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British Lung Foundation
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So fed up with myself

Hi it's me AGAIN I don't really no why I am writing this post I know lots of you in same position or worse with no partner or spouse but I am so down and don't know how to start the climb back up I just can't reconcile myself to life on oxygen on top of the near constant pain I'm in and frequent hospitalisation pneumonia etc I had a appointment with a psychiatrist yesterday and today a dietician is coming because I have lost loads of weight and can't eat this morning I got a letter to go for PR assesment next week is there a criteria you must meet for this I frequently have low sats and high heart rate has I said at the beggining not sure why I posting this but when I try to talk to my husband he just says it will be ok but I know he is struggling to

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How was the appointment with the psychiatrist ? Was it helpful ?

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It was not as bad as I expected but I'm afraid it is not going to resolve anything she wants me to go again next week and have my husband sit in for the last 5 minutes of the session I feel like I have ruined his life as well as my own

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If it wasn't too bad then at least you won't dread going back and she may be able to help you to sort out your thoughts and give you some coping strategies.

Baby steps are what's important now and maybe trying to achieve at least one positive thing every day. Things like reading a chapter of the self help book, getting dressed or trying a little exercise. I'm not giving you a lecture here, just sharing the techniques I use when I have periods of severe sob. I also try to do something that I'll enjoy - maybe watch a favourite program on TV, read a book, look at all the photos on my phone and remember the good times, or even eat a bar of chocolate. And because I feel sorry for my husband having to cope with my illness, I try to be cheerful with him when I can and see that he gets some time for himself too. But most important is mobilising.

You mentioned one day how your heart rate was 140 when you went to the bathroom and that you were surprised at that because you'd been lying down beforehand. The thing is that the more you lie down the weaker your muscles will get and the harder your heart wi have to work when you get up. So every hour try and get on your feet. Just walk across the room and back, then rest and do it again. Even this tiny amount of being on your feet will help and you might find it gets easier and that going into the bathroom or kitchen might become less of an ordeal.

It's very hard to come back from the awful changes that illness has caused in your life. All you can do is get through each day at a time and see if there's any thing you can do to make that day even a tiny bit easier.

I really think you're a lot stronger mentally then you realise. Keep trying to make small changes and the sense of achievement will be worth it. Thinking of you and wishing you strength.

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marvellous advice BJ.

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Thank you for your reply Billiejean i admire your positivity as opposed to my Nellie negative the suggestions you make all make sense but I couldn't bare to look at old photographs that just breaks my heart I will try to put some of the other ideas in place thanks. Again Billiejean wishing you all the best Margaret

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I understand what you mean about the photos Margaret and I'm sorry, I didn't mean to be tactless. I love scrolling through the 2000 odd pics on my phone but that's as much because I'm really into photography, as anything else. And during bad spells, even in hospital, I challenge myself to take an 'interesting' photo every day :) Some of them are pretty weird but the process keeps my mind occupied and distracts me,so not a complete waste of time :)

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No offence taken Billiejean Jean and I am pleased that you have a hobby that can distract you that is after all what it's all about challenging yourself I know that's what I need to do there is a programme on tv tonight about anxiety I may record it for a later date take care Margaret

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I am relatively new here, Billiejean. I just read your reply to Time 2... And I must say that it was wonderful to read. We've had a miserable cold winter in many parts of the states, including where I live., making it impossible to get outside for exercise. Your suggestion regarding standing up every hour makes good sense. I have been sitting more than is good, so I will now take your suggestion to get up every hour and walk a bit. Thanks!

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Hi JM and welcome to HU. Thank you for your kind words on my comments. I have just read the reply now and it's given me a really freaky sense of déjà vu or something like that.

Thing is, I now find myself in the same position ( more or less) that Margaret was in then. I've been in hospital for 6 weeks having had 2 2-week stays in November and December. I got a really bad double pneumonia which on the worst day ended up in respiratory failure and has reduced me to being completely bedridden and unable to do anything for myself. Even weirder is that the night after I was admitted I walked into the bathroom and my heart rate was 140.

Now I'm having to learn to use all my muscles again, my legs especially just completely forgot what their job is. I'm having physio and doing exercises but the extent of my mobilising is with a walking frame, on 100% oxygen.

So I'm going to have to take my own advice and practice what I preached to Margaret. It's so easy to give advice isn't it, when you're relatively well yourself ?. And back then I was my normal self - bad lungs certainly but always mobile and active except during exacerbations.

It's really weird that you should have brought my attention to that post this morning and I think it's a good thing, so thank you. I will now resolve to practice my sit-to-stand exercises once an hour instead of twice a day.

