I remember someone asking me recently, how it was possible that I was able to post a video and update my status while I was on a ventilator struggling to breath? I really had to think carefully about how to answer that question.
Actually, I was responding to all the get well wishes from my Facebook friends. Still, I can see how it might seem a bit odd that someone in the thralls of a severe asthma exacerbation on a ventilator could think clearly enough or have the physical wherewithal to use their phone at a time like that. I guess I did it because number 1, being in a hospital Intensive Care Unit is pretty routine for me. And number 2, sometimes it gets really lonely there. Because Im a Respiratory Therapist, I suppose there’s also a bit of…Hey, look at me, Im on a ventilator and able to communicate. In any case, I was awake and totally alert in that clip, and to keep my mind centered and focused on something other than my breathing, posting on FB seemed like a good idea. It gave me an opportunity to share what I was going through with others. Or maybe after going through this a million times, Im finally going crazy.
Im rarely awake when I’m intubated and on a ventilator, but for some reason during this particular bout I was. From a clinical standpoint it could have something to do with the ICU doctors wanting me to wean off the ventilator more slowly, as I have a history of having to be re-intubated if taken off the vent too soon. Letting me wake up fully while still on the ventilator for a few extra hours, probably helped prevent that from happening. Once the tube came out my breathing continued to improve and didnt backslide. Even so, it’s probably unusual for someone to video themselves during an asthma exacerbation, especially while still on a ventilator.
Living for decades with a chronic health condition that literally takes your breath away, is undoubtedly going to take a toll on ones mental health. Add to that, frequent ICU stays, dozens of intubations resulting in damage to my vocal cords, the trauma of waking up while still paralyzed, being chronically fatigued and sleep derived, and suffering the side effects of steroids and now the Covid pandemic… its no wonder my head is screwed up. Over the past year, Ive found myself to be more anxious and on edge than ever before. I get very irritable for the slightest thing and have become more withdrawn. Ive also been experiencing more ICU induced delirium. Up until about 3 years ago, it wasn’t an issue. Now it happens every time Im in the Intensive Care Unit. It’s just a matter of how delusional I’ll get it and how long it will last.
During this last hospitalization I thought I had won the lottery, when on day 5, after coming off the ventilator, I seemed to be totally with it. Then on day 6, I drifted into a state of delirium again, thinking that there was a conspiracy by the doctors to keep me in the hospital when they had promised me I could go home. The weird thing is, you dont know your mind is playing tricks on you when this is happening. Thankfully, this bout only lasted one day. When I woke up on day 7, everything came into focus again and I was back to my “normal” self.
Then there’s the COVID pandemic. In the last few months, words like “Ventilator” and “ICU” have become the new buzz words in this global crisis. Seems like every time you turn on the TV , it’s ventilator this and ventilator that, and not usually in a good way. The terms are often synonymous for bad outcomes and death when it comes to this disease. On the other hand, ventilators and ICUs are what has kept this asthmatic alive for so many years. Anyone who knows me, knows Im not exactly a huge fan of hospitals, but pre -COVID, if I needed that type of care Id bite the bullet and go in. Now, just the thought of having to go into a hospital causes me major anxiety, sometimes to the point where I delay seeking care at all, which just makes things worse. Like anyone else, Im not only worried about overwhelming the healthcare system, but also possibly catching the virus in the hospital. The thought goes through my mind, is my asthma so bad at that Im willing to risk catching the virus if I go in for treatment, or will I die from my asthma if I dont? Most of that is just paranoia, but the thought of catching COVID is a powerful deterrent.
But what happens when you leave the hospital. What kind of lasting impact might do the constant barrage of flash backs from hospitalizations and near death experiences have on your daily life? I guess everyone handles stress and trauma differently, but it certainly must have an impact on one’s mental wellbeing. On the outside I may seem happy and well adjusted for what I’ve through, but am I? For the past year or so, I find myself to be anxious and constantly on edge, sometimes for no apparent reason. I get very irritable over the smallest annoyances. Sudden or loud noises for example, make me very jumpy and make my heart race. I also seem to be more aware of my breathing pattern. If I notice that it’s altered in anyway or that my shortness of breath is getting worse, I tend to develop a pattern of anxiety, which then fuels my breathlessness even more…sometimes to the point of panicking. I find myself becoming more withdrawn, avoiding people and situations that might trigger those unpleasant feelings. Again, this is all new to me, or at least my awareness that something is wrong is new to me. Perhaps Ive been this way for a while, but was able to handle it OK till now. Apparently, Im not alone, there’s actually a name for this phenomena.
So how do I cope with all this? Honestly Im not sure, I just to do. Not cause I want to or because I have to, but because I really no other choice. Chronic illness is a part of my life and I just deal with it as it happens. Because Ive been going through this most of my life Im probably a little more used to it than most. I also have lots of distractions to occupy my time and a pretty good support network. Thank goodness I still have my walking to look forward to. Just getting out there in the fresh air, albeit sometimes with a facemask, and challenging myself physically, has a positive effect on my mental health. It diverts my attention and make me feel more grounded. Im not at the point right now where I feel comfortable sharing my feelings with a mental health counselor or taking long term medications, though I may in the future. Ive found that some of the mindfulness-based therapy phone apps are just as helpful in dealing with the anxiety component. Music definitely helps as well. The most important thing to me, is feeling as normal as possible in between the bad flare ups, so that I can enjoy at least parts of my life without constantly reminded about my disease.