Thursday, August 7, 2014

Recovering from a Hysterectomy in an Autistic Household

In my last post I talked about preparing for an upcoming hysterectomy.  It now has been a week, so I thought I'd do a little update. When I was recovering what I appreciated most was knowing what to expect in my recovery period. Especially the first week. I knew the vague details I had been told by the hospital, and read online, but I wanted to know a more day by day play of what others experiences were. I thought that I could write about mine so that other women might be able to learn something from it. Especially, those of us on the spectrum who need a lot of preparation ahead of time for things. Also, this might be helpful in terms of what to expect if you're a mother of children with special needs. This post is bound to be long-winded, and maybe boring to many. You've been warned!

Day 1- The Day of surgery.

I got up around 5:30 AM. I got dressed real quick, and grabbed my purse with all my papers in it. Not much else to do. I wore a long flowy maxi-dress. That way I could have something comfortable to wear home. Flip flops are usually reserved for the pool only with me, but I knew I would need shoes that I could slip on without any bending, and stretching. I didn't have any slip on low heeled shoes, so flip flops would have to do.

When I got there I was quickly checked in, and said goodbyes to my husband. I slipped on my hospital gown, and had to literally answer hundreds of questions.I am not sure how long I waited while answering questions, and  getting set up for the I.V. I think it must have been about 2 or 3 hours. They gave me some relaxation meds during this time. When it was time for surgery I was wheeled by the waiting area to see my husband very briefly.

I really have no idea how long the surgery lasted.My memory becomes very foggy when I have anesthesia. When it was over I was wheeled out to the room I was in before, I think. I semi remember being awake, but one thing I do recall standing out vividly was that I felt very sick. They gave me something in my IV to stop the nausea, but it didn't work. It was getting worse. Then, I was given a patch that they put behind me ear to help with the nausea. I recall the nurse saying something about not touching my eyes after touching the patch, and groggy me thinking "I am not going to remember you told me that in five minutes."

I was then wheeled out to the hall past the waiting area where my husband joined the nurse, and I on our way to my hospital room. I don't recall much about this time, other than I was still terribly sick.  I was given another med in my IV that I was told would make me groggy. I didn't care. I'd rather be sleepy than vomiting any day.  I don't recall much pain at this time. I did feel a tinge of pain if I moved too much, but not much.

I slept on, and off the rest of the afternoon while trying to watch TV, and talk to my husband. One of the nurses mentioned that I might try to chew some sour gum as it is recommended by some doctors to wake up the stomach, and ease nausea. I was willing to try. It didn't seem to help.

After tolerating a few cups of water I decided to try a cup of coffee. It seemed to help most of all. I do love coffee. I would drink it all day, and night if I could. I was not surprised that it seemed to do the trick. I was able to eat a few bites of food after having some coffee. Half a turkey sandwich, and a tiny bowl of vegetable soup never tasted so good after the long fast of over 24 hrs of no solid foods.

After walking around the halls a bit, and some other functions I was able to go home. I almost was held up for not being able to potty, but they let me go. I really think that with the busy-ness of my home it would have probably been better for me to stay, but I was worried about my daughter being home with the boys alone too much. Respite would have to leave, and I didn't want too much responsibility to be put on her.

After a quick run to the pharmacy I arrived home. I guess it must have been the anesthesia still in my system, because I was getting around pretty well. I slept in my bed, and really felt pretty good.Hubby set an alarm, and got me pain meds through the night as they wore off.We felt the first two days it would be better to just take the pain meds on schedule rather than as needed. Pain after such a big operation, while minimally invasive was still going to be rampant the first few days. It's always best to stay ahead of the pain, rather than trying to quell it after it gets going. I don't know the specifics of how the nervous system responds to pain, but I do know it's best to take meds before the nervous system sends the message to your brain that they're needed when in a situation where moderate to extreme pain is involved.

Day 2- Some of the pain, and swelling caught up to me. I'm able to sit, and relax most of the day, though I am seriously nauseous still. I put a heating pad on my back, and ice on my stomach. The recovery is going as planned, sans the sickness. The only part that catches me by surprise is how much I can't bend, or reach. Even just a slight reach is really painful. It's important to keep my feet elevated to take the pressure off of my tummy.

Day 3. I am still needing to move slowly, and gingerly. My stomach is still all swollen. I'm still nibbling on little bits of food here, and there. My emotions catch up to me, and I am very emotional. Not only am I sick, but I am in pain. Beans is not liking the routine change, and is being severely agitated. He is making all of his loud stims he makes when he is upset, and my sensory system is getting very overwhelmed. Hubby went back to work, and is leaving the bulk of the work to CJ. Respite came for a few hours to help with Beans.

I seem to feel irritable, and sad at a whim. I am able to sit, and relax through the day, though. I have blasted through most of my DVR programs, which wasn't all that much to begin with,

Day 4: I am still sick, and not eating much, but the pain is much better. I decide to get up, and do some housework. Beans is still very agitated, and I cannot handle sitting on the couch listening to him stim, and cry. I have to get up, and do stuff. This is not just due to my own emotional health, but there's so much to be done, and hubby, and CJ are too exhausted to do it.

