As I write this, I am lying in my hospital bed - for the third time in under 3 months. And let me tell you, it doesn't get any easier no matter how often you come to hospital. I still get butterflies in my tummy when I know I am coming here & dread the idea of more time away from "normality". I am back for more plasmapheresis, & although I love feeling so much stronger, I HATE having to be admitted again & the fact that I cannot function as a normal person.
When you first get diagnosed with a chronic illness & have to go to hospital; you get visitors every day - flowers, cards, messages & phone calls. After a while these begin to dwindle (understandable as it seems to be a frequent occurrence) & after 12 years it is pretty much non-existent. We don't expect people to fawn over us & act like we are dying every time we have to be admitted, but please do understand that coming to hospital is never something we would choose to do. It is not a fun place to be. We know what is going to happen & the pain that will most probably accompany our stay. We know what it is like to be away from our family & friends; & we still get nervous about coming in. It hurts when family/friends seem blase about our time in hospital or almost don't care. The days & nights are long here, & every little message or phone call means more than you could ever imagine. You may not get a response from us straight away, but it gives us renewed hope & our heart becomes slightly fuller thanks to your love & concern.
Being chronically ill means you still try to function as a 'normal' person, & then pay the price for it later. Our lives have been changed forever & 'normal' for us is now numerous doctors visits; blood tests (& knowing which vein they should use!); finger pricks; & permanent ports.
It means calling your doctor by her first name & having her cell phone number stored for any emergencies; it means knowing more medical terms than some nurses; & it means hours of research into treatment options overseas.
Being chronically ill means you are covered in scars - each one a reminder of a battle you have fought & won. It means you have had to grow up before your time, but still enjoy acting like a foll every so often.
Having a chronic illness means walking into High Care & having the nurses know you by name; it means never being able to leave the house without your medicine; it means planning for a night away to ensure you are covered in case of any emergency & have the necessary drugs.
Having a chronic illness means your medical savings are finished at least half way through the year - and that's if you have had a good, healthy year! It also means the pharmacist knowing you by your name & having your medicine ready for you when it is time for your script to be refilled.
Being chronically ill means you have had pipes & tubes inserted into your body to help you function; it means the side effects of your meds leads to you needing to take more medicine; & it means you can't simply take over the counter medication without researching it thoroughly.
Being chronically ill means you most probably know how to connect your own heart monitors by now & can probably even attach your own blood pressure cuff without a nurse's assistance.
Being chronically ill means you have probably missed your own birthday party; it means you have probably slept through a Christmas lunch with the family & it means you have been called rude at least once in your life - even by your own family. It means owning more pajamas than normal clothing; & still getting excited when you get given more.
Having a chronic illness means you have to learn to be strong & understand that hurtful words more often than not come from a place of naivety & lack of knowledge. You will learn that certain people always think that they know better - let them.
It means you know how to smile when all you want to do is cry. It means you keep your brave face on until you can be alone & let the tears simply flow. It means you never give up. No matter what.
Fighting every day to stay alive is not easy & of course there are moments where all you want to do is give up. Never lose hope. Surround yourself with happy, supportive people. And know that you are a warrior. And you are amazing.