Is this the quiet before the storm - Lung Conditions C...

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Is this the quiet before the storm

12 years ago•3 Replies

By all accounts looking at the blogs and speaking to my doctors and the blf help line i am much healthier than i have any right to be, strange form of emphysema, normal fev 1&2 40% gas transfer loss of 60% lung surface area also i have sleep apnea and a machine to sleep with at night (feel like darth vader ) work part time 5 hours a day in aerospace industry as I am the sole carer for my disabled wife. tired, so very tired ,but otherwise ok how long can this last, worried that I will run myself down and get really ill, don't know what to do any more, surviving not living doing ok for moment but for how long ? when i do start to have real problems my wife wont be able to cope she cannot look after herself , my employer has given me a written warning for sickness and there is no way i will ever get better maybe i should just let them sack me and attend to looking after my wife with the time i have left by all accounts i will be too ill to do much as time goes by Just how long can i expect to be this healthy?

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gaffers

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elian12 years ago

You sounds as though you are having real difficulties coping at the moment gaffers and that's a shame because there are so many services and organisations out there who can help make your life a little easier.

Try giving the BLF Helpline a call, that's as good as any place to start to change things. The number is Freephone as far as I'm aware.

I know what you mean about wearing the mask for the machine at night, as I have one that's similar but for a different purpose. Whereas yours is a CPAP machine, mine's a BiPAP because the carbond dioxide in my bloodstream is not expelled when I exhale and it builds up to a level which causes me to lose consciousness. The BiPAP machine has been my saviour. Have you had your CO2 levels checked by the GP or hospital ? If not then you might like to suggest it as this could be the cause of your chronic fatigue.

Don't suffer alone ...... asking for help is easy

12 years ago

Hi gaffers. I think working 5 hours a day and also looking after your wife is difficult with emphysema! No one can tell how long you can carry on doing this, you can only go by how you feel. I agree with elian about asking for help.

If you need to give up work you should be able to claim sickness benefit, housing benefit, council tax benefit etc. You might also be entitled to carers allowance for your wife.

And there is always DLA.

I hope it doesn’t come to this but you wont be left penniless. Auntymary xx

lillie0112 years ago

Hi Gaffers have you ever thought of telephoning the adult social services.....they are really good especially when you are a carer ........i had quite a lot of help from them and you will get respite too sounds as if you are on overdrive.i care for my husband and i have COPD and several other health problems and it does get to you even though my husband never complains .being a carer is very tiring although we do it because we care .but you have to realize that you are getting worn down and need some support

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