Newly diagnosed copd/emphysema

Never written a blog in my life!

After being ill for the last 5 months with endless chest infections although had many probs with bronchitis/ pluracy/pneumonia throught my entire life, recently collapsing 4 or 5 times at work and (getting fobbed off by what now seems like every gp in the surgery )

I collapsed again a month ago now with exhaustion and being unable to breathe and was rushed to hospital with exacerbations of copd as I now know and emphyema.. Since coming out of hospital they seem to be unable to control the exacerbations so as soon as I finish the antibiotics/steroids I hit the deck again... Feeling pretty rubbish and as am a loan parent and now on the sick and waiting to hear about a claim for ESA

This will be the 1st time in over 20 years have claimed any sickness benefit, I am now so stressed over money and all the bills coming in am not sleeping my hairs falling out and feel really miserable this morning.. My chest is terrible and am struggling to get off the settee as each time go to clean up I can't breathe and have chest pains and have to sit back down and take the inhalers/nebs.. Someone please tell me this gets better? :-(

24 Replies

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  • Hi Ali,

    Sorry this diesease does not get better, but you can live with it. I was diagnosed 2 years ago, and like you i was scared stiff if i am honest, as all sorts of thoughts go through your mind. But help is available, speak to your bank and explain your situation, they will help you.

    With regards to fitness have a word with your doc, and see if there is arehab progamme you can join, this educates you to how to handle this diesease and if your willing join in the exercise programme, it will help you get a bit fitter each we, making your life easier, hoefully making your down day less and less.

    Also this mob on here as brilliant so knowledgeable, and they keep your spirits up,

    Remember you are not alone, drop me a line if you wish, we all stick together

    Take Care, Be Positive and Smile :0

  • Hi Ali.

    I was diagnosed over 4 years ago, its not the end of the world although it seemed like it to me then.

    Lots of help is available as Muckster has said, Rehab, Respiratory Clinic, Local Breathe Easy Groups, etc.etc.

    Above all you are here on the BLF site with loads of info and above all lots of very supportive people who really do care.

    Best wishes

    woodshaper

  • I'm so sorry to hear you are having a bad time. mucksters right, the disease is here to stay but once you get sorted out your life will improve no end. I know its hard with the tiredness and breathlessness so just try not to do much and prioritise. It might be a good idea to make an appointment with the c.a.b to help you get your finances sorted. Try and build a support network around yourself, I live alone and know how hard it is to ask for help after being so independent. Have you got any family or friends that can help out until you get going? I know its hard to believe but things will improve. This isn't the beginning of the end, its the start of a different life style but just as enjoyable. Try to relax as stress can lower the immune system, most of all don't beat yourself up and look after yourself. :)

  • So sorry for your situation Ali

    Please ask your GP to refer you to a respiratory consultant, I feel you need to be checking in with a consultant at leasy 3 monthly if not more with the way things are with you at the moment. Also ask you GP about accessing the Community Matron in your area for further advice and support, especially as you have not long been out of hospital.

    The emphysema/copd will remain with you but you can get to feeling a whole lot better than you are now, to help you manage your symptoms and slow down the progress of copd, along with ways to help you avoid further exacerbations, please try and access a pulmonary rehabilitation course, ask your doctor, consultant, community matron, for a referral to a PR course.

    Please also phone the BLF helpline on Monday for further advice and guidance, 03000 030 555. The BLF helpline is open normal working week days between 10am and 6pm

    Hope you are feeling better soon.

  • Hi I am waiting to hear back about the rehab although they said am too ill as in crisis at min so can't do anything until am out of it :-)

    Thank you..

  • when you hear back ask how long the wait list is, if its 6 months or more you may want to keep your name on the list.

  • Hello Ali,have just got in from work & read your blog.I am so sorry to learn that you are going through so much.try to relax & not get yourself stressed out so much.I know it is easier said than done.The support from folk on here is wonderful.you say you are a lone parent.do your children/child not do their share of the chores?

  • Hi Everyone,

    Aaww thanks, I will get in touch with the bank and cab on monday see how I can sort bills out, I have stressed myself out so much this past couple of week now my wage has gone,

    It is a big adjustment and very scarey not having it I guess...

