So scared and sad

I had exasperation in November was in hospital then in December spent Christmas in hospital with pneumonia .I discharged myself I was so stupid .I came out with 2 concentrators on oxygen honestly never expected it .My stats are low sometimes go to 79 when I go upstairs generally around 84 96 with oxygen .I have been getting tightness under left breast and terrible time with body temperature freezing cold to practically stripping in blink of an eye .Also my feet feel so strange a bit numb and tingly .I mentioned it to the doctor when I called him out last week he said I had a pulse in my foot .I was due to be assessed on the 27 Jan but I had a infection so now Feb.I am sure he fobbing me off when I asked if I would get oxygen to go out he said oh we will wean you off sometimes when I come off oxygen I am 96 then go to 82 84 but can go to 90 then drop again .I got a peak flow and can only do 130or 150 .Also I have lost over a stone since Xmas I feel like turning to drink feel it is hopeless and that's it life done .I am sorry to be a moaner but when I try to talk to my husband all he will say is your poorly you will get better .This was going to be our year 40years married and 65 in March we had holiday planned and weekends in our caravan I have ruined my husbands life

35 Replies

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  • Hello Time_2_drink, what a horrible time you are having at the moment. I hope your doctor gives you lots of help and rest assured you have not ruined anything.

    When you are poorly, things have to change but you can pick yourself up again and go on holiday.

    We are here for you so you are always well supported. Take care xxxxx

  • Thank you so much for your kind words I so hope you are right awl though I dont know how just yet x

  • oh Time_2_drink don't beat yourself up it takes time to get over infections you have plenty of time to go on holiday and weekends in the van concentrate on getting better and everything will fall in to place

  • Thanks I feel has though the bottom as fell out of my world and wonder will I ever get out again .Hope that I will get oxygen to do so will have to get some muscles grown to lug it about

  • I had about 8 chest infections in one year I went for my lung function test and my inhaler's were changed and touch wood they are still working.

    Try and eat good healthy food to build yourself up

  • I find I can't eat like I used to I seem to drink endless cups of decaf .Im pleased your inhalers working .I am terrified about my assessment just know I will have very little function stuck in here forever .

  • It's early days to be over a bad pneumonia you know so no wonder you're feeling down and sad. Please be good to yourself and take your time in getting well. You must have been very poorly indeed. It used to take me up to three months to get over it and I believe you had it worse than I did.

    If you GP isn't helping with the pain on the left I suggest you go to A&E or a hospitals drop in surgery to have lungs listened to.

    Concentrate on eating well, rebuilding your immune system and getting strong again to enjoy your plans with your husband. From your post it sounds as though you are a little depressed, please speak to someone about it. There is help out there if you can reach out for it.

    All the best to you in getting well. Peege

    Edit: by getting well I mean to say getting as well as you, personally can. It's still early days. P

  • Thanks I told my doctor when he came that I was not sleeping actually started to panic getting into bed with oxygen even tried without but couldn't So most nights just sat in chair awake all night haven't had more than 3 hours since December some nights non or naps .I asked doctor for something for anxiety but he put me on mitrazapane ..I can't go to A&E no portable oxygen

  • if you call 999 the ambulance put you on their own portable oxygen - don't worry - my mum aged 85 got pneumonia on top of copd the whilst in hospital got HAP hospital acquired pneumonia - they have told her she will never come off oxygen except for at the most 1 hour...and honestly my poor little mum hasn't a hope in hell of wheeling or carrying that portable oxygen around its ridiculous plus she would be terrified of coming into contact with naked flames etc..hospital said she might be weaned off but her own gp says not at all this is as good as it gets - not nice for any independent soul who previous to going in hospital was mobile and active and independent and all of a sudden is tethered to 15 metres of life giving oxygen !! I think its worse than actually being physically disabled as you don't get the support from social services or financial support from anyone as she gets her pension having worked all her life !!

  • Sit down have a cup of tea you and your husband and talk turn the tv off and just talk as i do not think you have ruind his life just because you have become ill .tell what you think tell him how you feel go to your doctors and see someone there and tell them how you are make them lisen to you byt in a carm way even see the nures and tell her how you are and about the pain you have then if they do not then go to a and e and tell them

  • Iwish he would listen to me he is burying his head in sand I don't think he realises it ain't getting better I wish .I can't go to A&e because I don't have outside oxygen also although I don't want to be in house forever I am worried about will I be able to manage it will people stare

  • when you are on 24/7 oxygen you have to be transported to hospital usually ambulance car etc - hospital will give you the number to call and they provide your oxygen...also mum has been give a thing like a golf caddy to put oxygen in...surely you have seen dads carrying the oxygen for little babies who need it .. if people stare its their problem - sitting about with no exercise is not doing you any good with copd..took my mum a few weeks of not wanting to carry on to realize she is still alive and kicking..she will never go out with the portable oxygen as she would never be able to carry it...but do those mobility scooters have oxygen carrying facilities?? just a thought? I cant persuade mum to consider one even tho it would mean freedom to go wherever she wants for a few hours

  • Hi nice to meet you and welcome to the site. I can't add to the great advice you have been given. But I will say your husband needs a reality check. You don't 'recover' from copd, though a lot can be done to improve your lung function, you will always have it and it's a case of managing it with good medical help.

