Thursday, October 22, 2015

My New Life as a 90% Normal Human Being: London

Since my move to London, I am entirely positive I have experienced every emotion one (semi) stable person could ever experience. My days have spanned from desperation, frustration and anger to overwhelming happiness to the point of tears.

Regardless of the emotions, this transition seems to be a very good move for me. Admittedly, I am overwhelmed. I am overwhelmed by anything and everything. When you go from literally laying on your back, stuck in a house by yourself for 2 years in the middle of nowhere to starting a masters program in a new country with old and new friends, semblance of a love life and everything else that comes along with it, things tend to be overwhelming. I can't deny between moments of pure bliss have been complete panic attacks and existential crises. But I think any "normal" person with my given conditions (both general and medical) would.

But, none of that matters. I am grateful. I am grateful every time I would out of my gorgeous flat and turn a corner and find myself among some gorgeous architecture or a museum I've never seen before. And I am proud of myself that I got this far. Reflecting on the last two years has not been easy. Rehashing every dark thought I had previously assumed I buried and repressed has been forced out. Turns out I'm lot less together than I thought I was. My doctors have been spectacular. Yes, doctors--all 6 of them. One for everything. Did anyone know that's not a cheap thing to do here...casually have 6 private doctors? Turns out the NHS does not cater to the chronically ill.

London is clean, quiet and (aside from not being able to ride the tube) let's me live at my pace. I don't feel hurried like I did in New York. People are generally friendly and open-minded/progressive about disability.

I feel like I also need to mention the support I've received not just from school, but specifically the people in program. My course leader suggested I share my story with a few people, so I posted my Huffington Post article within our own Facebook group. The feedback has truly humbled me. No one pities me, puts me on a pedestal, or a freak--I am just treated with respect, like a normal human being and, psychologically, that has made a big difference. No one cares (in a good way) that I am disabled- I am just part of the group. Not always feeling the need to explain and letting people just accept me the way I am has been such a relief.

Regarding my pain, there has, of course, still been flares and they never come as a good time (but then again, when is a good time?). But, now I have a handy bag of tricks for literally everything and it's not so bad. My doctors are prescribing all my meds. I am working out my injections. I have had some interviews/meetings with some MAJOR companies. I am also going a group project related to disability, so of course I will be talking about that when it's all done!

Sometimes, I can't deny that I am even astounded by how far I've come. I was just explaining to another person in my program that 2 years ago, I couldn't sit in a chair for more than 10 minutes without bursting into tears from pain. Now I am sitting in chairs for 8 hours, maybe not every day, but I'm getting there. My life has come to as close to "normal" as it can and I am just enjoying it. Of course I am still and maybe will always be somewhat in pain all the time, but now I am making it work to adapt to my schedule and not the other way around. Tomorrow is a sushi party with a few girls from my program (+Cards Against Humanity and Twister---which is made for EDS, FYI), Saturday possibly a date and Sunday is brunch with an old London-born FIT friend.

Once I get a few big projects out of the way, there will be more time to write and more to come on HuffPost. I have so many more tips and hints. I think I have enough information to right a novel at this point...(publishers, feel free to email me.)

All for now, 2:40AM.

xx, E

Friday, October 16, 2015

Dysautonomia International Research Update: POTS, EDS, MCAS Genetics

Dysautonomia International Research Update: POTS, EDS, MCAS Genetics

Hi guys, here's an amazing video from someone at NIH with an update on the link between my now, 3 diagnoses. It has been great here so far and I have been insanely busy acclimating to everything but it's all good news and I promise soon to update you all on what's been happening!

xx, E