As you probably know from earlier posts I've wrote I am very anxious and depressed .since being on oxygen in December I have had Another hospital stay and have had a infection still ongoing for a few weeks .I have only been out 3 times once to oxygen nurse and shop once to hospital having to wait for wheelchair and ambultory oxygen .Like many others I have insomnia doctor gave me tablets for 5 days got about 3hours max with them also I have Mitrazapan 30 mg I have for the past week been staying upstairs in bedroom panicking about going down in case I need toilet I have been taking my water tablets early hours to lessen the need some days I never go down stairs I did go down last night about 5 I promised myself I would today but still up bedroom .I had assesment for counselling last week and on list it is 2 sessions per week could have been by phone or at the premises I said I would go but now think I will use phone .also I am 65 on Tuesday and my husband and son want to take me for a meal I said I would during the day but now to frightened and I will be on antibiotics till Monday anybody else doing or done same and have they conquered there fear xx

43 Replies

  • There are many things which may stop you doing what you want to do in life, age, illness and financial circumstances to name just a few. Don't let fear be one of them. Look at what you are frightened of. Will I have enough oxygen? Take spares. Will I manage the toilets? Contact the restaurant to explain and ask them. I once did and explained being on oxygen and they reassured me about the facilities and when I got there I found they had replaced all of the candles on the tables with beautiful little lamps just because I was an oxygen user. When you have checked everything then the fear will lessen and you can do much more. :)

  • Thank you liquid oxygen only one didn't get spares I ,not sure why just feel like a prisoner I get good intentions then puff gone 😒

  • If one isn't enough to go out and have a meal then contact your oxygen nurse who can order some more for you.

  • I will ask oxygen nurse I would feel better if I had a back up in case something went wrong with unit. Thanks

  • Fear breeds fear. The only way to handle this is to take the bull by the horns and just do it, or it will become something else that rules your life. Just plan carefully and try not to worry.

    Take care. XXX

  • I know you are right and I have to learn to adjust and live with it I will keep on trying I know it is the only way Thank you pam xxc

  • It is a bit of a trap, isn't it? It's quite understandable because you've had a lot to deal with over the last few weeks and you've been ill as well.

    I think you need a bit of a plan to overcome your fears. Look at them, and ask yourself what it is you're frightened of, and what you can do to deal with each situation. You've had good suggestions to manage things like oxygen when you're out. Look at everything which is getting in the way of you having a better life.

    Small steps. You've been pretty much stuck in your bedroom. I can't see how you'll manage to go out for lunch on your birthday if you don't practice taking the steps between now and then. Have a think about it. Start taking the small steps. See how you get on. Don't give up on them but if you really feel you won't be able to manage talk it through with your husband. Maybe suggest a take away in the evening, and make it special - flowers on the table and so on. Involve him with your plan, and I'm sure he'll support you.

    I needed my husband's help and encouragement to be able to get out and do what I wanted to do. And I always feel better when antibiotics have finished. You will do it because you can't allow fear to take your life away from you.

    I do understand and I do wish you well. Love, Sue x

  • Thanks Sue I feel really isolated and I know I making it worse but haven't come to terms with life on oxygen yet my husband says I look to far into the future and worry about what I can't change he is right but can't help it .Like a lot of others on here insomnia doesn't help and to top it of he just been to chemist for my prescription and doctor has took my Mitrazapan of my repeat it never seems to end and I was loaned nebulisar till Wednesday from matron I asked for some liquid nearly out they haven't give me it Your husband seems to have helped you a lot I am glad that you have told me that you also went through similar thank you so much xx

  • You have had some wonderful replies so l just want to wish you well and hope you can conquer your fears. Xxxx

  • XI want to I need to or what is alternative xx

  • Whatever you decide I hope you enjoy your birthday. It's mine on Tuesday too!

  • Happy Birthday peege hope you have a good day 🎂🍧

  • Happy birthday to you 🎼🎶🎶 happy birthday to youoooo 🎂 - always sunny on the 14th of March !