    It's not your fault you have it so please don't beat yourself up about it - would you blame your husband if he became ill through no fault of his own? You need to remind him of this.

    Hopefully when you get some proper help you will be able to go on trips with him and be fit enough to enjoy them. x

  • Thanks I know what you are saying about him is right I have had copD for about 6 years but stupidly didn't see this coming .I feel like I am on 2 leads one upstairs one down and can only get a certain distance on both before lead unplugs .I went to bed at midnight and been awake since 2 up since 5 not wanting to disturb him he has gone to work retired but does couple of days a week .I don't want to stop him he needs time away from me but I'm so lonley .i tried to do blow thing this morning only 130 .

  • No one sees it coming or thinks they are going to get a chronic illness so don't be too hard on yourself. You have enough to deal with without guilt as well. Life is full of what if's and I should have known etc, but the fact is you didn't. No one can foretell the future..... Take care x

  • check with the oxygen supply company you can have upto 15 metres which is 45 foot !!

  • Welcome and please realize you are having a down time, I had pneumonia, then the flue like 2 weeks later on the instalment plan, first high fever, then 4 days later running from both ends, I still hadn't got my energy back from the pneumonia. It takes our bodies time to heal. If your dr is not listening ring the ambulance people and tell them you have no portable oxygen but you are having pain, yes it's hard on our partners and sorry guys but the majority of men are not good with sick. When I had a high fever I literally passed out for 10 hours. Blair thought I was sleeping lol, come now no movement, change in position, or even a pee, they don't seem to have the nurturing instinct although there are some out there that do.

    Once you get on the right medication, drink lots of water, flavored water, sugar drinks, coffee dehydrates your body, you need to hydrate it, soups. I honestly think the best place is the hospital, they will hydrate you with an IV solution, check out your pain and you will have the chance to speak to someone about your oxygen and they can test you right there.

    Stress is very bad for you, practise some breathing, close your eyes think about something pleasing maybe listen to some quiet music while you do. Don't think about what you can't do, think about what you can, like you can see, you can move your arms, your legs, wiggle your toes, your fingers and breathe slowly. Once you calm down sit with your hubby and tell him to ring the hospital. They come equipped with oxygen I think, I know they do here in Canada.

    Hang in there

  • When I was in hospital I wasn't told anything only words I got from most nurses where lets do your stats and any pain which I hadn't had the time .I wasn't sleeping in hospital either but was not given anything .one of my problems is I don't know what pain you do get with this so I don't know if it is part of it or not .I guess you are right about the coffee it's a good job I drink decaf .I wonder will I feel a bit better if I get oxygen to go outside and will I manage it I pray I will

  • Hello time_to_drink

    So sorry to hear your feeling so low with your illness, I also have COPD and have bought a portable oxygen machine on eBay which is perfect for me. Make sure you have the right antibiotics as I have had some that do nothing for me. Hope you feel better soon, I know how depressing it is and also realise that sometimes it takes a long time to get it manageable.

  • Thanks I would like to get a portable oxygen machine I would like a pulse one but I breathe through my mouth so probably couldn't .do you manage to get out and about with yours .What type of thing do you use it for sorry to ask daft questions but I new to this .what type did you get .I am getting into bed to try to get warm I have heating on 23 pyjamas cardigan and thick dressing gown on .on bed I have 2 quilts and a eiderdown still cold must have no oxygen in body

  • Hi, first of all why oh why did you discharge yourself ,,,? In my opinion with beds at a minimum they would have sent you home if they thought you were well enough ,I would ask your go to refer to the pulmary rehab team ,not nesasarily for the fitness but you will be the care of nurse specialists and physics who are dedicated to the care of us with asthma and copd ,best wishes

  • Blind panic being in hospital and honestly never occurred to me that I would be on oxygen permanently .Thought I was on oxygen in hospital because of the pneumonia .i do need to be referred somewhere because I totally in dark and feeling so ill with body fluctuating temperature clothes on clothes of and no sleep .I

  • You really need to speak to someone ,,, and I highly recommend the physios respiratory nurses team best wishes x

  • Welcome to the site. Hope you dont mind asking who supplies you with your oxygen concentrator and do you have contact with the respiratory physiotherapist. I need ambatory oxygen when walking or doing jobs that will make me breathless. I have two kinds of oxygen, cannisters which I can wheel around on a small trolly they provide and a electric and battery machine for indoors (they only have a battery that lasts for about twenty mins) I use the cannisters when I go to get my weekly shop or on visits. Both of these are provided by my oxygen provider after being assessed by my resp. nurse.

    Speak to your respiratory nurse, if you dont have one ask to be referred to one.

    Sorry cant help with the hubby bit as mine also has problems accepting that I cant do things like I used to, but now he has to come in with me when I see my consultant so things are starting to sink in.

