They say time flies when you’re having fun. Well I’m not sure I’d necessarily say the past 2 years have been fun but they have certainly flown. 2 years since I was diagnosed with my DVT.
It’s definitely been an interesting 2 years. First of all finding out about DVTs in general and how to cope with one then finding out I have a genetic disorder that makes me more susceptible to clotting and how that affects my future life. Then ending up on my newest journey of potential Cushing’s. Being a bit of a science geek it’s been fascinating to learn about these issues although very scary at times with them both being potentially fatal but life is what it is and you just get on with it.
A new normal has to be learnt to help you to cope. I found that easier with the DVT because although that seems more immediately scary with the “it could break up, go to your lungs/heart/brain and kill you at any moment” scenario it didn’t affect me that much. Ok so I had my 6 weeks of reduced mobility and having to use crutches but generally speaking I was able to do most things. I could walk and cook just maybe took longer than usual. The potential Cushing’s, whilst initially feeling less scary (if untreated it can kill you eventually) is far more frustrating as it affects so much. I haven’t had a proper night’s sleep in I don’t know how long, I feel irritable all the time, I have days I can barely walk out of the flat or have to get my boyfriend to do something as simple as dish up the food from the oven onto a plate. I am a quiet person anyway and hate talking even more now due to memory loss and struggling to find words. Got a sore throat? Could be part of Cushing’s or just a regular cold, I can’t tell and then I feel like a hypochondriac.
One good thing to come out of this journey though is you truly find out who your friends are. Those who get ‘bored’ of your conditions after a couple of weeks are not friends. Get rid of them from your life. Ok you don’t need to keep rabbiting on about your diseases all the time or have your friends constantly asking how you are or do you need something doing but just having them be there, check up on how you are or if you need some help or just nod and smile and tolerate you when you have a “oh my god I’m so ill” moment, those are your real friends. The ones who’ll do something simple for you and make you laugh. That may not understand but try to. The ones that put up with you!
So all I can say to those people in my life: Thank you. It means more than you will hopefully ever have to understand.