I hope your condition is stable at the moment but I think the winter weather hits all of us badly. Do stick around here and if you have any queries about your own condition, write a post.

Nice to meet you this snowy Sunday morning :)

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Hi Billiejean, I'm still in diagnosis stage. So far all we know is there are two very small spots of emphysema in upper lungs, and very minimal volume loss in base of both lungs. I have had 2 spirometry tests, EKG, 3-D ct-scan, aortic ultra-sound, echocardiogram, and the last, this past Monday was a high-resolution ct-scan. Hopefully, that one will tell us why my oxygen drops when I walk, which is the only symptom that I have had, but which is requiring me to be on supplemental oxygen. A simple sinusitis/bronchitis sent me to the doctor, where it was noticed that my oxygen sat. read lower than usual during vitals check.The nurse told me to check it periodically at home. I did, and it was dropping into the 80's consistently after walking through my home. I do not have a lot of sob, so do not know how long this had been happening. My vitamin D level was critically low and probably had been for several years. My sweet daughter was very ill during those years and I was inside with her. I would do it all over again if I could have her back and in good health. I was not getting sun during those years. I actually shrank an inch and a half, so I am wondering if that caused the volume loss, and if that may be the issue. My spirometries went well, blew twenty or more points over the predicted score on that part. My diffusion scores were low. I return to my pulmo March 12, hoping to learn some answers. I don't know much about any of this, and sure appreciate learning from you and others who do. I am glad if reminding you of your post is helping you. It has already helped me. I am making it a point to stand up every 45 minutes to an hour, and walk back the hall to my bedroom. Thanks again for sharing your knowledge. I so hope that you recover soon from these recent illnesses and hospitalizations. Nice to meet you also.

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That is strange that your oxygen levels are dripping when everything else seems to be okay. Maybe the vitamin D shortage was a factor, it's hard to know. I presume you're getting a Vit D supplement now. I hope you get some answers from your consultant visit.

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Yes, I took the mega dose D3 for twelve weeks and got it back to the low normal; now continue to take 5000 mg. daily. May be wrong, but I believe the D depletion is at the bottom of my shrinking and the oxygen drops. I have about accepted that I will need ambulatory oxygen from now to the end. I'm content with that, would rather not, but so glad that it is available. I've three grands. The oldest, the only g-son graduates and leaves for university this year. I hope to 'hang out' long enough to get all three on their way. 🎓😊. So I'm quite happy to have the oxygen. I began taking 400mg. Ubiquinol (old folks coq10) the last of October, thinking that it might help the oxygen drops. It hasn't helped with that-yet, but I don't have to have reading glasses anymore. I was up to +2.75. I can read the phone book without them, now. First time in 20 years. 😊😊😊 A totally unexpected result.

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Sone time last spring I bought a month's supply of Ubiquinol and I it's been in the back of the cupboard since. And as it cost €30, it's not like something you should discard for no reason. My eyesight could do with a boost so maybe I'l take it when I get home. If I ever get home :)

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Medication is always subjective to the one taking it; however, since my vision improvement I have read that it may improve vision. I was unaware of that potential benefit prior to taking it. Folks over 50 need the Ubiquinol, those under 50 yrs. can get along with just plain Coq10., which is much less expensive.

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I am most definitely over 50, unfortunately :)

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Would it be helpful to break it down? You list three problems, oxygen use, pain and anxiety. Oxygen you can stop worrying about. Many people feel that it is a big worry but soon get used to using it, honestly. I have been using it for a long, long time and it now feels really weird if for any reason I do not have the cannula on. The pain needs addressing and I think you have to press your doctor on this. He can refer you on if he has no further options. I think sorting these two out will help enormously with the anxiety. Meanwhile, there are communities on here that deal with pain healthunlocked.com/painconcern and anxiety healthunlocked.com/anxietys... that may offer additional help.

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Thank you Mrs mummy I am going to look at the web sites when the dietician has been I wonder how long it takes to accept the oxygen .I have asked the doctor about pain management he wants to get the infections under control first i have got a referal for pulmonary rehab but wondering if I will be accepted with my sats and heart rate once again thank you

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Greetings mrsmummy, I'm curious? How long you have been using oxygen, and if you have suggestions for managing the tubing that follows behind us? I tend to move about quickly, forgetting that I am attached to the tubing. Several times, it has become hung on something, not such a great experience to feel as if one's ears are going to snap off. My tubing has the connectors that swivel. Still new to o2....All suggestions appreciated. Thanks, Jan

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Hello. I have used it for 12 years now. The tubing - there are several methods. One is to fasten it under your belt and slide it around to the back so it trails behind you rather than in front of you. Another is to walk with it over your shoulder. You can also ask your respiratory nurse about piping. If she puts in an order your oxygen company can come and pipe the oxygen and fasten the tubing to the skirting boards. This involves having an outlet in each room so that you disconnect from one room and connect to the next. Check it out here. airproducts.com/microsite/u...

