Sitting on a chair in a doctor's office, crippled by pain, after few stints in the hospital, two whole months on powerful antibiotics, I wanted an answer and to be rescued. Of course I was healthy before, nothing really hurt me, I was young anyways, just 24, vibrant I thought and looking forward to my life.
Sitting on that chair I suddenly realized maybe I didn't know much about life or who I really was.
And the doctor did help me - to start a new journey - as he said with a faint smile that I have lupus and that's a chronic disease, they don't have a cure but there are treatments for the symptoms. .
My normal self was a very collected one, pessimistic, ( no, actually I liked to think I was an optimist but now I know I was a pretty negative person) cold, distant and not at all open or at ease with others - I burst into tears like someone just pushed a button in my heart. Instantly. Forgetting the shame that I could be considered weak. I cried even though I had no idea what lupus was but I think I cried of relief knowing WHAT it was, not being the crippled one for nothing, the no-name illness.
And because I was honestly scared.
After sitting on that chair my life continued through pain, steroids did help but not a huge deal, at least my best friend wasn't Ibuprofen anymore. And thank God I wasn't having a shower every two days when I was receiving my intramuscular pain killer from the nurse... I could walk now, raise my hands to tie my hair ( just about), eat without help, take care of myself... it was just that sometimes I needed a stick to walk and the nights continued to be awful but I could see a way out.
I thought I did. Actually I become determined to overcome this disease. And heal.
What I started doing I suggest to anyone having a disease to do. Don't listen to what others say to you, be your own "mini-doctor", you need to know everything that you can possibly imagine on your disease. I've learnt to understand the disease, the blood tests, the DNA tests, the changes in them, the changes in my body, the medication, the treatments, the possibilities and so on. I am suggesting you to become a walking dictionary. Take a virtual PhD in the disease you have.
I've learnt you cant receive a statement from your doctor regarding a change in your treatment or something that will be performed on you without you agreeing to that and knowing exactly what it is and what it implies on short and long term. I would suggest you not to consider the doctor as a superior being that knows best and is not to be asked questions. You pay them and the story its about you
I paid my 6 months of chemotherapy and I had a doctor that was refusing to explain anything to me, I didn't matter, he decided. And he behaved like a true asshole. I was emotionally fragile so honestly I hated him.
That's when I learnt everything about lupus and more and I questioned everything. He didn't like it but guess what, we are talking about my body.
I know lot's of people, friends and even family members that know close to nothing about the disease that plagues them. I find it extremely important to be in the loop, aware, to be able to question decisions. If you are not part of the decision making who are you giving the responsibility of your life? The doctor only?
Let me say it black on white : stop doing that my friend. It is your body, your life and health. If you are not responsible guess what that makes you ? Yeah, irresponsible.
And I've learnt its necessary to listen to what the body says to you. After all its the body against you here, isn't it? That's like you and against... hmm... you !
What shocked me a lot was someone asking me many years back if I felt my disease creeping on me.My answer was that no, I didn't. You know what that guy told me? "- I'll be damned, you are thick ! You didn't see it coming? In whose body where you living if not yours?!"
Yea, that statement annoyed me big time. But then months later he added that the body needs to be listened to, and he taught me to try daily to pay attention to my body, to every single muscle twitch and every pain. I started doing that and it took me months and years of exercise but now it is a natural attention process, I know when my body is not at ease and something hurts, I am aware, conscious of my body.
So my two rules of the day :
- rule one. You need to seriously learn the insides out of the disease that you have now. That means everything you can find about the disease, the treatments, the possible medication, the side effects of medication, the interactions with other diseases and medication, how is safe to be weaned off lupus medication, especially steroids, about blood tests and so on. Don't leave it to others. Don't be in your doctor's office like a Chinese person that doesn't understand an English speaking person. You have to be able to have a two way conversation with your doctor and to ask serious questions. In the end its about you and your health.
- rule two. Pay attention to your body and you will soon notice it has its very own language. Your body tries to speak to you but we are so used not to hear anything else than our repetitive thoughts. Every day you should aim at least for few minutes to pay attention to every muscle and pain and itch in your body. Just feel yourself without wanting to understand what it means. You should try to dedicate few minutes every day on a continuous base. OK, you will forget for few days or weeks, then you will remember the exercise and start again. Its OK. Soon you will notice when something hurts or a muscle twitches, you will feel it immediately. You will be in tune with your body, your best friend. Congrats.
Do NOT stop your medication under any circumstance unless advised by your doctor.
Health is attained step by step. With mindfulness.
Facebook : Living With-Out Lupus
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