My day starts with lots of coughing which in turns means I need to do a breathing treatment and vest session ASAP to get as much junk out as I can and to get my lungs to calm down. Usually I’m coughing quite a bit throughout the night as well. I always try to “cough it out” to avoid getting up to do a treatment, but that doesn’t always work. I haven’t had uninterrupted sleep in so long. I can’t remember when the last time was. I have just learned to sleep in spurts. If you total the actual amount of time I am asleep at night it would be between 4-6 hours most of the time, between the coughing, possible breathing treatment to calm the coughing, bathroom breaks and tossing and turning.
This week I have been on drop off duty for the teenager for his first block class (Construction Core) at a local lumber yard at 7:30am. Depending on what I have going on for the day, I may or may not go back to bed when I get home. This week I have had things going on so I haven’t been able to go back to bed except for one day. If I’m able and feel like I need it, I go back to bed to get as much more sleep as I possibly can.
Sleep and resting is a VERY important part of taking care of myself (my treatment/care plan…if you will). No, I’m not just being lazy like some people may think. I’m probably the hardest on myself about feeling bad for being ‘lazy.’ I dislike when I need to rest/sleep so much because I feel like I miss out on so much and slack on the things that need to be done around the house and errands that need to be run.
I am feeling better than I was when I got out of the hospital but with that said, I still don’t feel all the way better. I’ll explain…. I have days where I feel pretty good and somewhat human. On those days, I do as much as I can tolerate and get done in that day. Sometimes I get 1-3 good days in a row which I know means the crash is coming and I will need to sleep to recover from my good days.
For instance, this has been my week: Monday, I dropped the teenager off at his class and then dropped my car (Hank) off to get detailed. Hank deserved a really good cleaning now that he is paid off!!! Yay!! I was able to hang out with a friend for a bit as well. Tuesday, I was able to come back and sleep for a little bit after dropping the teenager off. I had lunch with the hubs after my morning nap. Then ran errands that afternoon to include taking Squiggy (one of our furry kids we adopted 5.5 years ago) to the vet for blood work and by a friends house so Squig could have a little playdate without his brother Otis (the other furry kid we adopted 4.5 years ago) there. haha. Wednesday, I had to drop Squiggy off at the vet for a dental exam. He ended up needing 5 teeth extracted. Poor guy. I had an appointment with my primary doc about my lingering rib pain. Thursday, I had a girls day with my good friend where we attempted to watch a movie but as usual we ended up talking too much and ran out of time to finish it. Also Thursday morning I had a gal bring me a donated wheelchair. (explanation below) I was in bed yesterday afternoon from 4-6 and then back to bed at 8ish. Today, I dropped the teenager off then did a treatment and went back to bed until about 12:30pm then up for another treatment and back to bed around 3pm and up again around 5pm. It’s the day of recovery. I’m not a fan of these recovery days. At least it was rainy today so I don’t feel like I missed a nice weather day.
Let me explain the wheelchair thing. One day my husband brought up getting a wheelchair for outings where it would be a lot of walking and would possibly be too much for me. If that would be the only thing keeping me from going then he would want us to have a wheelchair at the ready when needed. He asked me if I would be ok with him pushing me in one, emotionally/mentally? I said well, “if it means I can still go places then I will suck it up and let you push me. We just may need to bedazzle it up…hahaha.” I asked my social worker where to even start on looking for one, like is it a thing where they write a prescription and I get one from a DME (Durable Medical Equipment) company or what. She gave me the information for Compass, a CF Foundation program that has been set up to help people get things they need. I made the phone call and they said they would get back to me after they did some research. I kind of forgot about it considering I’m not in dire need of the wheelchair yet. They called me two days ago and said they have a possible wheelchair and gave me a phone number of a person to call. I made that phone call and she was here the next day dropping off my new set of wheels. A local church has this program where people donate medical equipment to them and they in turn donate them to those in need. She was very sweet and of course I asked for a hug. She said, “use it for as long as you need it. You can donate it back to us or donate it to another person in need.” It was a blessing for sure and didn’t cost us anything.
Speaking of medical equipment, I have ordered a ‘double battery’ for my POC (portable oxygen concentrator) so that I can have more time out and about without having to worry about a drained battery. The single battery lasts between 4 and 4 and a half hours so the double battery should last 8-9 hours which will be great for long days of appointments or activities when I’m no able to plug in to charge. I also got a backpack for the whole unit to make it easier to carry and it has a little bit of storage. Even if it is enough for my pulse-ox and hand sanitizer that would make me happy because the bag it is in now has NO storage. My insurance didn’t cover the double battery or the backpack and they were NOT cheap. Thanks to the Shannonigans lung fund I was able to purchase these 2 items to help my everyday life. Thank you so much for your donations, love and support!
I’ll end with this random thought…. I have heard that some people have said over the years that I shouldn’t be doing so much because I’m sick. I shouldn’t travel because I’m sick. I shouldn’t “act like life is normal” because I’m sick. I need to be focusing on my health. I spend 24 hours a day focusing on my health. CF doesn’t take breaks therefore I am stuck with it all the time. However if there is a moment where I am feeling decent enough to do something “normal” people do then I will seize the moment because I never know when I’ll have another one. I’ll just say this…I’m not dead yet, even though I may have one foot in the grave (“so to speak”), but please don’t push me in the grave, I’m not dead yet. I still have a life to live and I am trying my best to live it to the fullest, even if it is at a slower pace. There are still a lot of things on my bucket list that I want to accomplish. Some of the things may have to wait until after I get new lungs but I will do my best to live my life with no regrets!
Final thing….(sorry this ended up being long): New Shannonigans Gear will be coming your way very soon! I am super excited about the design. I will be updating when I have the online store info. There will be lots to choose from.
(A few pictures for your viewing pleasure that are relevant to this blog post.)
Don’t forget you can donate to the Shannonigan Lung Fund 2 ways:
- You may use my GoFundMe page by going to gofund.me/shannonigans OR
- You may also donate through my PayPal account at PayPal.me/shannonigans (clicking any of the blue highlighted names or links will take you there)
Thank you so much!!
Until next time…