I have no idea who goes through this, but I find myself fighting every night to just get to sleep! My problem stems from me getting more congested and a tighter chest late at night. Whenever I am getting ready to go to bed, it never fails that my lungs do not want to cooperate with me.
My nighttime routine
I must go through an entire routine to maybe get some rest at 3 or 4 AM. I also must sleep in a kind of upright position, so I have several pillows holding me up. I go through my medication regimen and I also do my breathing exercises to help loosen any stuck mucus. It just always seems that I do struggle more at night than I would anytime during the day. I am always tired during the day, but I always do my best to carry on as normally as possible.
At this point, I have grown used to it and if I do get to sleep at 11 PM or even 1 AM, I find that to be a successful day. I would love to sleep regularly but there are moments where that is not possible and those moments grow more frequent.
It is hard to write about it and not feel bad about what I go through, but I know I am not the only person going through this. At times I tend to just wander around my house and find something to do; I do not like to stay still if I am awake. I will fill the time and clean something or just find another thing to do. It is hard to find something to organize when my house is clean, so I will organize things in another way just because.
Once I try to lay down and rest, my lungs do not let me. I just feel so congested and I start wheezing and crackling, so it is hard to get a good night’s rest. This is something I have been dealing with for years.
I can cough up a lot of mucus and the tightness lingers for a long time. I find my mucus to be thick; I use my mucus thinning medication at the times I am supposed to take them, but it does not always help and I still struggle with it. I do not struggle with coughing as much anymore because the mucus thinning medication has helped so much, but to say that my problem has gone away would be a lie.
Mucus has always been my problem when it comes to my CF. Thick mucus is something I feel my body can make faster than I can bring it out.
I think each of us fights our own difficulties with this disease and we deal with it as best we can every day. CF is something I can never rid myself of, but I can manage it and I do my best to do that. I do want to sleep, and I do my best to get at least 7 hours of sleep a day but that is dependent on how much mucus I am struggling with. Either way, I fight my best!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?