Functional Neurological Disorder/Conversion Disorder

If you need to rest. Do it.

It's okay to rest. The people who love you will understand.

And the ones who don't, well, sod 'em 😉

#FunctionalNeurologicalDisorder #ChronicIllness #Depression #ChronicPain #FunctionalSeizures

Yesterday was a good day, I had a lovely visit with my friend and wife. I did 15 minutes of stretches, ate a bit more and sat by the window. I then had amazing conversations with several doctors and other staff members. Everyone is working so hard to figure me out. They are not only working together, they are also really listening to me, and treating me with so much respect. I don’t feel rushed or disbelieved or misunderstood. The doctors and staff here actually understand all of my complications and if they don’t, they are not scared to say that they don’t and ask for help from other doctors or medical staff. There are few people trained to understand mitochondrial dysfunction, and I am incredibly fortunate to have my doctor in charge be one of those few people. 

I am getting better every day and have so much hope. A few weeks ago I never thought there was a chance I would see Christmas, now, I am dreaming of seeing all my people, sitting by the river, going to the zoo, roasting a marshmallow over a fire, and all the other things I am excited to do.

When I made the decision to come off of all of my medication’s and go for a reset, I knew that the chances were incredibly low that it would work. I also knew I had no other choice, my body was shutting down. It was nearly done when I got here. I did not think that I would make it; those who saw me in the weeks before I was hospitalized thought the same. That picture of me in bed I posted last week was taken by my wife because she was pretty sure it would be the last one ever taken of me. When it was taken I was at the point that I would randomly stop breathing, I couldn’t eat or drink, I couldn’t move on my own, my heart was struggling to beat, I was hallucinating and vomiting non-stop. But my people and my body were too stubborn to give up. So here I am; I’m not better, I will never have “good” health, I will always be disabled, I will not live as long as I would like, and there will always be pain and struggle. But, even more important is that there will be love, joy, laughter, adventure and life! Life is always more good than bad, bring on those silver linings!

Today is a good day and they will keep getting better. There will be set backs and it is going to be very hard work, but I have never been scared of hard work.

#Abunchofrarediseases #AddisonsDisease #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome
#PTSD #FunctionalNeurologicalDisorder #Migraine #Asthma #MastCellActivationDisorder #CeliacDisease #MitochondrialDisease #Trauma #RaynaudsDisease #MentalHealth #Depression #Anxiety #ChronicPain #ChronicIllness #Disability #DistractMe #dying

Find the people who are there for you. The ones that stay when times get tough. Those are the ones you need to hold on to.

It can be really hard to reach out for support, opening up to people and asking for help is something that can be a struggle. But once you have, a weight can feel lifted and you never know, simply talking about it might make you feel better.

#ChronicIllness #FunctionalNeurologicalDisorder #ChronicPain #ChronicFatigue #Endometriosis #MentalHealth #Depression #Anxiety #ObsessiveCompulsiveDisorder

When your lifestyle changes it can be hard to remember it isn't your fault. It's easy to place blame on yourself and feel ashamed of that fact you can't do what you used to, you need help or that your body and mind has changed along with your lifestyle.

You have no reason to be ashamed. You're still here, you're fighting and you should be proud of that.

#lifestylechange #disabledlife #alwaysbeyou #ChronicIllness #ChronicPain #Endometriosis #FunctionalNeurologicalDisorder #FunctionalSeizures #urinary retention #MentalHealth #Depression #Anxiety #ObsessiveCompulsiveDisorder