Copd is an umbrella of various respiratory ailments because one causes and/or exacerbates another one. Most of us have emphysema and chronic bronchitis. I have several others as well. But that's not the point of this blog - I just want you to know that no 2 of us has the same group of ailments, symptoms, and challenges as we face each day. This is my story.
I sleep in a recliner because I can no longer sleep flat - it causes my chronic cough to become excessive so for me it's a recliner. I use oxygen 24/7 and at the present time am using big tanks that I fill on my home oxygen concentrator. Each tank holds 5-6 hours of oxygen but takes 5-6 hours to fill as well. So to get through a full day of activity I need 2-3 tanks.
All night long I have half an eye open to catch the sound change of a tank reaching full and then I quickly change out the full for an empty so I can have oxygen for tomorrow. Not conducive to a good night's sleep!
Now when you fill a tank absolutely everything has to be just right or you will find that you spent hours thinking you were filling a tank just to find out it is empty! So luckily today I actually got my tanks filled for a full day and now I begin the process of preparing for tomorrow. But that's only half the trick!
The despenser called a regulator is run on batteries and it puffs out just enough oxygen when I breathe in only - it's called pulse oxygen and is used to make the tanks last longer. They break down with frequency because they are repaired and repaired and recycled till they can't be any more. Nobody gets a new one! 2 dilemmas: will my regulator work today and do I have replacement batteries if the batteries drain out? And here is a third one - what if I lose the washer that seals the air going from the oxygen tank to the regulator? Then I'm in big crisis mode!
Today I was lucky all of that went well! Hooray!
Even when I have the equipment working well there's still the possibility that one minute I'm fine and the next minute my oxygen saturation level which should never be below 90 has just fallen to 74 for no known reason. Then it's off to the ER and I can't drive myself so I have to either get a ride or get a taxi to take me. This happens 1-2 times every Month. So I get to the hospital and they do tests and chest Xrays and send me home with prednisone(steroids) and antibiotics.
There are 2 concerns here. Steroids don't let you sleep for days and they literally turn your bones to dust. Antibiotics when used too much can lead to MRSA - not something I want!
Then there are the nodules on my lungs. They have to be tested regularly to make sure I haven't yet got lung cancer. People with COPD are twice as likely to develop lung cancer. so yes, I get my CT Scans to watch the nodules and be sure they are not growing.
I am blessed! I have a full time job where diversity and inclusion are of prime value! I use my oxygen at work and if I get sick - I leave with the company's support. I work in a call center and have a status of highly effective. Considering that 2 years ago I couldn't tell you what a modem is - I feel very fortunate!
But I have up to now avoided my feelings. First, when I was stage II I didn't have any of these complications and thought - this is a breeze! Then I got sick with pneumonia and lost 15% of my lung capacity in one single day - it never comes back! That's when I jumped into Stage III.
It's challenging to label myself as disabled - handicapped. But I have to admit for the first time in my life that yes, that's me. Acceptance is fleeting. I grieve again and again for the losses I have endured and once more let go of the "I can'ts"
It's a hit to my sense of Self and Self worth. It makes me feel "weak."
Then there is the battle of depression and anxiety that has plagued me my entire life. These aren't just bluesy days you can walk off or affirmation yourself out of - they are deep and wide and engulf me completely. Quitting smoking has helped but having COPD has made them more - bigger, often, blacker.
Nothing is more important to me than spending time with my Family - Alex, his wife Kari ( the vet) and Miss Penny and Miss Tahlia. But if they have a cold or the flu I can't be near them. It's just fact. When I do get with them I can't be their abuelo as much as I like because I tire easily and can't keep up with a 3 year old and 18 month old for long! Penny knows - when she sees me she says "Bubbles" and I get a cup of water and put my tubing in the water and let the oxygen blow bubbles for her. She giggles and asks me again and again.
If I stay overnight I have to take my concentrator and my CPAP with me. It's a lot of luggage - not to mention the 15 meds I take a day regularly plus my rescue inhaler and my Clonazepam in case I get panic attacks.
Then there's the weather. Winter has been brutally cold and windy this year. It often takes my breath away and I can't stop coughing. I cough so hard that I have broken my ribs before. That's because my lungs are hyperinflated (bigger than normal) from emphysema and press against my rib cage. This is called barrel chest.
So I can get very boring. If it sounds tedious that's because it is! - I'll try to stick to feelings: anger, frustration, self-blame, self deprecation, sadness, anxiety and depression. Then I pump myself up with affirmations, gratitude lists, mindfulness meditation, hope, love, peace ....and it all comes crashing down again like a house of cards.
This is what I want you to avoid! This vicious cycle of building and destroying again and again. The phoenix rising from the ashes on ground hog's day!
LLAP Smoke FREE!