In today’s blog I’m going to touch on several different things. How people perceive a chronic illness. How we misconstrue friendships from acquaintances. Feelings of self worth and not wanting to be looked at as sick. Appreciating yourself as you are. Making things clear to the people around us. Being happy with you as you are.
Well I have to admit before I had a chronic illness (MS) I too didn’t get it. Even several years after recovering from the first several flares I didn’t get it. I always thought I just wasn’t working hard enough to keep myself going. I thought I should work out harder or eat better. This is not the case, natural progression is just that; natural progression. Like I’ve said in other blogs, everyone’s MS is different and some are more aggressive than others. I should say it’s of no fault of the person with the aggressive form. They can’t take something to make them better or work out more. Sometimes it’s just the course of their disease.
In the past I would mentally beat myself up after an exacerbation. Thinking it’s my own damn fault. I know I should take it easy but damn it’s hard not to try and push myself on good days. I also went above and beyond for a lot of people when I shouldn’t have. After all, everyone knew I was sick but I didn’t want people looking at me like I was sick. I wanted to be super mom and super wife as well as super police/fire dispatch. This was part of the self worth issue. I felt I needed to go above and beyond to prove I was needed; to prove my illness didn’t make me less than. Usually it’s barely a blip in someone’s memory the things you’ve done for them. Now I’m ok with saying no. I do what I feel is going to be good for me. I’m no one’s caregiver except my own. I have worth and it extends far beyond what I do for people. That’s one of the liberating things about getting older. You realize what’s what and who’s who.
I’ve always considered myself a live wire with a lot of friends. I do have friends that I feel would be there for me if I called them. True the majority of them are in NY but I do have them. Now looking back I can see that a lot of my “friendships” and familial relationships were no more than acquaintances. People we know at work people we see in passing. People we even consider family are sometimes no more than mere acquaintances.
I had this epiphany when I was in the hospital having plasmapheresis. My boys, my husband and my bestie came to visit me. That was an eye opener. People I’ve known for in some cases, almost 20 yrs. Some I considered family even though it was through marriage. Still and all it was interesting to say the least. Even after I left the hospital and told friends of my experience, they often responded with, “I know I follow your Facebook”. One of those people was someone I treated like family and knew since he was a little boy. Needless to say it was a shocking revelation that those people knew of my hospital stay but didn’t feel the need to reach out. Lesson learned.
I want to take a moment to let everyone know it’s ok to let others around us know our limitations. I used to hold myself to a ridiculous standard. What did that do for me? Nothing at all. It hurt me if anything. You should all let people know what they can and can’t expect. I used to have bday parties for family members or cook dinner and have family or friends over. While it was fun for me because I enjoy cooking. It was an enormous amount of work that I did not need to do. My Sissy was coming to visit and said ” it’ll be great, we’ll visit and we can hang out in the kitchen while you cook.” While she didn’t realize that even though I enjoy cooking it’s a lot of work. I let her know real quick that no I wouldn’t be cooking a damn thing. Now I don’t do parties, holidays or entertaining. Not because I’ve become anti social or don’t care about them but because I care about me and my health. I’ve also let everyone know including my boys that I’m not going out of my way to cook their specialty foods. If they want to hang out with Mom they can take me out to eat if I feel up to it. Everyone knows I love my boys beyond belief. But they’re grown and can do for themselves as well as for me. My hubby cooks on days I don’t feel up to it or orders food. He is also aware that if I’m not up to doing something I’m not going to and he’s good with that. We’re a team if there ever was one. I don’t think I had a real appreciation for him until I saw how dedicated he was to me. Even though I’ve quit being the workhorse we’re still that crazy, fun loving family that jokes and laughs way too loud.
Now I’ll touch on how I’m happy with myself and the person I’ve grown to be. I am thankful every day for whatever little thing I accomplish. If it’s just cleaning my bathroom or dusting or working out.I’m thankful for every little thing I can do. I don’t beat myself up for not being able to do everything on one day. What used to take me a day now takes me 2 or 3. And that’s ok. I take time and work at my newest pace. My husband and kids still appreciate the crap out of me and they’re the only ones I care to keep smiling.
With all of that being said I want to leave this on a positive note. Life has gotten easier since I realized I don’t have to kill myself doing for others. I’m going to go at my own pace (like I should have done years ago).
We shouldn’t be ashamed that we’re not the person we once were and it’s not selfish to take care of ourselves. We have to out of self preservation. I wish I had realized that years ago.