Dear those who don’t always understand,
I have Chronic Pain!!!
You probably know that if you have any type of contact with me at all but it is a good reminder.
I want to start by saying you don’t have to understand my chronic pain. I am not asking you to do that. I don’t understand it. I don’t understand why. I don’t understand how. I don’t get it. But I am asking you to be understanding of what I go through and how I react
I am not who I used to be. Sometimes I feel like I am living in a shell of who I used to be. Let’s be honest as much as you think my disease effects you, it effects me even more. I don’t even remember what it feels like to not ache and be sore all day, every day. Chronic pain effects me every single day in one way or another.
It messes with my head daily. I can’t get up and just go do what I want to do. I wish I could just lay in bed all day and forget about everything. That isn’t reasonable either. At times it spins me into a downward spiral and I have a hard time seeing up! Seeing the light just doesn’t work sometimes. And it’s not something I have control over every day.
It has taken away my spirit of conquering the world because I never know the next time I will be paralyzed by pain. For every roadblock or speed bump you encounter add an extra one in because of my chronic pain and I have to fight that every moment.
I am sure you know how much I hate saying no. It makes me feel like crap and gives me horrible anxiety! I always felt like I could save everyone and help with anything all the time. Let’s be real I can’t. I can’t even come close anymore. Some days it takes all in me just to take a shower.
From the minute my eyes open in the morning, I begin fighting through my day. Tasks you don’t even have to give a second thought to, I have to think, rethink and then modify it. Somedays putting on real clothes and getting ready to leave the house will take up all my spoons (see Spoon Theory) I have for the day. Other days I know I have to get up and I push through, in the hopes that somehow a shower and make-up will trick my body into thinking I am OK.
Canceling plans, oh my freaking goodness!!! I hate making plans because I never know if I will have to cancel them. I still really want to hang out with you or go to the movies with you but sometimes all of a sudden the pain takes over my whole body and all I can do is curl up in a ball and ignore everything else. I don’t want to cancel on you, I promise!!! But I also know if I don’t cancel, it will put me in bed for days longer! Please keep inviting me, just don’t be too upset if I have to cancel. I promise I feel guilty enough, don’t make it worse because this is beyond my control.
Going back to the spoon idea! I have to prepare ahead of times to be able to go places. So when I say I can’t do anything on Wednesday because I am taking my kids on a field trip on Thursday, please understand this really does correlate. I really do have to plan a few days in advance to have fun!!! When I say I don’t show up to that school event, don’t judge me because I have to save my energy to go to work that night. I already make myself feel guilty enough!
Please understand that when I say the surgery went well, or I am having a good day, I am not cured!!! Unfortunately, nothing that is going on with my body has a cure. I fudge my schedule around so I have more energy or my pain cycle is on the lower side but saying I am good just means it is a good for me day! A good day for me is if my pain hasn’t gone above a four on the pain scale. Could you imagine walking around with a four all the time? It’s exhausting.
Lastly, I am a real person, with real feelings. Don’t talk behind my back. Love me. See if you can help out (even though I will probably say no). Be willing to come over in your pajamas and bring your favorite blankie and snuggle up on the couch to watch a movie with me or even sit in complete silence. It’s all I can do sometimes.
The person in your life who loves you so much, I want you to understand.
Hopefully this letter helps someone’s family or friends understand what it really looks like. It sucks. It is tough but we persevere through it and we make things happen, as we can! Please just don’t take any of it personally!!!
If you are the one with chronic pain please be patient with yourself. Love yourself. There is nothing I know you wouldn’t give to make this all better. But know that you can’t always fix everything! Love who you are and how you are going to get through it. A positive attitude (most of the time) is the best medicine that you can have.