How to Survive Surgery Recovery Drudgery: Part II

An Imperfect Post Surgery Playbook

About three weeks ago, I had major knee surgery. Preparing for this surgery was an anxiety-inducing mess, and the recovery is difficult when most of my non-surgical joints won’t work well either. I decided to share my strategies and advice, both serious and not, to make a terrible surgery recovery more bearable.

In Part I, I covered recommendations for preparations you can do before surgery, and here I am covering my advice for your surgery day and recovery.

Surgery Day

Tip #1: Follow all of the instructions from your provider

You should get a detailed packet from your provider with instructions to follow in the days/weeks leading up to surgery, as well as the day-of. Read all the instructions thoroughly when you receive them, and keep them on hand for reference. Always follow up with your care provider with any questions. Some of the rules they give you may seem ridiculous, but there are reasons for all of them. Most are tied to reducing the risk of post-op infection or bleeding, as well as safety during anesthesia.

No, you really can’t have anything solid to eat after midnight (or whatever time they assign), and you cannot take your NSAIDs (Advil, Aleve, Aspirin, etc) for a week (or whatever prescribed time) leading up to your surgery.

Depending on your procedure, there may be other instructions, such as not shaving the affected area for 1-3 days before, no lotions/oils/makeup on the surgical area, as well as general advice like avoiding alcohol and other substances. If you have sleep apnea, you will likely be asked to bring your CPAP/BiPAP with you. It’s also a great idea to have a printed list of your medications ready, marked with the last time you took then.

Make a list to remind yourself of everything you’ll need to bring in the morning, and share your instructions with the person who will accompany you.

Tip #2: Communicate your conditions and concerns to your surgical team

I’m usually nervous the day of surgery, and the flurry of activity can be overwhelming. Once you are taken back to the surgery preparation area, you’ll have a steady stream of visitors. The specifics will depend on your surgery center, but typically the team will include the following.

• A nurse will usually be assigned coordinate your pre-op care. This nurse will check your vitals, go over pre-surgery paperwork, and discuss your relevant medical history. If you are uncomfortable or anxious, don’t hesitate to share how you’re feeling. They can help make you more comfortable and address any concerns.

• A nurse, patient care assistant, or nursing assistant will help you (un)dress for surgery if needed, and provide you some wipes to do an initial cleaning of the surgical site, before returning to do a thorough cleaning and disinfecting. If you have any known topical allergies or sensitivities, be sure to speak up.

• At some point, the surgeon, anesthesiologist, and OR nurse will stop by to talk to you. They may all ask you some of the same questions, but it’s critical for your safety and well-being that your entire care team is on the same page, so be patient with the repetition. The surgeon will then autograph the part of your body they are operating on, which feels silly, but it’s effective to ensure there are no surprises.

Questions to ask

If you have any last-minute questions about your surgery or recovery, now is a great time to ask your surgeon.

• Feel free to ask them to explain the procedure again, ask what types of exercises, if any, you should be doing at home immediately post-op. They will go over this will you after surgery, but your memories immediately post anesthesia may be fuzzy or non-existent. The instructions will be written down for you, but in my experience the verbal explanations they give are much clearer.
• If you stopped certain medications like NSAIDs before surgery, you should ask the surgeon or nurse (or both) when you can restart them.
• Talk to the anesthesiologist and the OR nurse about what type of sedation will be used. If you’ve had anesthesia before, share everything you know about your previous experience. Tell them about any medical conditions you have, whether or not you believe they may be relevant. If you have HSD/hEDS or other connective tissue disorders, I suggest mentioning this specifically, especially if combined with sleep apnea.

For my recent knee surgery, I told my anesthesiologist about both these conditions, but I failed to emphasize the severity of the implications. He told me I was “young and healthy” and didn’t anticipate any issues. But when I am completely unconscious. my stupidly floppy airway almost totally collapses, and my blood oxygen plummets. I’m sure this sounds familiar to those of you with invisible illnesses— it can be hard to get providers to take our conditions seriously until they see the danger first hand.

They ended up intubating me completely, and I was fine, but I wish I had emphasized this risk and asked them to just plan on using my BiPAP instead.

Tip #3: Have your home prepared for your return

I covered this in Part I under “Prepare your home,” but adding another reminder here! Having a safe, comfortable recovery spot on a bed, couch, or recliner already set up makes it a lot easier on your and your caretakers to get you home and resting comfortably. It’s impossible to anticipate everything, so there may be some adjustments needed, but if you are well-versed in what type of brace and restrictions you’ll have ahead of time, you can set yourself up well.

