Being bed-ridden makes me a sitting duck. I seem to have very little control over how my time is allotted throughout the day. I think people assume I just sit in bed and have nothing to do. Not so much!
I am NOT on vacation, I am not lounging around, I am not just sitting here waiting for people to pop in.
First of all, my nights are very short as I am up every couple of hours for bodily functions which, on average is a process that takes about 20 minutes. Some nights I am up every hour. And, let me tell you, bed pans are not the most comfortable nor easiest things to use. So once that is done, I am for the most part awake. This means there are nights where I get NO sleep whatsoever.
The nurses come in and out of my room, day and night, to hang up meds and hydration. Again, this wakes me up every single time. Between 5 am and 6 am, they come in to withdraw blood, which again, takes about 10 minutes or so for which I need to be awake.
Therefore while you are in your comfy bed, getting 6 to 8 to 10 hours of interrupted sleep, I don’t. I at most get 1 or 2 or 3 hours (on a very good night) of sleep in a row, if I’m lucky. Imagine, every time I wake up during the night, I don’t necessarily immediately fall back asleep. So I end up sleeping sporadically. I’d say on average I might be lucky if I sleep 4 hours per night.
Come 7 am, there is the nurses’ shift change and that gets pretty loud. Imagine if you are home and come 7 am there are about 20 people milling about your place, leaving or getting to work, greeting each other, catching up, laughing… So by now, as patients, we are awake.
By 8 am, I am fully awake. Between 8 am and 8:30 am, the day nurse comes in to check my vitals, my blood sugar (needle prick in my finger – which they do at least 4 times a day, sometimes more), bring me my gazillion morning pills and insulin injections. So now it is a question of waiting for breakfast, which is delivered around 9:30 am. (except on weekends where all the meals tend to be an hour later!)
Of course, we must also remember all the times I have had horrible days like spending an entire morning throwing up, convulsing and passing out. Or the time I lost 5 days to hallucinations, then the times I shake uncontrollably because of very low blood sugar. Or a few times where I had bad reactions because of ‘human error’ in my meds from inexperienced and/or tired nurses. Or the fact that I need to constantly be vigilant about the pills I take since again, human error does happen that I am ether given the wrong pills or the wrong dosage therefore I need to know exactly which pills I take to make sure I don’t take the wrongs ones or too little or too much of another.
Lest we forget the past few months of being put through the wringer physically, emotionally and psychologically by constantly being told I might die. Try imagining having doctors look at you in the eyes and say if things don’t improve soon, that’s it, game over. And explain to you how you might die. Just try imagining what that feels like for months – having that looming possibility. Every day praying that it won’t be the last. The emotional turmoil, the fear of the unknown, the fear that things might take a turn for the worse when you thought it might be improving.
Then comes house keeping who just barges in, no matter if you are trying to sleep or not, takes about 10 minutes to do the garbage and mopping up and make just about as much noise as they possibly can.
The Fellows (young doctors training in their specialty, in this case BMT) make their rounds anywhere between 9 am and 10:30 am. Then sometimes the Attending Physician will come in late morning or late afternoon.
In my case, I am also followed by a whole bunch of other specialists: Dietitian (trying to find a balance to accommodate my food limitations due to dry mouth GVHD and dietary restrictions due to the GI Tract and diabetes but still gain body mass); GI Tract Specialist; Broncho Specialist (lungs); Dental Oncology; Endocrinologist (I am diabetic now due to the steroids and we are trying to get that under control); and most importantly, my Physiotherapist and Occupational Therapist which is what will get me back up on my feet.
Ok, then comes lunch around 1:30 pm. Meals take a while for me as it is a whole process to get the right combination and consistency in order for me to be able to eat it. As well, since my face is very swollen from the steroids, eating is not comfortable and I am very self-conscious about it. I would very much prefer NOT to have people here when I eat.
Physio and Occ. Therapy is usually done late morning or in the afternoon. The whole exercise session takes about an hour and is very physically taxing on me but one of the most important part of my day. Physio cannot be interrupted or postponed. Physio is what will help me get home.
By now, trying to take a nap in the morning is impossible because I am too busy. Napping in the afternoons? Also almost impossible due to the constant in’s and out’s
Of nurses and sometimes docs. There are also the innumerable tests, scans and procedures that I need to be done which is very time-consuming and again, tiring for me.
I love having visitors and I am SO grateful for all the help, support, and running around everyone does on my behalf. I couldn’t do any of this without my amazing friends. However, just ‘dropping in’ is not always appropriate or beneficial for me, especially when there is more than one person ‘dropping in’ at the same time. It becomes too overwhelming and tiring.
All this is why it is essential for me to sometimes set specific times for people to drop in. I also need to make sure there is never more visitors than I can handle at once. I’ve been through the wringer many times over these past few months and I am absolutely drained and exhausted.
Mornings and early afternoons are for the most part NOT a very good time to drop in. I understand and appreciate that everyone is busy with their own lives and schedules and go out of their way to help me out and run errands for me. That of course they will come when it is most convenient for them but at the same time, I must dare ask for a little consideration for my own schedule and resting periods.
I know my long journey here has been arduous for my friends and there is definitely ‘care giver’ fatigue. Trust me, I try not to abuse the generosity and time-consuming efforts of everyone’s work on my behalf. I am truly grateful for everything everyone does for me as I am at the mercy of their schedule for all my ‘external’ needs. Every one has gone out of their way and beyond to help me.
However, sometimes I feel powerless. It feels like I just sit here and people are milling around me like a beehive.
By the end of the day, I am exhausted. This is still a very emotional journey for me. It is physically, emotionally and psychologically draining and scary. Again, this is me, dealing with life-threatening issues, spending all my strength and energy surviving, being a warrior. I am doing all I can to be able to go home and live whatever time life has in store for me. Once I’m out, I still have to deal with Chronic GVHD. Dealing with the Acute GVHD does not affect the Chronic GVHD. I still have dry eyes, mouth and throat and the liver to deal with.
In fact, I still have pneumonia in my left lung, and a few other tenacious infections. Not to mention, I need to gain back mobility. I still need to be tapered off the steroids and again, we hope that nothing else ‘pops up’.
Please remember what I have and am still going through in terms of challenges and health issues. I don’t simply have a broken leg that needs mending. I am dealing with Leukemia, Lymphoma, and Chronic which once I am back home, are still issues I will be dealing with until I am told I am in remission. Perhaps one day I might even be told I am cured. Wouldn’t that be nice?
On a brighter note, today is a good day. I am now able to move my legs without using my hands. I can sit up unassisted and most importantly, my Bilirubin is 35!!!!!!
Today is a VERY GOOD Day!
Once I am back home, and yes, that day will come, then we can visit as long as you want and trust me, I look very much forward to just hanging out with you, sipping coffee and chatting away.