November 5, 2009
Its day six in the invasion of the H1N1. I am still weak and fatigued and the Tamiflu is causing vertigo which I’m hoping ends with my last dose today. Even when I’m sick my priority has to be making sure that Lauren’s care is not affected. There is no calling in sick, taking a break or being selfish – it’s just not allowed. When you’re caring for a young woman with Lauren’s extensive needs you simply don’t have the luxury of prioritizing anything in your own life – even something as critical as your health. This illness has been no exception.
Walk with me through the last six days.
Day One (Saturday) – I wake at 4am and know that I’m in trouble - fever, chills, body ache, cough, nasty headache. It’s Halloween and our weekend DSP has taken the day off. I have someone filling in for a few hours. George is going to have to take over for the rest. He does a great job but he can’t do everything for Lauren that I do. Plus, he’s trying to take care of me. He’s an amazing specimen but he is seventy-three.
Day Two (Sunday) – Temperature 102, everything hurts, just want to sleep but I’m too uncomfortable. Lauren is scheduled for our local H1N1 clinic today. George and the DSP take her. They refuse to give her the Flumist (which her primary doctor had told me would be fine – but I now know she shouldn’t take). I’m terrified that Lauren will get what I have. Apparently the flu is rampant in our county. I read on the paperwork with the Tamiflu that I just got that it can also be used as a preventive - I’ll be on the phone in the morning.
Day Three (Monday) – Still in bed. The Tamiflu has calmed down the cough but not before I injured my ribs. Our daytime DSP had scheduled this day off to take care of some medical appointments. So, George is on duty again. He cancelled the one appointment he had and stayed home. I call Lauren’s doctor’s office. Her primary is now on vacation and no one else will prescribe the Tamiflu for her because “they didn’t see me” (I got sick on a weekend. They prescribed it over the phone.) Yet, they did prescribe it for Lauren’s DSP who is also a patient, after she simply called in and requested it. Double standard? You bet! I eventually got her neurologist to prescribe the Tamiflu. But all of this caused a 24 hour delay in her starting the medication and took more energy than I had.
Day Four (Tuesday) - I thought I would be a lot better by now – I’m not. I’ve been hibernating in my bedroom and only allowing George in with a mask. But I can hear Lauren making unhappy noises and I lay in bed wondering – Is she getting sick?, Is it just PMS? Is she upset wondering why I’ve disappeared on her? George is doing a wonderful job keeping everything rolling along, but so much of Lauren’s care is in the details which is my domain.
Day Five (Wednesday) - The fever is gone but I’m still aching and weak. The vertigo is not allowing me to move around much, bend over, or think very clearly and then there’s the nausea. I have found out that there’s another H1N1 clinic coming up. Can Lauren get the vaccine while she’s still on the Tamiflu? Is there a waiting period? I start making phone calls. County level – clueless. State hotline – not sure, transferred seven times (once to the webmaster). I spend untold minutes on hold. After being transferred to the same wrong line for the third time, I finally say, “Please, have a little pity. I’m sick. I need one simple question answered.” The young woman took down all the information and said that she would have someone call me back. It took another five hours, but I finally got my answer. You can get the vaccine 48 hours after the last dose of Tamiflu. Around 7 o’clock I check on Lauren and the DSP and realize that the DSP is not well. I have to send her home with a possible sinus infection. George had to go out-of-state to a meeting today but luckily he’s back by 7:30 or I don’t know what I would have done. I don’t have the strength or the balance to do a transfer or change Lauren’s clothes.
Day Six (Thursday) - Wow, once this flu gets its claws into you it does not want to let go. I still can’t be up for more than about a ½ hour. Lauren had a seizure at 6AM. The evening DSP calls to tell us that she’s still not feeling well and can’t get a doctor’s appointment till Friday. Lauren will need a shower tonight. I will not be able to do it and there’s no one else who can.
It’s always tough when you’re sick and can’t do the things you need to do. But, it’s another level of panic when you can’t do the things you must do. Will the DSP be in tomorrow? I doubt it. What will I do then?