I have been having a hard time coming to grips with my illness and have struggled to believe I am actually ill considering I feel well. But today it just cam crashing down on me mentally and I have had a cry. I called the BLF helpline and a Nurse phoned me back and we had a long chat and whilst a cure cannot be offered, all the questions I had were in an honset and open manner and fully supportive of my fears.
I just wanted to say a big thank you BLF for providing this life line to me and others in the same position, I think it is fantastic what you do.
I am currently in discussions with my freinds on how we will raise money next year for BLF either by a marathon or ycling or some other activity I will keep you posted.
Thanks again, for being there in mine and others hours of need.
Kind Regards
Justin
Written by
jayspurs
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17 Replies
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Hi Justin, I just have to reply to you because I have a son called Justin, same age as you and newly married as well. I can fully understand your panic, horror, anger and fear but please believe me, it is not as bad as you think. With an FEV like yours it would be a long time before you had problems anyway but now that you've given up smoking and are keeping fit, you have every chance of leading the life you had planned. I have had bronchiectasis since age 22 and it's only become a serious problem for me in the last two years.
Forewarned is forearmed andcyou can do so much now to help yourself. Please don't be so despondent, life will go on as you had planned it. There will be glitches along the way but that is the way for almost everybody and at lest you know now how to face your particular demon and keep it under control.I wish you a long and happy life with your new wife. Take care of yourself !
Your words mean so much, I think the hardest thing I find to accept is that two years ago I had a CT scan that showed the all clear, to this one showing moderate Emphysema in the top and Moderate Brochieactasis in the bottom, it just does not add up. I feel well at the moment and will do everything to keep me there, I just worry so much about the future for me and my wife it scares me to death. But I know you are right I must keep plugging away and not give up
I think we've probably all felt that way at some time but whilst I'd rather have won the lottery than earned COPD, mostly it isn't as terrible as you fear. It has its moments that's for sure but they are few and far between - mostly it's not so bad. I work with disabled adults and, believe me, what they accept as their 'normal' is far removed from what most of us have to deal with that it keeps it in perspective for me! I've been on life support a few times yet here is am loud alive working full time living full time To grieve and regret is natural - to move on and accept is also natural. Keep smiling and enjoy everything as much as you want in the ways that you can. None of us can ask for more
Thank you kindly for taking the time the time to reply. I guess I am thinking of my life now as normal, going on holiday, going to football on saturdays with my friends and just generally being normal. I am terrified of when I will get so ill I wont be able to do these things at all. If someone said to me you are going to have 20 quality years of life then after its not going to be so great I could deal with that. I find the unknown terrifying, am I going to be a rapid decliner, will I get multiple infections and damage my lungs further. Ultimately I know all we can do is understand and accept the worst and hope for the best.
I am just being selfish and want the best for as long as possible
That's not selfish, that's normal! If it helps... I've had asthma since my twenties and at 30 things got worse. I carried on just as I always had but just had more chest infections etc than most people did. At 40 I was diagnosed with COPD though suspect id had it for some time. I carried on as normal. At 51 I contracted swine flu and barely survived it - the next couple of years I didn't carry on as normal but I actively worked to be as healthy as possible. I'm now 54 (55 in January) and whilst I have my difficulties i go to the gym, work full time, go out with friends, walk my dog and really live a full life! Enjoy today and let tomorrow take care of itself! You're gonna be fine!
Hi Justin, I suppose it had to really hit you at some point and well done for contacting BLF as they are wonderful and always supportive. I do wish you and your lovely wife a very happy and healthy Christmas and a great new year too. Take care and stay well. xxxx
OK, you have a condition but that is not who you are. Take the advice you have been given, stay away from poisons like cigarette smoke and get on with your life. All best wishes. xx
You are not a big girls blouse at all jayspurs. It is a shock to your system being diagnosed with 75% lung function at your age. But I do agree with the others as long as you look after yourself and lead as healthy a life as possible there is no reason why you can't stay in the 70's for many years. Any decline very rarely happens quickly unless you have another underlying condition. You are not going to go from mild to severe in a few years you know!
Oh 1 thing - have you been tested for alpha 1 deficiency? This is very rare and is usually genetic but should be done if you are diagnosed at such a young age.
You will probably live to a ripe old age and something else will probably get you before your lungs give out! x
Oh, dear! Just shows how the written word can be misinterpreted. I was in no way calling you names, Justin. My message was supposed to encourage you not to let this thing take over (I know that it can) but to continue to be whoever you are to the best of your ability and to enjoy your life. I do wish you well. xx
Hi Justin, lots of people find taking a low dose of an antidepressant (they are not addictive) very helpful to get over the initial shock/depression. Maybe have chat with your GP about your thoughts and low dose antidepressants. It may help you to feel more positive and get yourself on the track of "happiness and getting on with life" a bit faster. Best wishesxxx
Hi Justin, So pleased you have been able to find some support. It is such a shock and it was to me and my husband. Actually my husband tends to put his head in the sand - so it was more a shock to me!! I would be a liar if somedays I dont worry about the future but as my Gran says - "You could be run over by a bus"! Living by that premise I try my best to get on with it and life is pretty good! Over the years he has slowed down but he would have anyway - we all get older! He was actually diagnosed about the age of 50 (is 67 now) but he had been suffering with symptoms for a lot longer.
Get out there and enjoy your life! You have a great attitude especially about raising money for the BLF - the very best of luck. Take good care, lots of love TAD xxx
That's a lovely idea Justin. A lot of people can't afford to donate but many of us could afford a fiver. It's so easy to donate by text. If only half the members would donate a fiver regularly it would really help the BLF.
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