    Hope you get to go out today x

  • You to once again happy birthday I'm actually dressed today great to be having break from pain fingers crossed my son wants to take me out this afternoon finished antibiotics but still got green gunk so unsure but if I don't will I go back to panic mode who knows x

  • Birthday wishes for Tuesday to you to let's hope it's a good. Day

  • Hi T2d, I've replied to you re Breathe Easy groups on your other post. Re this issue, Id strongly advise you NOT to change your counselling over to phone. Try to see this as an opportunity to go out of the house to a destination and a person who will completely understand your situation as this is their job (and that job attracts really nice empathic people).

    You must phone your oxygen nurse and get more O2 so you can go out without anxiety that you will run out. I think you can get cylinders so you can take out more than one. Another member was posting on here recently about just this. You must get this sorted as you've enough anxiety to deal with already - they must understand that this worry about oxygen is increasing your anxiety.

  • Thanks I will Definitley ask for back up oxygen I will Do my best to go to counselling when I get appointments They offered me counselling or self help congestive. Behaviour which you do by post to help with insomnia and anxiety I had to choose thought it would be a mix of both thanks

  • Meant cognitive must have been thinking about lungs. Lol

  • The trouble with doing things by post is that you need to be disciplined to make yourself do it, which is difficult when you are unwell. Every time you succeed in going out you will have such a sense of achievement. I have just finished a brilliant Stress course run by Monmouthshire mental health unit, where they encourage you to learn breathing techniques to calm you, much like the breathing exercises used for copd, to make a plan, and to feel the fear but do it anyway (not always easy I know). I have now just started the follow-up course, Mindfulness. As for the diuretics, I know from experience that they can be a nuisance, but the body does settle with them once they are working. It won't actually hurt to delay your dose until after your outing. I have done that without ill effects. I am about to be assessed for ambulatory oxygen and all the literature says that you can have spares if necessary. I do hope you manage to enjoy the planned treat, going out on a pleasant occasion should help you feel better. Have a lovely day and a happy birthday xx

  • Must have been really hard but satisfying to do the course I hope it helping you the only breathing excercises I know is what members have mentioned I reckon I need a person to copy them .I will take heed of what you said about water tablets if I don't take them during night like I usually do i am going to ask oxygen nurse about a spare .I think you probably right about doing course by post it's just getting confidence to go and speak to someone outside the home I just don't feel or look like me anymore .Good luck on your follow up course I will be looking out for your posts on how you getting on with it thanks for birthday wishes 🍀

  • Lovely reply Carnival. That's always been my motto : feel the fear and do it anyway! I enjoy being brave and taught myself from an early age when life was full of fear. I learnt long ago that ain't no one going to rescue me. (My other one is JFDI, can't write it fully on here 😜).

    T2D, there are video clips on YouTube that are brilliant. There are several so choose the one that suits you. Deep diaphragm breathing is marvellous, almost like taking a tranquilliser. You can train yourself to let it come naturally to get yourself out of stressful situations. Treat yourself for your birthday

  • Time_2_drink you really don`t have to rely on just one oxygen container. It`s usually normal to have two. And if you`re anxious that the oxygen will evaporate leaving you without, then ask to change to cylinders. I have been on both types. If I were you I`d write down all the things that worry you and alongside what you can do about it. Take control of everything that`s frightening. What about a stairlift - that gives so much freedom. Like you I`m on continuous ambulatory oxygen 4lpm and keep a cylinder in a shopping trolley beside my bed so that I always have oxygen handy. I imagine that all that`s happened has really knocked you for six, but you are in charge of you. I don`t mean that you should lock horns with doctors and nurses but politely and firmly say what you want if you disagree with them. Take care, Sheila xx

  • Hi Sheila I have to use oxygen in bed it seems I do need to take control but it is so hard my husband wanted to go in the bath but because I down stairs I didn't want him to last night I could not get my breathe and I was scared it would happen while he not here I have told him to go in it now and I will stay downstairs till he had a soak how do you manage with just 2 cylinders or do you have concentrator looking into prices of stair lifts xx

  • Hi Time_2_drink, I also have to use oxygen for 16 hours at just 1/2 litre - I usually sleep with it from 10 till 8 to get most of it out of the way- that`s on the concentrator. Then I`m on ambulatory at 4lpm constant if I do anything like walking to the bathroom or getting dressed. My prescription ( decided by the oxygen nurse ) is for 7 cylinders. I just ring the oxygen company the day before I want another delivery.

