Well, I sure have disappointed myself with this blog. I expected to be writing a ton, sharing what I’d be going through as I experience the details of my MS, and documenting my progress on this unexpected journey. But here it is, 8 months after my first relapse with only 9 posts (10 now!) under my belt. Well, I suppose averaging one post a month isn’t terrible… it’s less frequent than I had expected and it’s… well, it’s disappointing.
I spend much more time thinking about this blog than I spend drafting posts. Should I register a domain name? Should I tell people about the blog? Should I post using my real name? Should I host it on my own? Should I post about things other than MS? After all, my life’s focus isn’t MS. But that’s what I started it for, to write about my MS from the perspective of a newly diagnosed person.
So I’ve disappointed myself with expectations that may not have been very realistic. I work full time. I have two teenagers. Need I say more? Resting to combat the fatigue is of utmost importance. Working full time + two teenagers = not much rest = not much time for writing blog posts.
I’ll just focus on posting when I can and not hold expectations of myself. Getting into the habit of writing more frequently is a good goal. I’ll not worry about all the other stuff. For now, I’ll just post when I can on this WordPress hosted blog to my 0 subscribers… using my real first name.
Speaking of Expectations & Disappointments
I’ve run into some family drama, with my family of origin. What it boils down to is that I haven’t done a good job of managing my family’s expectations of me. It’s not something I had thought about… that the responsibility to manage their expectations lies with me. My own family, my husband and two teens, live with me and witness how my MS affects me. Although, because teens are somewhat brain damaged, they aren’t always understanding. I try hard to be sure I don’t miss out on their games or activities because of my MS. But sometimes I do. Sometimes I have super busy days at work and don’t have enough energy to sit amongst a crowd of cheering and yelling people. I don’t like that I use my energy up at work and have none left for my own family… but that’s just how it is. I’ve really fought blaming it on MS because I don’t want something that’s wrong with me to affect those I love. But it does, and I’ve been coming to terms with that just recently. I suppose this family drama that’s come up has been helping me come to terms with and accept that there is something wrong with me and it will affect other people.
So back to expectations, the responsibility of managing them, and disappointment…
It never occurred to me that anyone outside my immediate family would have expectations of me. When I began experiencing the vision problems back in February, I told my parents and siblings. I kept them updated as I went to doctor appointments. When I received the diagnosis, I told them. I explained the effects on my brain and my understanding of what it means to have multiple sclerosis. I explained that we won’t know what my MS will be like until some time has passed as its unique for each person. I expected they would look it up on the Internet to obtain a better understanding for themselves. And of course I would be sorely disappointed later on… 8 months later to be exact (which is now!). I don’t think any of them looked up anything. Regardless, understanding someone’s MS probably doesn’t come with reading about it but rather experiencing it with them. Shame on me for expecting my extended family to research the disease. They all lead busy lives and spending time researching something that does not immediately affect them certainly shouldn’t be a priority.
Remember how I’ve fought blaming MS for not having the energy to do things? Thinking about it… it’s also because I don’t want to come across as using it as an excuse. My MS is invisible. It cannot be detected by the outside world. I’ve got one of those, “but you look so good” cases of MS. I know this and I know that if I say I can’t do something while looking so good, it may come across as making up an excuse. So I’ve pushed myself. There are some days where I don’t have the energy to go my daughter’s volleyball game or son’s football game… but I don’t want them to think I’m making up an excuse to not go. I don’t want to miss their activities either! So I have pushed myself, and it hurts. I’m getting better at not worrying about what people may think and making the decision to not attend something because I know doing so will hurt me. Certainly, after a good night’s (or weekend’s) rest, I’ll be ok. But I don’t want to discover how far I’d have to push myself until I experience another relapse.
So I’ve declined or cancelled a few family gathering events. Apparently, a few too many. I made the mistake of providing an additional reason for not attending something and it came back to bite me in the butt. I should have been ok with admitting that something is wrong with me and leaving it at that. This painful bite has made me aware that it is my responsibility to manage anyone’s expectations of me… anyone who knows I have MS. They take their cues from me and if I’m not providing any cues, well, misunderstanding ensues. I’m not entirely sure how to go about managing their expectations as I can’t know what they are unless they tell me. Unsaid expectations are the worst kind. They can be like a disease, producing all sorts of terrible symptoms like mistrust, incorrect assumptions, judgment, resentment, disappointment, etc.
Actually, now that I’m hashing this out… I’m not sure it is my responsibility to manage their expectations. If I don’t know what they think I should be doing, as a person living with a disease, how can I tell them any different? I can’t.
Perhaps the way this has been brought to my attention is the only way it could have happened. Had I not given that additional reason for not attending that one family event, would it be any different? I can’t say.
Ugh! I think this is the worst part of being diagnosed with multiple sclerosis so far. Having to contend with drama from my family of origin. There could be a reason I live two hours away!
This is stress I do not need. So in addition to not attending these family events, do I also minimize contact with them? I’m not sure that’s a solution. I still have to work through this drama and I’m not looking forward to it.
Hmmm… perhaps I should tell them about my blog to help them learn about my MS. Then I’d have to post more for sure!
- Adolescence, parental disappointment, and parental guilt. (psychologytoday.com)
- Understanding Multiple Sclerosis (multiple-sclerosis.suite101.com)
- Multiple sclerosis will become a controlled disease like AIDS (physorg.com)