Ok, so I am writing this to kind of describe what having MS is like for me. It is not my intention to make people feel bad for me, I don't need that, save it for someone who does. I do feel like I need to explain it though, because I am always asking for donations for various MS societies, but also because I live a pretty nice, or at least it looks great. I am no longer working and I am out there drinking beers and posting pics all over. My online life certainly makes it look like MS ain't no thang, but I'd like to talk about the things that aren't always online. Again, I am not doing this because I want people to feel bad for me. Know that many folks with the disease are way worse of then me.  This isn't meant to talk about anything long term, this just describes the issues I encounter on any given day, even a day when you are out with me.

I'm not even sure where to start with this, I guess i'll talk about some of the feelings and sensations i have on a daily basis. Well, for one, the right side of my body tends to have a numb feeling, often. Sometimes it's just a let, arm, or hand, but sometimes it's the entire right side, head, face, everything. Like many of the things i'll talk about, if you were to look at me, you'd have no idea. This causes a variety of issues, from falling down to suddenly dropping things. It's not really predictable for me when things will go numb or how long they'll stay that way. This is a big reason why i don't drive anymore (or shouldn't anyway). Imagine that feeling you get when you fall asleep on your arm and wake up and it's numb and tingly, it's a lot like that.

It's not all numbness though, in the past year i've begun experiencing spacsticity in my legs. The muscles in my legs will move on their own. Not a lot but enough. The best way I can describe it, is that it feels like I have all these worms in my legs that are crawling around inside. This is a really annoying feeling. Imagine having tompay attention to something or even fall asleep with that, it's damn near impossible.

Also with my legs (I wish i could replace them with prostetics, i really do. I am the only person that sees someone with prostetic legs and thinks, man, i wish that were me), I get some severe pain. It feels a lot like my legs are on fire. Ive never had that happen but that's what I imagine it feels like. It's just a nasty burning feeling. Sometimes, i can seem angry, usually when that happens, if i look or sound pissed or jump to conclusions, it's because i currently have this sensation in my legs and it's driving me crazy and that crazy is bubbling to the top. That's something ive been working to control better though. While the burning feeling happens a lot, I'll occasionally have a sensation where my legs feel like they are soaking wet even when they are dry (if only they could happen at the same time to put the burn out eh).

Of course I take meds for all of this, with varying degrees of success. These symptoms are what I have while on meds, so things could be worse (and believe me, when i miss taking meds, they are). All that medication leeds to another issue, nauseousness. I've thrown up more in the past year then then 34 combined before it.

Again, these are things that are happening all the time, not matter how I look or what I am doing.

Probably the thing that has hurt me the most the past year, has been an array of cognitive issues. These can be hard to explain. For one, I have some really bad issues with memory. From not remembering what I was doing to forgetting things I've known for ages. I've had several moments where i've forgotten my debit card pin, same pin i've had for 15 years. The other day, I completetly forgot one of my best friend's names. I had to ask someone. Sometimes I'll be watching TV and suddenly realize when a commercial is on, that I have no idea what I was watching. And this happens all the time. And I know many reading this will say, oh that happens to me all the time, i forget things all the time. Not like this you don't. I garuntee you havent happen with the frequency that it cost you your job, as it has with me. One of the most horrible things to me is when people tell me they forget things all the time and try to compare it to me.

I've also developed some cognitive issues around numbers and keeping things in order. Another hard thing to explain, but I have trouble doing things in the right order. Things get mised up in my head. I had a simple task a couple weeks ago, weighing our five pounds of grain. This should be easy, but for me, it was a nightmare. I couldn't keep track of which number i was on or which part of the task. It was demoralizing. I was a pretty highly functioning software engineer at one point. Not trying to boast, but i was very, very good at what I did. Mostly because it all came naturally to me. Coding, logic, math, multi-tasking. All of that was my bread and butter but now it's gone. I'll take all that leg pain every day if I could just think the way I use to. I live an die with lists now. I am looking at my phone alot, yes, i may be on facebook, but i am probably also looking at my set of lists on my phone.

Temperature sensitivety is something i tell people about a lot. Most of you know that the heat will greatly effect every symptom I have, almost instantly making it worse. Just last night i took a shower that was a bit too warm and it laid me out for the night. I needed extra pain meds and the AC turned up to full blast to recover. What folks don't know though is just how sensitive I am to it. If the temperature in the room goes up by one degree, my body tells me about it. It's like a super power you don't want. Even one degree warmer and I'll start having worsening symptoms of some degree. While cooler temps are the best for me, with this sensitivety, I strive to find temperature consistency more then anything. That's not all that easy where i live. If it's hot outside, it may be cool inside and vice versa. Life means traveling between those environments which makes me feel crappy.

And now on to fatigue, another invisible but awful part of my life, maybe the worst thing. I often see a graphic on Facebook MS groups that says it's takes someone with MS five times the energy tomeo something as it does a regular person. I repost that a lot because it is an evil truth. The littleest things wipe me out. If i want to go out with friends or go to a homebrew club meeting, i have to rest before and after. If you see me out and about, or see a picture of me out doing something, know that for that moment you witnessed of me, inspend five times that much time paying for it. I rested up before and i laid in bed, likely for a couple days after it. I am very careful about planning these days and try to schedule my rest days. if i am going out on saturday, then I need to do nothing on Friday, Sunday, and Monday. That's one of the reasons I post so many pictures and status updates, because I am so damn happy to be up and out doing something, I just can't help telling the world about it in my own way.

I have all these problems and they are a nightmare at times, but if you were to look at me, you'd never know it. And I like it that way. Everyone has some kind of invisible struggle they are going through, so I urge everyone to consider that in your daily life. Be conciderate of people. And above all, enjoy life, for all of the issues i've mentioned, all the problems I've had, I still genuinely love life. If i've learned anything in the past year, it's that there are a lot of small things in the world that can bring joy, you just have to open your eyes and your heart to see them.

Cheers,

Devin