mybodyhatesme

I have just had (one of my) diagnoses changed from temporal lobe epilepsy to FND after 9yrs. I'd never heard of it but it seems to explain many of my symptoms/,episodes better than epilepsy incl. Non-epileptic seizures, paralysis and weakness, trouble speaking, confusion, delirium, hallucinations, blackouts, insomnia/hypersomnia, chronic migraine/Intense headaches, vision disturbance and others. I was told this is linked to my C-PTSD somehow but that the symptoms/episodes are real and not 'All in my head' or 'faking it' (which was a relief because that's how they've been treating me).
I don't know what triggers symptoms for me and they weren't very clear about treatment/management of symptoms. It was like once they determined it wasn't epilepsy they didn't care except to say it can take many years to learn to manage symptoms and 'sometimes CBT helps'. That's not exactly helpful when I'm on the floor unable to walk, or coordinate my hands or speech enough to call for help. I'm even more afraid to leave the house in case something happens while I'm out. #FND #FunctionalNeurologicalDisorder #mybodyhatesme

I just got back from spending 8 days 7 nights in Oregon, with my sons Grandma. It was a wonderful trip, showing him where his dad had grown up, and spent most of his years (I lost him November 8, 2012, when our son was just 4 months old, but that’s a different story I might share later). It was so much fun, for the first few days. Then came the days of putting on my brave face, knowing that I would feel horrible very soon. For the last 3 days my heart rarely went below 115, and I was so exhausted, I tried my best to explain my problems, and fears, the best way I could, but I’m so used to just leaving out the worst of what I was feeling. Like this, instead of saying I feel like my skin is falling off, my heart wants to jump out of my chest, and my brain feels it might explode, on top of every joint in my body wanting to scream, I said, I have tingling uncomfortable skin, my head is hurting a bit, and my heart rate is having a little issue. I don’t know why I downplay what I’m feeling to everyone. I’m finally getting to the point where I can tell my doctors the truth, for the most part, but I still can’t fully say everything out loud. It’s like, if I ignore it long enough it might go away.

Haha.

It’s not going away. It’s not going to disappear. I finally got the new official diagnosis, and I thought it was going to be small fiber neuropathy, but it’s officially also autonomic neuropathy.

Could I have lived my life differently, and not gotten these extra Illness’? That is what I feel I have to figure out, and research, because every doctor I’ve seen, says all these extra syndromes are stemming from EDS. I have two kids, my oldest is 13, and I believe he does not have it, but my youngest who is 7, I believe does. Everything I’m reading so far is telling me there are ways to treat your body, to have better chances of not getting the diagnosis’ that I am getting, and I’m hoping my baby doesn’t. I refuse to give up hope, and refuse to stay silent about it anymore. He deserves to live his best life, and that includes his adult years.

Sorry this one went so random, but that’s me! My brain is random, and works in such mysterious ways! Here’s to hoping tomorrow is better than today, and love to all my warriors out there!

#EhlersDanlosSyndrome #LivingWithPOTS #ChronicIllness #InvisibleIllnessAwarenessWeek #SleepApnea #ChronicIllnessEDS #PosturalOrthostaticTachycardiaSyndrome #SmallFiberNeuropathy #AutonomicDysfunction #AutonomicNeuropathy #nervepain #mybodyhatesme #loveyourself #Randombrain

I feel like my body is at war with it self and my mind cant take it . And i know im alot more depressed these days with losing my sister in December and my health just slowly going down hill i feel like i dont know if im coming or going and i dont k ow what to do anymore . I dont want to die thats for sure. Im just sick of being sick and im always so tired like all the time to the point its hard to even write this . So far it has taken 30 min to get this far because i can focus anymore. I just feel hopeless and alone right now like no one understands or even trys and i hide my pain 90% of the time because when i try to show it i get one of to thing some people treat me like im broken and the other more less tell me to suck it up . So im just lost and alone in my fight that im so over fighting. Thanks for all who read this i just needed to vent some.
#CheckInWithMe #thepainisreal #fibrosucks #gpsucks #mybodyhatesme