MS Patient, Ph.D.: Home From the Hospital
Recovering from the side effects of hospital interventions is just as important as relapse management in resuming normal activities
After my first relapse, I was aware that I was going to have to deal with my MS diagnosis. But little did I know that it would be the side effects from the tests and the treatments I received while in the hospital that would render me unable to function normally—information that was completely left out of the discharge discussion. As a testament to how poorly informed I was of what to expect after leaving the hospital, I hadn’t rescheduled meetings with my graduate thesis committee 3 days after my discharge, nor did I postpone my experiments planned soon thereafter.
Sure, I had received discharge instructions before leaving the hospital, but they lacked information to set the correct expectations for my return home. I was told to call my neurologist’s office if I experienced any new, or worsening, MS-related symptoms. But I was not told what to do if I experienced any side effects.
It was those unanticipated side effects of the procedures done at the hospital that made the recovery hard for me.
Once home, after the 5-day course of IV corticosteroids (without tapering), I was looking forward to finally getting a good night’s sleep. At the hospital I was awakened every few hours to monitor my blood pressure, blood sugar, and breathing.
But instead of restful sleep, I had insomnia.
I was aware of this normal side effect of the corticosteroids (along with the high blood sugar and increased energy levels). But I was not warned that my body could go through withdrawal or would need to detox from the corticosteroids. Unexpectedly, on my second night home, I started to get horrible chills, like when I have the flu. I spent most of the night trembling under my blanket and sweating at the same time. Had I known how debilitating these particular side effects would have been, I would have just focused on recovery. Unprepared, I spent the little energy I had in preparing my presentation and trying to coordinate the execution of a complicated experiment.
Despite these early difficulties, I still optimistically thought that I would be able to attend the meeting with my thesis committee on my third day home. A warm shower would do the trick to clear my head.
Ten minutes in, I got very dizzy and started seeing black spots and stars.
I quickly got out of the shower and lay down on the cold bathroom floor to avoid passing out. Only then did I realize that I was in no shape to return to my normal schedule of activities. I was forced to cancel my meeting at the last minute, which I could have done a few days earlier to avoid appearing unprofessional. Luckily, I had complete support from my boss, and a few weeks later I was able to better explain the situation to my very understanding committee members.
My issues were not solely related to the corticosteroids, either. While in the hospital, I had also undergone a spinal tap to confirm that I had MS. I was told spinal taps could in some cases result in a headache, but that fact was downplayed significantly. I was told that the chances of a headache were small, especially if I rested on a flat bed for 3 hours afterward. I followed the indications and expected the best.
Once I got home I had a headache, which was only made marginally better if I remained lying down or took ibuprofen. But even with those remedies some pain remained. It wasn’t a normal, annoying ache; I found it extremely hard to concentrate on anything more than simple tasks. Which didn’t help me as I tried to put together my presentation for my meetings. Even the attention spent on short visits from friends would drain me enough to cause my head to ache more, rendering me useless for the rest of the day.
A few days after my discharge, I enlisted help from about half a dozen people to do my experiment. My parents drove me to the lab, where I could barely walk around. It took all my willpower to be able to troubleshoot some issues, only to see the experiment fail an excruciating 2 hours later. Had I realized how hard it would be to function normally even for a few hours, I would have cancelled the experiment and saved all those months of preparatory work that went into it, not to mention all the wasted resources.
After struggling for 4 days with side effects and lack of concentration, I finally acknowledged to myself that my time would be better spent resting. I really would have appreciated it if someone had informed me upon discharge of the difficulty my body would have in adjusting to being without steroids and recovering from all the medical procedures.
Individuals living with MS, like any other patients, need full and complete information about their treatment and recovery in the short term, in particular when they are about to go home and have to deal with both the diagnosis and the effects of treatment. A detailed discussion needs to happen between the doctor and patient about the range of normal side effects—even the less frequent and more extreme ones—and when to be alarmed. In addition, patients should be advised that recovery can be slow, and to see how the first days home are before resuming normal activities.