So this obviously isn't going to be the typical "voice" you hear in most of my post but I think it's a post that needs to be made.
It's really hard to keep friends when you're sick all the time. You go MIA randomly and people just get use to you being in and out of the hospital.
But every once in awhile someone special comes along.
I met Elizabeth at a diocese church camp when I was a freshman but it wasn't until sophomore year that we started to get close.
We would talk off and on between camp, she was one of those people who truly listened to what I said. She understood that me cancelling things wasn't me being flaky or trading in our plans for something better but that I really couldn't do anything. She was always so understanding.
And then there's my 20th birthday. We haven't talked in month but I knew she liked to country dance like me and I invited her to go out with me and another friend for my birthday. At first she couldn't go but then my friend bailed on me last minute and Elizabeth dropped her plans so she could take me out for my birthday. She made my birthday that year. It was the first time since I turned 18 that my brother and his fiance wasn't here to celebrate with me so that meant a lot to me.
So I did everything I could save my spoons for her wedding day. Unfortunately, I woke up that day feeling pretty crappy. I was heartbroken but I wasn't going to tell her I wasn't coming. It was her day and I wanted it to be perfect for her so I waited.
Two days later I sent her a text explaining everything and being the sweetheart that she is she asked how I was feeling and said it was no problem. All of this made me even more upset to miss it. I know she doesn't feel this way but I felt like I had let her down. She's been there for me but I was unable to be there for her big day.
As a spoonie, we miss a lot of moments. Sometimes it's not that obvious as a wedding, it can be a simple lunch date with a friend, and it always hurts more when the persons /people we made plans with get upset with us thinking it was out of our own free will when it's not. We would do anything to feel normal. For some of us we don't leave our house that often so getting out the house and it not be a doctor appointment or ER visit gets us more excited as you think.
We take every precaution we can take so we can hopefully go but, we are at the beck and call of our bodies, There are and will be times that no matter what we try to do our bodies are telling us no don't go and we have to listen. Why? Because if we ignore our bodies we can pay for it big time. Honestly, we already do even if we're having a good day but when we're not and we go out anyways this can result to a long recovery (a week rather than a day or two) and even a hospital visit.
All we want is for you to understand all we also want yall to let us decide if we should or shouldn't go to something because it also hurts when people decide not to invite us when they know we're not feeling well. We know our bodies best. We know what we are capable and incapable of doing. We may be spoonies but we're still human beings. We long for social interaction and fun.