Syringohydromyelia

Yesterday I had the worst headache of my life it started at the back of my neck and lead to my eyes. No matter how long I rested in a pitch dark room my head hurt to the point I wanted to die. I didn’t actually want to die, however in the moment I felt so desperate for the pain to go away these thoughts kept creeping up on me. Mind you I have a huge appreciation for life because my best friend was murdered & I know he would do anything to be back on earth. The pain just gets so debilitating & when I get hungry but I’m too weak to do basic survival I fall into darkness. At the time I couldn’t even look at my phone screen on the lowest brightness level, it was so bad. I was extremely nauseous and was puking too. That same day my doctors office called and I started bawling my eyes out when the receptionist said my neurologist can’t see me until January. With my legs feeling like wet spaghetti, my massive headaches, syncope and my trouble swallowing certain medication and food, I thought he’d be able to see me but wait times truly suck. I woke up with my head still hurting it’s something that I’m learning to live with. I read somewhere that Chiari Malformation & Syringomyelia are like a box of chocolates you never know what you’re gonna get. It’s so true because each day I never know what symptom I’m going to get. The silver lining here is no matter how badly I’m suffering, I’ve found a way to be extra kind to all beings. Compassion goes such a long way, finding out I have rare illnesses later on in my life has really made me be extra empathetic because we truly never know what battles others silently face. I went over 20 years not knowing what was wrong with me, so I never judge a book by its cover. To anyone suffering mentally or physically please know even in those dark moments where you feel helpless and alone, do know you’re so loved & things do get better. Maybe not today or tomorrow but it does happen. The reason I know this is because at one point I was in my darkest moment ever and I survived. So never forget your strength and if you ever find yourself forgetting, read this and tell yourself I’m strong, I’m worthy & this life it is mine to conquer.

#ArnoldChiariMalformation #Chiari #ChiariMalformation #Syringomyelia #Syringohydromyelia #PanicDisorder #SuicidalIdeation #ChronicIllness #SpoonieProblems #ChronicPain #Spoonie #CheerMeOn #LifeLessons #Bekind

Monday I was in the hospital because I was having trouble breathing. I was hooked up to this mask that blasted mist into my mouth and nose. Fast forward to Sunday almost a week later my breathing still isn’t the best. Thankfully I see my doctor tomorrow but she must think I’m crazy constantly coming in worse and worse with a multitude of symptoms. Last time I saw her I was complaining of my legs feeling like wet spaghetti ( which they still feel this way) however this time I can add in trouble breathing to the mix. It’s hard to tell whether my trouble breathing is from anxiety, my illnesses, if my food is getting stuck in my airways due to my trouble swallowing or if it’s just a chest infection. It’s hard not being in tune with my body anymore. I have a feeling she’s going to tell me check myself into the hospital across from her office, which is more equipped to help me compared to the one I went to last Monday. I can’t help but worry because if the hospital suggests emergency surgery I have no support, nobody to help me after & no healthy and safe place to recover. I want to bawl my eyes out but the tears just won’t come out, this is likely attributed to me being told big girls don’t cry my whole life. However I am learning it’s okay to cry and when I’m ready it will happen.

I’m so thankful to the mighty community y’all are so supportive and kind. It really keeps me going & I appreciate y’all with my heart and soul.

#ChiariMalformation #Syringomyelia #Syringohydromyelia #ChronicIllness #ChronicPain #PanicDisorder #CheckInWithMe #TheMighty #ThankYou