Surviving a stroke can have many different looks to it. One may have physical disabilities, mental disabilities, speech disabilities or even all three. These can also look different to everyone who survives a stroke. years ago I had a stroke. I was only 42. I know, so young, right? However, this stroke has affected me more than I want to admit. Not only has it affected me, but my friends and family as well.
Added to a stroke, I have Chronic Fatigue, Fibromyalgia, Afib, and on and on. What is a person to do? Lay in bed eating bonbons? HA! If only… NOT!
Thank God, I regained much of my physical use of my body. I have roughly 50% strength in my left side. (This is the side that the stroke affected). I have some mental issues and cognitive issues, and even speech problems if I don’t get enough sleep. That seems like a lot right?
Yes, I know there are others who lose the use of their legs, arms, speech and even more. However, when you have a stroke, your life is no longer directed by you. It is directed by the limitations that were put on you from the stroke and how it affected your mind, body and yes, even your soul.
Why do I say, soul? Because, you will either turn to God and the comfort that He provides, or you will turn away from Him in anger. Ask me how I know. Anger is one of the “steps” that survivors go through when recovering. I consider that there are many different “steps” to go through, much like an addict or alcoholic.
While I am unsure how many steps a stroke survivor will go through, one of the first is asking “Why me?”. I was young, had none of the “Signs of possible stroke”, except being overweight. I was moving, caring for my family, working part-time, completing my doctorate degree, coming out of a major depression and liking myself and my life.
Then BAM! I am in the hospital without the use of my left side, being rushed to test after test, losing my ability to speak and then being life-flighted to the Stroke Center in Baltimore. This was a petrifying time for me. My husband was so worried, we didn’t know what was going to happen and our life just STOPPED.
While in the ER waiting for the life flight helicopter, I asked (by miming since I had lost speech at this point)my husband to hand me the Kindle I always carried. I pulled up a note app and started to furiously type notes to him on what needed to be done. I told him to call my mom and ask her to come and help. I was listing out things for the kids, the dogs and household things that needed to be done.
Keep in mind we had just relocated to Southern Maryland a year before and had not really made any close friends we could call on to help with the kids. So when they loaded me on the helicopter, I told my husband to go home and take care of the kids and household. My first priority was to make sure that they, including my husband, were taken care of.
My mom was on the road, and I was being loaded in the helicopter. I sent my husband home and told him not to drive all the way to Baltimore. The kids had school the next day and things needed to be done. I was scared that I would never see them again. When you can’t speak, and your body does not do what you want it to, the mind is functioning. I was screaming inside my head that I was not ready to leave this world.
I was already hindered by Fibromyalgia and Chronic Fatigue, migraines and other issues. Now at this point, I felt like I was fighting for my life. How was this going to affect everyone in my life, including myself? I do not ever want to be a burden to others but I was not ready to leave my friends and family either.
So I left it in God’s hands. It is very difficult not to take the worry back, but I was not able to think of anything else. I was on the life flight helicopter, the EMT was telling me to relax, and we started flying onward to Baltimore. I was scared out of my mind. I sent my husband home, there wasn’t much he could do, and I was going to a Stroke Center many miles away.
I was in the helicopter, and not able to speak. I did not have my Kindle to type on, so I just had to deal. The EMT in the back with me was telling me to stay calm, then he said that the airports had stopped air traffic so we could fly through their airspace. Was this stroke. really that bad? Would I ever regain any of my life back?
When we arrived in Baltimore, there was a team of doctors and nurses on the roof waiting for me. I was wheeled into a room and had a team surrounding me and not telling me what was happening. I could not even ask. I was put in a room and of course, the rotating people started. You know the one, blood pressure, temperature, phlebotomist, and any other person that needed fluids or to poke and prod me.
About an hour into this nightmare in Baltimore, I started to speak some. I was slurring, but I wanted my speech back. Every time someone came in, I struggled to ask them questions and talk to them. I was thanking God that I could at least communicate. I was several hours into the stroke at this time. The local hospital gave me some medication to help break up the clot. It was vital to get to this medication within an hour and it was just at 45 minutes or so for me.
Ok back to Baltimore. I was struggling and trying to make it known that I had to go to the bathroom. No, the nurses said, I need to use the bedpan. I could not get up until 24 hours had passed since I had the medication. Ok, ladies, you will know what I am talking about, gentlemen, just bear with me.
Using a bedpan was not an option, trust me I tried. I froze. I did not want anyone to have to clean me up. I needed to potty so bad, I asked for a catheter. No, they said, to much risk of infection. An hour later, bedpan useless, asked for a catheter. No luck. Two hours later, I asked for a supervisor, the head RN came in and I told her I wanted a catheter, put me on an antibiotic, but a catheter was a must.
She finally relented and when they inserted the catheter, I immediately filled up one bag, and they had to change it before the nurse even left the room. Hmmm, they said, guess you need to go. REALLY? No DUH!
Ok, so back to the story. The doctors are coming and going and at some point, my mom showed up. I can’t tell you how much better I felt when someone was there with me. It does not matter how much someone tells you to go home, they really need someone for support.
The next morning, the doctor came in and they were counting me down by hours. It was about 18 hours after the stroke. I could not move, my back was killing me, they would not even let me lift my legs. I was frustrated because they could not see any reason for my stroke. All the tests came back negative and they did not see anything on the x-ray, MRI or whatever else they did to me
I was starting to gain feeling back in my left side, my speech was improving rapidly and my mom and I were trying to figure out where do we go from here. I was really having a difficult time laying flat and the catheter bothered me. Something about others taking care of my bodily functions… no that really makes me uncomfortable. I was willing to hop to the bathroom if needed.
Around 20 hours or so, the head doctor of the Stroke Unit came in and started talking about how they saw no stroke on any of the tests and that they were unsure what happened or how. Either my mom or I asked if there was no stroke then why did I lose my entire left side of my body and my speech?
The doctor said that they were unsure, and it was very possible that I would have more of these episodes and that it would then be up to me to decide whether I go to the hospital or not. WHAT!!! He said that 24 hours was a general hour mark for recovery from a TIA stroke. I thought my mom was going to vault over my hospital bed and strangle that doctor.
He told me that he was going to release me with orders to see a physical therapist and speech therapist. I had gained a lot of my speech, but not all of it. It was still difficult talking and getting understood. When the doctor left, I felt like I had been slammed on the floor. I was at one of the best hospitals in the country for a stroke, yet they have no idea what was going on in my body
You can’t tell me that I am the only one who this has happened to. There was no way. Yet, no one could answer the questions that I had. 22 hours and I am released from the hospital and on my way home with my mom. My husband didn’t even make it since they were releasing me anyway.
I don’t remember a lot from those next few days, but what I do remember is that my family rallied beside me and I was grateful for that. There is so much more to this story, but this post is long enough as it is. Needless to say that having a stroke, a TIA, or just an episode that mimics a stroke is life-changing for the person and everyone around them.
While I did recover most of my body functions, I did not recover 100%. It is now 5 years later and still not 100% and most likely will never be my former self. I have lost some go my manipulative skills, cognitive skills, memory and strength among other things.
The biggest thing I can tell you is that when one is having a stroke or being a survivor of a stroke, the world for them and you changes. Understanding how to help, what to look for and just supporting them is vital. Come back and learn more about how to help those who are going through a medical crisis.
Leave your questions in the comments below and I will try to answer them and explain from a survivors point of view.
Until next time, butterfly hugs,
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