But you don’t look sick, or another similar epithet is the most common thing heard by someone with Multiple Sclerosis. Having an invisible illness means suffering the pain, drowning in the fatigue, and living the misery without showing the usual signs of an apparent handicap. We know that people who say this generally mean well, even to compliment us, but it’s actually a subtle way of delegitimizing our disease. If you don’t look sick, it must not be that bad, right? It must not even be real.
I don’t often talk in-depth about my symptoms in my posts, a smattering here or there, but I think mostly I don’t like to wallow too much or feel like I’m complaining so I leave it out. When I’ve climbed a mountain or completed a big route, I like to revel in the positivity of the accomplishment, not in the pain along the way. However, as I get ever so nearer my goal of finishing the Colorado 14ers, I’ve realized that this may be adding to the “I don’t look sick” perspective. It may be time to explain what an extremely difficult journey this has been for me and thus what a big deal it is for me to finish the list. Thus, instead of my usual trip reports of a couple of the last (really fun!!) mountains, I’ve done, here is a day in the life, so to speak, of what it’s like to have my health issues.
There are 58 mountains in Colorado that are over 14,000 feet, and starting 2017 I had 8 of them left to summit. While I was (miraculously) able to do one during my spring semester, Mount Wilson, which was at the same time one of my favorite and scariest climbs to date, going into this summer I had 7 left. Really, only 6 of them, because my last one, the “finisher”, is an easier one that can be done any time of year. Given that I’m a grad student and aside from volunteering and some of my research to pursue, one would assume I would have had plenty of time to get those done in the summer months.
That’s just not the case when MS is involved. First off, that first month of summer? Wipe it off the drawing board. After a quite stressful end of a semester and some digestive symptoms flaring, mid-May to mid-June was off the table for climbing – even though it was my favorite time for it with spring snow. Each week I would intend to get out into the mountains, would plan a climb, but even a couple hours volunteering (I work with children with disabilities who do equine therapy) would be enough to knock me out for the whole next day. If I could barely do that, there’s no way I could make it up a mountain. Certainly not any of the difficult ones I had left. It’s kind of like having the flu or bronchitis for a month – you may get a couple small things done here or there, but mostly you just bide your time until it passes. I was lucky it only lasted a month.
When I did start feeling better and attempting routes, not all of them were successes. And with long drives and even some amount of hiking, that still meant recovery time for me. Which means waiting another few days or longer before trying again. Normal people exercise and build up strength, muscle, endurance, etc. That might be the case for me over a six month or year period, but in the short term exercise is counterproductive and makes me need to rest exponentially longer than the amount of original time I put in. It’s like walking uphill in sand – one step forward and sliding three back. The time I need to rest after a mountain is quite a bit, and I can’t do too much exercise or climbing in between.
What’s It Like When I am Climbing
When I did start feeling a little better this summer, and began attempting some mountains in July, even then MS was always with me. It’s with me every day, every minute, every second of my life. I need to make sure I bring more food and water than in the past – 4 liters a day on a mountain. I CANNOT forget my cooling scarf because if I get overheated I will literally loose my mind, i.e. cognitive issues of confusion, memory loss, and trouble with decision making. I have to plan routes differently because I am so much slower than the average, or even slower than average (not exaggerating here) person. Route description says slower people may want to start at 2 am? That means I’m starting at 11 pm. Yep. Climbing all night long if I want that route. Tried that a couple times this summer, on two different routes, and it didn’t work. Sleep is one of the biggest triggers of my symptoms, and if I mess with sleep it’s pretty bad news.
The third time it worked. Luckily, I started to get some successes and summits. I’m getting better at carefully planning around my disabilities and knowing when to stop before my symptoms show up in a bad way, putting myself or my partner in danger. However, that also means turning around more often than I used to, or not even going in the first place. I’m someone who is very used to pushing myself, to ignoring the pain; for instance, after 3 knee surgeries shit just hurts, and I get through it anyway. MS doesn’t care and doesn’t allow for that because I’ll simply fall over on the trail and not be able to walk, use my hands, or speak for an hour (yes, that’s happened a couple times, too.)
