When you have a friend or several friends who are chronically ill, there are some realities that need to be faced.
1. My illness is going to ruin plans. It is going to ruin some nights, it is going to make me cancel, change, or leave an event early. My illness doesn't cooperate by my social schedule, so no matter how long something has been planned for, there is ALWAYS the risk that I may not make it or be able to participate.
2. I care about you more than you probably think. Every single thing that I do in the day depletes my very low energy stores. Every conversation, every plan, every errand is hard on my body and contributes to fatigue. Every thing that I do takes it out of me and requires me to risk my health in order to do that one thing. So if I see you a lot or make plans with you on a regular basis, that means that I am willing to risk my health to spend quality time with you.
3. I feel guilty. I feel guilty ALL the time. I know that my burden is also the burden of my friends and family. I wish it wasn't the case, but it is, and I know that it is my fault in a sense. Please don't make me feel worse by berating me or my illness.
4. I am trying.
Every day I try to come up with a new way to do something or a new schedule for medications or ANYTHING new that might make me feel better. I am looking for ways to feel better 100% of the time. I am trying all that I can to get better....and I struggle with it every single minute of every single day.
5. I do not use my illness as an excuse. Although I do admit that sometimes it is convenient when it acts up around the time when I wasn't really wanting to go to that one party, or wanting to spend all day at a sports event... but the only time I will ever full out cancel plans is when I physically CANNOT get out of the house. Maybe I have been vomiting for hours. Maybe I am so dizzy and shaky with tremors that I cannot drive. Maybe I am going to the washroom every five minutes. Whatever the case - if I cancel, there is a damn good reason for it and usually means that I am considering going to Emergency. I don't always go (even when I am technically supposed to go) but if I am canceling plans - especially plans I have been looking forward to - then that means that I have been going back and forth in my mind whether to go in, call an ambulance, or just try and tough through it at home in my own comfy bed with cuddles from my dog.
If I cancel plans or change plans, my friends are always welcome to come to my place. Sometimes I feel okay for company but cannot go out, and if you're my close friend, I know you won't judge how dirty my place might be or how grungy I might look.
The reality is that I have very little control over my illness. So my diseases are not just taking away plans from YOU, but it is also ruining my plans as well. And, if you're wondering, you never really get used to it. I've been doing this for over 15 years and I still ended up in tears the other night when my illness forced us to go home early from a Christmas party. It sucks. It always sucks. And it's worse when I felt like I COULD handle something and then wind up not being able to handle it after all. So please be patient with me. Every one of you is in my life for a reason and I will do whatever I can to always make you feel like a priority, but my health has to come first. My health skips the line and jumps in where I don't want it to, but that is just how it is, and I can't change that.
And, most of all,
it's not my fault.
1. My illness is going to ruin plans. It is going to ruin some nights, it is going to make me cancel, change, or leave an event early. My illness doesn't cooperate by my social schedule, so no matter how long something has been planned for, there is ALWAYS the risk that I may not make it or be able to participate.
2. I care about you more than you probably think. Every single thing that I do in the day depletes my very low energy stores. Every conversation, every plan, every errand is hard on my body and contributes to fatigue. Every thing that I do takes it out of me and requires me to risk my health in order to do that one thing. So if I see you a lot or make plans with you on a regular basis, that means that I am willing to risk my health to spend quality time with you.
3. I feel guilty. I feel guilty ALL the time. I know that my burden is also the burden of my friends and family. I wish it wasn't the case, but it is, and I know that it is my fault in a sense. Please don't make me feel worse by berating me or my illness.
4. I am trying.
Every day I try to come up with a new way to do something or a new schedule for medications or ANYTHING new that might make me feel better. I am looking for ways to feel better 100% of the time. I am trying all that I can to get better....and I struggle with it every single minute of every single day.
5. I do not use my illness as an excuse. Although I do admit that sometimes it is convenient when it acts up around the time when I wasn't really wanting to go to that one party, or wanting to spend all day at a sports event... but the only time I will ever full out cancel plans is when I physically CANNOT get out of the house. Maybe I have been vomiting for hours. Maybe I am so dizzy and shaky with tremors that I cannot drive. Maybe I am going to the washroom every five minutes. Whatever the case - if I cancel, there is a damn good reason for it and usually means that I am considering going to Emergency. I don't always go (even when I am technically supposed to go) but if I am canceling plans - especially plans I have been looking forward to - then that means that I have been going back and forth in my mind whether to go in, call an ambulance, or just try and tough through it at home in my own comfy bed with cuddles from my dog.
If I cancel plans or change plans, my friends are always welcome to come to my place. Sometimes I feel okay for company but cannot go out, and if you're my close friend, I know you won't judge how dirty my place might be or how grungy I might look.
The reality is that I have very little control over my illness. So my diseases are not just taking away plans from YOU, but it is also ruining my plans as well. And, if you're wondering, you never really get used to it. I've been doing this for over 15 years and I still ended up in tears the other night when my illness forced us to go home early from a Christmas party. It sucks. It always sucks. And it's worse when I felt like I COULD handle something and then wind up not being able to handle it after all. So please be patient with me. Every one of you is in my life for a reason and I will do whatever I can to always make you feel like a priority, but my health has to come first. My health skips the line and jumps in where I don't want it to, but that is just how it is, and I can't change that.
And, most of all,
it's not my fault.