You can also ask for little foam pieces to cover the tubing that goes over the ears.

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Thank you....I will try the over the shoulder method. I'm discovering that open-toed shoes are not the safest, since The tubing has ended up under the toes and I've almost tumbled a couple of times. Thank you for the link. If the afore mentioned commonsense methods don't work out, I will look into the skirt board hook ups. Remembering to slow down is a problem; it's a family thing. We never "rise up," we pop up. Old habits are hard to break. Thank you.

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Hello again lots of good advise there for you ,where are you getting the pain Margaret and have you been told why your in so much pain ?

I was heard a nurse telling a patient that there was no need for anyone too be in pain these days but sadly people are still left in pain

Take Care

Dorothy

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The pain is mainly under and around my left breast some times it. Travels to the middle it is a total nightmare and having the boiling hot and freezing cold episodes at same time makes it worse .I am hoping that accupuncture may help the sweats the hospice is trying to get it for me it doesn't work for everyone but is Definitley worth a try take care Dorothy

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Lisen to just take every think as it comes you can only deal with one thing at at time so do not worry

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Thank you David very kind have you sorted out your oxygen problem yet

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No not yet but my sons wife sorting it out

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Pleased to hear that

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Like i tell everyone tomorrow is a very nice day as going out the garden and just sit there were it is quite .and watch my fish in the pond and my be feed them if i take there food out with me if not son will feed them before dark as will not go out for a ride or any were as no appontments till next week i think .so this is my treet to :) :) :) :)

Now got grand daruter here playing on her laptop as i call them a little pink one

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Sounds nice and relaxing in your garden lovely to have your granddaughter there with you

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Yes it was now she gone home so now quite no one saying every 5 mins i am hungry i want something to drink and at4 years old she knows were everthing is so you have to tell her if you want something go get it like her sisters do

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They keep you going don't they and think they know it all already

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Ha ha I love that answer, my husband says to me (I'm the one suffering with COPD and IPF) I just fancy this or that and I to tell my hubby if you want something go get it. Hee hee

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To true would be nice to be able to though and still say get it yourself

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PR (pulmonary rehab) is a positive step the program is really relaxed, informative mine was twice a week they try really hard to help you manage COPD and talk with ones also in similar situation to you it's a little outing if you can manage to go it would help, glad you posted again so many were concerned for you 🌻

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I believe if I could get over the initial trepidation about going it may be of benefit hopefully it's just everything seems so scary now I feel like a little child constantly seeking reassurance and worrying about the what ifs like how will I feel if I'm not accepted how will I feel if I am accepted

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Hi Margaret, I went to PR and it really is good for you, not only does it get you out, you get to meet others in similar situations learn different breathing techniques and do gentle exercise which will be suitable for you. But, you do go for an assessment first where you fill out some paper work, and do a short walking test where your sats are monitored. I don't think I have heard anyone say a negative thing about PR so at least go along for the assessment and if you are fit enough for that then it will give you another step forward won't it ?

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Hi Maggie I will go for the assesment but my worry here we go again lol is that they won't accept me because of low sats and high heart rate I know that would really distress me would perhaps help to meet with others in same situation I wonder if there will ever come a day where going out is for enjoyment rather than copD related I'm pleased you enjoyed it but doesn't it feel like well now that's done I'm on my own again or did you perhaps meet up with people or keep in touch best wishes Margaret

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You are pretty much the same as me Margaret, sats drop low and fast heart rate , that is what they are used to dealing with at PR, when I went there was a youngish man there who carried his oxygen tank all the time and was waiting for a lung transplant (believe he has had it now) so you can imagine how poorly he was but he was on the course and did the same as everyone else. Its what these people are trained for people with breathing difficulties of all types. You will meet people of varying degrees of illness, all using different coping systems, all with the same goal, being in charge !

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I will also have to carry my oxygen whilst doing the course or do they want you to do some without I'm a bit confused it's a bit daunting seeing people who are further on in the illness glad the young man had his op

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If you use oxygen to exercise then you use it for the whole class. Also, everybody has their own set programmeYou're not all doing the same thing as some people are fitter than others. You might be on a treadmill at a snails pace and person next to you might be running fast. Same goes with floor exercise. Some might be able to get on floor others might do exercise from a chair. It's not like a gym class where somebody'sout front saying do this do that. You all work through your own list and if it's too much/hard for you you don't do it. It's very relaxed and easy going. Good luck. Joy.