    I did have liquid oxygen at one time 2 flasks, but I found it hard to fill them and they`d evaporate overnight. With cylinders they may offer you a trolley. Again I found that quite awkward to use and a shopping trolley was ideal. If you do get cylinders (and a stair lift ) remember to always have a cylinder ready to use upstairs.

    When I first joined this great forum a few years ago. like you I was full of anxiety especially about going out with oxygen. The help I received from members was so helpful - Stone in particular.

    Honestly love you`ll be an old hand at it all in no time, Take care, Sheila xx

  • Hi Sheila I having a bit of a do with my sats last few days at first they were staying high when I took oxygen off so I kept it off whilst sitting. Now it has started dropping quickly when I take it off so I have it on almost constant..I know what you mean by the liquid. Evaporating and when hubby picked me up from hospital he weighed it with bag on thought it was halff full forgot about it. Evaporating and I had been in hospital a few days so when got in car drove of and no oxygen .I don't think I would be able to fill the dewar either .Honestly though don't you think that they could come up with something better than the canisters they are heavy and not practical agen you only slight or weak anway It is a great forum isn't it and nice to have people to chat to it's funny I have never been interested in Facebook whatever but here I am virtual posting keep well

  • It is often possible to get reconditioned stair lifts, especially if you have straight stairs. Ask your local mobility shop if they can help or advise. Someone who is moving to a bungalow would be delighted to get rid of one this way. I had one in our house but because I had stairs that went back on themselves I couldn't get rid of it easily. I would have been delighted to give it to a good home. Otherwise ask your social services if you can get a grant or loan to have one put in. Wish you luck.

  • Thank you funnily enough just been talking about that this morning the decision will have to be made can't keep putting it of

  • Hi you have .received some excellent replies. which I will take note of for myself. .I am sorry you .are finding .things so difficult . I was prescribed 16 hours home oxygen and ambulatory oxygen last August. .Looking back I found it a real shock and felt completely helpless for a good while. Recently I have had pneumonia which is a set back and recovery with that is slow. The only way I can tackle it is to take very small steps at first. Maybe have a friend for .coffee, plan to put a bit of make up on everyday etc. My first trip out was just to a coffee shop and .back .home. Second was to my art class not to paint but to have a drink and look and..others work. Don't think you have to start with a very ambitious outing first. I wish you well and hope you will see an improvement in due course.. .Be kind to yourself x

  • Thanks for message. You are doing marvellous wish I was brave like you I. Also had pneumonia in November December and infections since .I have no friends unfortunately we used to go away on weekends as a group,from all over north east with our caravan and holiday abroad with a couple of them not seen them since .My best friend of 50 years since childhood moved to turkey a few year ago we used to visit them that is why I thought of breathe easy group if I dare and feel well enough my husband talked me into going to tesco today got into shop in wheelchair did some shopping but felt so vulnerable he had to leave shopping with staff and take me back to car and then go back and finish shopping wimp or what. X

  • Hi there Time_2_drink and I've been reading g your post and the replies. When I come to really think about my "transition" from not needing to needing oxygen,now virtually 24/7- it came as a real life changer. I like you was so anxious, I would put obstacles in my way and then the dread and panic I felt,was definitely coming from my fear of trying to do something when I'd already set myself up for a failure. I was scared. So if you feel any of these then that's normal. We are all different but sometimes we can share our emotions. Putting it in writing or reading similar stories,has helped me take a little bit of control- not all the time,but even just once,is a step in the right direction. Try not to expect too much but similarly dont stop trying!

    I'm case I forget, a very Happy Birthday for Tuesday. x

  • This site is one thing that keeps me sane ish I do write things down I have pages and pages of thoughts and feelings I keep saying I want to do things but honestly the tiredness from lack of sleep the horrible horrible sweats and then freezing episodes I have day and night especially night stop me and the sheer panic when you can't get your breathe defeat me and now doctor took Mitrazapan of my repeat even though it was not enough scares hell out of me thanks for birthday wishes x

  • Funnily enough(not funny ha-ha),I've been having dreadful sweating episodes and not even when I'm moving which is never more than a snails pace nor exercising enough! The panicky breathing is the pits and can really take it out of you,so I can totally see what you are going through. All that said,this is a bad patch for me and I'm praying I will be through it very soon. Try and be positive about even the smallest of things.... you will find it becomes easier in time. You will get through this.

