mychiarijourney

[mychiarijourney]

Not good days

This weekend was absolutely miserable. Friday I felt totally fine until 8pm when my temples caught on fire and it hasn't really let up since. I tried so hard to be present on Saturday, but Sunday I spent most of the day in bed. The times I spent with my family, I was crying intermittently. I just couldn't stop. The stress has made me feel so ill and hopeless. I've barely eaten or slept.

It's Monday. I took Tylenol Arthritis the second I woke up to try and numb the pain a bit. I feel it wearing off. I have to parent Violet solo all week, while we scramble to try and find her a daycare position. I might have some good days. I'll try my hardest to keep it together but it's so fucking stressful. There's nothing I can do. I'm just trying to keep myself from spiraling. The pain always stops. I'll have good days again. I am in pain but I'm alive. I don't want my daughter to have a mother who's mental health is this bad. Who wants to disappear. I want my old life back.

I'm in a bad mental space today but I won't let Violet see me cry. She's seen enough of that lately.

[mychiarijourney]

Good days

I've had some good days lately. Days where the pain was mild most of the day with just a few small flare ups. I haven't had to take pain medication. I haven't held my head on the couch and sobbed. My boyfriend pre-booked a day off yesterday so I could rest, expecting the first half of the week would be miserable but it wasn't. The first two days were wonderful, and yesterday was too. My daughter has teeth coming in so she was crabby, so we spent the day doing things that bring her joy. We had a lovely day as a family. I find myself being so much more present with her lately. I know that my days could just as easily be spent taking endless pain killers and icing my head, so days that I'm not, I truly try to enjoy them.

My morning today was wonderful. I had insomnia but the times I woke up, my head didn't hurt. We enjoyed coffee while Violet played. She and I then took a walk around the block, but she didn't want to walk so I carried my 25lbs toddler for more than half a city block. I'm paying for it now with a pressure headache so bad I want to cry, but I won't. I'm not going to cry today because the first half of my week was wonderful. Perhaps the second half will be too, once this headache goes away. That's something I've learned with my one whole month of experience. The headaches go away. I've had this headache for an hour, but maybe it'll be gone within the next. Maybe it'll last until I sleep, but eventually I will sleep. I'll wake up, and maybe tomorrow will be a good day. I'll plan for it not to be and ask for help if I need it.

I'm just going to keep chugging along and hope for some good days sprinkled in with the bad. I'll try my best to be a good mom when the pain is bad, and an amazing one when it isn't. This condition continues to suck.

[mychiarijourney]

The beginning

I was diagnosed with Chiari Malformation one month ago. It began with migraines. In June, I had horrible ocular migraines that caused visual hallucinations for about a week. It happened once a day, the hallucinations lasted about 30 minutes. They stopped, and I'm a busy stay at home mom to a toddler so I just went about my life. I had migraines in college, I guess they've just come back.

Then the regular migraines began. It started off as once every few days, then once a day, and reached the point where it was on and off all day. Once they became daily, I began having visual hallucinations again, but not like the kind in June. I'd see little black specks floating that weren't actually there. I experienced something called "illusory palinopsia" for about a week before calling Telehealth and being told to go to the ER immediately. That was on August 16th, 2023. That was when I got my diagnosis.

My father died of brain cancer at age 46. I was absolutely terrified that was about to happen to me at age 31. The ER doctor came out with my diagnosis after a CT scan and sent me on my way with a Neurologist referral. I remember holding my partner's hand and saying, "well, it's not a brain tumour and I'm not likely to die from it so it's all good!" with a big smile on my face. We came home to my MIL who was looking after our 17-month-old daughter and happily shared the news. But then reality set in.

This daily pain I'm experiencing isn't going to go away. It might get better, but it's more likely to get worse. There is no cure. I'll have this until the day I die. My daughter now has a mother who experiences chronic pain, and the fear that it could change me became all-consuming. We discussed perhaps sending her to daycare part-time so I can have breaks. I cried endlessly over this news. I had my daughter with the expectation that I'd be an attentive, doting mom who would care for her until she became school age. I'm in my supermom era; keeping the house clean, our daughter fed, helping her learn and gain confidence and grow. I experienced so much depression in my life and things were finally turning around. I was so happy. I love my family so much. Having our daughter made our lives complete. Just the three of us, taking on the world and loving each other.

I'm still at the beginning of my journey, still coming to terms with my new reality, still crying every day although not as often. I have good pain days and bad. I'm still able to care for my daughter and I hope it stays that way for a long time. I've just started back on Zoloft, my neurologist gave me Aventyl to try for my pain. I'm going to use this blog to document my journey and my feelings as I navigate this new life. I am grateful that the pain is manageable with ice packs, rest and ibuprofen mostly. I am grateful to be alive. But I am struggling, and I don't anticipate that changing anytime soon. My beautiful daughter just woke up from her nap so I am going to go cuddle her and tell her how loved she is.