Good Morning Lovelies! I've had an exhausting but fantastic weekend. Before I regale you all the fantastic details, I should answer the questions from Friday. There were two questions from one anonymous commenter: Do you feel isolated or like people treat you differently? Do you have the energy to see friends anymore?
Yes. Yes. And yes! My thoughts are pretty scattered on how to answer this one. I've always been a loner and I like to keep my social circle small. I'm also a homebody and value time alone. I've always had a mix of concentrated social interaction with a few days to clear my head alone. For example, in college I had classes and a job in the Admissions Office during the week, and on the weekend, I stayed home. On rare occasions I would go to social events, but I typically liked to spend my weekends alone or with a friend or two. This trend remained after college and having a job where I worked 3-4 days a week was perfect. Even though the work was hard and the hours were long, I had time to satisfy my need to be alone and even spend time with friends.
So, I never expected to feel this alone and isolated when I stopped working. I never knew how much I needed to interact with people on a daily basis. Even just getting out to go to a restaurant or sit in a movie theater helps, but for a while there, I was too sick to do that. There is nothing worse than spending day after day with only a few hours of human contact. This trend has made me feel lonelier and more isolated than ever before.
Regarding part two of your first question, people definitely treat me differently and I have become different. I'm not as self-succient and strong as I used to be. I often need help and I think that's difficult for people to see. Not that they aren't willing to help, but it's hard to be around someone who's sick. Whether it's a chronic illness or something acute like a surgery, we treat people who are ill (or not completely healthy) differently. We don't want to make things worse or even see someone we love in pain. It can be hard to control emotions and reactions when we see our friends hurting and some may decide to just stay away. I understand that. As much as I need and want to be around people I don't want to put anyone in a situation that'll make them feel uncomfortable or stressed. I also can't promise that I'm going to be any fun or that my symptoms will remain in check for the whole visit.
But I do want to see/chat/hang out with friends. It really helps my mood and even small interactions go a long way. I don't always have a lot of energy to go out, but people are welcome to come visit. We could watch a movie, do some crafts, or just sit and stare at each other. Hopefully, now that the Avonex is getting out of my system and I'm allowing myself to rest when I need to, I'll have more energy for outings. I'm also learning to plan my week in a way that anticipates fatigue and other symptoms. (I have a lot of plans this week and I'm hoping that my new system works.) And fingers crossed that the new medication (whatever we choose) just makes things even better.
If you, anon (or anyone else), want to hang out with me I have four requests: 1. We have to talk about something other than MS. 2. We have to make plans so I can rest and prepare. 3. If I ask for something or need something (like a restroom or help standing), please know that it's usually an urgent need. 4. Please don't treat me like I'm fragile. It's best for me to manage my own condition and if you try to do it for me, there will be friction. If you're OK with that, message me and we can plan a time to hang out.