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Thank you joy I will be the snail I'm sure I will do my best it is just such a shock to the system and especially mind to find myself in this situation as for the gym aspect I've been once me going in opposite directions to every one else just hope I feel better than I do at the momment

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I don't take things too seriouslyWhich, for me, is the best way. If I can laugh at myself even when I struggle I find it helps. I'm Actually in hospital at present for 10 day IV antibioticand had a 22 day stint in January too. I hope you'll be feeling better and brighter soon. Joy. X

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Hi joy hope you home soon I was in hospital 2weeks ago on IV in for 11days sent me out with 2dayscipro ended up at a&e last Saturday more cipro for home I was in in January also and Easter pity we weren't in same hospital of to the hospice soon hope thinks work out for you take care Margaret x

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Hi Joy I've just got out of hospital again. Ive had acute bronchitis since Feb 22nd, it clears up for 2 days then I'm ill again on antibiotics and steroids etc. in hospital for 3-4 days discharged, and the cycle all starts again. Hope your treatment in hospital goes well and you are soon home.

Take care xxx

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Good afternoon joy just wondering how you are feeling are the abs doing the job when do you expect to go home best wishes

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Ahh! That's sweet of you Margaret thinking of me. Antibiotics seem to be doing the job it's the shortness of breath that is the biggest concern to me. I had a good summer last year and although I've been short of breath most of my life, I suddenly became very short of breath in September and haven't been able to recover. My biggest concern now is sob. I'm doing the 6 min walk test here in hospital on Monday to see If I need home oxygen. Not a path I want to go down but I suppose if it improves my quality if life it'll be a route I'll have to very reluctantly take. I live alone, have no help, do everything for myself including taking care of quite a large garden which is my main hobby. I'm scheduled to leave hospital on Tuesday but will know more on Monday. Joy. X

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I will be thinking of you on Monday I hope you don't need to be on the oxygen but if you do I do hope you can cope better than me

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Sorry reply went to soon what I meant to say don't be like me frightened if you can start of with some positivity it is to help you I'm afraid I went about it the wrong way and seem to have dug myself a hole I can't climb out of it wishing you well and hope you home Tuesday x

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How have you been today joy hope things are improving and not long till Tuesday home x

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I Hope you don't mind me asking but have you had any news are you going home tomorrow x

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I find myself in much the same place as you Margaret. It's what's going on in the mind with the discomfort, the breathing. I am just getting over a particularly lengthy flare-up or exacerbation will be so pleased when that has settled.

Even so, I did really find the course of Pulmonary Rehab to be so very helpful. We all get treated as the individuals we are by very experienced physiotherapists. A great idea from one of them who suggested using Oxygen whilst going through the exercises, even the simplest of steps, was to actually lay the Oxygen Cylinder down on the floor. The tube was plenty long enough for me to cover my few steps and as other friends have mentioned, I felt in no way intimidated by the fact that someone next to me was hurtling off covering kilometres whilst here was me struggling over metres. The friendliness and camaraderie are key elements.

Just spending time with others did for me create such a positive impact. I do so trust you will feel fit enough to get yourself along, that in itself will be great as it will give you something to look forward to.

If you are not fit enough this time around, no worries. You can do like me and see if we can get the Mind in gear with the other aspects. All part of the big big balancing act called life. And as ever, no-one told is was going to be easy.

I do try and laugh at myself too and say things like "another great step for mankind". OK maybe a bit cheesy but it helps keep me going. You go take your own steps Margaret. We all wish you well.

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Good morning wullie hope I feel better than I do now still on abs after coming out of hospital was on IV cipro sent home with 2days supply back to A&e Saturday given more .can I ask a question you have probally seen I get bad pain and sweats and always feel unwell are there times when other than the breathing you feel ok because I don't know how to cope .I use liquid oxygen for ambultary lead not that long it would be nice to mix with people and go at my own pace but afraid my sats etc will let me down and if I am refused don't know if I could cope with feeling worse than I do I'm going to the hospice later today if I can get myself toghether hope you have a good day Margaret

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I did have a very serious hour during this last few weeks. already having been sent unnecessarily to the hospital the once that succeeded in making everything all the worse to no purpose, my wife held off phoning the ambulance again.

I just couldn't breathe even with any type of relaxed breath at all. We chose not to measure anything either which was just as well as the readings would have been diabolical. Although in serious discomfort basically, I BLUFFED it out!

When finally the breathing came back it was such a relief that I managed to forget about the pain for half an hour or so.

