drink is your name Margaret . With autumn here and darker days I think a lot of us with this feel low or lower than usual. Physio said to me try setting one goal to do every other day I’d

a. ride in the car tesco for coffee nothing too heavy just to get out of the house this COPD thing is very demanding on your personal resources saps them real quick if you allow it too for too long— so chins up and onward ok thinking of you. Sam x

Thank you i cant do supermarkets to concious of the oxygen .I had to psyche myself up to have a bath today and had to take half a lorazapam. My sats dropped to 67 so i stayed upstairs to recover just come downstairs x

So sorry Margaret those stats are low ..keep trying we all who have Copd understand thanks for being so open Sam x

Thanks i try to get things of my chest on this site there is only my husband and my son who has his own life x

Yes I know it's hard for anyone to understand ' I can't Breathe '

I know and we can't put too much 'stuff' on them as my only son he does what he can yes they have manual jobs and a life samx

I am so sorry to read your message, Margaret. I hope you have family or friends to support you. Kindest thoughts, Albert.

Thanks albert i have my husband and my son who gets upser when he visit my Best friend since childhood lives in turkey now. And other friends who i used to holiday and caravan must weekends with dont live near so its mainly frank and myseljf Take care

I don’t know you Margaret but I feel for you. Having LAM as a chronic illness I have been through my fair share.

I wouldn’t worry about the pills.. I take what the doctor says and I need for comfort. Because I just want to live as comfortably as I can. Hope you are having a good break there. Just think about number one. Take care xx

Thank you after years of taking very little medication. I cant believe how many pills and posions I need to get through the day and night take care xxx

Thank you 😊 Yes I imagine..one day at a time I usually say it keeps anxiety at bay 🌸🌷🌺

I am proud of you Margaret, being able to have a bath is fantastic, wish I could, I live on my own and just can't manage it. I know you are feeling really low at the moment, and I feel for you, have you got anyone you can talk to about how you are feeling? It does help to really get all your fears and feelings out in the open. My thoughts are with you and I hope this black cloud passes very soon xx

I Could not do what you and lots of others do live on my own i think i would end up on a psyche ward it is one of my greatest fears I admire you and others who cope on there own wish i didnt have to be on oxi 24/7. Just crippling me being tethered take care xxx

I had to take pill grit teeth be helped in and out about 2 minutes in the bath 2days recovery lol. Cant believe how much it takes out of me. Really there is no one. I do talk to a councillor but to be honest not really helping me. Because i know things are always going to be this way Dont think I will be having another Bath any time soon so upsetting xx

If it takes so much out of you Margaret it is not worth it making yourself worse. I know the o2 is a really nuisance, but we need it so somehow we have to get used to it being part of our lives and work out the best way to deal with it. , which takes some doing, but we have no choice my friend, it's like all the other medications we have to take but without it we would be so much worse off. Have you got a cylinder you can carry with you, or someone can carry for you? I have to have someone to carry mine, which is why I don't get out much. xx

I cant carry the cylinders to heavy i have liquid which is lighter but i wouldnt be able to have it without my husband i use a wheelchair when out and concentrators at home. You would think they could come up with lighter cylinders in this day and age and they are so ugly arent they x

Yes they are heavy the lightest one I’ve had is 10lbs that is still too heavy for me I put it in a 3 wheel walker so now I look 170 in stead of 70 hate it , is a strong word but I do but use it or I’ll be completely house bound Sam

I remember reading a post. A reply to me i think about a ladys Daughter in switzerland they have light weight cylinders and if you have liquid oxygen fill up stations. How good is that we are so far behind anything like that happenng in our lifetime . Hate is how i feel also no Breathe easy today because of infection frank rang them this morning. There are 6 people of 3are in hospital .

Hi Time_to_drink,

I too feel as you do and rarely go out. I have been prescribed up to four 1mg tablets of lorazepam a day, but I try to take only one or two. I am also on 24/hr long term oxygen therapy and have been diagnosed with COPD for 8 years.

I agree that exercise and moving about is really important and does help Evan though it's hard. I try to exercise most days but often have to sit down between exercises. Have you tried Pulmonary Rehab, it really helped me when I came out of hospital after being in a coma for three days and I cannot recommend it enough- it literally got me on my feet again.

I know it's extremely hard not to panic, worry, or get stressed when you can't breathe. The trick is to try to take your mind off it somehow- it's a hard thing to do. I am lucky in that I have a psychologist cognitive behavioural therapist attached to the COPD nurses group, who is trying to teach me mindfulness.

I think music helps or reading a good book, when you can't move about too much, but everyone has their own way of coping and you must do what is good for you.

Our illness is always up and down , but we still have to carry on so try to find things that you enjoy and are able to achieve. We can still have fun.

If your breathing has got a lot worse maybe you have an infection and should see the doctor. I know sometimes there just doesn't seem to be a reason- the weather, excess dust, etc but I believe stress is a major factor in my illness and I am working hard on trying to combat this.

There are many caring people on this site and a lot of good advice from people who really understand. Help is there and your not alone. I also find Chamomile tea a great relaxant.

I am sorry your not feeling so good and hope that you feel better soon. I hope this doesn't come a cross as preaching and that it may be helpful to you in some small way. Living with COPD isn't easy, but try not to let it define your life. Keep moving, keep smiling, and breathe easy.

Love Kelda

Thank you kelda. I have done pulmanory rehab in june. July. At the momment I am on antibiotics not quite sure how it came about the Matron came 2 weeks ago wednesday and took a sputum. Sample when we hadnt heard anything by last Thursday. My husband went over to the surgery to ask if they had the results was told it was clear..On saturday he went to the. Chemist to pick up,part of my prescription when i opened it there was ciproflaxin. Antibiotic i can only surmise that when i went to see consultant on the friday i left a sample which must have shown a infection. Dont you think that the surgery should have phoned me .I have only Been given 14 lorazapam which i have to half and take when needed. Which doesnt help when you have several panic attacks a day. .I had to take half before i left to go to the hospice this morning and i had several panic attacks whilst there i did have some counselling there Take care .

Dear time_to_drink,

I agree the surgery should let you know any results, especially with an infection!

I think you should talk to your GP and tell him that the lorazepam isn't sufficient. I too have to take it often when I go to appointments or counceling. Sometimes just stepping out the front door is hard. I lost my husband just over a year ago and I really have to force myself to go out these days and often get anxious and suffer panic attacks when I can't breathe.

I think the lorazepam helps but it may not be the right drug for you . There are other anxiolytics that you can take. Explain to your doctor how you feel ( if necessary write it all down beforehand as I know how rushed these consultations are and I always forget exactly what I wanted to say) . Ask them to either increase your dose or prescribe you an alternative.

I' m also on long term oxygen and I too hate carrying those cylinders. Apparently they do have really small ones now that you can ware around your waist, but only go up to 2 littrs/ min - no good for me as I often need 4 to walk. Still I live in hope that they will get better.

I'm sorry your not getting the treatment you need and hope that things will improve for you soon. Good luck and warm wishes.

Love Kelda.

Thank you kelda its a horrid feeling fearing to leave the house and when we do go its a major struggle. I think the lorazapam does work to a certain extent but the doseage to low and Doctor being iffy about upping it on the Matrons next visit i am going to ask her to request it she did say on wednesday i could up the doseage. And she will get me more but until she does and its 2weeks till she comes back wont take extra incase she cant love Margaret x

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