My new routine began with that dang black and white fabric, and the red ‘X’. As I think back, it seems so ridiculous I’m laughing to myself right now, but it brought on panic attacks during this time period. I really needed my husband to cheer me on just to DO the exercises (did I say cheer or force?) and he was by my side. He supported me as both a cheerleader and physically (in case I fell off the chair!). I took anti-nausea medicine about 1 hour prior to a session as recommended. Then, (with wastebasket close-by just in case), I sat in a chair and began.
Initially, just looking at the pattern for a few minutes was all I could tolerate before Vertigo and Nystagmus set in. I gripped the chair seat and started swaying as I did them. Oh, and gagging, not sick, but gagging. The medicine apparently worked well in stopping actual throwing up, but it didn’t stop the gag reflex. Of course, I wanted to stop as soon as I started! My cheerleader reminded me what my PT advised. Actually, he threatened to call her and tattle on me…I’m sure in truth, I’d never had done them at all if Mike hadn’t ‘encouraged’ me so faithfully. A session lasted about 10 minutes at first and it left me exhausted! After about two weeks, I wasn’t making the progress I thought I should have. Was I expecting too much? I called my PT and put my case before her, “I’ve been trying to do these exercises and all it’s doing is making me gag…I get so tired after doing them…it’s harder than I thought…I don’t think I can do them…”. Okay, I whined it to her.
She listened patiently, then in her soft voice explained that ‘yes, I would be very tired after a session. Yes, they would be very challenging and I might feel ill’. Worst of all, I’d ‘most likely feel worse before I got better’! Oh, really? Why on earth would I want to feel worse than I already have? I listened, not so patiently. Then sounding really dumb, I blurted out “Uh, I don’t remember you telling me this, are you sure?”. “Yes Margaret, if you’ll refer to the folder I gave you, it’s all in there…”. I immediately set my eyes on Mike, and mouthed the words, “Did I get a folder?”. Mike calmly walked over to a stack of papers on my side of the bed and pulled out said folder waving it in the air. Where was I when I received this? My brain was not laying down memories because of all the stress.
I quickly apologized for bothering her and was told to ‘Call anytime, and reminded me she was a teaching professor, just leave a message. She’d return my call as soon as possible’. She assured me I wasn’t ‘losing’ my mind at all, that my brain was constantly working to accommodate during Vertigo and Nystagmus attacks. To put it simply, my brain ‘prioritized’ information. It was more important I stay erect, compared to receiving a silly folder! It was so reassuring to hear, after feeling the stares of people who didn’t know or understand my battle. Those who have fought or are currently fighting can understand this, I think.
My new routine became, well, routine. Would it be a good day or a bad day? How’s that for a routine? It boiled down to, how would my body/mind handle the day? The VRT exercises took a lot out of me, I knew I needed to take care of myself, but having a ‘caregiver’ personality wasn’t helpful at all either. I was having such difficulty ‘accepting’ this new role as a patient. Each day began with the best of intentions, but sometimes it was just too much. When I had a good day, my mind drifted to work, I missed it terribly! I’d think about calling my Supervisor with the great news of, ‘I’m coming back’! I knew my absence put them in a hard position as it was my co-workers that were picking up the slack. Then, a bad day would show up seemingly out of the blue, but in reality, I’d overdone the exercises. I felt I was on a new treadmill and wondered if I would or could ever get off.
For the first 3 months, I felt no different and maybe even worse. So when my next visit to Dallas rolled around, I have to admit I was not very nice with my physician or therapist. I came at them with all my frustration! I’m so glad they remained professional because I certainly was not acting like the professional I was. I had become the patient. I was reassured by both ‘everything was looking good’. Oh really? I didn’t feel I was making progress but they did, I wondered who was right. I decided to believe them. I was just a very impatient patient.
My PT had me do the exercises while she observed. Of course, this time, I had no Vertigo or Nystagmus as I had at home, but she noted I ‘gripped the chair throughout and swayed in a circular pattern’. My new instructions, put my hands on my lap, do not hold the chair. “Okay, Margaret why don’t you give it a try”, she said in her soft, almost hypnotic voice. She obviously hypnotized me as I gave it a try. Hands on lap, check. Eyes on ‘X’, check. I began moving my head side to side, survived that. Then up and down up and down, up and DOWN! My startle response went into overdrive as I stopped just before actually falling. I felt like a fool! “That’s wonderful Margaret, see the progress you’ve made”! Uhhh, no I don’t, but if you say so…With a big smile, she says, “See? You just have to push through it!”. I guess I had, for now…