You really are doing so well Margaret so you keep on keeping on. I just love those nice little songs and messages that we pick up over the years..... I can't remember the people that recorded "Oh Happy Days". Was it from a musical, Hair or something like that. Steve Harley's and Cockney Rebel with "Make Me Smile" I think it was that helps.

As someone says we out to have a celebration Day and list some happy thoughts and songs that jolly us along.

Braveheart is such a good way to keep on keeping on.

x

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Glad you recovered from your bad. Do. Thanks for your message of encouragement just back from the hospice wish there was a song that could make it all better you probally seen by my post if there is something to go wrong it will happen to me well hospice finished 3.30 hubby went for my wheelchair someone had taken it had to wait for them to bring it back just got in only me eh best wishes

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We should all have one great laugh together.'Nationallaugh at yourself day' maybe? Hahaha!!X

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I was going to pulmonary rehab, and love it. Been in hospital again so looking forward to going back to rehab and seeing friends there. It's gentle exercise and if its your first time, the rehab nurses will help you and tailor the exercise to your ability. Everyone is different some can do it all, others are having a bad day, some are recuperating from a recent bout of illness but its so beneficial and making new friends who understand and share their feelings.

Try it, if you don't like it don't go again, but if you don't try you will never know. Good luck xx

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Glad you are out of hospital will need to be gentle excercise will have to see how it goes but I will try it is just taking me a long time trying to come to terms with what has happened don't think I ever will really take care

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Positive reply "but I will try it" well done you. That's the first step, a big step. Next step pick up the phone and enquire about getting on coarse.

So proud of you xx

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Thank you you know if anything happens it will happen to me or so it seems I've been to the hospice today Frank went to get my wheelchair 3.30 someone had taken it home had to wait till 5.15 for it to be returned only me eh

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Don't worry at all about posting, Margaret. You will always receive support here, there's no limit to our concern for each other. You're in a very dark place at the moment & many of us have been there too, so we "get it". Did the psychiatrist offer you any help with your anxiety, eg sleeping pills, tranquillisers? I know they're stingy nowadays, especially for people with lung problems, but if you could get some decent sleep & relief from your panic, you'd feel so much more in control. I do wish we could do more to help.

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You are cocooning and it seems dark and lonely but tremendous growth is taking place--One day when you least expect it a beautiful butterfly will emerge-Don't ruminate and worry--There is a plan for all of us--You are part of a larger group and are loved--MmeT

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Hope you are right x

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Thank you Hanne I do appreciate all the support I get from this site and i in some small way would like to be able to offer the same at some stage .unfortunatley I was given no medication it would have been a boon if I had had .Maybe when I go next week all though I won't bank on it you all do so much for me being there thank you

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You already do offer support, Margaret, I've seen lots of kind comments from you! Don't worry about sounding negative either, it's typical of severe depression. We can all tell you're trying really hard to help yourself, although I agree with the others that if you could aim for one tiny positive step each day, you'd really benefit. Also, perhaps next week you should be brave & tell the psych you really need something to help you through this very bad time in your life? Get Frank to back you up. It's no wonder you're exhausted, with all these sleepless nights. And feeling breathless, &worried about the future, would make anyone anxious, including the psychiatrist. I'm sure she understands that. Could you stop checking your sats so often? I know it's hard for you to resist, but perhaps Frank could put the oximeter away & only get it out when HE is worried? I understand why you're doing it, but I think it's massively increasing your anxiety.

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To Frank keeps threatening to take it away from me I'm afraid I would probally freak out if he did but yes I do need to cut back on checking it and I have been trying I will ask next week for help to get through these issues because it just can't go on it is enough to contend with being on oxygen without everything else I am going through I mean it is ridiculous in the last hour I have took my pain killers and oramorph but still no respite and I am boiling hot again how am I supposed to do pr if I am accepted if I am not accepted how will I feel by the way at bottom of my post it says I have Alzheimer's don't know where that come from

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Me neither! Bit of a cheek :D

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I know I would love to know how it got there got enough to contend with without that hospice again tomorrow so far anyway

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Believe--Its going to be ok and one day you will be on here telling someone that who feels like you do now--Love,MmeT

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Thanks mmet

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Good afternoon Margaret sorry to hear you are having another bad day, I really wish there was something I could do to help you feel better. I hope your appointment with the dietician goes ok, please let me know. I have a PR assessment tomorrow at 11am, will let you know how I get on. The only thing I can say is just try to take things a day at a time, do worry about other things. Has reading your book helped at all, I am thinking of buying it. I am also going to the doctors tomorrow afternoon as I really need something for this pain, it's getting worse. Between us we are a right pair, l also have my P.I.P assessment on the 16th May so I am now worrying about that. I have tried not to worry but can't help it, I am getting really depressed about it. Well enough of me moaning on, you take care and let me know what the dietician has to say. Chat later.😊 xx Bernadette