Day 5: Still not feeling very well, but I'm able to eat a little more. Pain is pretty bad. I should have not done so much the day before. I try to sit, and relax, but there's too much to do. My house is chaos. I feel very depressed at the lack of support. I don't know why, but I am just feeling very low. I hate my routine being disrupted, and I can't even do anything I find enjoyable, because my house is too loud for me to concentrate. I almost deactivate my FB account several times over the next 2 days, and am just a big mess. No one would (or probably did) know I felt the way I did. My household feels very stressful, and I begin to feel  resentful that none of my family (and few of my friends) connect to check on things. When I hear about these types of things happening with others I make them food, and such to ease their load. I am honestly a bit angry that no one thinks to return the favor. I do think that many of my friends have lives that are just as high stress as mine, so I understand why some of them forgot to call, message, or drop by. Day 5 was the worst for me emotionally. I just feel beat down, and unable to see any positives. It feels like the world is against me, even though I know it isn't.

Day 6: Appetite, and pain is better. I am able to somewhat follow my routine with the help of pain meds, I am moving, and eating, which in turn lightens my mood. I look forward to seeing the doctor. My house is still loud, and I am still unable to do a lot of what I would like to, but somehow it doesn't bother me as much as it did the last couple days. I am still moody, however, just not as moody as the day before. My ability to reach, and bend is much better. If I drop something I can pick it up gently, and the same with reaching. I am able to get stuff above my head, and reach for the remote, or to plug in my phone without feeling like my stitches are ripping out.

On my way to the doctor, and glad to be out of the house!
Day 7: It's now been a week. The pain is still moderate, and I am still taking ibuprofen pretty much all the time with some Loratabs tossed in as needed. I am ready to see the doctor for my follow up. Respite cancelled, but CJ is able to watch the boys. The doctor checks my stitches, which for some reason my skin has begun to grow over, so they had to be cut out from the skin. He asks me how I am doing, and I ask my questions. Mostly, I want to know why I am so nauseous, and still seem to be so sore. He says that it is due to being so thin. I wish he'd told me this before, because my experience did not match up to every one else's. He is a blunt older gentleman who says what he thinks. He is known for his sense of humor. He says "If you were big, and fat it wouldn't matter." in reference to the anesthesia causing nausea. lol The he says before we leave "I want to see you in 5 weeks, and don't use your vagina. I am saying this more for your benefit." as he points at my husband. I thought that was a quick, and effective way of putting it.

So, I am still healing. I am on day 9, and I have most of my appetite back. I wouldn't say 100%, but most of it. Of course, I am not moving around anywhere near as much as usual, so I may not need to eat near as much, either. The respite worker remarked that I must be having a hard time trying to relax, because she has never seen me sit down other than to eat. I am always moving, and doing something. So much so, both CJ, and hubby had become overwhelmed, and unable to fully do my job for more than 2 days without needing a break. My daughter contends that I 'must have super powers' because she has no idea how in the world I do all that all day everyday. Almost all of my schedule revolves around Beans, and meeting his needs. We have almost every meal homemade, and typically in the summer we will play outside twice a day, and go to the pool. Along with housework that leaves very little time for anything else. I also make sure that I include him in most activities, even if it slows it all down. He won't learn to do stuff, and communicate if he's not given the opportunities to try. As much as I don't stop my kids from stimming it is not healthy for them to sit, and do it all day long. They need to experience other stuff, so I am sure to expose them to as much as I can.

I am still really swollen up from the surgery, and look a couple months pregnant. I bought a few casual comfy dressed to wear during my recovery time. I expect this to be what I wear for probably a few weeks. I am not very big, so any swelling is noticeable on me, and renders my usual clothes too tight.

With all that in mind I realized I am okay with not healing up as quickly as many do. I also think that when most people say they get back to their regular routine it is not anywhere close to my regular routine, so I ought to not compare my recovery with others. I am okay with taking it day by day, and doing what's best for my me, and my family the way I always do anyway. Unconventional, and offbeat. :)

I am also wanting to quickly say how much  I appreciate my husband's and daughter's help through all if this. It is not easy for them to pick up so much slack, and I am often not an easy person to deal with when it comes to my routine being broken. My anxiety comes out as bossy, because I get so upset when things are out of order, and I feel out of control. 


  1. Hi, I just wanted to thank you for chronicling this. I've been struggling with (probable) endometriosis that they think has spread all over my abdominal cavity, and they're trying to figure out what they want to do about it. I really appreciate your openness and chronicle about this, since there's so little out there. I hope you continue to heal, and that this helps the issues and gets things better. :) --E

    1. There really isn't much out there that really details what to expect. There is some vague descriptions, but I often need things really spelled out for me.

      I hope you find some solutions soon. I think most doctors would be really hesitant to perform a hysterectomy on someone as young as you.I'm young compared to most women I know who get them, and I'm 35.

      If you have any questions, please feel free to email.

  2. For reference, that patch behind the ear works much much better if put on the night before the surgery. I had it both ways, and like you it didn't do much the first time when put on after surgery.

    Sorry. :( Wish I had thought to mention it before your surgery.

    1. I probably wouldn't have thought much of it. I'd only had one surgery before this one, and that was a laproscopy about a month before this one. I didn't get sick with that one. I am on day 12, and I still don't fully have my appetite back.


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