    I have slowed down the past few months anyway with constantly being ill so not to bad as am getting used to not dashing around as always have.. I think the hard thing to deal with besides the financial hassles is the fact I have always been the one who runs round around after everyone, Takes care of everyone around me, Hard having to say no I feel rubbish today I can't do your shopping etc and people are still expecting it when they see I am having an ok ish day they still think am able to dash around... So am saying no for the time being but feeling bad...

    I know my lungs now won't get better but thought that it may improve alot when not exacerbated... ?

    I am so glad have joined the site and it is lovely to meet all of you!

    Many Thanks,

    Ali x

  • Hello,

    I came across this the other day whilst I was searching the internet, you may find it helps you to cope better ?

    relaxation techniques that have helped me to relax. It's not a difficult thing at all, in fact, its simplicity is the very thing that makes it useful.

    If you ever do anything like meditating, or something to relax you, then there ought not be, in my opinion, any fixed way to sit, because the purpose of such things, is to achieve something, relaxation or a connection to the real you, like by finding a way to shut off all of the outside noise, the haste, the impressions, the motion, all of it, to get in touch with your own self, in a natural way and in its natural state.

    There is so much exterior drone, that it drowns out our own inner voice, the one that guides us, and is something deep within, so not something like someone when ill mentally, and hearing voices in the head, but, the quiet part inside, that is maybe the core of your being, your intelligence, everything, which all makes up your drive.

    Being able to take moments to kind of separate from the outside drone of life, is a way to charge your batteries up.

    Most Simple Meditation

    Keep your eyes open and look at a spot somewhere in the room that is easy on your eyes that you can focus on, just to stop looking all over the place, it could be anything in the room but if you are sat down in the way you feel most comfortable, in the way that will allow you to sit quietly without fidgeting around all the rime, then a spot on the ceiling wouldn't be easy on your neck if sat in an upright position, but if you are laying down then yo could fix your gaze on something on the ceiling, or even attach something nice to look at somewhere which will be in your direct line of vision.

    a/ I forget everything that has happened to me lately and go to the place deep inside me where it is always safe and warm

    b/ I'm loving and I am loved, I deserve the best, I let everything from the past go and I forgive others and myself, so that those things and people cannot control me or my life, I am free. I choose to think things that support me and make me feel strong, I create the atmosphere I need by making sure that those around me reflect my chosen positive attitude.

    The things I choose to think about others, will determine what they are able to show me.

    My thinking directs my own movie in life, it can open or close doors for me.

    I love myself so I take care of myself in every way that I can.

    Sit comfortably.

    Then starting from your toes, say out loud (not loud as regards volume but speak it as opposed to saying it silently in your head)

    • 1) I relax my toes (to do this you might need to wriggle your toes to make a connection, get in touch with them, focus ion them to make it real, by moving them too, you may exercise hem a little so that you can then relive the stress there and then relax.

    As you do this, you will gradually become truly focused on your own body and it will calm you and give you power to influence how you feel.

    Therefore, though you may move from your toes, to your foot, the heels, the soles, the ankles and then further, you may feel that you need to go back a few steps, because working those parts causes you to wan to wriggle your toes a little bit more as you are now getting your energy to move around and meet up/bundle, there is no harm at all in taking all the time in the world to do this for you, and to go back and forth getting in touch with what is in fact you, of course you are your mind and your feelings, your opinions, but you is you and your body, the you as the thinker, the director, is slightly different to you the body, as without you the person, the thinker, the individual, your body would be nothing,

    however,

    without the body we'd be nowhere either.

    This is why, though the two are combined to make what is us, we need to un-confuse the two parts, so that we can allow ourselves to feel our bodies because if the body is stressed out then it affects how we think.

    Even though illness is affecting how we feel physically, we can still overcome some things by learning how to relieve stress where it is possible, instead of making the conditions we are dealing with, feel even worse.

    Here I won't speak about souls and spirits as these things are closely or very often associated to belief systems and religion, and things are confusing enough, we want to deal with scientific medical, and feelings, meaning because we have a mind, we can think and feel if we had no mind we would not be able to perceive or feel pain and distress, happiness and joy.

    This is why, it is better to consider this a matter of mind and body.

    What creates a mind and why they exist how they do is another issue.

