Wednesday, 28 May 2014

Bed View

Some nights I go to bed and promise myself that in the morning I am going to get up and go out and get things done. But I often break that promise. There are mornings on my days off that I do nothing but lie in bed. It feels very lazy, and sometimes I feel guilty. But it's also very peaceful. I can hear the day starting all around me. I feel my joints gently throb. Pain isn't always something that makes you suffer. In fact, it can be the only thing that lets you know you are alive when the world is cold and numb. From my bed I can look out the window and see the world go by. It doesn't go by without me, though it can feel it. I'm still a part of it, but today I choice to watch peacefully as I rest so later I can join outside.

People often call me a homebody. However, this is far from true: I really love to be out and about. There are times I dread coming home, wishing I had time for one last adventure. But it would be no fair to my body to overwork it. I need to rest. People don't realise I'm exhausted a good amount of the time and drag, but it doesn't mean I want to stay home. I want to be out experiencing things. Even just watching the world.

I am a lot of the adjectives people use to describe me. I am lazy- after a long day, all I want to do is lie down. It's my want that wins, not my knowledge that I am capable of going on to do more. I am a homebody; if you're home enough, that is what you become. Your desires do not change that. I am very quiet, though I feel like I never shut up: I let people forget me, and even when I call for them I never raise my voice to get their attention. But I know one thing: I am not disconnected. I am just as part of the world when I watch from bed. Taking care of yourself is not isolating yourself. It's being active in your life.

Wednesday, 21 May 2014

Where I've Been

Where have I been?

Right here! I've never left, I've just been less active. I haven't participated in social media nearly as much or even written comments on some of my favourite blogs. If you emailed me, I still responded like usual. But I'm not up for communication at the moment. I haven't for a long time.

I'm not tired of all the lovely people on and off the internet. In fact, I miss them a lot. I just haven't felt up to writing. I haven't even been texting with my best friends as often. Even to type is tiring and all I want to do is lie down and stare at the screen. But this isn't even bringing my energy back. I force myself to take a long walk at least once a week (but usually more) but it hasn't helped (nor made it worse so I continue to get out for a minute). I really enjoy being out too, I wander through stores and bring home coffee for my mum and I. But afterward, I need to relax and I end up lying down for the rest of the day and sometimes go to bed early. I always mean to write but I'm just so tired and any energy I do have for writing goes to school work.

Being chronically ill is so much more isolating than people would imagine. Not only do you feel so different from other people who seem to have no end to their energy, sometimes you're just too tired to communicate with the people who get it. Though electronics do make it easier, it can still be a struggle. Pain and fatigue can affect your mind and thinking clearly some days can be hard, forget writing. The physical process of typing can be a lot to handle.

So, please forgive my absence. I just don't feel good right now. I don't know when I'll feel better, either. It's so hard to tell what's going on right now: Arthritis is kicking my butt, my kidneys are kicking my butt and even my GI system is kicking my butt at the moment.

Friday, 9 May 2014

An Open Letter to Med Students

To Students Pursuing Medicine (be it nursing, doctoring or otherwise),

I think the choice to go into this field is great- you must really have dedication and care for others. That's wonderful, and I say that very lovingly, not sarcastically. I'm even a little envious of you because I fancied the idea of becoming a medical professional when I was younger and still have a medical sweet tooth- I love the reality shows set in hospitals. I know you can do it, and you will be great in what you pursue. But, as a professional patient, I ask for you to learn some things and try others.

I want you to try and put yourself in your patient's shoes. Think of how you would react in certain situations- and no, you would probably not be as calm as you imagine. I know it's easier to separate yourself from your patients, but do this at least to understand the way your patient reacts to your words. There are tears, held back sorrow and anger, frustration, guilt, confusion and feeling lost, and you should not make your patient worse by not understanding that some things are hard to take, even things that wouldn't seem it. Know that your patient with a chronic illness, especially those newly diagnosed, is going to mourn their health and is going to go through the stages of grief. It's perfectly normal, do not make it worse by telling them it's not a big deal or it could be worse. They know that. They can't help being upset that their life has changed.

Please educate yourself on autoimmune diseases. Not any particular one, but generally. Learn how they work; you'd be surprised how many times I've ever explained how my disease worked to doctors and nurses. Autoimmune diseases go undiagnosed for years and the results are catastrophic in some cases. Please believe your patients symptoms and don't dismiss them: Fight for them! Surprisingly, patients  need you! Don't hate the patient that brings up a disease that fits their symptoms. I promise you, they are probably not a hypochondriac, they are probably just tired of their symptoms and of those symptoms going neglected. It's hard to be sick when no one believes you. Fight for your patient, you may be the one who can give her back a normal life when she's suffering in silence.

I highly recommend you become involved in a patient advocacy group. Your patients will love it, and will have a higher respect for you. They will know that you 'get it.' You will gain insight and information you would never imagine: You may learn ways of better helping your patient. You will learn what your patient really goes through: That they're a normal person who is constantly battling their disease and trying to live their life. You will find priceless things that medical journals will never tell you.

Thank you for deciding to pursue medicine- we need caring people like you in this field. It's going to be hard but worth it. You don't have to take my advice if you don't want to, but I want you to know that many chronic illness patients feel neglected, abused and lied to by the doctors and nurses who work with them due to the invisible but degrading nature of their illness. If you take anything from this, please take that you need to care for your patients- don't let them suffer. Please fight for them.

Best of luck,

The Girl With Arthritis