The past two weeks have been even more challenging than my “normal” for both my body and my mind. I had surgery two weeks ago to place a new/additional feeding tube and we ran into some challenges and now I am trying to heal and recover.
I’ve had to spend more time in bed since getting home from my surgery because I’ve been unable to move much on my own. For the first week I couldn’t sit up, stand, walk, sit down, go to the bathroom, brush my hair, or do anything for myself. Being 100% dependent on other people is really hard, regardless of the fact that I was already disabled and very dependent on my parents for so much even prior to surgery.
I have to admit that the first week or so post- surgery is all a blur. There was lots of pain, many doctors, a painful car ride home (or two), a lot of sleeping, medications, ambulance, pain, another ambulance, an awful ER, pain…. But what I do remember is that both of my parents were right there by my side the whole time. There was never any talk of hiring a nurse to do the hard work or asking another family member or close friend to come help so my parents could go back to work. Every day I had at least one if not both of my parents there taking care of me, no complaints or mention of using up their sick days.
For the first many days I slept 20+ hours a day with the help of pain medication, nausea medication, and sedatives, which all together helped make me more comfortable. After my ER trip on Monday/Tuesday I stopped taking the heavy pain medications because they delay gastric emptying so I also stopped sleeping and instead started having major insomnia again. By Wednesday/Thursday I was starting to walk on my own and eventually getting out of bed by myself, too. Although I run out of energy quickly and my pain levels are still severe, every step forward is worth a celebration.
Having such a supportive and involved family made all the difference for me; I didn’t have to worry about keeping up with meds or finding a good nurse or anything because my parents and sister were on 24/7 “Rachel Duty” for as long as I needed them. We also have an incredible community that supports me by sending cards, flowers, and gifts but they also support my parents at work and through facebook and texts/calls of support and well wishes. Being the parents and care takers of a young adult as sick as I am is no easy task and it’s extremely important to have that support.
Surgery is tough, but recovery is hell. Waking up each morning in major pain and knowing it’s not going away isn’t easy on anyone physically or mentally, but each small improvement or sign of progress gives me hope. Life is precious and every day that your body is functional and pain free is a gift; I encourage you to take advantage of every day and live life to the fullest, always follow your heart and do more of what makes you happy. Find joy in every day.