“Spoonie” — Living with RA

(I’ve posted this before on another blog of mine, but I also want to post it on here since this blog is more personal and a backup)

People have asked me how it is living with RA. There is no simple answer to that. It’s something you have to experience in order to fully understand it. It’s hard to explain to someone who has no clue. It’s a daily struggle being in pain and feeling sick on the inside while you look fine on the outside.

First of all, what is RA? Rheumatoid arthritis is an autoimmune disease that attacks tissues near joints and other body parts. The symptoms includes fatigue, joint pain, stiffness, swelling, and sometimes fever.

It is a constant every day battle with yourself, because not only you feel physical pain, but also inside. You fight for your health. It’s hard to do every day tasks, even getting out of bed is hard in the morning. Because as soon as you wake up, a rush of fatigue-ness and pain hits you. It’s a painful wake up call. Each step you take, you feel a shock of numbness.

You can’t tell if a person has RA based on their outer appearance —- “invisible illness”. What I can tell you is although it doesn’t look painful on the outside, it is inside. It’s living with constant pain —- small or big, it’s a deep exhaustion that makes every movement you make feel like you’re trying to move at the bottom of the ocean. A person with RA is very sensitive to the weather. They can tell if it’s going to rain later on that day or a few days ahead, because their joints start to flare up badly due to the weather changing. That’s why we are very terrified when the cold season is about to kick in.

With RA, you have to calculate every minute you go out. You have to think before making decisions. You have to consciously think, “is it worth going out tonight”, “how long will I be out”, “what will I be doing”, “what are my plans for tomorrow”, ect. You have to calculate the time you go out and when to go home, because your body can only do so much.. if you stay out too late, you probably won’t hear from them the next day(s). Some people say that these choices can be negotiable, but it is way more than that. The difference between a person who can do anything and a person with chronic illness is it’s not just about time. It’s realizing what you will be paying for overdoing the next day in pain, the need to sleep all day. It’s an anxiety of deciding yes or no when making plans with people who are not ill. Because they do not understand doing calculations in your head of what time you need to get to bed and if you can stay out that extra hour and be able to function the next day.

Living with RA, you are very limited into doing things in your every day life. There’s this article, “The Spoon Theory “. It explains how different it is to carry on every day life between a healthy person and a sick person. In the article, Christine (the writer) used spoons as an example of the limitations both people have. For a healthy person, they have endless choices or “spoons”. Whereas for someone who is sick, their “spoons” are limited. For each thing they do, they lose a spoon. And once they run out of spoons, they’re out of energy to complete tasks.

I have to say, it sucks very much having to live with RA. I can’t tell you how hard it is. Because arthritis is not just a problem with the joints. It’s the sleepless nights consisting of tossing and turning, because of swelling. The chronic fatigue, the struggle of putting up with every day challenges, the “but you don’t look ill”, the “you’re too young for arthritis”, the missing out on parties, the knowing that there’s not cure for it; yet you still hope. The injections and blood tests and drugs and scans. The continuous of trying out new treatments and medications. The missing out on things with your friends, the medication which makes you sick, the tears and stress, the anger you feel when you can’t do a simple task, and the indescribable pain.

A person with RA don’t look sick, but you’ll never know the struggle beneath the surface.

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