Whats wrong with you?! (About me)

  

Hello lovelies! My name is Lexy and I'm a 25 year old chronically ill girl. 

You might be thinking ''but you don't look sick''! But that's the unfortunate glory of invisible chronic illness's. I might not look it but my body is fighting a war. 

I have a condition called Ehlers Danlos Syndrome. This means that my body isn't held together properly, the building blocks got coded wrongly at birth. I'm chronically exhausted because my muscles are having to do more work than they should, holding my joints in place and what not. Sometimes they can't manage both jobs, and I get full and partial dislocations. They aren't always visible and they don't always  hurt. But more often, I feel something is wrong inside my body! It's uncomfortable, and you'll often see me pulling my neck to one side, or circling my foot. This is to relocate things that have moved wrongly. 

I have a number of secondary diagnosis (secondary meaning, EDS is likely the cause, or a co-morbidity) . 

Postural Orthostatic Tachycardia Syndrome: 

Postural orthostatic tachycardia syndrome sucks. I mean really it sucks. What it means for me, is that when I sit from laying or, stand from sitting, my blood pressure goes hell no and goes super low. To try to stop me from fainting and getting woozey, my heart rate says Ill help you! and starts beating too fast. Unfortunately this just doesnt work and I end up getting very dizzy and needing to lay with my feet elevevated for a while until the symptoms susbside. 

This also means that, my heart is often times, trying to run a marathon simply because I need to pee. Because of the exhaustion and danger that standing poses to me, and many POTS patients, I personally can be often found in my bed trying real hard to recover from an activity or appointment. 

Chiari Malformation

Chiari Malformation is incredibly complex. To put it simply my brain is a little bit in my spine, not my skull. This might sound like an impossibility but I have the MRI scans to prove it! It causes all sorts of neurological symptoms as well as pain, discomfort, poor cereberal spinal fluid flow, headache and a lot more. 

The only treatment is surgical. The only option is brain surgurey. 

Cervical Instability

This is the reason you will often see me moving my neck in a funny kinda way. I am constantly in pain with my spine, but my neck is particularly painful. I have to relocate the upper levels of my neck several times a day. The option for this is a fusion surgrey that would hopefully be done at the same time as the Chiari Surgery 

Complex Post Traumatic Stress Disorder 

Complex PTSD is a mental health condition in which previous traumatic incidents cause problems in my day to day life. For example, something might trigger an attack, and I will be able to hear the cruel words of my second husband. I often get stuck in loops after a trigger, where whatever I am experiencing is all I can hear, see, or think about. Complex PTSD is difficult to cope with, manage day to day and treat. 

Borderline Personality Disorder (Emotionally unstable subtype)

So, first of all no I am not crazy. Im simply a little up and down for no seemingly obvious reason. Stupid things can trigger this horrible mental health condition. I can go from super happy to depressive mood in a snap second. 

I manage this condition with a selective serotonin re uptake inhibitor, which helps minamise the depth of my depressive moods. I cope with the rapid cyclic nature of this condition with meditation and analyzing behaviours and controlling my reactions. This may not be right for everyone.