Why Are You Posting Again?

Hey, that’s a good question. The past year has been crazy busy. Perhaps a few highlights might explain why tumbleweeds have been skimming across the pages.

Our daughter was accepted as a member of her high school’s Constitution Team early last year. While they had a class at school during the school year, they also met at least two times a week after school & on the weekend and throughout the summer. They won the district and state competition in January 2012, and then the national competition in Washington DC in May. This brief paragraph cannot properly convey the dedication and commitment of everyone involved – her teammates, coaches, and all the parents. It was truly an amazing experience, especially for the kids.

Our daughter is in the b&w houndstooth dress on the far right

Our son graduated from high school and joined the Air Force. He left for basic training (boot camp) in San Antonio, TX on the first of November. My husband, daughter, and I spent the last week of December in San Antonio for his graduation. He then spent the next six months at tech school learning his job – Geospatial Intelligence – and came home for two weeks in June/July of this year. He’s now in Germany and I miss him, but am very proud of him. It’s weird being a parent.

Airman Woods, Geospatial Intelligence

I turned 40 in October. To celebrate, my husband and I spent a long weekend in Iceland. While there, and on my 40^th birthday (!!!!!), we saw Björk perform in the newly renovated Harpa. Words cannot express what that experience felt like; overwhelmingly beautiful is what comes to mind. I so very much wish I could travel back in time whenever I wanted to re-experience Björk’s concert. I also wish we had spent more time in Iceland. The travel bug bit us, and what perfect timing with our kids leaving home and starting their own life journeys.

Check out my album of iPod photos and my album of Canon photos.

Me + Björk

At work, my team planned and executed five meetings in 12 months. Three of our largest meetings were held in a short span of eight months. We have never had such a tight meeting schedule. I took on new responsibilities and spent many long hours at work. While challenging, and stressful at times, I learned new things and had the opportunity to build confidence in my writing & editing skills.

Our pug Klaus, sad about Mama working so much

In July of last year, my Mom and I spent a weekend with her Dad, my Grandpa. His health was deteriorating and his wife needed someone to stay with him while she was gone for a family wedding. It was a lovely weekend, although Grandpa did remark that he knew why people were coming to see him. It had been a few years since the last time I saw him. He passed in November.

Grandpa’s resting place

Throughout all this I was not diligent about my diet, yet I did not experience a relapse or exacerbation of any MS symptoms. I simply maintained as best I could. I have been relapse-free, and drug-free (i.e. pharmaceuticals), since being diagnosed two and a half years ago.

So why am I posting again?

Primarily because, and forgive me for however strange this may sound, I feel more accountable to myself when I am actively blogging. Life has been living me the past year. It’s now time for me to sit back, breathe, and turn it around so that I am living my life. Plus, I now have a little more wiggle room in my schedule.

Once again, I am Returning to True Intentions. But with an additional year and four months of wisdom and experience behind me.

Hey! A year more of wisdom/experience can make a difference, however small!!

Expectations and Disappointments

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!

Related Articles

• 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)