Firsts.

Firsts: one of the scariest parts of MS. Whether it's your first MRI, your first neurologist appointment, your first relapse, your first round of steroids, your first MS hug, your first bout of severe pain, or any first experience of the other mysterious symptoms that tend to pop up for those of us with MS, firsts can be scary and overwhelming. The good news? You aren't the first. I've found that to be a comforting sentiment; when I experience a first, I turn to the endless number of resources and people online who have likely had this first before - maybe even had their second, third, fourth, or tenth round of whatever I'm experiencing for the first time. 

I think my hardest first with MS was the MRI's; not only were they my first MRI's of my head and spine and therefore the first times I had to be entirely inside the MRI machine - ankles and knees are much easier - but they were also accompanied by the uncertainty of "is it MS or is it not?" which is stressful in and of itself. I had family and friends who had had MRI's of their head and necks so I could gain some insight from them, but not had gone through them with the accompanying uncertainty I was facing. Stress, uncertainty, and claustrophobia, it turns out, are a recipe for disaster. I don't think I've ever gotten as little sleep before a medical procedure than I did the weekend leading up to my first MRI; I'm sure many of you reading this can relate. The good news? The first is the worst and the rest aren't as bad. I know, I know, everyone says that. I never said MRI's ever became fun outings you look forward to, but they do get better when they're no longer the big, scary first. You start to learn what music is the most calming or distracting for you, (thank you Bastille Pandora for preserving my sanity), you start to get a feel for what helps you cope with claustrophobia, (for me, towel over the eyes and keeping them closed is way better than the alternative), and you start to get into a routine because you know what to expect. That's half the problem with firsts - the mystery of them - once you remove that, rounds two, three, and beyond are far less stressful. 

Still feeling a little unsure or overwhelmed? Let's talk about some other firsts that you may have felt alone in.

How about your first relapse and/or round of steroids? My first relapse post-diagnosis I didn't even realize I was having; I switched neurologists (you can read that saga on my post here entitled Doctor Shopping), and my new one wanted more detailed imaging. When she got the results, there were new glowing spots on my brain indicating I was in the midst of a relapse. I'm honestly not sure what's scarier - the random symptoms that emerge out of nowhere to say, 'hey, you're having a relapse,' or the fact that you can have one without having any idea or warning it's happening. The first relapse brings with it the what-if whirlwind: what if this one is bad? What if this one leads to disability? What if we can't get it under control? Wait, what do we even do TO get this under control? What am I supposed to be doing and who am I supposed to be informing of this?! Now if you have a good neurologist, they can quickly and confidently answer these questions and talk you off the ledge; for me, my first relapse led to another first: IV steroids.

Many people have taken steroids for one reason or another prior to getting MS considering they're used throughout medicine for various purposes. For me, I had experience with oral steroids thanks to a brutal case of mono in college (and yes, I know that some say the same virus may have something to do with MS, and yes I'm bitter about it - I suffered enough with 2 months of mono!). I hadn't noticed any side effects with those, but I also already felt like all-around garbage thanks to the mono so there very well could've been side effects that I just didn't notice. That being said, I was a little nervous to get blasted with high doses of steroids through an IV for five days straight; my mom was also freaked out, my husband took on his usual and very effective role as the calming presence, and my little brother had no shortage of hulk jokes...such a punk. Ultimately, the moderate stress around the steroids were unfounded; other than the inconvenience of having to drive to the hospital each day to receive them, they really were no big deal. There were, however, side effects, so don't let me trick you into thinking steroids are without their challenges. If you're going in for IV steroids be prepared for a few things: 1) if you're like me, your blood pressure will be way up by day three - they will monitor it and tell you if/when you need to be concerned, but typically you don't need to. 2) Your sleep will not be great; steroids either tend to keep you up or will wake you up in the middle of the night feeling like you're reading to run a damn marathon. I fell into the latter category - it was less than ideal, but not the end of the world. 3) FOR THE LOVE OF GOD BRING CANDY TO SUCK ON BECAUSE YOUR MOUTH WILL TASTE HORRIBLE. I apologize for the all-caps, I know that makes it seem like I'm yelling, but that's because I am. IV steroids will make your mouth taste like metal and water makes it ten times worse so hard candy and flavored beverages will be your friend, trust me. Ultimately though, steroids are not that big of a deal in the grand scheme of things. Further proof that 'firsts' usually seem a lot scarier than they actually are. 

Symptom firsts are the ones I find the most complicated. They aren't always scary, but I feel like for awhile after your diagnosis you live in this world of, 'wait what was that?' and 'is this MS or is this something else?' - I'm six months in and I'm absolutely still deep in that world. The latest first: the infamous MS hug. I had heard about the MS hug from diagnosis on, on blogs and informational resources, and in publications provided by my doctor. The description of the 'hug' is so vague and variable I was left wondering if maybe I had already experienced it but just didn't realize that's what it was; let me tell you, if and when you have a 'hug' - you will know. Talk about a bizarre sensation! I thought I had tweaked my back, but was confused because the pain I was having set higher than usual, and off to each side between my ribs, and it wasn't a constant. It came in twinges out of nowhere that were no joke. I went to the chiropractor, a strategy that usually provides me instant pain relief, but an hour afterward the twinges were back. After one particularly painful one that wrapped further around to the front of my rib cage I had the realization that what I was experiencing had to be that damn hug I had read about. I went with my usual strategy, hopped online and searched for blog posts - not scientific, doctor-y stuff, but real life patient experiences - and sure enough, several descriptions of other MS patients' 'hugs' were exactly what I was experiencing. Not life changing, but a frustrating 'first' nonetheless. Fortunately, as with all firsts, I was not the first, so I was able to take in other peoples' coping strategies, give them a shot, and find what worked for me to provide relief. Just another example that remembering it's your first but not the first ever can guide you to resources to make the second a little more bearable. 

Now obviously the internet cannot solve all of life's problems (sorry, WebMD) nor does it contain 100% factual information 100% of the time. But if you need to hear about someone else's experiences, if you need to feel validated, if you need tips from an MS-veteran on how to approach or handle a symptom or situation? That the internet has covered. There's a seemingly endless array of blogs, publications, and beyond offered up by people who just want to provide some insight into the world of MS so that others aren't trapped living in the mystery of a disease that so many people don't understand. That's why I started this blog after all - I felt like there was a lack of perspective offered up by younger MS patients, and I didn't want any more 20-something's to have to feel lost through their MS journey like I did at first. 

So when you come face to face with a first, find someone who faced it before you - they may have advice or helpful insights, but even if they don't, you'll feel a lot less overwhelmed and alone knowing you aren't the first and only. Let others' firsts help you to prepare better for the second's.