A day in the life of the Chiarian, Katie Tackett.
I'll start by telling you about my day before it even begins... Starting around 4am, my Ambien wears off and I wake up at least 1-2 times per hour until I am ready to "get up". The problem is, I have to slowly wake up on my own until my BODY tells me it's ready, or I'm in for a world of hurt. One of our roomies, my sister, will let out my dog and hers around 7 am and then they come in and cuddle with me. If I awake too early, my headache is sky rocketed, so I allow myself to keep falling back asleep until 9 or 10 am, sometimes later.
After letting my body wake itself up, the doggies have to go outside again, so I have to sit on my bed for a good while for my head to "recalibrate" so I am not super dizzy and run into walls or pass out. I typically still have to brace myself all the way down the hall and try not to focus on the fact my head feels like it's about to explode. After they go potty, so do I. I then have to find something to eat so I can take my morning medications (Diamox, Indomethacin, Magnesium Oxide, Vitamin B12 and D3). If I have a doctor's appointment, I get dressed and walk next door to my mom's so she can take me and join me for the appointment. If not, and I'm having a good day, I may watch tv, visit with my nephew and mom, or straighten up a bit until I am tired out (around 12:30 PM). Yes, just a couple of hours after I wake up! My mom always asks how I'm feeling and spends a great deal of time with me- running errands, hanging out, and being there when I need her... which is awesome! Especially since my nephew tags along, too!
I usually try to fight the urge to sleep so early in the day, but sometimes I just have to rest, especially since the last few weeks! Today is not a good day, it's a so so day; for example, I am in pain and tired, so I at least brought my Apple TV upstairs so I'm not in my room all day, but I will stay laying down for most all of the day. It is very hard for me to sleep unless I am in extreme pain. Even if I am absolutely exhausted and cannot move, I cannot sleep, so Netflix is my best friend (and insomnia is my enemy). On some days I have things I have to do... I go grocery shopping a bit, to the gym's hot tub for my achy muscles, shopping with my mom, take a bath/shower, but these days are growing fewer and fewer. When I have things to do, I often take Fioricet for the pain and then power through the fatigue. I have gotten good at putting in a "good face", so I've been told. If it didn't symbol me being so ill, I'd have a wheelchair or motorized scooter everywhere we went just because I am so easily fatigued. Getting a handicapped parking pass should help significantly. Unfortunately, I can't always just pop some Fioricet and move on. I can only take it 1-2 times a week or it causes rebound headaches and loses it's effectiveness, so I save it for when I'm really bad.
Bathing is no longer an every day occurrence for me as it totally exhausts me and brushing out my hair takes all of my energy- thank God my hair looks good air dried!! When I do bathe or go swimming it feels good to have my head in the water, but the process before and after is just too much! After resting for a few hours in the early afternoon. I may get hungry, so I eat a granola bar or a small snack. This is when I take another dose of indomethacin. I am usually so nauseous that I can't eat much. Sometimes I forget to eat and take my afternoon dose, which is never a good thing, but memory issues and brain fog are expected with Chiari. I generally go back to resting and wait until my hubby, Michael, comes home. When he gets home, dinner is not cooked, the house is not cleaned, he is not greeted at the door with a warm and loving wife or kids yet like we planned... But instead he comes and finds me usually in bed or on the couch. He then greets me and asks what I'd like for dinner (still a man- wants his food!!). He cleans the house, pays the bills, mows the yard, works a full time job, and takes care of me. He is not perfect, but he had handled this whole situation like a gentleman! Yes he stresses over money... Who wouldn't? But he has stayed by my side through this sickness!
Sometimes we will grab something to eat with my parents and hang out with them, or he will try to make dinner or go pick it up. Michael and I will then hang out and watch hulu or Jimmy Fallon. He usually massages my shoulders and neck to try to give me some relief until he falls asleep. I have a very hard time falling asleep and staying asleep due to one of the symptoms of Chiari, insomnia. So, I take my nightly dose of meds about 20 mins before I'm ready to fall asleep (Diamox, Indomethacin, Elavil, Metformin, and Ambien). I also use essential oils to relax me and help me sleep. I'll play games on my phone until I drift off.
Many of the things I face have to be modified. When I go up a flight of stairs or do anything to exert myself, I get light headed and out of breath. To bend over feels like 100 lbs rushes to my head and it's about to explode! I have problems remembering things, big or small, so my mom and hubs have to constantly remind me of things or what I was talking about throughout the day. Riding in a car can make my joints hurt, so I have to use pillows. I do not do well in crowds with the noise and anxiety... I can "feel" people's emotions. My mom and nephew are typically always with me. It helps so much that my mom can tell when I'm having a tough time digesting my surroundings, and my nephew is a great distracter!! Fortunately I had the appointments with the neurosurgeons prior to completely losing almost all of my energy a few weeks ago. These past few weeks I have been in bed unless I absolutely have to get something done. I thought this would pass, but I think the fatigue is just getting worse. On top of that, I have a head/chest cold (yes I can get that ON TOP of Chiari), so every time I cough my head feels like it just might burst, and that's with Taking Fioricet. The thing I focus on the most is that my surgery is drawing closer and closer and I can't wait for the possibility of relief from these symptoms!!
