Yesterday, I had promised to spend time with mum and take her out, which meant getting up in the morning. We had a good day. Went to a shop with a garden centre type thing and craft centre, so we were able to split up and both get something out of it. We then had a picnic in the car overlooking a lake.
I got a lovley bed spread, that I am dying to put in my room, but I wont until I get to tidy it properly.
Last night, after tea, I sat on my bed with my laptop as I normally do. Now normally, I browse around and catch up with people till about 1 am ish. But not last night. At 7, I found myself falling asleep. I meant to sort out my tablets and run my neb an such, but literally had no energy. I must have fallen asleep as my dad came up for a shower at about 9ish and shouted to ask if i needed the bathroom. I literally crawled to the bathroom, tipped my meds down my throat, turned on my humidifier and collapsed back to sleep, not fully waking till way after 11:30 this morning.
I was literally dead to the world.
Unfortunly, I still feel exhausted and my lungs are shouting at me for sitting still too long, Every breathe is makes my lungs burn and I know I am avoiding using the bottom half. My shoulders ache and ribs sting.
I am doing all I can Lots of nebs, antibiotics, lots of fluids. I have spent the last hour on my bed, nebs on full, humdifier on, fan on. It is exhausting. I want to stay in this position for the rest of the week. Not have to move. But alas, there are things to be done. And I have to be social tonight. So instead, I shall take the painkillers and hope that they wont sedate me to much. And hope that the antibiotics kick in soon.
And that, they can hurry up and change my diagnosis from suspected, to confirmed. Not that I want to have any type of lung issues confirmed, but perhaps, once they are, we can begin a treatment plan. Get rid of infection every other week and stupid breathing crap. I am booked in for a high contrast CT next week, so perhaps that may help things.
Maybe I should just quit complaining at this point. I mean, I moaned last week that I had a mans deep voice, but this week it is little more than a squeak and very hard work to get out.
And apart from that, I just need the ability to explain things to mum. That yes, there are things that need doing, but just like when she is on her bad week and is unable to do them, I to am at that point and unable to do half of what I need to. Its so frustrating. gah.
You say that you're doing everything you're supposed to to help yourself in one line, but in the next you say that you were too tired to do your nebuliser and breathing treatments properly, so instead you just whacked your meds down and slammed on the humidifier. Which is it? Are you careful, or are you slapdash?
ReplyDeleteit is not enough to do the treatments only when you feel like it, or only when your breathing is so bad that you have no choice; prevention is better than cure, and the treatment will be more effective if you are not already bunged up.
i wish you luck with the CT and I shall pray that you don't have bronchiectasis, as this inevitably means an eventual lung transplant, which you need like a hole in the head.
Look after your body, you only get one. Do the treatments properly and accept that this is the only way you will stay well. Sometimes it seems as if you positively revel in the prospect of yet another serious illness. I know that being ill makes you feel like the centre of the world, but there are better ways to get attention. Like recovery; you could become a stand up example of someone who overcomes a major hurdle and demonstrates a great example of life after illness. Illness is something that happened to you. Don't get lost in the whole thing, you are worth more than that.
Im careful when I can be, but that is not always posible and it is pointless running a treatment if you do not have the ability to stay awake for it. I do what I can to stay well, but I am only human and somtimes unable to do it.
ReplyDeletebronchiectasis does not always lead to transplant, but a treatment plan that can prevent further decline and management of symptoms.
Maybe to those who just read here, it seems like being ill is my world. But this is a blog about my illness and the struggles I have with it. Its not a blog about my life. Illness is something that goes hand in hand with my life, but my life does go on and I do plenty away from what is in this blog.
For anyone wondering about my blog purpose, I would recommend reading my first post.