When I was in London I picked up a bug. It started to go to my lungs, unsettling them greatly, and I ended up being given antibiotics by Dr H when I saw him in clinic on the Thursday before my party. I kept myself going for the party and had a great time, despite being below par. The antibiotics seemed to clear up any bacterial infection, but my lungs had already been set off on a downward slip and they're still going, but it's slow, very slow. I'm sick of it. I know that it's beyond the stage of doing a u-turn and getting better, but it's taking so long to slip that I'm getting very weary of it. I'm not too bad if I sit still, but as soon as I start to move I get very breathless and wheezy, and night times are rubbish.
I don't know what to do. There's not a lot I can do, which is why it's such a difficult place to be stuck. I'm not yet sick enough to be going to hospital, but I'm not very functional at home either. I've thought about seeing my GP, but there's little point as there's nothing they can do. I'm on all the medication they can give me 'in the community', and I'm nebbing as frequently as I can, and more.
I could email J on the ward and ask his advice ... but I know that he won't really be able to offer me anything until things go into crisis. It's so wrong that I have to wait for crisis before I can get help, but that's how things seem to be at the end of the medical treatment road. It's rubbish.
I'm tired of it now; tired of the slow decline. I just want it over, want it to snap so that I can (hopefully) fight through it, and then (hopefully) have a break from it for a few weeks. I'm tired. I need it over. I'm stuck.
6 comments:
Hi, Becky. I'm sorry things are getting tougher lung-wise. Having just spent a week in the hospital with a pulmonary embolism, ... yeah, let's just hope you can avoid going there again.
I know what you mean about having all the meds and equipment at home. I have finally realized that my Refractory Asthma (the term in the states) is the same as your Brittle Asthma. So, yes, I have my Small Volume nebulizer, my oxygen concentrator, and my CPAP, which I did get to use while I was in hospital.
Be good to yourself, honey. Don't try to overdo, and yes, if it gets worse, you be sure to head on to the ward and let your body get some rest as they monitor and care for you.
Hugs to you, my friend,
Tequila
Becky - so sorry to hear this. Make sure you look after yourself and get yourself to hospital at the first opportunity. Hugs and best wishes
Diana
Keep going, Becky. Thinking of you. x
Dont comment often but doesn't mean I dont follow your progress. Keep strong, a rough week weatherwise doesn't help.
I can really empathise with that slow decline, knowing you're getting worse and having to wait until things get really bad before being able to do anything :( Knowing that you will end up in hospital, and just keeping yourself going until you get to that point is such a horrible place to be.
Take care Becky, and try to look after yourself :)
Hugs!! Dawn x
Thank you all for your lovely, supportive comments. It's easy to start feeling sorry for myself at these times, but you all keep my spirits up by reminding me that I'm not alone. Thank you.
Becky
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