Medrol Dose Pack = Finished
This morning, I took the last pill in the medrol dose pack that I have been taking to try and put my MS back in remission. Last night was pretty rough, in terms of seizures, but today, I’ve been good. I actually decided to be brave and walk to the grocery store despite the bitter cold today. I think the most alienating part of having seizures is the fear that you will have another seizure at any given moment, and so you don’t want to leave somewhere that’s “safe.” It was a very tough decision to go out into the world, even though Adam is at work for an additional 4 hours tonight and tomorrow night.
Too much time alone.
I’ve decided that I need to try to put together some sort of social life, regardless of the seizures. I have to be willing to spend money for public transportation. For whatever reason, I feel bad about doing that… but what’s my choice? Staying home alone all the time and never going out and doing things. And I’ve done the hell out of that. I’m over it. So over it. Talking to my dog like he’s a person over it.
Right now, I’m blogging instead of cleaning and vacuuming the living room. I figure, I’ve already done the dishes, cleaned the kitchen, done 2 loads of laundry, and refilled the humidifier… I can couch for a little bit. I mean, if I do everything in one day, what fun will be left for tomorrow. */snark*
Really, I’m trying to decide whether or not to dye my hair tonight. If I start now, I’ll still be done before Adam gets home…but it also means taking a shower when I’m alone, which I’ve agreed I won’t do. The terrible pull between wanting to cure boredom/pander to my vanity and wanting to be safe. I think Adam would be pissed if he came home, and dinner was ready in the crockpot, but I’d fallen in the shower and needed to go to the hospital. So, I guess I’ll wait on the hair til later tonight.
Work, work, work.
Remember how I was working on that silly vampire novel? Well, I’ve chucked it. I can write something better… and probably less trite. I kind of hate my main character, a vampire who only feeds on people who want to die… and I’m not really in love with any of my other characters, so why would a reader be? Well, that’s not *entirely* true. There is one character I like. She’s an ex-vampire who only fed on abusive parents, who, for hundreds of years, ran an orphanage filled with the children of her victims, and died by sunlight when one of her children asked her to pray with her, and it lasted past sun-up, sending her back to hell, where she works intake with the newly damned. But what are you gonna do? Tell her story? I’ll think about it.
Speaking of work… today, I also learned that you can make money by creating those annoying top 10 lists.
I also learned of TaskRabbit. I might try doing some odd jobs here and there as I feel stable.
As for right now, I’m giving in to the to-do list. Adam will be coming home to a totally clean house. I don’t want to get used to this.
In It For The Parking 
You have a lot to deal with. Isolation stinks. I like the comfort and safety of my home too. Do you know people you could invite over? I used to cook a lot and ask people to come for a meal or dessert…even a cup of coffee or tea. Now I order out, but still have people come to the house. Without planning ahead to have company, I’d be very lonely.
I know a few people that I could invite over. 98% of the folks I know here in Chicago are my husband’s friends, and most of them work full time. The only other folks I know here also are dealing with MS, so almost every time we make plans, they fall through. I’m trying to figure out a way to make friends.
In the last year, I’ve done a good job of fighting depression, but it’s definitely nagging at me now, simply because of the isolation. I feel like less of a person because there are so many days where I can’t leave the apartment. I feel like I’m not really living life, even though I know that’s irrational. At least for most of the year, I was able to take the dog for walks outside. During the first week after having a lot of seizures, I can’t even do that.
You’re right, though. The key to making things better is planning.
Feeling empathetic. Do you attend a church? Can you find a card playing group? Volunteer somewhere that might provide transportation?
The card-playing group is probably my best bet. I’m just not sure where to find them offline. Most game stores are big on Magic:The Gathering or Pokemon or whatever. I’m not really big into either of those things, and they cost money to participate.
Re: church – I’m Jewish and Adam’s Catholic, and neither of us take religion seriously enough to be members of a house of worship, so that’s out.
As for volunteering – I had no idea there were opportunities where they provide transportation. I foster kittens as a way of volunteering. I’m happy to donate my time and efforts somewhere. Do you have any suggestions on finding those kinds of opportunities?
I really appreciate your suggestions and help.
Rachael – I’m a fellow MSer who struggles with isolation too. My mobility issues and lifestyle cause me to identify well with seniors. I wonder if inquiring at your local senior center would provide some options for card playing. They’d be good company and would love yours. Also wondering about volunteering at a hospital where they would be well equipped to handle any issues you might have and might be able to provide transportation. I encourage you to give more thought to spiritual beliefs – to truly seek God. None of us are here permanently and we all need purpose to our days and our trials.
I’ve been checking out your blog this morning, actually. 🙂 Always glad to meet another person who is fighting the good fight. I used to joke with Adam that I’m the youngest 80 year old anyone’s met. I totally get you in that area. I have no idea where the senior center is here, but I’ll look it up. It’s a very good thought!
As for religion: while it would be nice to have a community to be a part of, I really don’t like organized religion at all. It’s unnecessarily divisive and elitist. I follow the path of non-dual Judaism. Put as simply as possible, it means that I believe everyone and everything in the universe (yes, including any possible alien life) is part of God. We’re all one. It’s hard to find a congregation that embraces that. Unitarian Universalists can get pretty close, but it’s not the same. For me, the idea of “seeking God” is kind of strange, since God is literally everywhere.
As for having a purpose to our days and our trials, I know that it’s gonna sound very existential of me, but I don’t think it’s any of our business what our true purpose is. It’s up to us to fill our lives with activities and relationships that are meaningful to us. If we had any objective purpose, it would ruin the puzzle of figuring out who you are.
It’s my hope that by writing about my struggles with MS/seizure disorder, it’ll help other folks with MS feel less alone and that it will help healthy folks to empathize with our struggle.
There are things we disagree about. This world is a battleground of good vs. evil. I need God. I need His goodness in the midst of my illness and the evil around me. It is God’s love that causes me to care about you. There are things we agree about. Illnesses and isolation stink. I hope you are able to find something to be involved in and people to spend time with.
I think we agree about more than you might think!
I *absolutely* need God. I turn to the Almighty for strength, protection, patience, and love all the time. I just don’t feel the need to be in a particular building, paying other folks for the privilege to do it. It’s because of my belief that we’re both part of God that I care about you too! It’s like the Hindu tradition of greeting and parting with “namaste.” I recognize the divinity in you, and I bow to it. I see our kindness towards one another, regardless of differences in opinion, as a way of God expressing love for both of us by working through us and letting us see that we’re cared for.
And I definitely agree that in many ways, this world can be a battleground for good and evil. I just think that we humans are the ones assigning the values based on our perspectives. What’s “evil” to some of us is “good” to others. The best example of this that I can give is bacon. Jews, Muslims, and a few Christians don’t eat it. It’s forbidden or evil because that’s what it says in Leviticus. But, if you’re not keeping kosher or halal, is there much out there in the world that’s better than bacon? I’d put it in the “good” category because it makes so many people happy. 🙂 At the end of the day, if God didn’t want us to have the ability to think for ourselves, we wouldn’t be able to – so I think defining our own morality is a challenge presented to each of us as a way to help us better understand the divinity within us. My moral code is very simple: be honest and kind.
I really appreciate the suggestions that you’ve made, and I appreciate the good work you’re doing with your blog too. You write well!
I love you, Rae!
I love you too, Mom.