    Mind and body relax.

    Feel your toes then move slowly, further, to move your feet or foot, it depends if you wish to do one side then the other or do them together, that's up to you.

    • 2) Feel your feet, say,

    I relax my feet.

    And because you say you do, and are, then to make it real, the movement you feel you need to make is connected to this getting in touch. so what you feel ,listen to it and do it, if you feel you've had that bit now, then move on, slowly, think of your ankles, move your foot in circular motion and feel the tension drain out and the pressure go. Feel the comfort and the relief.

    • Enjoy that.

    • 3) I relax my shins and my calves. Feel that and do whatever you feel you need such as move your feet to feel the muscles at the back of your leg, carefully and gently, circle your feet to focus on feeling your shins and calves.

    • 4) Move upwards and whatever part of your body you think of, simply say that you relax it and then hover around on that part trying to get in touch with it, willing yourself to relax it, as though it were blessing it with every good intention you ever had, now all focused on you and this form of love for yourself (not vain love)

    • 5) Obviously once beyond the thighs, we come into contact with lots of very important organs, muscles, and as you arrive there with all of your being/mind/focus you will feel them, like as you never did before (especially when you use this and make a routine of it).

    Give the upper part of the body lots of time, there is no train to miss, only the one that is your own luxury carriage, all for you. Bath in this gentle real love and let all of your heavy thoughts go, don't think of you and don't think of them, just be here now in the moment and feel. Be kind to you, that is all, let it all go.

    • 6) Work around upwards, think in terms more of joints and muscles first then the organs, but, if you feel you are drawn to needing to try to feel those parts in you first as you move upwards, (organs), then do tha, you may start feeling things like you probably never did before as nobody told you how, do then whatever makes you feel good and whatever feels right as that will be right for you, not them (whoever they may be).

    As you work you may feel yourself becoming more aware of yourself and what you are doing, how you're sitting, if you are sitting in a way that is only making you feel (more) rotten you might suddenly feel a natural reflex like the urge to sit up straight, which will relieve pressure in itself, on your internal cogs/machinery = diaphragm/stomach too.

    • 7) As you are getting in touch, you may feel your breathing getting deeper, as the exercise as a whole will be causing that breath to be relieved of unnecessary stress, so you may suddenly notice that you've become aware of your own breath, its sound, its movement, without you having even got to that bit yet, but, do go with the flow and do not be afraid to feel, what you will feel is YOU, without all the rest, without all of the deviations from what is your peace and relaxation, release from the energy consuming things.

    As you work you may start to get a sense of all of the things being in harmony, in connection to one another, and, they are, so to feel it, will help you feel whole, you are always whole, but so many things lead a person t feeling as a fragmented person, illness does that too.

    Getting to you shoulders, another powerful part, where lots of stress is, you can move gently there and slowly, and in unison roll your shoulders for however many times that feels nice, your neck will then be dying for a go, and you will feel powerful and in control of your feelings, by getting a hold as much as possible on your body.

    The face, well there we have our most sensitive elements, and they are all combined, sight, hearing, taste, smell, and the other one touch, well that's all over, maybe touch is slightly superior then as all of what this is about is touch, getting in touch. These senses are a thing to take time with, you can discover wht feels nice for you, like opening and closing your eyes, moving your face, everything that you discover moves, and that works for you, you can name it, as you say

    • I relax my chest

    • I relax my neck

    • shoulders

    • shoulder blades

    • face

    • ears

    • nose

    • jaw

    • forehead

    When you've had everything you can think of and have reached your crown, you can try to let everything flow out there and listen to what you feel. You may take a deep breath, one that is maybe like a big sigh of relief.

    If you get the hang of it, and like it and feel that you felt some benefit and want to reinforce it you can go through it again, at the end you can 'just do nothing' but 'just be'.

    There's no harm in just being, with no expectations, no nothing, just relax.

    I wouldn't bother sharing this, but as it helped me a lot, and still does, I thought maybe someone else will benefit from it.

    This is a powerful technique that can allow a person to master control, like when the body is demanding so much of itself, one can revert to the practiced technique and calm the system, which is good for the heart, which is good for the lungs.