  • I know what you mean about sweating and not moving I don't know whether you get the cold chills as well I go from one to the other when I in bed I am having to turn fan on and off constantly change my pjamas put cardigan on take cardigan off its exhausting I hope you are through it soon last night I couldn't get my breathe I used the nebulisar that hospital got me on loan but it has to go back Wednesday I have asked doctor if I buy one will he supply liquid but won't and that scares me take care

  • I'm having full blood tests done at Doctors tomorrow to rule out menopause, anaemia or iron deficiency all of which can cause some of complaints and I totally agree,its tiresome going from boiling hot to freezing cold. Believe it can increase breathlessness too. You have to be persistant- some towns/areas seem to have better facilities etc. Postcode lottery? Its hard enough to get a Doctors appt, so keep pushing for help/answers. Hope you get a few more hours sleep tonight.x

  • Hope that your doctors appointment went ok and wasn't to early x

  • Happy Birthday for tomorrow before I forget. Turned out I had blood tests done- after several attempts and then we talked about me on these new antidepressants. I should've started taking the old and new ones together and this is most prob the reason for all sweats,extra anxiety, panics etc. Went home,took pills and slept for 2 hrs. Feel so much better now,so optimistic for tomorrow. How've you been today? Are u going out for your family meal tomorrow?

  • First glad you gettingsomething sorted pity doc didn't explainabout tablets .I bet you enjoyed your sleep hope you don't get any more sweats I'm praying mine stop soon . I. Was bad again last night and most of the day today with the pains under chest .No sleep stayed upstairs till 7 tonightIt's no life .Thanks for birthday wishes son came round tonightwith cards and presents have to see about tomorrow hope you have decent sleep xx🌛⭐️

  • Thanks T2D, and I hope you have some sleep at least. I'm not sure everything will change overnight for me but I've got to try and be positive. Sweats etc down to menopause but we'll see. Hope you got nice presents from your son and do try to do something tomorrow for your birthday- you may enjoy it !! I'm sure it'd make yr family really happy too !

    Sleep well- try a relaxation tape.x

  • Good to know what causing your sweatshope find a solution to mine soon yes keep trying to be positive I am going to try harder sleep well and send me some if you have spare lol

  • Good luck at doctors i can rule out menapause your right about post codevlottery hope you get sorted and you have a restful night x

  • I am on oxygen 24/7. I have a static oxygen concentrator for indoors and in bed, a liquid cylinder which I fill up from the liquid oxygen reservoir and 2 small concentrated oxygen cylinders so when I go out of the house I take a spare cylinder in a shopping trolley. I consider myself very fortunate to have oxygen to help me to breathe

    as without it I wouldn't be able to go out at all. We can just phone the supplier and it is delivered the next day. I too do not go out very much but think you will find if you do go out you will feel much better - I do. Please do try. In most larger towns there are Shopmobility shops which lend you mobility scooters at no cost - they are fun!

    A stairlift is also a very good idea.

  • Wouldn't like to meet me on a scooter I never mastere a trike .do your cylinders fill up from concentrator I will keep trying thinking about stair lift got to look into the cost and logistics of our stairs not straight up and two windows but possibly on other side can't come to terms with needing one

  • The scooters can go very very slowly if you prefer. Easy to change speed.

    I have to fill up my liquid oxygen cylinder from a tank (dewar) in the garage which is a bit of a nuisance, but it is good exercise! When it is nearly empty (two lights on) I phone the supplier and a new tank is delivered in two days time. I also have two tanks of compressed oxygen which are my back up when I go out, and when I go to fill up my liquid oxygen tank. I did have portable tanks which filled from the concentrator while it was on overnight but as I am on 4L a minute they didn't seem to give so much oxygen as other portable oxygen tanks. It may be different with other lung conditions (I have sarcoidosis).

    If you are able to move around, the British Lung Foundation site may help

    I don't have COPD but the following page may be of interest to you I sent for the DVD (free) and the exercise handbook and found them very helpful.

    I applied for a disabled 'badge' for the car which has made such a difference when I do go out. I think you have to apply to your local council.

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