Try to have items you need and want within reach, using folding bed trays, swivel tables, and whatever else you can think of to make your setup more convenient. I recommend lots of cozy pillows and blankets! I also wrote up recommendations for my favorite products to use to feel clean when you can’t shower.

Post-Op Recommendations

Tip #1: Be kind to yourself

This is the most important by far, so I’m putting it first. I know this sounds obvious, but it is easier said than done.

When I had elbow surgery in 2021, before I knew my hypermobility was a connective tissue disorder (CTD), I was not kind to myself during my recovery. The surgeon had told me the procedure would be minor, the recovery quick, and that I could go back to work a week after surgery. So, that is what I prepared for. He believed that my elbow pica (thickened tissue in the joint) was responsible for all my pain, and that my tennis elbow had been misdiagnosed, since the MRI didn’t show any significant issues with my extensor tendon. He simply needed to snip it out, and I would be healed. Hallelujah!

Surprise, surprise, it turned out I had BOTH an elbow plica and tennis elbow. The cherry on top was that the plica was the largest the surgeon had ever seen. So the simple snip turned into “extensive” debridement (removal) of the plica, as well as of the damaged tissue of my tennis elbow tendon. As a result, my pain was significantly worse than I had expected, and the recovery much more difficult. The surgeon didn’t explain the details of how the procedure went until my post-op appointment ten days later, and neither one of us knew I had a CTD which results in slow soft tissue/wound healing and requires a more patient, prolonged approach to physical therapy.

As a result I kept getting frustrated that I wasn’t healing fast enough, terrified that I wouldn’t regain my full range of motion (HAH, in hindsight). I obsessively worked on getting back my range of motion even though I couldn’t move or even touch my elbow without excruciating pain.

My husband wasn’t expecting me to need so much help, so he had only taken a few days off of work. He quickly was strained emotionally and physically, trying to care for me and work full time. Rather than contacting my boss and extend my time off, I went back to work as planned after a week, despite being in an unreasonable amount of pain. I can’t really explain why, but somehow I thought I had no choice than to just push through it, as if it were somehow my fault. Since I worked from home, I suppose I thought I could handle it. I spiraled into severe anxiety and depression that took months of therapy and medication to (mostly) emerge from.

Suffice to say, I don’t want to do that to myself ever again, and I don’t want any of you to suffer the same way either. For my knee surgery, to do my best to be kind to myself, here is the advice I am working to internalize.

You are not a burden.

You are loved and deserve to be cared for, by others and by yourself. You are enough, and you have enough time.

Listen to your body.

• I know that injury and surgery can make you feel like a stranger in your own body, unsure of exactly what it can and can’t do, and what is and isn’t normal. But I promise, you’re the expert on your own body, and you’re in control.

• With the guidance of your care team, push yourself only in ways that are healthy, and do so gradually. If you have a connective tissue disorder, the process may need to be extra gradual.

Healing takes time, and patience takes practice.

All bodies are different. If you have a connective tissue disorder or other condition, your body may be extra different. Your surgical wound may not heal as quickly, and it may take longer than projected for you to make progress with physical therapy. For example, my hEDS specialist, Dr. A, says her standard recommendation is to add a week to the amount of time the surgeon tells you to take off work.

Ask for what you need and want

• In my first draft of this section I only used the word “need” here, but I realize this word can be a sort of trap. I can convince myself that I don’t “need” anything because I won’t be in mortal peril if I don’t get it. So, don’t just ask for what you need, but ask for what you want.

• This circles back to “you are not a burden.” You deserve to feel as good and be as comfortable as possible. Don’t settle for unnecessary discomfort. Do you want help getting to the bathroom? Do you want your pillows adjusted? Do they need to be adjusted a second, third, fourth time to be completely comfortable? Do you want someone to do a load of laundry? Do you want some company to distract you from the pain? Do you want someone to run out and get you a milkshake and burger from your favorite place? Your friends and loved ones want to help you. Let them! Ask! Say yes when they offer!

• Your fall risk is high after surgery, even if you are an otherwise healthy individual. Leave the thing you dropped where it is until someone else can pick it up. Ask for help to get the other thing out of the cabinet. Take the time to use your mobility aids properly (ask your PT for help if you are not sure how). Also, again, it helps to marry a nurse.

• Especially depending on what else is already going on in your life, the added stress of surgery may wreck your mental health. If you have a therapist and feel up to it, try to make some virtual appointments to stay on top of your mental health. Stay in touch with your prescriber about how your medications are working. If you don’t have a therapist or counselor and want one, find one today.

