Tuesday, June 23, 2009

Living The Surreal Life

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.


Pris said...

Shame is such a strong component. You said it so well. I always have a hidden fear that someone will think the old 'it's in her head' routine. My former CFIDS doc used to say, 'but it IS in your head...it's just that it's REALLY in your head. You have a problem with your brain'. I try to remember that some DO understand.

Yes, can relate, too, to being 'up' for a short time, then people think I can be up all of the time. They don't see the struggle to do that or the crash immediately after.

thanks for speaking for so many of us. You're indeed our warrier , Terri!

cfswarrior said...

Thanks Pris! This means a lot to me. I'm finding my world of people becoming increasingly smaller as I begin to really grasp who is safe to be around and who isn't. There have been some surprises along the way.

I really appreciate your support.


Renee said...

I am so glad you are honest about how challenging it is to live with CFS/ME. You describe so well what we all do in "public" or how we are fighting pain and brain fog, but people who don't see us every day have no clue. I too struggle with processing and find it so very difficult and at times scary.
So glad to hear you are seeing some improvements with Valcyte Terri. That is good news.
Again, thank you for being honest here and sharing what you have. It is helpful to old timers like me and to those at the beginning of this journey!

Andrea Runyan said...

That's so true about putting on one's best face when having social interactions.

Never mind that you might have napped most of the day beforehand or have to recover the next day.

I've always wondered, why do they do a tilt table test, when you can just take the blood pressure with the person lying, then sitting, then standing. That's what they used to do when I was anorexic in the hospital. The people on the NTH-Adrenals yahoo group use sitting and standing bp and heart rate. Seems like a really complicated test to me. Maybe I don't understand the necessity for the test--maybe it shows something that the lying/sitting/standing bps don't.

Jozephine said...

I too relate to so much of this. I wonder if you are feeling shame because at heart you believe it is your fault you are ill? I know I did for a long time, then I began to realise "Why not me?" instead of "Why me?" I still feel a lot of shame around my anxiety - like I'm a big girl now and "shouldn't" feel so fearful.

Thanks for your honesty, it helps us all realise we are not alone with this.

Anonymous said...

I related to so much of this. We mask our illness as best as we can for fear of rejection, yet we want people to understand the reality of what it's like to live with the illness (you express it so aptly), because we need genuine empathy, understanding and support.

I did the tilt table test a few months ago. The test wasn't fun, but I got through it and I'm sure you will too. Good luck with it.

Shelli said...

I rebel against putting on a good face for other people. I tell them how I'm doing; I refer to my illness; I comment on symptoms; I talk about life before and after. I let them know when I start to fade. I see the uncomfortable look on their faces. I see pity and panic. I see suppressed eye rolls. I see doubt and questioning. I'm not immune to their reactions, but I need to shout "This disease is real!" The more people that know it, the better. I have to believe that I have this disease for a reason ... or I will create a reason. So, I am sowing seeds of belief and understanding. So there! (final act of rebellious bravado)

At Home on the Rock... said...

I'm very late reading here, Terri...but once again, you've summed up this aspect of the illness so well. I think if we had a broken arm in a cast that people could see, or a heart condition that could be understood, people would be better able to follow. Thanks so much for expressing it in a way I never could.