Friday, September 30, 2011

My Recovery Tips

Here is a list of things I found helpful after my ONS implantation. I had an alternate lead placement, so some items might not apply to your situation. I will add more as they come to me.

Ice Packs
These are a necessity. They help with the post-op swelling and are soothing for nerve pain and migraines. I found it was nice to have 4 so I could rotate them and always have a cold one. My favorite are the ones that are made out of fabric because they are less cold to the touch than those made only of plastic. I got the generic cold compresses at Walgreen's. I kept them in a pillow case rolled up to keep my skin from getting too cold.

Ice chest 
I kept an ice chest next to me to keep my ice packs and drinks in. Our freezer is a drawer under the refrigerator, and during recovery you are not supposed to lean over. So, I kept my ice packs in a ziplock, on ice in the ice chest so I had access to them while the boyfriend was at work. It was also nice to have bottles of water in there so I didn't have to get up everytime I needed a drink.

Sleeping area in which you can elevate your head and lots of pillows
The pain from the lead implantation kept me from being able to rest my head on anything during recovery. I slept on the couch so I could keep myself propped up against the arm (with the help of many pillows), but you might be able to accomplish the same thing in bed with pillows or maybe even in a recliner.

It hurt to tilt my head back to drink during the first couple of weeks, so I appreciated having straws.

Pill tracker and reminder 
I used a free app on my phone called Rx Caregiver. It allowed me to enter in the pills I was supposed to take on a schedule and pills I was supposed to take PRN (as needed). For the scheduled drugs, it sent me reminders. As I took PRN drugs, I just entered them into the app. That way if I lost track of what I had taken, I could view the drugs I had taken on my phone. A pen and paper would work just as well.

I used an app on my phone to set a timer each time I took my pain meds. I found that if I took a dose too late and was in pain, it was much harder to get the pain under control than if I took them every 4 hours like I was supposed to.

I recommend having a lot of mindless entertainment on hand, especially for the first week or so. I have Netflix and friends lent me some DVDs, so I was well-stocked.

Because you are not supposed to lean over during post-op, it's nice to have one of these on hand to pick stuff up off the floor. I got mine at Walgreen's.

Cervical collar
Your doctor may order you to wear one. If not, you might consider picking one up at a medical supply store. They're inexpensive and I found my invaluable. For the first few weeks the swelling made the wires very tight, and if I didn't hold my head up right they pulled on the leads. Ouch! This also happened when I turned my head side-to-side. The collar helped me hold me head up in the proper position and reminded me not to turn my head to look at something but to turn my body.

My battery pack was placed above my hip on my low back. Waistbands were painful because they put pressure on that area. I found nightgowns were the most comfortable thing to wear. I then progressed to my boyfriend's boxers because they had a very stretchy elastic waist. Elastic waists will be your friend if you have a similar battery placement.

Soft foods
I found it very difficult to chew during my recovery because of the placement of my left lead. When I chewed, the muscles moved under the lead and caused quite a bit of pain. I lived on mashed potatoes, creamy soups, smoothies, oatmeal, applesauce, yogurt, baby food, purees, and macaroni and cheese. There are lots of websites out there with recipes and lists of soft foods if you have to follow this diet, too.

Relaxation tools 
I burn lavender oil when I have a really bad headache. It helps to relax me because I get very tense when in pain. Do whatever helps you to relax - music, guided meditations (there are plenty of free podcasts for these), aromatherapy, deep breathing, etc.

Ask for help!
I'm a prideful person, so I hate asking for help. Surgery is a humbling experience that taught me how much support I had around me I wasn't utilizing. People were so helpful and giving and made the tough time a little nicer. That leads me to my next tip; the online care calendar.

Online care calendar 
There are several of these free sites to use, but I liked Lotsa Helping Hands. This calendar enables you to set up the days you would like help from others with meals, rides, visits, house cleaning, etc. Your friends and family can go sign up online to help with these tasks. I liked it for 2 main reasons: 1) people want to help, and this gives them something specific to do and 2) it keeps you from having to keep track of who is coming to visit and when - something that is difficult with a drug-addled brain.

I typically don't like people to see me laid up in my PJs, but I lost some vanity post-surgery. Spending most of the day by myself staring at the TV became boring quickly, and I loved having people over to chat. There were even days when I was in a lot of pain and felt like I didn't want a visitor, but after the person showed up I found that my pain decreased some after 15 minutes of chatting. There were also days where I was very frustrated with the stimulator's poor coverage and a visit with friends really cheered me up. So, good company can help with both the physical and mental aspects of recovery.

There are a few important caveats. First, only have people over that lift you up. If you have a toxic friend or family member that can exhaust you when you are well, you probably don't want them over while you're recovering. Second, set time limits, explicitly or just keep them in your head. I found I could get worn our pretty quickly - even when just chatting with friends. You don't want to overdo it.

The knowledge that I can say "no"
This was extremely important during my recovery. There were days multiple people wanted to visit, friends wanted to come in town and stay with us, a relative wanted to talk on the phone when I was in a lot of pain, and just my own expectations for myself to write a blog post or do chores around the house overwhelmed me. Your one job during your recovery is to take care of yourself. Period. If you don't care for yourself properly, you can set your recovery back. So, sometimes you have to say "no" to take care of yourself. Most people are usually understanding, but some people don't like to hear "no." I had one friend that wanted to come visit after another friend did, and I had to say no because I knew that would make me too tired. She was upset enough that she never tried to visit again during my entire recovery. I was frustrated that she took it so personally, but knew that ultimately I had done the right thing.

*Graphic courtesy of the blog Hyperbole and a Half

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