  • good descriptions of meditating -

    and another tip that helps me get started and banish all those thoughts is to concentrate on feeling cool air going into nose and warm air going out from nose - I also picture clean air coming in and nasties going out as I breathe.

    AND ..... apparently meditation is even better than exercise for us ...

    see copdnewsoftheday.com/?p=702...

  • Hi Twiggywiggy,

    I did submit a reply but it must have got lost in transit...

    It basically said I am a practicing pagan and did for many years meditate although life being what it is with endless problems one after another leading to this shook me and over time I started to doubt my long standing beliefs...

    i now have time on my hands will definately benefit from meditation as way of controlling the anxiety and stress...

    If honest I am having trouble getting my head around the fact my lungs are shot at 40 pfftt

    Thank you :-)

  • Hi Ali, I submitted a reply but there were probs with website earlier. Wont say much as you have already been given lots of excellent advice / support. All i will say is try and stay positive and know that your quality of life will improve with time. T/C Marilyn xx

  • AWW LOVEY AND YOU TO Marilyn, Have a great weekend :-)

    HOPE YOU ALL STAY AS WELL AS YOU CAN !!

    Will get there just been a mad few weeks and months xxxxx

  • Hello Ali :) and welcome to the group.

    I've just finished reading all the messages here and it's good to see your last one where you seem a little more cheerful than the first. Practically everyone here started off at the same point, and the same feelings as you've had. We are living proof that this disease DOESN'T mean we have to curl up and die. I'm 13 years down the line now, and haven't felt as good as I do right now for a long time.

    Take up the meditation again, relaxing is a huge part of controlling this condition and it will be of great benefit to you.

    In the meantime, keep on keeping on ...... and I hope all goes well for you :)

  • Hi and Good morning...

    Yep I am bit more cheerful than was yesterday,

    chest has had it this morning but I am not as slow as was and had a bit of sleep..

    I think the pneumonia hasn't gone, am back at the docs tomorrow and now have rescue meds at home I can start once I notice getting really bad again can start them all...So don't end up back in hospital as each week since gettting out the respiratory nurse has wanted me to go back in as getting bad.. easier said than done with 2 kids alone..Can't just dop everything so asked for 48 hrs and rescue meds to give me time to improve save me having to keep going back in....I like most of us am a mum before anything else..

    :-) Will get there I know it will take time just glad having a better day than yesterday as just wanted to cry all day ppft

    How are you all managing are you able to work etc? xx

  • see the bits above about meditation that you can do, however little energy you have... and ask doc for a sputum test to check you are getting the right antibiotics. hope you feel much better really soon. x

  • I presume you've had a CT scan to eliminate other lung conditions eg bronchiectasis/cf? With your history of llifelong chest problems such things should be eliminated. I'm a bit concerned that you're getting so many infections. What happened whilst you were in hospital, did they have you on IV antibiotics? What bug did the sputum cultures show?

    Btw are you an ex-smoker? I don't ask this judgmentally, it's just that I suspect sometimes people get diagnosed with copd wrongly sometimes, because of their smoking history, ie fobbed off as you say.

    Obviously you can't carrry on like this. If you're not already at one, I think you should ask for referral to a specialist lung unit, for further investigation and a second opinion. Glenfield Hospital in Leicester has a great reputation and I believe would be the nearest to you. You are entitled to ask to be referred there, esp if your existing consultant has been unable to stablise you.

    FF x

  • hI ff,

    I am still waiting for the ct scan appoint they said have to be out of crisis before doing tests etc and they haven't told me the results of sputum but was on iv steroids and antibiotics as well as pills and drips of megesium although don't know why they gave me that forgot to ask tbh..

    They just said had pneumonia through virul infections un treated by gp as each time went back to docs for 3 months prior to collapsing the last time the docs just gave me inhalers sent me away.. I repeatedly told them they weren't working and got worse and worse they said I had had to many antibiotics and couldn't have any more..