I had a trip to go get Eolus Peak, located in Chicago Basin in the San Juan’s in Southern Colorado. It’s a long journey: 6.5-hour drive one way, then take a train to get to the trailhead, then a 6 mile, 3,000ft hike up just to get to the campsite before another 3,000ft to the peak. I’ve done it before but wasn’t able to nab one of the four peaks down there, so had to go back for Eolus. My original intention while down there was to do them all again, or maybe Eolus and a nearby 13er. However, after the first day backpacking in and the second on Eolus, I decided to sleep in and snuggled up for 13 hours straight. This is what I call conserving spoons. You see, spoons is the most common phrase you’ll hear someone with MS say about ourselves. If you haven’t heard of The Spoon Theory (read about it!), the basic premise is that someone with a chronic illness only has so many spoons, or energy, to go around, and if you start taking spoons away from one day, you won’t have them for the next. Normal people don’t have to worry about that – sure you will be a little tired the next day, but you’ll still function properly. I won’t. After getting my one peak in Chicago Basin, I realized that was enough for me and I was happy to just enjoy the beauty of the area and conserve my spoons to be able to get back to the train without symptoms or placing a burden on my partners.
Are Any Climbs Pain and Symptom-Free?
It’s always something with me. I’ve jokingly said I wish I was a hypochondriac, because at least then it wouldn’t be so painful. I can recall very few mountains of the now 56 and some odd repeats that I’ve only had minor or “normal people” aches and pains. Consider my most recent climb, North Maroon Peak. It and its neighbor South Maroon have eluded me on many attempts, hence why they are my last peaks. Heading into the weekend I took an extra day of rest and sleep on Friday, and chose to hike in on Saturday, climb Sunday, despite Monday being the first day of my semester. It seems as though I still wasn’t quite well-rested enough even then, as I forgot, for the first time ever, my knee brace.
I’ve only done one 14er, my first, without a knee injury, and have been climbing with that $1200 custom brace for 5 years. I still can’t believe I left it at home but determined to still go I bought a $17.95 brace at King Soopers Pharmacy in Aspen and went up the mountain. My knee did surprisingly well on the way up – it was a marvelously fun mountain that I thoroughly enjoyed! However, on the way down my knee felt less like a joint and more like an overheated watermelon ready to burst at any second. And a week later as I write this, it still feels like that.
The Maroon Bells are iconic peaks, but still very dangerous – they even have a sign out in front because so many people have died on them. However, I found North Maroon to be great climbing, and if not for my stupidity regarding my knee brace I may have actually had a pain-free day on it. The MS hit the next day, as I hadn’t conserved enough spoons for starting school. I didn’t have quite enough energy to combat the heat of a 90 degree day and a non-airconditioned room, so sure enough I had to stumble out of my first class with a claw-like spastic hand, confusion, and weird speech – what happens when I get overheated. Thankfully, my classmates know me well enough by now, and are very gracious, and they grabbed up my things and helped me to my car.
My stupidity wasn’t done, though, because after I got my body temperature cooled down I decided I needed to go to the grocery store for some dinner. This is probably what my friends and family yell at me about when they say I push too far. Couldn’t use a basket, the rungs hurt my arms when there is weight in it. Plus, a cart is better to lean on when my legs give out. Had to put my earplugs in (I don’t have to use them too much anymore), because when I’m tired, my body can’t handle sounds and noises and they become painful. Eventually, I made it through the store and back outside with my bounty. Smartly, at least I had parked in the closest handicap spot even though I had been walking fine on the way in. 10 feet away from it a wave of exhaustion hit me – the spoons were gone. I mean gone. I stood there, leaning on my cart, 10 feet away from my car, at least 10 minutes before I could take another step. A few steps more, the car was only about 5 feet away, and another long rest. This is what is meant by MS fatigue – so tired I couldn’t take 3 steps, I literally couldn’t raise my arm to push my cart. Raise your arm right now. Go ahead, do it. Can you imagine being so tired you couldn’t do that?
Grateful to Be As I Am
Climbing these mountains, or climbing anything be it rock or ice routes, is really, really tough for me. But I love it, and I will always do it. I spent almost a year with all of the symptoms I’ve mentioned above plaguing me for the majority of my days, to the point I couldn’t leave my house. I have recovered and learned symptom management in order to return to the things that bring me joy, even if I’ll never be as strong or good at them as I once was. After staring down the barrel of a wheelchair and spending many of my days loosing cognitive capabilities, I’m profoundly happy and grateful to be in grad school and to be climbing again.
I write this not to complain about how shitty it is to live with MS (it is, don’t get me wrong), but to hopefully help you understand a little more about my disease. Perhaps next time you see photos of me on peaks, or someone who seems to be “walking just fine” from a handicap spot, or hear someone with a chronic illness say “I’m tired”, perhaps you’ll see that things aren’t always as they seem.