Day to day is such a difficult way to live your life. We have been married for 5 weeks today and we have 3 of us in this marriage. Myself, my husband and his emphysema. His diagnosis from 3 months ago is severe and his only option for treatment is pain management. He has giant Bulla on his left lung and a smaller on his right. He has been suffering from Pneumothorax which are too risky to aspirate. His Consultant wont consider surgery as the risks are too high. We think parts of the lung have been rupturing and his spit is usually fresh blood. He suffers from terrible fatigue and has to spend large potions of the day in bed.
Today he has a lump under his jawline most probably a swollen lymph node which could be a sign of infection. He spoke to his GP who suggested he keep an eye on it over the weekend and get in touch with them next week if it is still there. He is just so fed up and has gone to the shop just to get out of the house. Of course this means when he returns he will be so exhausted he will end up in bed.
I however have to paint my smile on my face and go to work soon leaving him to cope alone. Our teenage son will be here but he is a typical teenager and not much help around the house. Of course he is dealing with his dad's illness as best he can. My work can be stressful and I hate being away from home. I suffer from Depression and Anxiety which makes it a constant battle to remain strong. I am not feeling particularly strong today but maybe tomorrow will be better.
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Redfraggle
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Dear Redfraggle, so sorry you are having a bad day and too for your husbands difficulties. I am hoping that each day things become easier for you both and at the end of this day things will begin to look brighter for you.
Wishing you both an easier, happy weekend, sharing some good times and making good memories.
As someone who suffers from chronic COPD I can relate to the exhaustion etc and I'm also well aware that if i'm having a bad day it's worrying for those around me that care and are concerned. I almost feel from your comments that you're feeling bad about the time you take away from the home, but you mustn't because whether it be a job, shopping trip, coffee with friends or the odd night out, you have to make sure that you keep some time for yourself as well as caring for your partner. It's rare that carers of loved ones get to be looked after so above all else take care of you so that when you do have to be there you won't feel so pressured. There is help out there, you could for instance ask for a sit and support worker to keep your partner company at times you're working , something like this may help you to not feel so anxious when you're not able to be at home.
I read your post and could cry - for you and me!! It is so hard to be a carer for a COPD sufferer. We too have teenage children and it is heartbreaking watching the children having to deal with the illness as well. LIke you some days are OK - I can paint the smile on and and I can stay positive but other days are very difficult. My husband has bad nights sometimes when he is on the neb and pacing around, it makes me so physically tired never mind emotionally. Have you thought about joining a breath easy group for support. You need time for yourself and just not to have to think about illness. I find it really difficult to make that time - but if you can - do it, even if its a trip to a local coffee shop. Take good care and look after yourself. TAD xx
Dear Redfraggle
That sounds awful, the only thing I though upon reading your post was that you need to ask for a second opinion.
Everyone has the absolute right, without being looked down upon or ill-treated in any way, for instance, by the current doctor, to get a second opinion, it is thought to be a matter of common sense to do so.
I say all of this because the coughing blood bit sounds just wrong, he needs help with that, I think that cannot just be left that way!
You can look online for addresses perhaps and ask by phone if it is possible to come along in order to get a second opinion. You can hear either a YES or a NO.
So there's no harm in trying and looking into it that way, who knows, a second connection (doctor) may have an entirely different method of care procedure in place, know different channels for dealing with it.
Having read about yours and your husbands problems and the replies you have received I just want to encourage you to keep in touch with everone on this site, you will not feel quite so alone because everyone can empathise with you. We will support and help you as much as we can so keep in touch and keep your chin up.
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