Invisible illness in everyday life
Looking at me you wouldn't think that for more than half my life I lived in pain. You may notice how I walk a bit slower than most people or how I don't really lift my arms up much. You may see me wince when I step up or lean a bit more than normal on the trolley I'm pushing. You wouldn't know that every second of every day is battle for me to put one foot in front of the other. That after I take my children to school I sit and cry to let it out so I can be strong for them again.
So let me tell you a bit more about me I'm a woman in my mid 20s. I have 3 main conditions that effect my life. One of them is Fibromalgia which many people have heard of so I will leave that one. The other two are connected, I have a genetic condition which means that when I was born none of my joints were properly formed which means that they dislocate with every move I make. Most people who suffer from this condition have the muscle to support where the bone is missing. My second condition is one that causes my muscles to form abnormally which then offers no support to my joints. My bones rub against each other which causes them to breakdown more and at this point I am looking at hip and shoulder replacements within the next 5 years. I am on medication 6 times a day (which is good because I barely sleep anyway) just to be able to move. I have tried a day without them, that was the last time that I overdosed. Every day is trade off I can do the washing or the dishes, I can have a shower or I can play with the kids, I can do the ironing or I can sweep the floors. Everything I do causes more pain and I have to time things around my medication to ensure that the most painful activities are done when the medication is at its most effective - usually about 30 mins after taking it. Sure I have good days which mean less pain and bad days that mean more pain, but it's always there. I can't recall the last day I had without pain. I tried turning to drugs and alcohol I damaged myself more because of the relief they provided I damaged my joints even more. It has made for some funny situations and there are always things I can take from a day or a moment or a person to make me smile just because I'm in pain doesn't mean that there isn't anything good out there for me.
The best way I have ever found to explain how it is to live with an invisible illness is the spoons theory. The story goes a little like this: Two freinds were sat in a resturant one day one with an invisible illness the other one didn't but wanted to understand her friend better. The friend took a load of spoons from a pot and gave them to her friend as she started to say "these spoons are your energy for the day, twhat you have in your hand is all you have for the entire day. Each activity costs you a certain amount of spoons, you can borrow some from tomorrow but they will cost you 3 times as many. Taking a shower is a spoon, cooking a spoon, walking to the bathroom another spoon. The more things you do each day the higher the cost gets for the next thing." The friends look at each other and the one holding the spoons starts to understand. "What happens when you are out of spoons?" The friend replies "You can borrow some from tomorrow but then you will be left with even less for that day."
To read more about the spoons theory here are some links:www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/en.wikipedia.org/wiki/Spoon_theory
Think about how many spoons you spent today what would happen if that was limited to so many less how would you pick your priorities? how would you choose which things that you have as normal every day things could you leave out? If your only option left was to borrow some from tomorrow would you do it and leave yourself with none for tomorrow? How do you choose what those important things are in your life?
Please feel free to share your own experiences and stories I would love to hear them all, for on here we are never on our own but we are part of a bigger community of those who really can understand.