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Good afternoon Bernadette I'm afraid I've made little head way with the book but I will make a concious effort later today I hope you get something to help with your pain we have enough to contend with without extra bits added .I wish you luck for your pip assesment I can imagine it will be stressing you out but you have nothing to hide and there is the old saying imagine them naked We seem to be put in these stressful situations by the people who are supposed to help us Good luck on your PR assesment tomorrow will be waiting to hear about it You have a full day tomorrow so I am hoping you can do something relaxing today .Frank is going out shortly shopping i get really stressed when he leaves me talk later I will let you know about dietician Margaret xxx

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I love the saying "imagine them naked" I used to work with mainly men in construction business and the amount of times I did that I lost count. The other thing I hated was in a meeting and he would stand over me, so I changed. I got done up to the nines in my business suit and only had one seat for him to sit on. I stood up (in my high heels as I'm short and I wanted to tower over him) he soon stopped being so aggressive. It's about changing things you don't like, when Frank goes out think of a nice positive things. Try reading a few pages of that book, I love doing jigsaws and I also do some on my iPad. If you have a garden take a good look, can you see flowers, or spring bulbs coming up in pots. Have you got a bird table or a bird bath. Birds aren't fussy what they splash about in it doesn't have to be anything expensive but they do keep coming back. My hubby is still working so I spend hours on my own, we decide what we are going to have for tea the next evening, and during the day I sit and peel veg and potatoes on a tray while I'm sitting down, so they are ready for my hubby to cook if I'm not up to it. Little steps each day, good luck, most of all try to stay and think of positive things.

Take care xx

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We have a bush in the front garden which Frank hangs fat balls on you should see the birds squabbling we'll done for getting one up on that man hope he got the message and changed his attitude I do get stressed when Frank goes shopping and find it hard. To relax one time I would have relished time to read etc now I have the time don't want it just can't get back in to reading hopefully one day xx

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It's good that you post because you are sharing and we are listening. It's important to keep communicating and that's what you are doing.

Keep seeing the Psychiatrist and see how she can help. Your husband can see if there is a carers group in your area to help him. Your GP surgery may know.

Pain is terrible and wears you down so more help with that would be good. Xxxx

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Hi sassy a carers group would help at the momment he is seeing someone at the hospice which I go to tomorrow all being well it's a 4week course I will give it my best shot at seeing the psychiatrist i can reconise i am becoming very needy and don't like Frank being away from me but I know this isn't fair and I try not to reading and posting on this site helps it would Definitley be good to kick the pain into touch xxx

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Hi it might also help you to go to a breatheasy group. These usually meet once a month. They are in most areas so googleto find yours.

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Thanks I have had a look there is one about 8mile away you are right once a month have you been

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Yes but I found a couple of bigmouths ruined it. One of them was very severe and on oxygen but she had enough breath to moan for England. I am sure yours will be better so why not go along and see.

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You never know one of these days I won't be the big mouth pity I'll have the oxygen

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The two I've been to in Hanley and Crewe are both great, lots of kind helpful people, interesting speakers, and occasional trips out for meals.

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Thanks ergendi one day I might give it a try just a bit strange going somewhere as a newcomer when others may be in a click best wishes

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I don't know where the Alzheimer's and reconcile. Came from under neath my post but I has far as I know lol do not have it

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I can vouch for billiejeans method of doing at least one positive thing each day, I've used it myself many times when I've been feeling useless and thoroughly fed up with myself. The thing is, you need to view things in the right light too. Yesterday you saw the psychiatrist - having read many of your posts I think that's a tremendous achievement on your part yet you've skipped over it as if it was nothing. It wasn't - you made the effort and got yourself ready, and you went - in spite of how you may have been feeling or whether you wanted to - you did it. Don't overlook or devalue what you are doing - you're in pain, you're on oxygen and you seem to have a problem 'accepting' life on oxygen but nevertheless you are still trying to find some help with these issues. Take some credit for that rather than being fed up with yourself for what -'for the moment' you can't do. You're seeing a dietician - that's good, you're seeing a psychiatrist - that's good, and you're going to be assessed for PR they're all positive things and you need to see them in that light. It doesn't matter if progress seems slow all of these things take some effort and as long as you're making the effort you're entitled to give yourself a pat on the back. Don't forget, the glass is always half full.

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Great reply Magpuss.

