First Step

You may recall a few weeks ago I posted on here about how much I had begun to struggle both mentally and physically with my illness. From not being able to go on holiday because a flight test wasn't forthcoming and the loss of independence the impact of this had on me to a general feeling that my lung function had begun to deteriorate and that I was struggling to do anything for myself and I was worse than I was prior to diagnosis. I even emailed my consultant to see if I could bring my appointment forward (surprise surprise I have heard nothing from him or his secretary).

So I went to my GP 6 weeks ago to discuss my low mood. He was amazing. We chatted and I went home and told my family I wasn't feeling well - which was a huge step as I had been keeping it from them. I also called the mental health partnership and on Monday I go for my first counselling session. I don't know how it will go - my mood is a lot better. But this has been helped by another thing. 2 weeks ago I went back to my GP and explained I wasn't feel well and that there was something going on with my lungs that I couldn't explain. My SATS were 97% at rest. He listened to what I had to say and sent me off with 2 weeks of doxycycline - I am back swimming a kilometre and walking my wonderful little dog far further than I have managed in 3 months.

Long post, and apologies for that. But thanks to everyone who commented last time - I just wanted to update.

Marie x

17 Replies

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  • Hi Marie. I'm so glad you're feeling better. The fact that you're back walking your sweet little dog is very happy news indeed. This post spoke volumes to me because I too tend to hide my feeling unwell from my family. Sometimes even from my doctor. And worst of all I sometimes even pretend I'm okay to myself! I hate feeling vulnerable and the worry on the faces of my family is sometimes too much for me to bear. However, talking about it like you've done will help. Keeping it all to ourselves make us feel worse I think. So thank you so much for sharing. I needed that. And I'm so glad your feeling good.

    Sending you a big hug.

    Cas xxx

  • My big issue is that I don't want my family worried by me. I hate the thought that I am doing anything that will upset them. I could be extremely ill but as long as I could keep it from my family then I can cope. Not a good thing at all. Telling them that I thought my health had taken a turn for the worse was very difficult but once I had done that - a massive weight was lifted off my shoulders. So we will see how Monday goes!

    Marie x

  • My feelings exactly. I hate worrying them. Also I feel like if I say it , that is the admission of defeat which is totally silly. Let us know how Monday goes please.

    HUGS to a lovely, brave soul.

    Cas xx

  • Well done keep up the good work if only my sats were that high. Don't keep secrets from your family. My family know all about my many illnesses. Incase something happens Take care x

  • Hi Marie, thank you for your post and it does strike a chord with me too.

    My stock answer to the question ' how are you' is ' fine' ...when I am not really.

    My breathlessness was so bad I saw the nurse practioner who scrolled down his screen and read out the number of exacerbations I had suffered in the last year..not good.

    So he gave me a thorough check , a longer decreasing course of steroids and some doxy ...and a change of inhalers to try when the pred and doxy had done their work. He also made me a repeat appointment ...I am keeping my fingers crossed.

    I am so glad that you are getting help as well and have seen an improvement

    Best wishes

  • Thanks Knitter

    I haven't had many exacerbations over the last year or so. The azithromycin has been doing its job but I knew something was up. Luckily my last set of bloods showed there was inflammation so my GP picked up on this. it is so much easier to say 'fine' when asked how we are isn't it? if you start on a 'well actually I am not feeling too great' I think people switch off or think you are a moaning Minnie.

    I think my counselling on Monday will be about how I cope with my illness and prognosis - we will see.

    Marie x

  • Hi Marie, I'm so pleased you're feeling better and that you were able to go to your GP - and that he listened and helped you. I bet your little dog's pleased too!

    It's really difficult telling family about an illness because we want to protect them. Trouble is if we don't they can end up imagining that it's something worse, and worry more than they need to. Now you don't have that anxiety and they can support you when you need it.

    Have a happy day. Love, Sue x

  • Good Morning Marie, I am so glad that you have a good gp who listened to you and is helping you. My husband tried to keep his illness from all of us - I know when he is not great but he just gets a little more frustrated than usual, but no-one else does. It is so difficult to deal with. Lots of luck with the counselling it will be such a relief to talk to someone with no vested interest - other than you. Take good care, lots of love xxx

  • Hi Marie, I am pleased that things are looking up now that you are on the doxicycline. I have lived with bronchiectasis all of my life. Mostly I have led a normal life, aided by my lifestyle, physio and abs. However, when I have a bad exacerbation I can get terribly down, sometimes I must admit, suicidal. This lifts as soon as I am on top of the condition again. This depression is a feature of lung problems but unfortunately it is not talked about much and so many people think that it is only them who feel this way. I have been struggling with my health since I was also diagnosed with a heart condition and had an empyema 18 months ago. I am fighting to stay out of the black cloud and doing everything I can to use my docs to improve my health.

    On the subject of families. My parents and sister had a very sick child in the house. I never saw them upset. Everything that was done or said in our family revolved around living a normal life whilst doing all of the things required to deal with my condition. Importantly, most of it was down to me from an early age, supervised by them.

    My children grew up with a Mother who coughed, emptied her lungs every day, took antbiotics and occasionally had to take to her bed if there was a bad exacerbation. This was treated like anybody in the house having flu. They have never been distressed about it because it is part of my life and I just get on with it. Since my heart failed they have had to adapt to me following on much slower and find themselves having to wait whilst I trundle up behind them.

    I do believe that taking the emotional out of the situation and treating it as a matter of fact which simply has to be lived with helps evetybody. I am not sure how your family would feel if they discovered that you have been struggling and worrying and they have not known and there have not been able to help you when you need it.

    I do hope that this helps. I can empathise because I too struggle.

  • Glad to hear about the improvement in general both physically and mentally Marie. It is amazing what a good doctor, supportive family and the right meds can do.

    Hope you continue to walk your lovely little dog. You take care and never apologise for any long post. We all need to get things off our chest and are here for each other which is good to know.

    Lots of love, Carole xxxxx

  • Hi there Marie, what a great post to read,so uplifting to know that you're on the mend both physically and mentally. When I read it I thought to myself it was so much like my own situation and my reaction to my illness (COPD severe plus other bits 'n pieces). You seem to have been far stronger than I've been able. I really praise your determination and positive attitude- that and along with a the rights meds is changing your life. Well done you. Do keep us all up-to-date with your continuing progress.

  • Hi Marie glad to hear you are feeling better it helps to talk about things .Glad medication is helping to

    Jeaniexx

  • Good morning Marie,

    Set backs are part and parcel of life whether we like it or not. We have to overcome if we want to move on otherwise we can get into that horrible downward spiral. What a lovely understanding GP you have. Please don't keep things from your family - they won't thank you for it, and you can all move on together once you have come clean - they are there for you but will only worry because they know something is making you unhappy that you are keeping to yourself.

    Out walking your dog is good, and your swimming distance is excellent! Keep going :-)

    xx

  • Hi Marie lovely to hear good news keep it up Brian x

  • Hi Marie so pleased to hear your in a better place now, you keep going gal! Xx

  • So good to hear....people often overlook the physical complications depression can cause.Good on you for grabbing the bull by the horns.

  • Good to hear that you are feeling better. We all know that this illness, at it's worst, is very depressing. But, as you have experienced, we don't have to put up with feeling so bad that we can't function.

    We have all experienced a doctor that 'blows you off' as if to say "deal with it, that's just the way it is". That's the time to change doctors and find one that will listen to you.

    This website is a good resource and tips for dealing with bad days.

    Beth

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