Having a life-threatening stroke that required open head surgery along with a second surgery to place permanent device, is strenuous. What I haven’t touched on are the changes I’ve gone through since my final release from the hospital in March. It’s draining, hard to get use to, and COVID19 lockdown doesn’t help the situation either. Anytime I’m experiencing these changes as little or big as they are, I do say, at least I’m alive. But being alive doesn’t take away the mental toll that you go through, especially when it’s still raw. I’ve been noting each change to keep track and note how they have worsened or got better. I’m sharing this because these common problems other people in my position go through.
1. Appetite: I’ve never been one to eat a lot of food, and I’ve been told that I eat like a child. I had a ravenous sweet tooth and often paired it with something salty. Really, I don’t know how I stayed alive on this food plan. When I got my stroke, someone brought me pop-tarts (my favorite) and I told them I lost my appetite for them, in fact I lost my sweet tooth overall. At first, I thought it was because I was sick laying in a hospital bed not hungry for anything. Well, to this day, I still don’t desire sweets. I don’t understand how a lifelong relationship with sugar could dissipate so quick. In the hospital I didn’t want to eat anything. I would order a banana and Ensure. This didn’t really change when I got out of the hospital the first time. The only thing that I could stomach was cream of wheat, applesauce, bananas and Ensure. The blandest foods satisfied my hunger, or should I say what little hunger I had. I only ate because I didn’t want to feel dizzy when I got up. I figured by time I was released from the second surgery, my hunger would come back, but it hasn’t. I’ve introduced hummus and chips into my diet and that’s about it. I try to analyze if my hunger problem is related to mood, meds or if the tube of CSF fluid emptying into my stomach is making it impossible to desire food. I’m trying my best to eat, but the nausea that accompanies it, is too difficult. I wonder within the months if my appetite will stabilize, and if it does, if I will continue to cut out the sugary treats and try to slowly introduce healthy food.
2. Sleep: In the hospital I never slept. Many people can attest to this due to all the commotion and sounds coming from the room. My nurses had to wake me in 15- or one-hour intervals to do neuro checks which made it impossible to sleep. I eventually gave up on a good slumber and occupied my time recording how my day went, what tests where run, my mood etc. I’m glad I did because it served as a good diary for me to look back on. The nurses and ultrasound woman who did the doppler on my head would walk in at 2 and 3am and knew I would be sitting up looking at my phone. They told me that I should try to fall asleep, but I just thought, how? Once I was discharged from the hospital, I was finally able to sleep. I touched on the sleep issue on another blog, but I will go in more depth with other issues. I am plagued with chronic nightmares of reliving my stroke but this time dying with an EMT announcing to others to call it. It’s a hideous dream and I wake up drenched in sweat. This dream continued well after my second surgery. Finally, I read up on how to combat these nightmares. Before I go to sleep, I think of good things, try to find a little Zen. These helped erase those awful nightmares, but I resumed back to my chronic nightmares I have, but at least it’s a different scene- I will take that. My new issue with sleep is that I’m fatigued and tired all the time. I could fall asleep on a dime and then wake-up feeling groggy and disoriented. This is a new problem that has recently manifested. Again, I wondered did I do something different with my meds, or is this boredom? One of the things VP individuals need to watch for is excessive sleepiness. In fact, that is the warning sign, that triggered my neurosurgeon to do a CT scan and discovered hydrocephalus. So, I teeter on this piece of information and wonder if I bother the doctor or blame it on something else. My groups I belong to say it’s normal for them. Some of them have been going through this for years! I can’t live like this. I feel like I really need to investigate why this is happening because if this continues, I’m just existing.
3. Energy: My energy levels have dwindled. Of course, haven’t we all, lately? I’ve recently lost the energy to get up from the sofa and if the controller drops on the floor, it’s hard for me gather the strength to bend down and pick it up. I feel like I’m a zombie through the day and must yell at myself to get up and do something. I blame it on the dreary weather we’ve had because when it’s sunny and warm, it’s like my body can sense it and rejuvenates it. Regardless, I can’t help but having intrusive thoughts that I’m worthless because I can’t find the will power to do anything from the afternoon into the evening. I’ve decided to analyze this portion and track my food, weather, meds, mood, what I did etc. If I can look at the good days of energy, then I can come up with a plan to keep that ride going.
4. Mood: Oh boy this is a big one. My mood is all over the place and I can’t control it. My doctor says I have PTSD, so naturally, I can see why is happening, but I think anyone going through these things, can also agree that their mood doesn’t seem stabilized. When I talk about mood, I don’t mean happy and then raging mad. In fact, I don’t get mad at all. My mood goes from optimistic, happy, go-getter, wanting to heal others, make a difference, to sad, depressed, hopeless and the finally crying. I cry all the time these days. I could be watching something funny and then suddenly I cry. I don’t know if I’m crying because I’m sad, or if I’m crying because I’m so happy to enjoy these moments. Mood management is easy for me to navigate, and I’m still going through the grieving stages. My doctor told me that a timeline doesn’t exist when this will stop or if ever, but it may come and go versus every day. Regardless, it wears me down, so I’ve become mindful on how to combat these moments, or just accept them as a passing instant.