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Thanks so much for that I will try Billiejeans methods hopefully at the momment I seem to be getting really short of breathe more so than usual I wanted to read your reply to my husband but I couldn't heartbreaking I wish the oxygen helped with the breathing my husband agreed with you that I have accomplished a lot this week especially with being rushed into hospital at weekend .You are right though i do have a problem accepting oxygen i think one of the reasons I don't move about much is the trailing leads I think when I am sat in my arm chair I feel as near to normal as I can sad isn't it There is a programme on bbc tonight about anxiety and illness I may record .The other thing is i can't seem to find anything to fill my days they do drag I have started to get up in the day more when I can but I wish for bed time then lay there for hours head whirling boiling freezing hurting panicking vicious circle I rarely bother to get dressed one time it was a treat to have a lazy day now it's a chore once again thank you for reply by the way under my post it says I have Alzheimer's not yet don't know where that come from need to spread the word or get it changed

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Hi there again....did you manage to watch the TV programme on Depression after all ?

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Not yet will will watch this evening I think I'm feeling so low at the momment but then again when am I not lol .I seriously am not coping with oxygen just can't .I have been looking at tramadol which doctor gave me for my pain it says shouldn't take it with copD and can cause suicide amongst depressives charming hope you having a good day how are you getting on with your hot flushes I am absolutley wringing wet do you mind me asking are you on oxygen x

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Yes my darling, I've been on oxi now for maybe best part of 4 years. To begin with it was just when I was active but to be honest,I had 2 years of continual infections/exasperations and then needing it 15 he's/day until a year ago roughly when its 24/7! Like u I'm sitting down and honestly,from my head to legs I'm sweating like no tomorrow. Can guarantee that within 20mins,I'll be freezing cold,shivering and driving my poor son mad,by asking for the heating to go on. When will it end? I'm also on the same anti depressant as you 45mg.

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The words that appear under our posts are sometimes a bit of a mystery. I can see how the word 'reconcile' relates to your post but can see no connection between your post and Alzheimer's - but don't worry it isn't saying that you've got Alzheimer's. I presume those words are generated automatically, but I think you'd have to understand a lot more about computer logic than I do - to make sense of it.I watched the programme about stress, found it very interesting - when you watch it look out for the bit where they're swimming in very cold water and listen to what they say about brown fat. It made me think of your sweating and weight loss problems. Also, the bit about what you tell your brain was similar to what I was trying to say. Good that you recorded it, it's a good idea to watch and listen to those sort of messages more than once, it takes a while to change the way that we think about things but I think if you could do that it would help you, a lot. Hope you, and your husband have a peaceful nights sleep xx

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These are very good points you've made Magpuss. I'm so glad you pointed out to Margaret all the things she has already done and achieved. It takes a lot of guts and a lot of determination to go out to appointments etc., when not feeling well, so you see Margaret you are doing positive things to help yourself and try to get on top of your anxiety. I know it doesn't feel like it right now but you are moving in the right direction. And that's all any of us can do.

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I will watch that programme glad you found it interesting another day on life's treadmill I have to go to the hospice again was not sure if I was going to make still a bit unsure got a few hours sleep but woke up feeling dreadful again felt sick shaky and of course flaming pain do you get days when all ok except breathing that is what I would like to know because surely there must be some respite xx

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I get pain in my neck, shoulders and collar bone most days but some days it isn't too bad, the only other pain that I have is in the intercostal muscles and that's normally not much more than 'momentary', My copd is mild so my breathing isn't bad, unless I have an infection - or, am walking uphill. I think I'm just lucky..

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It's good that your pain not to bad no pain would of course be better I asked the same question at the hospice got much the same reply as yours or no pain think I must just have picked the short straw

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Having been to rehab Time-2-drink, I saw afew people actually on oxygen, the exercise is tailored to your need supposedly. I had little problem with the PR except for it making my pain worse and flaring up my hernia. There is no definate criteria for Rehab and the assessment will decide if you can or can't do it. I was told afterwards by physio that the exercises were not suitable for my arthritis, but great for the heart and lungs. With perseverance I did finish the course devised for me, so Frank is right it may work out well for you unless you try you will never know. Best Wishes for your assessment, keep in mind this is supposed to assess and find what is best for you xx

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Thanks Katie that's what is worrying me controlling my pain so do they devise specific excercises for people like I say if I am turned down I don't know what it will do to my confidence it's already on the floor On one hand I am looking forward sort of to meeting people with a little trepediton on the other I'm a little worried well to be honest a lot got the hospice again today if I can pull myself toghether xxx

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Yes, individual exercises for each person. If they suggest something that you don't think you can do or will cause you pain/discomfort you just tell them and you get an alternative suggestion. X

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Thanks joy just back from the hospice it finished 3.30 it's a ten minute car journey hubby went to get my wheelchair guess what someone had took it had to wait over 1.30 for it to be returned is it me or what x