Tip #2: Continue to follow all of your healthcare provider(s) instructions

I know I have said this a lot in these surgery posts, so I will make this brief, but it is important. Read your instructions. Ask questions. Do the exercises given to you as much as you can, but if it flares your swelling or pain stop and contact your care provider(s) to ask for guidance. You will heal more quickly if you follow your exercise regimen, but only if you don’t injure yourself further by pushing too far too fast.

Tip #3: Experiment, adjust, adapt

You can follow all of this advice, you can buy all the things, type out all the spreadsheets, and plan every detail, but you cannot actually see the future and anticipate all your needs. You won’t know how you feel until you feel it. That’s ok. Learn from what doesn’t work, and try something else until it does work.

Maybe you planned on using underarm crutches but now it’s too painful on your wrists, or you don’t have good enough balance. Try switching to another type of crutch, or rely more on a wheelchair until you’re a bit stronger. If you can’t afford to buy items new on the fly, you can often borrow items from others. This is another place where finding a local support group is especially beneficial.

A week after my surgery, I attempted a shower with the help of my husband. We prepared with a shower chair, a gait belt for him to help me move safely, and we had a strategy. It was still a horrible experience. After removing my brace, I felt so unstable and in pain, terrified of accidentally bending my knee (which I was not allowed to do), I burst into frightened tears when trying to move from the wheelchair to the shower chair. I almost fell, but my husband used his nursing training and some luck to get me in the shower chair safely. I spent the rest of the shower shaken and crying, in shock from the experience, and also feeling badly about myself, as if my panic were a personal failing and not a normal human thing to happen.

Bending awkwardly to try to wash myself, naked and feeling on display, staring at my deformed lump of a leg with muscles atrophied to the point I could not lift it without my hands, I felt weak, helpless, and pathetic. I took a deep breath and let myself feel my feelings for a few minutes without over-analyzing them, which is something I am practicing.

Then I moved to positive self-talk. Needing help is not weakness. Asking for help is brave. Healing is courageous. My medical conditions are not my fault, but they are a reality that I can respond to as healthily as possible. I chose to undergo this surgery because it is the best hope for a knee that will be stable and support me for years to come. I will get my strength back up when I reach that point in the recovery process.

So, for the next shower a week later, we re-strategized. We left the brace on until I was already in the shower chair. We turned on the tub’s tap to hot water to avoid immediately soaking me with cold water, and turned the shower head away from me as much as possible, and the whole experience was much better.

Even for simple things like what type of elevation support or ice pack or PT exercises feel and work the best, you don’t have to settle. You will still be in pain, everything will still mostly suck, but you can improvise, learn, and adapt to make it suck as little as possible. Be creative, and outsmart your obstacles.

Tip #4: Find a new obsession

Or delve deeper into an existing one. Depending on what body part(s) are out of commission, you may not be able to do the things that usually bring you joy. Time to find some new ones! For me, I started this blog, and I love it. It may not have been the best choice because typing on this laptop is flaring my wrist TFCC issues, but I’m supporting it again with bracing, and I’ll see how it goes.

As we are in the mist of the holiday season, I have also taken to watching both terrible and amazing Christmas movies. Maybe I will dedicate another post to ranking all these, but the other day I watched the hands-down most unhinged Christmas movie I have ever seen in my life, and I invite all of you to follow suit. Go watch “A New York Christmas Wedding” on Netflix, and then read this Slate article about it. This movie is as bizarre as the title is bland, and you will not be disappointed.

Here is a list of other ideas to help you find yours, in no particular order.

• Adopt a clowder of cats
• Take up embroidery or knitting
• Get really into jigsaw puzzles
• Start a virtual book club with friends or family
• Watch hundreds of episodes of terrible reality TV shows, like my personal favorite Catfish
• Catfish Elon Musk (or your villain of choice)
• Lose yourself in Reddit or Wikipedia rabbit holes
• Write reviews for all your favorite books on Goodreads

• Watch all of RuPaul’s Drag Race and delve into the podcasts
• Practice mindfulness and meditation
• Print and frame those pictures you’ve been meaning to for the last decade
• Play lots of video games. I hadn’t played many games in years because of my elbow pain, but I am loving Zelda: Breath of the Wild on the Switch.
• Call friends or family you haven’t talked to in forever.
• Host a virtual or in-person game night. (If in person, have your friends do all the setup work.)
• Take up some political activism right from your couch
• Or, if you have the luxury, let yourself sink into the deep comfort of doing absolutely nothing. Your only job is to heal. You don’t owe the world any amount of productivity to be valuable.

Disclaimer: No content in this post is intended as medical advice. If you are experiencing an injury that relates to the topics discussed, please consult with your health professional(s).