Sincerely,
Katie Tackett
I'll start by telling you about my day before it even begins... Starting around 4am, my Ambien wears off and I wake up at least 1-2 times per hour until I am ready to "get up". The problem is, I have to slowly wake up on my own until my BODY tells me it's ready, or I'm in for a world of hurt. One of our roomies, my sister, will let out my dog and hers around 7 am and then they come in and cuddle with me. If I awake too early, my headache is sky rocketed, so I allow myself to keep falling back asleep until 9 or 10 am, sometimes later.
After letting my body wake itself up, the doggies have to go outside again, so I have to sit on my bed for a good while for my head to "recalibrate" so I am not super dizzy and run into walls or pass out. I typically still have to brace myself all the way down the hall and try not to focus on the fact my head feels like it's about to explode. After they go potty, so do I. I then have to find something to eat so I can take my morning medications (Diamox, Indomethacin, Magnesium Oxide, Vitamin B12 and D3). If I have a doctor's appointment, I get dressed and walk next door to my mom's so she can take me and join me for the appointment. If not, and I'm having a good day, I may watch tv, visit with my nephew and mom, or straighten up a bit until I am tired out (around 12:30 PM). Yes, just a couple of hours after I wake up! My mom always asks how I'm feeling and spends a great deal of time with me- running errands, hanging out, and being there when I need her... which is awesome! Especially since my nephew tags along, too!
I usually try to fight the urge to sleep so early in the day, but sometimes I just have to rest, especially since the last few weeks! Today is not a good day, it's a so so day; for example, I am in pain and tired, so I at least brought my Apple TV upstairs so I'm not in my room all day, but I will stay laying down for most all of the day. It is very hard for me to sleep unless I am in extreme pain. Even if I am absolutely exhausted and cannot move, I cannot sleep, so Netflix is my best friend (and insomnia is my enemy). On some days I have things I have to do... I go grocery shopping a bit, to the gym's hot tub for my achy muscles, shopping with my mom, take a bath/shower, but these days are growing fewer and fewer. When I have things to do, I often take Fioricet for the pain and then power through the fatigue. I have gotten good at putting in a "good face", so I've been told. If it didn't symbol me being so ill, I'd have a wheelchair or motorized scooter everywhere we went just because I am so easily fatigued. Getting a handicapped parking pass should help significantly. Unfortunately, I can't always just pop some Fioricet and move on. I can only take it 1-2 times a week or it causes rebound headaches and loses it's effectiveness, so I save it for when I'm really bad.
Bathing is no longer an every day occurrence for me as it totally exhausts me and brushing out my hair takes all of my energy- thank God my hair looks good air dried!! When I do bathe or go swimming it feels good to have my head in the water, but the process before and after is just too much! After resting for a few hours in the early afternoon. I may get hungry, so I eat a granola bar or a small snack. This is when I take another dose of indomethacin. I am usually so nauseous that I can't eat much. Sometimes I forget to eat and take my afternoon dose, which is never a good thing, but memory issues and brain fog are expected with Chiari. I generally go back to resting and wait until my hubby, Michael, comes home. When he gets home, dinner is not cooked, the house is not cleaned, he is not greeted at the door with a warm and loving wife or kids yet like we planned... But instead he comes and finds me usually in bed or on the couch. He then greets me and asks what I'd like for dinner (still a man- wants his food!!). He cleans the house, pays the bills, mows the yard, works a full time job, and takes care of me. He is not perfect, but he had handled this whole situation like a gentleman! Yes he stresses over money... Who wouldn't? But he has stayed by my side through this sickness!
Sometimes we will grab something to eat with my parents and hang out with them, or he will try to make dinner or go pick it up. Michael and I will then hang out and watch hulu or Jimmy Fallon. He usually massages my shoulders and neck to try to give me some relief until he falls asleep. I have a very hard time falling asleep and staying asleep due to one of the symptoms of Chiari, insomnia. So, I take my nightly dose of meds about 20 mins before I'm ready to fall asleep (Diamox, Indomethacin, Elavil, Metformin, and Ambien). I also use essential oils to relax me and help me sleep. I'll play games on my phone until I drift off.
Many of the things I face have to be modified. When I go up a flight of stairs or do anything to exert myself, I get light headed and out of breath. To bend over feels like 100 lbs rushes to my head and it's about to explode! I have problems remembering things, big or small, so my mom and hubs have to constantly remind me of things or what I was talking about throughout the day. Riding in a car can make my joints hurt, so I have to use pillows. I do not do well in crowds with the noise and anxiety... I can "feel" people's emotions. My mom and nephew are typically always with me. It helps so much that my mom can tell when I'm having a tough time digesting my surroundings, and my nephew is a great distracter!! Fortunately I had the appointments with the neurosurgeons prior to completely losing almost all of my energy a few weeks ago. These past few weeks I have been in bed unless I absolutely have to get something done. I thought this would pass, but I think the fatigue is just getting worse. On top of that, I have a head/chest cold (yes I can get that ON TOP of Chiari), so every time I cough my head feels like it just might burst, and that's with Taking Fioricet. The thing I focus on the most is that my surgery is drawing closer and closer and I can't wait for the possibility of relief from these symptoms!!
Sincerely,
Katie Tackett