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Oh no! You certainly don't seem to be having a very lucky time. Glad you got home eventually. X

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You couldn't make it up could you x

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i know how you feel i am the same but not on oxygen yet my wife is the same just try to keep your head up and i hope you feel better soon x

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I really don't think that day will ever come I spend everyday afraid and it is crippling me and affecting my husband even though he says he is ok I know he isn't x

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Don't beat yourself up. Everybody gets fed up and it's ok to be fed up. It's nice to just say it sometimes and just get it off your chest. Be gentle with yourself xx

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Thanks I am fed up with being fed up where is the light at end of the tunnel thinking what's the point xx

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I can't even begin to think how l would cope with o2 etc.I think yours braver than you know Please disregard me if its lame Lately I've been doing Pininterest Absolutely anything I like Ive got boards of Newcastle when I was young hmm...60's 70's Ive got king charles pups Clothes House ideas and even just nice pics I don't care who see's them or not If I cant get into my book And I'm guessing if anything happened to you tbdrink think how lonely Frank would be!!

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Hope you never need oxygen I Definitley can't cope but there are lots of brave people on here who can I'm glad you have a interest keep at it .Frank would be sad I know but

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Honey my heart goes out to you. My husband has a phobia about hospitals and sick people. He is in pure denial in regards to my situation.

It took me to get soaking wet to weigh 120 pounds at 5 ft 6.

Sweetheart as much as it pains us. This is our life now. My sats are oftern low and my heart rates high too. Thus the oxygen. With the oxygen my sats toggle between 93 and 96 and it causes my heartrate to become more stable. It's all about survival. We learn to make the best of a bad situation.

I bought a LV Satchel bag to carry my oxygen tank in. Why? Cause it made me feel better.

My outlook is simple. Only 2 moths into this emphysema COPD diagnosis. At least I'm being seen and not being viewed. I still have life.

Chin up sweetheart. It could be worse.

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Hi cherrea you seem to have a positive outlook I feel so weak not being able to accept and cope my sats rarely reach 90 with the oxygen I'm sat now feet up oxygen on level at 85 this happens often don't know why but I have mentioned it to professionals but nothing done .so don't know what to do take care

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Hi there must be things you can do now that you wished you had the time for when you were too busy. Look at for example on FutureLearn which is free courses on lots of interesting subjects. Join other sites too, maybe Pininterest or something, there is lots of choice. .

Have you ever wanted to take up painting, crafting, knitting etc? Now is the time to do it. The main thing is to keep yourself busy and distract yourself from your upsetting thoughts. Read more books, magazines or tv. With so many channels these days you are bound to find some which interest you. Get a penpal. Just some ideas of things you can take up. There are lots of sedentary things you can still do.

There are many on here on oxygen and very severe like you and you can live for many years yet so it's far too soon to give up living. You just have to adjust your horizons and concentrate not on what you can no longer do but what you can. Not easy, but to make the most of the rest of your life there is no choice really.

Are you on any meds for your anxiety yet? Are they helping?

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Thanks might look up future learn me and knitting sewing etc don't get on can knit but never got hang of casting off lol so had lots of half finished projects poor Frank is sat here wanting to go to bed but I hate going up to bed it may sound stupid but it frightens me and he sleeps and I lay there in my panic then come the next day I want us to stay in bed as long as possible to shut the world out do you think other people get like this .The doctor put me on Mitrazapan a couple of months ago I started on 15 mg went to 30 mg and 3weeks ago went up to 45 mg so god knows what I would be like without it Frank found something to watch on telly so I've got a reprieve I need to take my tramadol and need at least 30 minutes before I can move afterwards take care Margaret

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Hi Margaret sorry I've not been in touch today, but my husband took me out. I hope you are feeling a bit better today. The weather has been really nice here today, hope it's been nice up home. You take care will chat later 😊 xxx Bernadette

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Weather not been to good here glad sun shone for you xxx

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HiYOu will never have ruined your husbands life. He loves you abd professionals are there to help you both. Keep your faith and hope. Try to remain positive my thoughts are with you. J.

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Thank you for your kind words I know he loves me but it is breaking my heart him seeing me like this today and yesterday the pain I has been unbearable and I am so low the doctor can't do anything other than the tramadol and oramorph but they are not working and the horrid sweats I am having also it's just all to much I have been trying to be positive but to no avail take care Margaret

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I hope thing go well with you .send my love.xx

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Thank you so much still struggling on x

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I so know what you mean, the guilt is enormous on how I’m affecting my family.

I have often thought of packing my bags and dissapearing so I won’t be so much trouble to them, But that may hurt them as well :(

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