    Cheers

    Sue

  • Boc supply the concentrators I haven't seen anybody other than doctor since I came home .I should have seen nurse for assessment 27 Jan but she could not come because I had just finished antibiotics .I am now on them again but she said she will come On 17!feb .

  • I have just come out of hospital after a really serious pseudamonis infection and my breathing getting to be really bad before I went in. I am 58 and have bronciectasis and COPD. By the time I went in my stats were 70! Put on oxygen.I had 2 weeks IV antibiotics and I came out of hospital with oxygen as my sat levels kept dropping when not on it. I can feel for you. My oxygen was on prescription from hospital as a concentrator and my cylinders x4 portable and 1 large came from the community respiratory team as hospital in Gloucestershire could not prescribe these they had to come from community team. I have also been told it can take a long time to recover ie weeks / months. It sounds as though you still are not well and maybe should be checked again as well. Good luck

  • Sorry I have not replied earlier Time 2 Drink, Unfortunately sometimes things seem to work very slowly and when we get these darn infections kicking in when different departments are trying to assess what our needs are can be very frustrating and worrying. It took the respiratory physiotherapist several months before my lungs could be tested because of the constant infections. I use oxygen when I am out and if I'm doing things around the house. It does not stop me getting breathless and I still sound like an old out of control boiler with or without the oxygen.

    It was hard for my hubby to come to terms with the fact that I was no longer going to do the one hundred and one things I used to do and he was going to have to start pulling his weight especially around the house and he did not take to the idea very well. 5 years in and he is much better, now he does the hovering and I do a bit of light dusting, we change the beds together (mind you he's useless at it). I'm going to have to tackle getting him to hang and bring in the laundry, I've put this off because I'm a bit OCD about having matching pegs on each items and everything has to look neat and straight when they are hanging on the line, he just slings them up all higgledy piggle.

    With my hubby it was and still is that he gets scared when I'm poorly so goes on the defensive and tries to pretend that it not happening and if he is grumpy and bad tempered I will jump up and say joke on you I'm fine, which I know ain't going to happen.

    Be kind to yourself if you feel poorly then rest, don't overdo it. Whenever possible get you husband to go with you to your doctor and hospital appointments so he know what is happening first hand, write a list of things you want to ask the doctors/nurses about so you don't forget.

    We are here, so if you feel like a moan or chat write a post.

    Sue

  • Hi,

    I have been there where everything you planned has gone to dust and you wonder what is next for you. However I agree with Bandit2:- Recognise that this is a downer time and things will get better.

    No, You have not ruined your husband's life. Do not take on that false guilt. It is a lie. You have an illness. If he had been the one sick, would you blame him? During life we have opportunities to step up and help the ones we love. This is a time you can work together to fight this illness.

    You can go to A&E by ambulance as they will have oxygen if you need it and will look after you until you are seen. If you can not go out without oxygen then an ambulance would be the best way to go. Do not be afraid to call them, they are there to be of service. Vitamin A and C help with chest infections but it sounds like you need to go to hospital to get x-rays etc to check how you are going and get further help.

    March is not here yet, so I hope you are feeling a lot better by then and I wish you and your husband some great moments during your holidays.

  • Thank you I know I need help but not sure where to start or if I will just be told it's part of the illness get on with it .I will hopefully get some answers when I see the nurse who doing assesment

  • Hi,

    17th Feb sounds a long way away for the nurse. The hospital will have more equipment and "on site" so easier for you to access. The fact that you are feeling so cold and have to sleep sitting up is not the best. You need answers now, not in two weeks time. But whatever you decide - I wish you all the best.

  • Hi,

    Me Again! Just thought to say your concerns are real and whether they find anything or don't find anything wrong, it is always worth it to check. At least then you'll know where you stand.

  • I know you are right just getting the courage to go and checked out I have 3 days anti biotics left I'm thinking if I wait till they finished and no better will call for help

  • We've all had times when we're down. I commend you for sharing your feelings, but maybe you shouldn't give up so easily. You may think you've ruined your husband's life, but it seems you are his life. What would he do without you? I'm not sure how they do things where you're from, but I was taught that the vows spoken at a marriage are pretty much a lifetime commitment to each other. For better and for worse. Through sickness and in health. For richer of poorer...til death to us part.

    Take care of yourself. You need each other.

  • Thank you for your reply I don't want to just give up and yes I can see where's hat you are coming from but it is very hard for me to find a positive at the moment .i haven't slept above 2 hours in 24 since December sometimes none .The burning up one minute and shivering with cold the next constantly taking clothes off and putting back on I am wearing layers .My poor husband must be cooking I have 2quilts a eiderdown and a throw on bed ..Although I don't know why only in it about 2 hours a night then I wake with shakes panicking and have to get up.Then there is the pain under breast to contend with the shakes etc etc .I am sorry that I sound pathetic but this morning my. Blood pressure 193 over 89 did a later read 175 /85 .The thing is not knowing what is common in this illness and what isn't when to phone for help or not .What you said about my husband is true I can't stop worrying about leaving him alone 40years in March

  • 40 years married that is

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