Life Beyond Multiple Sclerosis

I don’t do a lot of real life posts, but this one has been in the works for a while now, so I figured there was no better time to hit that publish button than on the last day of Blaugust. It’s been a heck of a month.

For those that don’t know, I was diagnosed with Multiple Sclerosis earlier this year. It’s an autoimmune disease that shows itself through a whole lot of different ways, basically no two people are alike, and that makes it hard to diagnose. For me personally, I have the type that goes away for a bit and lures you into thinking that everything is OK, and then randomly things are very not OK. I had some of the symptoms for years, but thought “oh I’m just getting older” and thought they were normal.

It started with pain in my hands and feet. Gaming some days is almost impossible. I had a bunch of tests and bloodwork done to see if there was any inflammation and there was not. All my tests come back clear which is what makes getting an MS diagnosis so much more frustrating. The pain in my feet is worse in the mornings after sleeping, or after any length of time not moving. It’s bad enough that I have to have support to walk around my house for a bit. A lot of the time I cannot control my hands properly, it makes things like opening containers, holding cups, and other mundane tasks very difficult. I can’t prepare meals easily, I can’t use a knife, and I struggle to do the basics. Since these symptoms are not ALL of the time, but only when I relapse, I thought I might be making them up in my head.

This year cognitive issues started. I often ‘lose’ my words right in the middle of talking. I have short term memory issues where I forget what I ate for dinner even though it has only been a few hours. I get frustrated when I can’t think of a word for something that I’ve said a million times in the past.

I also started getting vision problems. On relapse days/weeks my vision blurs, I see a white haze around everything, and it looks like the house is filled with smoke. My eyes will bother me, feeling tight or heavy. I started writing down all of these things, when they would happen, and tracking them. Sometimes I’m good for a month or two, then symptoms will come back for a few weeks, and then they’ll vanish again.

To say MS is frustrating is an understatement. It’s so hard to explain to people (including doctors) what is wrong when you can’t SHOW them. That’s the main reason why I started writing symptoms down – so I would have SOMETHING to show the doctors besides me saying “well, sometimes I forget my words, sometimes I have pains, sometimes this sometimes that, but not all the time…” Anyway. I’ve had to adjust my life and make some changes. I am a lot slower than I used to be at everything. Walking. Cooking. Gaming. I need a lot of sleep and rest. I need to recognize when my body simple can’t handle any more. I need to be gentle with myself. On the plus side, it is NOT a death sentence. On the downside, it IS (at the time of this post at least) a life sentence. There are medications and things to help slow down progression but there is no cure (yet). It hinders my ability to do very basic things, like drive. On bad MS days I have difficulty taking care of my kids alone. I can’t lift them up, or play outside with them. I always have to tell them to be careful around me. Living in an isolated post makes it even more difficult. It’s frustrating and annoying – but it hasn’t stopped me. It has just slowed me down.

Any way. Why write about all of this? Just to hopefully let someone out there know that you are not alone. That things go on, that you’ll go on, and it will be OK. Maybe not right away, but eventually I found my groove and even though things are really difficult they are manageable. I’m a billion times thankful for all of the support I DO have, and I’m grateful for those days where everything goes ‘OK’ instead of brilliant. Keep trying. Keep pushing forward.

Lessons Learned

It’s just about time to wrap up another Blaugust – and it’s been a great one. I have all sorts of amazing sites to read (I tend to refresh the ones I follow during this event and discover new and amazing blogs) and I managed to keep up to the best of my abilities (I say to the best of my abilities because I post date things to fill in missed days and I don’t see anything wrong with that). This week the topic was ‘lessons learned’ – and I’ve learned my fair share of them over the years.

The main one I learned is that you care more about what other people think of your blog / content than anyone else does. What I mean by this is I used to stress that the few sponsored posts I get would affect my site and I worried that I’d lose readers, and I was concerned that my audience would leave (what little I had) and all sorts of negatives. Turns out, none of that was true, and none of it mattered. I do accept sponsored posts from time to time, it helps pay for my hosting and in good years it gave me a bit extra to put towards game subscriptions or whatever other cost I had. Aside from people asking if I had been hacked or asking if I knew I had sponsored posts, it didn’t change much of anything. I know not everyone agrees with putting ads up on their blog, but for me it’s something I no longer stress about at all. I will always be more invested in my site than anyone else, and that’s probably how it should be. Stop worrying so much about what everyone else thinks / says / does and just focus on how you conduct yourself – be true to yourself, whether that’s monetizing your blog or not.

I learned that being consistent with content is more important than what you’re blogging about, and you will find your people.

I learned that people will like what they like. That means if I spend 3 hours putting a carefully cultivated post together – chances are the post that took me 5 minutes will get more traction. I try not to care about that too much these days, but it used to really bother me.

I learned that I don’t need a different blog to encompass all of my interests, but instead I make use of categories, tags, and other tools to separate everything. Maintaining a blog can be quite a task, and when I was first writing I thought that I had to keep everything in its own little section. I still feel that way, but I can do that within the total writing space instead of creating an entirely new one. This helps me keep consistent, and shows that I’m more than just abcxyz thing. Sure, I’m a gamer, but I also knit, and I spin yarn, and I have other interests. There’s no shame in that and it took me a long time to learn that it’s OK to expand my blog to showcase those other interests.