    I am now waiting for scans and a heart specialist as all this has kicked of a long standing problem with tachycardia/arythmia etc and they have said this is putting to much pressure on my heart and the meds not helping as pushing heart rate up which is high already.. but since coming out of hospital I have only seen my own docs down the road and nurses at home...Have not been back to the hospital for follow ups as they said they can't do anything while excaserbated so it is all a waiting game at min... :-/

    x

  • Yes once you have become more stable you will feel better. Its such an up and down roller coaster. My hubby has it and now stable thanks to all the help from the Hospitals, Specialist are great. A lot of waiting around and xrays and tests! They will help you. Money worries don't help. I hope you are feeling better and enjoying some of the sunshine. Not a quick fix answer but I hope its cheered you up. Bernie and I go to his appointments together- I think you need another person with you as its easy to forget what they have said :) in one ear and out the other!!

    all best xx

  • I am seing someone ts more on and off than anything, but he lives nearly 40 miles away only really see him every 2 - 3 weeks due to his work etc he has said will try to come to some of the hospital appointments with me if not i'm sure my twin will.. Went to the docs yesterday to be told they are concerned over my heart after receiving a letter from the hospital not sure what thats about as didn't get alot of sense from the nurse appart from the hospital want me in quite quick for more tests and I will get a letter in the post.. So yet more uncertainty to add to a long list am getting fed up with it all as currently don't know whether am coming or going... :-)

    Not great doing waiting as have the patience of a lettuce haha

    Glad your hubby is now stable!!! and iv'e not been out really much as the antibiotics I'm on says avoid sunlight :-/ wierd!

    xx

  • I'm a twin Ali & she always comes with me to hosp appts, she knows me so well and is quite involved with my health care, so it's really helpful. She remembers all the stuff I forget! Btw you can still go out whilst taking those antibiotics, just take care, cover up as much as is reasonable, and use factor 30+ on any exposed bits. That works for me.

    Your gp sounds dreadful if you don't mind me saying so. There's no such thing as "too many" antibiotics if you've still got a chest infection, and it appears he failed to realise you had pneumonia, which is unforgiveable. He should have been doing his job and treating you, not sending you away with inhalers. When you feel a bit better, try and find a gp who actually cares about you and whom you trust to do his job properly.

    I hope you hear soon from the hospital, tho I'm surprised they're relying on snail mail. What's wrong with phoning your mobile when a bed is available?

    Try and find out all you can Ali. Write your questions down and make sure everything gets covered. You probably feel really down and vulnerable but remember that knowledge is power.

    love, FF x

  • Aww Are you Identicle? We arn't although everyone always say they can tell we are twins..

    I have hardly ever gone to docs and always joke and say have to be dying to go as they are dire if honest! and usually find alternative treatments where possible.. Since this all started back in March I have seen I have seen 7 differnet docs at the surgery who all decided I had asthma even though the inhalers were not actually working at all they still were adament it was just asthma. They kept giving me stronger ventolin and becotide inhalers an sending me packing.. I kept telling them it wasn't asthma (although now found out was as well as everything else ) I knew I needed antiobiotics they refused as had 3 courses back to back with steroids.. Once they ended within a few days bang back to square one..pft been a nightmare few months had hassle from my boss demanding I worked ill I was running around like an idiot and didn't know my pb on on the floor and driving was part of my job and was having dizzy spells was collapsing all the time having 2 hrs sleep a night if lucky constantly vomiting for 4 months.. One time I passed out at work, causing a fall as was climbing smashing my neck and back arm and thigh had to drive to hospital they think that was bp although the tachycardia was really bad then, Don't think I have never been as poorly in my life..

    This past few days feeling so much better have a bit more energy and am sleeping better so thats brill.. Lets hope it stays this way :-) xx

  • Oh thank goodness you're feeling better, but you still need to get all this investigated, find out exactly why it's happened and make sure it doesn't get worse again. You need a proper diagnosis and a treatment plan.

    I have bronchiectasis and take two types of antibiotics all the time, so you can see that what your gp is telling you is absolute rubbish. Honestly pet, ask around for a good gp and swap, if you have health problems it's essential you have a good one. I have 3 different lung conditions but my gp and consultant between them keep me really well, so well in fact I hardly ever need to see the gp!

    My sis & I aren't identical either, but like you two, people often think we are. We couldn't be closer, tho we have very different personalities.

    FF x

  • Just finally got an appointment to see a consultant and was miffed as it isn't until Nov 5th...

    Is that common waiting 4 months to see a consultant??? xx

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