When you're first diagnosed with a disease like MS, you're practically inundated with support from friends, family and long-lost acquaintances. Everyone wants to know when they can bring you a meal or how they can pray for you, or (my favorite) they have the perfect cure for your disease. You get text messages of support, phone calls, cards, and posts on your FB timeline. It feels great to know that you have such a wonderful team around you, ready to walk through this with you.
Then, the days turn into weeks, which turn into months. The influx of texts and messages slows. You find yourself canceling prior arrangements with friends, which means that, over time, you're invited to fewer and fewer things. It's not an intentional slight, by any means. It's just a combination of things - folks don't want you to feel bad for having to commit to coming, or they're afraid you'll just cancel anyway. OR, worse, they're afraid you'll come out of obligation and feel horrible the whole time. You get used to watching parties and events happen without you, and you just start to adjust to this being the new "normal" now. You no longer get as many offers for a meal, or help with the kids "just because." It's understandable, though. MS is not a short-term illness that will resolve after treatment. It's not like breaking a limb or having an appendectomy. You go through those kinds of things, and there's an end in sight. There's a point where you no longer need assistance, and you can return to your normal way of life. It's easy to support someone through a season like that. You show up, take your meal, check on them once in a while, then you're done. With MS, those "seasons" never end, they're unpredictable, and there is always the possibility that they could suddenly get worse. So, it's hard to support someone with a chronic illness. I get it. It's exhausting to hear them talk about their pain, and it's frustrating to never be able to really DO anything to make things better for them. Folks just don't know what to say to someone with a chronic, disabling disease like MS, which is why they just start to back away slowly.
This is when your eyes start to open to the incredible support system that God has put around you for this long road. Between the parents who listen and make you laugh during the tough times, to the in-laws who come cook and take care of the kids while you rest, to the friends who text you just to see how you're doing that day. These are the ones who are at your side through all of it, no matter what. No matter how weird or painful or challenging the relationship gets, they don't back away - they press in. They respond to every crazy text message from you about how crappy your day is going and how unfair MS can be, and they don't judge you for feeling that way. They are intentional about reaching out and grabbing hold, so that you don't have to feel alone as you fight to hold onto some sense of normalcy.
I am so incredibly, eternally grateful for these types of relationships. But I'm not at all angry at the ones who have backed away - it doesn't mean I've lost those particular relationships. It just means that they aren't designed to walk this road with me, and that's okay. It doesn't mean they don't care; far from it. They love me just as they always have. God didn't call them to walk the road of chronic illness with someone else, and that's just the way He has designed things. They have another road to walk, with someone else, for another season. He has given me exactly who I need for this journey - no more, no less.
Today, as I type this, I'm fighting painful muscle spasms in my left leg. By far, my left leg is the most often affected. I've had pain and pins & needles in my left arm and hand lately, as well. On Wednesday and Friday of this week, I tried to forget about the MS and how exercise affects me. I thought, "Hey, why don't I just TRY jogging or jumping at the workout today? Why don't I see how I do if I don't modify everything?" So, I tried it on Wednesday night at my workout. On Thursday, I had all over nerve pain most of the day - it was the kind that feels like the underside of my skin is burning. Like it hurts where my skin touches the layers of fat and muscle underneath. It is horrible pain. However, I had also forgotten to take my CBD oil on Thursday, because of the change in routine with it being Thanksgiving. So, part of me wondered if that was the cause of the pain. On Friday, I felt better, so I went to a workout that morning. Jogged, jumped, didn't really modify much. Friday afternoon and evening, that burning pain came back. It sucks, so bad. It's hard to do anything (sit, lay down, etc) because your skin moves against the fibers underneath it and the pain gets worse.
The physical pain isn't the worst part for me, though. The worst part is when my Neurologist says things like, "Your particular disease isn't that bad, really. You don't have that many lesions, and they aren't in a bad place, and your leg issues will go away eventually." It's been a year, and I've only gotten worse. I think she's trying to encourage me, but I need a straight shooter. Don't BS me, lady. I'm no dummy. I have done my research, and I know that MS is a progressively disabling disease - one that is unpredictable. So there's no way she could possibly know whether my leg issues will "go away" or not. I surely hope so, but I'm not gonna hang my damn hat on that. This is real life, and she doesn't have a damn crystal ball. The "other" worst part is looking at where I was two years ago - two years ago today, I was running over 6 miles at a time - for FUN. I look at those stupid Facebook memories, and it just drags me down into the "What the hell happened to me?" cycle of thinking. I became a trainer so that I could help people see what they are capable of - so I could help guide them on their fitness journey, and so they could be a part of the CG community in the process. Now, I look at myself at workouts and think "How could anyone be inspired by the girl who walks the whole thing? I'm not exactly the picture of fitness here." Again, not looking for pity - just telling you like it is inside this crazy head of mine. This is how MS jacks with your confidence. I get it - MS changes your entire world. You can't stop it, you can't predict it, and you can't control how it affects you. You literally have to live hour-by-hour...or, if you're really feeling sassy, day by day.
I am having to learn how to let go of the athlete I USED TO BE, and take care of what I have now. That sucks for me, and, honestly, I still haven't accepted it. Just being real here, ya'll. I want to be what I was, physically, before all this. I'll get past it, one day. But grieving who you were - and who you likely won't be again - takes time. A lot of damn time, just so you know.
|Normal Brain MRI w/contrast dye|
|My MRI, w/contrast dye..the white spots are MS lesions|