If you’re looking to blog, it’s never too late to start. If you’ve ever wanted to there are free tools out there to help you get started, and even if you don’t stick with it at least you gave it a try. I hope my posts have given a little bit of insight, and if not, welp, that’s OK too.

Black Desert Online (Remastered)

I bought a copy of Black Desert Online when it released, which I think was back in 2016 – and I played it for a month (maybe?) and I got to level 18 and then I forgot about it. That’s pretty much how it goes with me and games. I finish very few, I stick with even fewer. Anyway, back in January I heard that you needed to migrate any old accounts over to Pearl Abyss or they’d wipe your characters. It was a big debacle even though I wasn’t actually playing at the time and I probably didn’t really need to migrate my level 18 sorcerer over.

Of course I did, and then promptly forgot about the game, again. Some of that isn’t my fault, seeing as I have 5mb/s download speeds a game like BDO (41 gigs give or take) takes me an incredibly long time to download. Their launcher also doesn’t let me set the speed of the download, which means I have to wait until the house is asleep and not using the internet in order to download anything. This is why I prefer to download things on steam, where I can set the speed so that it’s a rate that doesn’t actually interrupt the family using anything but still lets me download 24/7. Anyway.

After almost a week of downloading during the nights / evenings, I managed to get the entire game. I logged in – and I’m COMPLETELY overwhelmed and lost, more so than with ‘regular’ games because this one is pretty far out of my comfort zone. The only thing I could remember from when I played last is that you can fish while AFK.

So that’s what I did. I filled up my bags with useless level 1 fish and I stood there admiring the beautiful game while I played but didn’t play at all. I decided it would probably be best if I looked up some videos on how to play, and maybe starting over wouldn’t be too bad of an idea, either. They do have a bunch of very nice returning player / new player servers that are meant to get you caught up, so I created a guardian on one of the ‘season’ servers, and we’ll see if I can get into it at all. I certainly wouldn’t hold your breath, but stranger things have happened.

Happy gaming, no matter where you find yourself!

Happy Birthday GW2

Every fall I wander back to GW2, and it’s not looking any different this year. I love that they’re giving us an opportunity to unlock missed season adventures, including the Icebrood Saga. I picked it up on my main account, but still want to unlock it on my second account. The team has a ton of goodies lined up for the year, and I hope GW2 gets the attention it deserves. It’s still one of my favourite games to play. Happy 9th anniversary!

Developer Appreciation (Late)

Over the years I’ve done a few appreciation posts, from community managers to developers – and as my gaming years have rounded out I’ve come to appreciate so much more that it would be absolutely impossible to put it all into a single post so I’m going to go about things a bit different. First, I know that last week (August 18th-24th) was actually the scheduled blaugust DAW but I got my weeks confused and so now I’m trying to make up for it. Appreciation is appreciation, right?

I have always prided myself on being able to criticize a game or aspects of a game while remaining calm and reasonable. I understand that gamers are a passionate bunch, and that passion can be both beneficial and detrimental to the game and the people working on it. I think that developers are (typically) quite open to listening to their audience, even if they can’t actively implement everything everyone wants – but when the audience passes over a certain threshold it becomes more difficult to listen to them, and then we get a group of ‘loud minority’ that seem to take over. I know, I’ve been there.

One of my jobs when I was working for NCSoft was to take the information/reactions from the players every single time there was an update or a change, and compile it into a neat and tidy list for those higher up to read. Every public observation from reddit, facebook, twitter, the forums, gaming sites, I read every comment. I did my best to absorb as much generic information and feedback as I could, and then present it up the line so that they would be able to “see” how people were reacting.

The problem is in a lot of cases, the satisfied are not posting about it at those locations. They’re in game, enjoying the content. It’s such a biased and tiny little percentage of players that the information was always going to be slanted. Everything had to be taken with a grain of salt. Everything had to be debated internally.

There is so.much. that goes on behind the scenes that players never see, and even though you might think that no one is talking about a particular aspect or that no one notices abc thing is broken – trust me, it has been discussed. If a change happens, there’s a reason. Sure, sometimes changes go through that don’t have a lot of insight and may be a bad decision (after all, developers are people too) but that doesn’t mean zero discussion goes on about it. That being said, every games company is different and I can only speak about my own personal experiences.

For this game developer appreciation I want to include EVERYONE who works on video games, in almost any capacity (I’m not so fond of the people at the top, but that’s my bias). You have an oftentimes thankless job. Players change, the world changes, and you’re expected to keep up and change too – and people don’t LIKE change, so there’s always going to be someone out there angry who directs that anger at you. On the plus side, yay, they’re passionate about your game, you helped foster that – on the downside, yikes, they’re passionate because of a video game, and that can sometimes be a scary thing. I tend to keep pretty quiet about game mechanics and issues I have in games these days and focus on the positive because I know just how difficult things can be, and because I know that there are already a bunch of voices out there talking about the negative aspects, so why not be one of the positive ones. Chances are if I can’t say anything positive about your game, then I’m not playing it.

We appreciate you developers! Keep doing what you’re doing.