Sometimes I post a picture of myself, in our car, whilst we are at the beach or out for a short drive. My friends might think it is odd that I am always taking pics of myself like this but they will never know what it takes to even do such a thing. They can never know what is going on behind the scene.
What can’t be seen in the picture is that for months I have not been outside my home and I have been feeling frustrated and longing to see something different and to see life… to feel alive!
What they can’t possibly guess is that it took hours to get ready. Yes hours. I will need time and assistance to shower, dress, do my hair (even in a ponytail), do my make make up (even just some tinted sunscreen, lipstick and a little blush), to get me into the car (that’s another chore in itself), then sit me up with heat packs on my back and hips (even in summer) and cushions here and there… and then we can go!
They can’t know that I feel every bump in the road, every time we brake, every turn and even just sitting hurts. I try to take some meds before we start off.
They can’t know that I hardly ever get out of the car because of what is needed to put me back in, especially if it’s for a small errand like the pharmacy or a script.
They can’t know that although it’s like a torture to see people walking, playing, swimming and doing all the things I wish I could do, I still love seeing them and I feel no ill will. Perhaps a little envy at times.
They won’t know that I take the pic to show them that I am still alive and trying to do things and that I haven’t given up.
They won’t know that the pic is kept on my phone to remind me of the day I went out, especially on hard days when I am feeling low and hurting.
People won’t know that aside from when my friends write “hello Trish! You look well. Hope you have fun” that I never hear these words anymore because I rarely get to see people.
People won’t know that I will never know what days that I can do any of this as each day is unknown to me. My health is a day by day scenario. I can’t plan when I can do anything anymore and I have had to break so many plans and appointments because of my changing health that I can no longer make plans with people in advance.
People won’t know that for a day, or days, afterwards I will feel exhausted and extra pain. That is just the price I pay every time. I can not avoid it, that is why it is such a significant event for me, even though it may seem very common place to everyone else.
We can never know what goes into each picture we see on the internet. The time, the emotions, the planning and activities in pictures that are taken by people all around the world.. but if you have health battles and constant chronic struggles you will have some idea of what you are looking at when you see someone with autoimmune or chronic illnesses take a selfie and my fellow fighters around the world do have an idea what it has taken for me to have a ‘selfie’ and I feel so connected to them and thankful for their understanding. I hope that by sharing these little pieces that I write it will help others understand too.
… At least I hope so.