A newbie with a question

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I am only recently diagnosed, but since that time last year have been either low-grade 'unwell' or down right unwell-and-off-work.

If it's not something thing wrong with one part of my body, it's something else wrong elsewhere.

When this started, it never crossed my mind that it was all linked, but i am rather begining to wonder.

Is this possible?

 

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8 Replies

  • Posted

    Yes it's all linked. I have had it for 5 years now and it's not been a good ride for me but everyone's symptoms are slightly different. Main thing is keep an open mind and a upbeat attitude. How is your appetite? Any pains yet?

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  • Posted

    Pain only when coughing like a loon last autumn. 

    Now no coughing, so no pain.

    After diagnosis, cough (of any sort) has run to the hills!

    So useless for sputum retrieval to see if bugs growing.

    Recently weight dropped (not good) and gastric something or other going on.

    Being investigated.

    Appetite all over the place.

    Husband very confused!

    That's what gets to the doc

    The others don't get a look in so , i'll ask 'em here:

    * Does anyone else's ears go funny when they have infections in Other parts of their body?

    * Body temperature control all over the place, what's that about?

    * Making the shift from Ordinary Person living Ordinary Life, to now being Potentially Ill Person who doesn't like Other People sneezing and coughing all over me. What's all that about?

    *  Without going into details, i will have to explore other employment.

    Is that usual for people with brnxi?

    * Fatigue....oh....my....days....

     

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    • Posted

      My wife is the same she worries all the time. I cut everyone off, don't go out in public much......no social life left. But it could be Cancer so chin up you can still live a long life. Sputum samples are hopeless. You know your own body and when something has infected your lungs.

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  • Posted

    pennineG,

    Sounds like my experience in many ways. I have had  frequent infections in the last 15 months along with Zombiefied like fatigue. After talking with so many on our site here I am changing much of how I treat myself now and I am making progress towards being more like my old self, but still with the Big B.

    Best and welcome

    Russ  

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  • Posted

    Hi Pennine,

    I hope and think you will do better soon. Once you get more comfortable with the idea of having this disease and get a routine going, you will be much better off.

    It took me a few years to get used to this and I'm still learning, but what helped me a lot was taking control of the situation as much as I could.

    So I started with learning everything I could about strengthening my immune system through diet and exercise.

    Then I researched and experimented with many different sputum clearance methods, until I came up with a daily routine that works for me.

    Now I'm working on my mental health of accepting and living with this. I feel a lot more at ease and relaxed about my bronchiectasis, but it has taken me many years to get to that point and it's always a work in progress.

    Now that I totally accept that I have this, I feel so much more relaxed and I don't have to fight it anymore. It was useless to fight it anyways. This is part of my story and it's perfectly fine. 

    So acceptance and working on optimal physical and mental health have helped me so much.

    I hope you find your way and you can learn so much from all these wonderful people on this site who are going through the same as you are.

    Best,

    Ida

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  • Posted

    You absolutely have to take control of how you feel and how best to look after yourself. I've had bronchiectasis for 40 years and its only now i feel pretty much in control. I'm not saying it will take you that long, just don't expect the doctors to know how to treat you personally. Experiment. I do daily clearance with an Acapella, even if it's a good day and don't really need it. I also try to exercise and I'm now trying a "bee product" (can't use the name) which, so far, is proving very helpful. In fact, I'm going into my third week without having coughed which is something that hasn't happened for years. 

    So what I'm saying is, don't give in, beat it. It will never go away but you can certainly live with it.

    Good luck.

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  • Posted

    Hello Pennine

    I've not been my diagnosis long and I so agree with everyone, it's a journey to find what suits you and research and experimentation are the key.  Diet to boost the immune system, and Ida is so right about mental health.  Don't let this control you, you take control.This website is invaluable for asking questions, dipping in to past discussions, but at the end of the day everyone is different and has bronx to a varying degree, keep positive and you will find your husband will make this journey with you as mine did and still does.  

    Madeleine

    Madeleine

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