5. Strange pain: This is a topic that I haven’t really highlighted in previous blogs. For a while, I’ve been experiencing pain in my groin, abdomen and legs and overall body sores. It’s a nasty feeling, and often bothers me. I go into panic mode, thinking something is off. I’ve reached out to others like me and they say they get it too. Sometimes the tube in your stomach is readjusting. I plan on talking to my neurosurgeon about my issues when I see her next, but for now, I’m going to take the word of others that it’s probably what they suggested. For my legs, I believe it’s a lack of activity. I was supposed to have 8 weeks of physical therapy, but due to the COVID19, that is no longer an option. I went on Amazon and ordered myself some resistance bands to try to do my own PT. I just started, so we will see how that works out. Erstwhile, sharp pain creeps up in my head out of the blue. Now this pain startles me because it brings me back to the beginning of this entire ordeal. The pain slowly goes away and then I’m back to normal. I breathe I sigh of relief and tell myself that this is my new normal.
6. Memory retrieval: I thank God that my long-term memory didn’t go away (although there are some things I would like to forget), but my short -term memory is still struggling. I was told that it will come back, but right now I’m finding it difficult. For instance, someone can tell me something and I will stare at them blankly, and then ask them to repeat it again. It’s so frustrating when I start something and must stop because I must think of what I was going to do? As time has passed during my recovery, my short-term memory is getting better, and I tell people to be patient with me because I do have moments.
7. Stomach swelling: This is something that has been bugging me to the point of obsession. Prior to my VP shunt surgery, my stomach was flat. After it was placed, I’ve noticed that I have swelling near my incision, where the drain drops, and now my overall stomach feels distended. I asked my fellow people if they were experiencing this too and they said yes, it’s drainage or my body battling a foreign object. I can’t stand it and I find myself doing something that I haven’t done for years- getting on a scale. I’m slowly gaining weight, and it’s not from eating. I don’t get it, and again I will bring this up to my doctor. I’m just scared if this is going to go on forever? My clothes in my closet, want it to be a no. So far, I still fit in all my clothes, the number on the scale shows that it shouldn’t. I know that it’s unhealthy to check your weight every day, however, I’m tracking this for medical reasons to report back to my doctor. Again, I’m analyzing the situation. I don’t care about my weight, but I want to know that the swelling will go down or that it’s not a medical issue. I read about VP shunts and some physicians reported pseudocysts with VP patients with severe stomach distention. Now is that my case, probably not. I just want to know if this issue is forever or if it needs time to go down. I couldn’t ask my neurosurgeon at my last appointment because it wasn’t happening at that point. I fear that I’m going to be referred to a GI doctor and I’ve yet to ever find a good one in this area.
8. Flashbacks: I’ve talked about flashbacks when I fall asleep, but I get flashbacks when I’m awake too. I might be doing a puzzle, watching TV, talking to my husband or mom, and suddenly a series of flashes assault my brain, and I sit there reliving everything that has happened to me. I still don’t know how to conquer this problem yet. I can’t help it and I don’t know when they are going to come. I presume this is my PTSD. Since our town is in lockdown with COVID19, it makes it difficult to seek help to process this information. The only thing I can think of doing is journal or speak about it as much as I can to let it all out. Is this the correct course? I have no clue. I must remind myself that I have been through two traumatic experiences, which are still fresh, and it will take awhile to work itself out. If I’m raw and honest, and not quiet and shutdown, the healing process can begin.
9. Morning, Afternoon, Night: In the morning, I wake up grab a cup of coffee and immediately sit down and begin to write. After writing, I clean around the house. I take a shower and make sure I dress normal and not in pajamas. I feel energized during this period. By afternoon, I begin to feel restless, and the body aches start to show up. I feel like I’ve exhausted my activities and other things to keep me occupied. When my husband comes home, I feel energized again because it’s another change to the day. About an hour of him home, I find myself fatigued, sleepy, achy and ready for the day to be over. Overall, my worst enemy, the morning, seems to be my best friend because I’m busy doing various things. By afternoon, there are only so many things that can fill the space. I hope when I return to work this will change. I must say, I have enjoyed having my mom come over in the afternoon- it’s the best part.
10. Lonely: I’m lucky that I have full family support and I’m never left alone. I feel lonely that my experience can’t be understood by anyone around me. It’s hard to explain and have that person say back, “I know, I’m have that feeling too”. I have support groups, but I want face-to-face. I think anyone who has been through something traumatic can attest that it’s lonely because no one will ever know your pain, thoughts, or worry. It’s something that you don’t wish on anyone, so the best that you can do with that lonely feeling is reach out to as many people like you that have gone through this. I was excited about a support group held locally, but sadly, that was cancelled because of the virus.
11. Over doing my recovery: This is a short one. I’m supposed to be a lump resting, with a little exercise. I can’t do it! I must feel as normal as I can be which is why I wake up bright and early and start my day with something. Sometimes, I think all of this is causing the extreme fatigue through the day. I’m not giving my body the proper healing time.
In general, I’m experiencing a lot of changes, and I’m sure there will be more to come. The reason why I want to put this out for the world to see is 1) for other people to understand and empathize with me if I seem down 2) for other stroke, and VP shunt individuals to know they aren’t alone. In the coming weeks my nasty analytical side will be in full force tracking all these changes trying to find the root cause. I’m sure it’s simple- you are recovering. That’s not good enough for me. I want to know if there is something else, I could be doing to improve these changes. Moreover, I always wonder if things would be different if we weren’t in lock-down. I would be able to use the gym, go to PT, group therapy, walk around stores and run errands. I think I might blame the virus. It seems easier this way.