The MS Roller Coaster

This last week has been a serious roller coaster, both with regards to my MS and beyond. I had one of those weeks where my disease wanted to make itself very much known, and I felt as though it was reminding me of its presence at every turn. In living with MS, these things just happen sometimes - sometimes we can't escape acknowledging the burden of the disease and how it impacts our lives. 

I went on a long-awaited weekend getaway to Arizona with my husband, my brother-in-law and his wife and toddler, my in-laws, and another couple that are friends of the family. It was planned with the intention of having a weekend full of golf for the boys, beers by the pool, relaxation, and a substantial amount of In-N-Out (obviously). We kicked off the trip with a flight delayed by two and a half hours...you can imagine how happy my 16 month old niece was about that...and my body was just about as thrilled as she was to be sitting in uncomfortable airport chairs for hours prior to being contained to an airplane seat for another two. When we finally made it to the desert, half of my trip was spent in bed feeling horrible; I couldn't stomach being upright thanks to severe nausea - the joys of multiple sclerosis!

That's one of the biggest struggles I have with MS: it can absolutely make your lows lower, but it also has a knack for taking the wind out of your sails when  you should be enjoying a high. Whether it's the physical symptoms nagging at you, or the uncertainty of what could come, MS really has a way of putting a damper on even your best days sometimes. Those are the days I find myself in the mindset of "this isn't fair," because while I should be celebrating, rejoicing, or experiencing total happiness, instead I'm often stressing over a what-if, managing a disease side-effect, or having to enact excessive planning measures to prepare for what lows could accompany incoming highs. This is an area of MS that unfortunately, there's no easy solution or cure for. 

So, jump aboard my MS roller coaster - you're in for a doozy. 

This last week, I finally received my final and official job offer for my absolute dream job - one that I have quite literally worked and waited years for. Now if this offer had come along a year ago, my reaction would have been pure and total excitement, relief, and joy. I'd be celebrating with family and friends and accepting every invitation someone gave to host a celebratory gathering. Healthy me would have experienced pure bliss.

The me that has MS? Not so much.

What if my body can't handle the rigorous, structured, schedule of the three month training that comes with this job? What if my disease can't take the hot, humid east coast training site in the peak of summer? What if I have a day that I'm plagued with pain and fatigue to the point that normally I would just stay in bed? What am I going to do without my husband by my side for twelve weeks when he's the person I go to when I need support or to vent or freak out or talk through my symptoms? What if I have a relapse while I'm 1000+ miles away from my trusted neurologist? How do I tell my assigned roommate, a total stranger, and my classmates, also total strangers, about my limitations and what symptoms should raise concerns? Are they going to be accepting or supportive? Should I even tell them at all? Will the new employer's insurance plan approve my next infusion that's coming up? What if they won't? What if sick me can't do what healthy me asserted in my applications and tests that I could do? What if this dream I've had since I was thirteen comes crashing down because of a disease I have no control over?

That is what me with MS thought when I got my dream job offer. 

Suddenly my roller coaster felt a lot less like the ones you know you're safely locked into with a harness and safety bar for a quick thrill of a ride before you hop out and on to the next ride; with MS, life's roller coasters feel a lot more like the ones you used to build when you were little on Roller Coaster Tycoon - the ones that you just didn't finish the track on so the cars went flying off out of control. I actually started getting annoyed when people were congratulating me and wanting to have celebrations. I was frustrated with the fact that they, in their healthy, trustworthy bodies, could only see the good in the situation whereas I had to think about the what-if's and how I could be ready for them. It made me long for the time when I could only see the good pieces of the situation and I didn't have to have an entire crisis-aversion plan sorted out in my head just in case.

That's one of the many realities of MS that people who don't have it can't understand. For our healthy peers, their thinking about MS stops with the physical symptoms, the medications, and the potential for disability. They forget - or rather never even realize - how much this disease lurks in every corner of your life far beyond physical symptoms. It's been hard to explain that to people through this process; that's great that they want to celebrate, but what I want, and what I need, is to be given space to process and plan. (I'm a planner as it is, always have been, so the need for extra planning tends to put my brain into overdrive.) My husband has been great in fending people off a bit, in being honest that I don't have much time before I leave for training, and that while their intentions are good in wanting to celebrate, they need to ask not tell me about celebrations. I will admit that a significant part of why I would almost rather not even acknowledge this accomplishment is because I don't want to field questions about it. While asking what I can expect or what it will be like and so on is just pure and honest curiosity from the healthy people around me, what they don't realize is that questions like that stoke the fire of all the anxiety I already have around the situation, because I don't have answers. The answers I do have even are clouded by the what-if's that come with chronic illness and the associated risks and challenges. 

Unfortunately I don't have a lot of advice on how to navigate this or to how to get the people around you to understand; I wish I did because it would have solved a lot of my problems the last few weeks. I have challenged myself over the last several days however to be honest with people about what I can and can't handle and the fact that I am overwhelmed. My mom wanted to make all these plans this weekend, my in-laws wanted to plan a dinner, my friends wanted to turn 4th of July into a send-off and I forced myself to sack up, put aside the fact that they might be disappointed, and I said no to all of them. I simply said I wasn't up for it or I didn't want to, because that was the truth. As I've said in past posts, the people who truly care about you and support you will understand, because they will let it be about you when it should be instead of making it about themselves. That, I think, is the greatest tell of who is on your team: who can put aside their own disappointment in favor of your needs and well-being? If you want privacy and they want to share news, the ones who really care about you will still stay quiet. If you want to lay low and handle things on your own, the people who care about you will let you do that even if they're dying to throw a party. Those are the people you want in your corner because they'll be there when MS puts a damper on your highs, when you want to celebrate the highs in spite of MS, and even in those moments of the lowest lows - those people will be there. 

You may not be able to fix or remove the role MS plays in your life's roller coaster, but it sure does help to have some trustworthy conductors and maintenance crew members - of that I am sure.