January 2021
Well, Happy New Year everyone. I can't believe it's the year 2021. During January, I wanted to wait until the end of the month before I wrote another passage. I was hoping to have something exciting to discuss with you all. But, I was so unmotivated to write about no improvement or new symptoms popping up. After much thought, I was thinking about the people who might be reading this who are also dealing with FND, depression and/or actually any chronic illness. I thought that maybe with them seeing that I’m not giving up and still wanting to fight and spread awareness would help push them to do something for themselves no matter how big or small. So this is for all the fighters out there.
Since being hospitalized in December for 12 days due to an increase in non-epileptic seizures, I’m still not fully back to the way I was prior. I’m spending much of my time in bed either having passing out episodes, paralysis, seizures or recovering from all of those. If I was able to get to the point of using a cane to walk, days like that would be so few because I would have another episode which would put me right back to bed and not walking again. It’s like I’m living in repeat day after day with not much relief. Life gets really old very quickly. I feel like my muscles are just melting away since I’m not able to even attend Physical Therapy due to extreme fatigue, lack of movement and frequency of episodes. I just wouldn’t be safe going to Physical Therapy, so I started to do some band or weight exercises from bed on “good” days. It’s really important to push yourself even if it’s just a few times a week to work out in some form. Any movement is better than no movement in the long run. But when you are dealing with the lack of motivation it can be extremely difficult just to get started. I have tried to get my kids involved with me on certain days to hold myself accountable to do it. On some days, I will leave the bands on the bed next to me so I’m constantly seeing it and I will end up picking it up because of the ease. Even the act of taking a shower can be so taxing of a task that I will put it off longer than I should. I know, it’s gross but the struggle is real folks.
Anyone with FND knows that we must see a lot of different doctors for our care. In January, I luckily only saw three doctors for care. I saw my Neuromuscular Neurologist who felt I could end seeing him and go back to my Neurologist who focuses just on seizures. So I will have to schedule an appointment with that doctor in the near future for guidance/treatment. I had my three month checkup with my Movement Specialist who is my main doctor who has an expertise with FND. She expressed that with every one day I spent in the hospital it takes three days to recover. So I am still in recovery mode for the whole month of January. Lastly, I saw an Electrocardiologist to look more into my passing out episodes that have been happening a few times a month followed by paralysis and/or a seizure. He wasn’t sure if my episodes were cardiac related or FND related. The holter monitor that I had in November/December for several weeks was pretty normal for the most part. People with FND can have drop attacks/passing out spells, so it could just be another lovely FND symptom for me to enjoy. He prescribed me a Beta Blocker to try and to see if I have fewer episodes just in case. He also recommended that I do another Tilt Test to see if I pass out which would allow them to record my vitals during the episode to see anything abnormal will show up. My last Tilt Test was almost twenty years ago in which I passed out during. I may hold out on the test until I’m stronger, because if I have a seizure during the test they will call 911 and off to the hospital I go. Then it would be a downward spiral for me from there. For now, I will try the Beta Blocker and hope it works. I slowly started the medicine and after two and a half weeks I’m at the full dose. However, this past Friday I started with some new symptoms. I have become very paranoid and had obsessive thoughts. Friday was very windy and I kept thinking that the trees were going to fall on my room and I just had to leave. I felt such an uneasiness in my body which made me feel very restless. I tried getting up to walk out of the room and started screaming. My husband had to hold me down to keep me from escaping. A day or two later, my husband ran out to pick up the groceries. I was playing a board game with my 9 year old. I had the urge all of sudden to go for a walk. Lucky I guess for me I was able to walk that day and out of the house I went in my PJ’s and slippers. I got past my neighbors house and my son started calling for me. There was a part of me that knew what I was doing was wrong and I stopped to listen to him. But, there was a stronger sensation making me to keep going. Where was I going? How can I even think I can get far in my walk when I can’t even ride an exercise bike for 5 minutes. I luckily turned around and walked back in with my son realizing I was in the wrong. My husband returned shortly after and boy did my son quickly tell on me. So now, my husband of course is scared to leave me on my own. Earlier this week I felt as if things were crawling on me and kept scratching all over my body in panic. Yesterday, I felt restless again and thought maybe I could ride the bike in order to release that feeling. After only a minute I passed out on it, then had a seizure, lastly kept attempting to get up to go out of the room but wasn’t at a walking level and was very unsafe. What is going on? I sent messages to my FND doctor and to the Electrocardiologist about these symptoms. The only new change is the Beta Blocker, could this be causing it? I hope it’s that easy. As of today, I stopped the Beta Blocker and hope to not have anymore craziness coming from me again. I sure hope it’s that easy and nothing more going on. I’m becoming a full time job for my poor husband.
I wonder often when will this be over, when will I get my life back, or is this going to be my life. However, I have to remind myself of how far I have come since the beginning of my diagnosis even if I think what I’m currently dealing with is hard. I must remember that I was in a worst place and I’m just having an increase again. I have to remind myself that I am loved by my husband, my kids adore me and I have such great friends. I have surrounded myself with positivity and love. There is no space for negativity and hate when it comes to healing. We all deserve to be happy, it’s just a matter of how do you want to be happy, at what cost.
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