I'm a bit at a loss for words as I once again digest the consequences of having an illness like this. I feel a certain responsibility to be very honest in this blog as well as trying to educate people on what its like to have an illness like this.
I don't think its possible to really grasp how ill some of us are because when we are out in public or having social visits, we are putting on our best face. So what people see is that I'm smiling, interacting, laughing, and I don't look sick. What isn't seen is how much I'm struggling with trying to find words to express myself or how long it takes to process things that are happening or how long it took to get ready that morning, or how tired and woozy I might be feeling and sometimes, how I'm simply trying to prevent myself from passing out. What people never see is what occurs when they leave.I'm flat on my back feeling profoundly fatigued, struggling cognitively, and frightened I won't come back out of it.
I have a lot of pride. I used to have a lot of pride about my independence, my intelligence, etc...I'm recognizing how much shame I have about being this sick. It is having a profound effect on the way I interact with everyone and I don't know what to do about it. I try to hide every bit of evidence of illness from people. This in and of itself takes energy.
I don't mean to sound whiny when I talk about these things. I'm simply stating the facts of my experience.
I think I expect people who knew me when I was well to reject me because I'm sick. I didn't have the highest level of confidence when I got sick and finding myself completely disabled has altered my sense of myself in the world. It has gone from a place that I enjoy and freely explored to a place that has to be navigated. Driving used to be no problem. Now I don't drive on the freeway and I try to find routes that don't have long stoplights. I can't stand in long lines because I get woozy. I have to limit the number of times I bend down to pick something up because it increase the dysautonomia symptoms.
Today I'm digesting some upsetting things that occurred over the weekend. As I'm doing that I'm also having to continue to work on gathering data for my ssdi appeal. As I process my changed sense of self and try to regain a sense of balance and centeredness I have to tie up the loose ends of my old life as if I'm making the final arrangements after someone has died. That's the way it feels. And the grief too is very private and though less intense now than a few months ago, still has its fingers on my soul.
That said, I have noticed some improvements in the past 4 days. Finally, something to show for the 5 months I've been on Valcyte. I'm encouraged by the improvements. But overdid it and am now paying for it with a crash. I was able to go out and do a couple things each day for 4 days. For the first time in almost two years I went to a musical event celebrating the summer solstice. I wasn't there for very long but I did it. And I was by myself. It took place very close to where I live which helped but I got to hear some music and actually be out of the apt for about 30 minutes.
Yesterday I went to my cardiologists appt at a hospital about 20 minutes away. The appointment was over an hour, it was a warm day, and I was emotionally upset. Since it was at the hospital I had to find parking which ended up being a very long block away. I made it through the appointment without passing out. The cardiologist had to keep redirecting me because I couldn't quite answer his questions directly (which was embarrassing). He was kind about it though. I think he could tell that something wasn't quite right. All of these things would have made it very difficult to drive myself home but I was able to drive home quite easily and, stop at a store to try to find applesauce.
The cardiologist agrees that it is likely I have the form of dysautonomia-postural orthostatic tachycardia syndrome so he ordered the Tilt Table Test for July 2nd. My sister will take me to the appointment thank goodness. The doctor said I needed to have someone drive me home after the test. He explained the test to me. I didn't realize how long it is. For anyone who is interested this is what happens: they lie you flat for 40 minutes to get a baseline read for heart rate, blood pressure, etc...Then they tilt the bed up as if you are standing but you are strapped in so you can't move. You stay "tilted" until you faint or there is a significant change in heart rate, blood pressure, etc...If this doesn't occur within 40 minutes they return you to the flat position and an intravenous infusion of isoproternol (Trade name = Isuprel) is started. This medicine increases the HR and BP. This effect is similar to that produced by our own natural adrenaline release. As you may have gathered, the test is now simulating what happens when the sympathetic nervous system is stimulated and the "accelerator" is pressed. The tilt table is then raised back up to 80 degrees and the IV medication continued.
A stop clock in the room is used to keep track of time. If an abnormal result is not seen, the table is lowered and then raised back up after increasing the dose of the IV medicine. In patients with dysautonomia, the increase in HR and BP is usually sufficient to cause "panic in the back seat driver" (parasympathetic nervous system). When this happens, the HR, BP or both drop suddenly and dramatically as the parasympathetic system "slams the brake pedal.". The patient gets dizzy and passes out. Thus, TTT succeeds in simulating a real life situation and establishes the cause of recurrent black out spells. With the above changes, the test is considered positive. The IV medicine is immediately stopped and the patient returned to the flat or supine position. Within a few seconds, the patient regains consciousness and both the HR and BP return to normal. The patient is observed for 10 to 20 minutes and then disconnected from the equipment.
I've been dreading this test for the past year. It feels awful to faint and I've been afraid that the episode will further increase my fear of fainting out in public because it might really happen now that I know I have dysautonomia (if I end up fainting during the test). Luckily I have the Amygdala Retraining Program to help with those fears and, there is treatment for dysautomonia. There is no cure for it but there are medications that can help manage it.
I've written enough for now. I've got to find a way to better explain what living with this is like.