Chronic illness - Finding that balance everyone is talking about

People with chronic illnesses hear it all the time.

We get told not to be stupid and overexert. Find that balance. We are called irresponsible when we do things like going to gym or stay up late nights and many other things. Sometimes we get the whole sermon about how to take care of our body or some preaching that we make ourselves worst by all that we do even if we are doing what we've been asked to do by the doctors, physiotherapist, pain team, specialist and other health providers.

Recently I Vlog about 'Chronic Illness - Finding the balance everyone is talking about' on DLive.
Here is the link: https://dlive.io/video/vetz/6f4a5d10-3343-11e8-b82e-c1500cea03c6

Look... There is no such thing as balance. If you are like me and have chronic pain, we never know when pain is too much. Easy example is when you and your buddy haven't had anything to eat for 2 days and you see all of your favourite food so the both of you eat because the 2 of you were told the next meal probably be in 2 days or a week later. You and your buddy eats and in hopes to reap energy till your next meal eat more. Funny thing is, as you were starving, you will not feel full immediately when you start but as you progress an hour with 5 serves of pasta, chicken, cake and ice cream. You start to feel a little stuffed like a Christmas turkey. You stop and watch your buddy eat and stuff his face even more. Ann hour later, you feel nausea and just want to throw up from over feeding yourself. You called your buddy and asked if he felt the same since he ate more than you but the tells you that he is feeling just fine and you get so perplex on how much food he could stomach but not you.

It's the same as us. We never know when we will be able to ever do anything we can do again but as advise to keep active. So we do as much as other people do or what we think we can do. It is just like eating. We don't know if we overdid it because our body doesn't give us the right signals. I am constantly in pain. So do I just sit home in bed all the time? The answer is quite simple. No. I go out and do things like normal people do and keep active like what the doctors tell me to do. Sometimes I get really sore and exhausted but there was no precursor to these episodes coming. I might be only running 1 km and my knees gives way and I struggle walking for days. Other days, I ran 5 km or 7 km yet nothing happen. So there is no such thing as finding the balance. We just do what we need to be doing and hope for the best. Sometimes I do get a tinge of fear of consequences when it happens but why must I succumb to it?

Most people who does not have chronic illness does not understand that we go to gym or exercise because the doctors and physiotherapist recommended it. They do not know that we take certain medications because they have been prescribed by specialist after throughout evaluation. They do not understand that we take or do not take certain supplements because it has been tried by the community or advised by certain physicians. They have no idea that we already gave up competitive sports and the dreams of becoming an athlete or joining the armed forces.

They have no idea that we can't sleep at nights because our muscles in relax state decides to go into spasms or the noises outside our bedroom no matter how soft seems like a loud gong next to our ears or lights no matter how little keeps us up. They have no idea the tears we cry in pain behind closed doors. They have no idea when we struggle to get out of bed or even open our eyes. They do not understand how we defy our illnesses time and time again.

Picture taken from https://www.pinterest.com/pin/400890804313445077/
It sums up exactly what Chronic Illness is like though. People do not see it but it doesn't mean it doesn't exist for us.

Does it matter that they do not get it? NO! They do not matter for your mental health sake. If you have to, cut these people off. Those who's opinion matters are those who care for you and understand that you are trying to get through each day doing what needs doing. Those who cares for you will not condemn you but encourage by putting courage in you to face every obstacle that come your way. Those who care will share your laughter and pain. They will be your strength when you have none left and you will keep trying to get through each day because you love them for being there for you.

You only have that much to give if you have chronic illness. Look after yourself, care for those who matter and give your best each day of your life. Many chronic illness warriors write articles and talk about being a 'SPOONIE'. If you are only given 5 spoons a day, make it count. We don't balance these spoons, we use them. Google 'Chronic illness + Spoonie'. That should elaborate what it is all about.

We can only hope those with friends who has chronic illnesses like chronic pain, chronic fatigue, Lupus, ME, Fibromyalgia, RA and other will someday understand we are doing all we can or know how.

It's okay. We are in this together. Carry on warriors. You are doing just fine. You have survived the battle this long. Do not give up and do not give in to those that does not matter. Find those that matters and stick with them.