Struggles of Real Life

We interrupt the regular scheduled programming to bring some real life struggles:

Living with a chronic illness royally sucks sometimes. There. I said it. I know that this declaration might be at odds with my goal writing here sometimes, but I wanted to share what the true, day to day struggles of this illness can look like. I am in the middle of a pretty significant crash. This is a common thing with those affected by ME/CFS. When we push ourselves outside of our envelope of energy reserves, a crash will shortly follow. How much you push will directly impact how bad of a crash you have. And this one has been incredibly disheartening and tenacious.

I returned recently from some relatively extensive travel to visit my family and Brandt’s family. I was already pretty much spent by the time our final day of travel rolled around, but we had about 8 hours on planes and in airports to get from OKC (where Brandt’s family lives) back to Boston. Without going into all of the unpleasant details (you’re still about to get some), we made it back to Boston after a pretty painful day of middle seats and delayed flights. I was incredibly nauseated on the second leg of our trip and wasn’t sitting by Brandt. I had to burp up and swallow down vomit for 3 hours between two strangers, desperately trying to focus on The Great British Baking Show while I waited for the void to arrive and engulf me into oblivion (okay I am being dramatic, but why do middle seats exist? Also, isn’t it an unspoken rule that the person unfortunate enough to have to sit here gets both of the armrests? My seatmates never received this life primer, and I was left tying my aching body into knots to keep from their pointy elbows).

 Once we arrived back in Boston (around midnight) we were met by all of the other Labor Day travelers trying to find Ubers and Lyfts home. It was mayhem. And also incredibly expensive! The 10 minute Lyft ride back to our place sat at $40. We thought we would try and wait it out. Surely 20 minutes would clear out most of the people, and we could find a reasonably priced ride. Nope. More hordes of people passed as I leaned heavily on our luggage. We decided I could take no more, and found an incredibly expensive Lyft of our very own. (Fun chronic illness point! It can be a real drain on resources. This is Boston. There is public transportation everywhere. But I can’t use it. We have tried, and it is too much to get up and down the stairs to the stations and transfer between lines.) Weird symptom time! My autonomic nervous system (the fight or flight response) is constantly up-regulated. With that, it is difficult for me to process a lot of sound, light, or people. So a crowd of loud, stressed out travelers and their equally if not more loud and stressed out counterpoints in the form of airport employees was not soothing to my on-edge body. I get that this is soothing to precisely no one, but I really just wanted to sit in the middle of the parking lot and cry like an overtired toddler. Side note: I get why those toddlers act the way they do. Social norms just haven’t beat compliance into them yet that making a scene isn’t allowed. They are still free to act how we all want to: scream until someone fixes it. Once again, I find myself veering off topic…

Well we found our Lyft driver and got the heck out of Dodge. But the fun had not ended. I don’t know if you have ever been in a situation where you really want/need to throw up but absolutely cannot. You are in a stranger’s car who nicely came to the airport (albeit for an outrageous amount of money, sorry, still salty about this “crowd pricing”) to bring you home. It wouldn’t be polite to throw up in their car. I was swallowing down vomit hard and whispering to myself “no, no, you cannot throw up.” The very nice driver, clearly telling I was in distress, handed back a plastic sack for me to spit up into until we blessedly arrived at our apartment. Once out of the car, I immediately collapsed onto railing outside of our place sobbing, letting all of the stress of the day just come out. Whatever had been holding me together until that moment vanished, leaving me too physically weak to stand and too emotionally weak to care that I was losing it in public. Rock star Brandt slung me over his back and got me up two flights of stairs. He then took off my shoes and calmed down before returning for our four bags. He was tired. A normal person would be worn out by the day we had had, but he had a sick wife to take care of and did it like the absolute freaking champ he is.

So I come back to repercussions of pushing myself. It isn’t just one hard day of travel that you have to get through. Where a good night’s sleep will reset your body and you can forget the stupid ordeal that is flying on a holiday. It is the weeks of recovery. And recovery back to a “normal” that would make most people wish for the flu. During a crash, it is all you can do to keep it together. Another day passes where the exhaustion is worse, the pain is intolerable, and your emotions are shot. All of my symptoms go even more haywire. More frequent and painful migraines, nausea sticking to me like gorilla glue, limbs feeling full of concrete, constant body aches, dizziness…you basically feel like an exposed nerve being used as a piñata by a jittery five year old. A few nights over the past little while, Brandt and I both just needed to just hold each other and be sad. Feeling the enormity of this illness all at the same time can be overwhelming. We just want me to feel better. We want so badly for me to wake up or find something that heals me or at least makes life a little more manageable. We are doing so much: endless doctors, prescriptions, supplements, diet, and physical therapy, that when a crash comes, and I feel even more miserable than usual, it is difficult to process and deal with. Living at my “normal” can be challenging enough. And then there is always that fear that I damaged myself. That I pushed too hard this time and made my illness worse.

Now for some practical advice to any who finds themselves in a similar situation to me: I know that I need to start making accommodations for myself. I should probably be in a wheelchair, but my pride is still alive and well. I think: “I can physically walk. Therefore I should.” But that isn’t right. If I was more willing to allow myself the accommodations available, I could do more without crashing. I am getting somewhat better about this, but it has not made its way over to how I travel. There is also the problem of my primary disease not being well understood or even known about. I wanted to walk up to flight staff at one point and ask for our seats to be changed so that Brandt and I could sit with each other. To try and explain that I had ME/CFS and needed him with me. But I didn’t. I wasn’t sure they would know what that meant and did not want to be a bother. I also know that I should have made arrangements before to board the plane early, but I didn’t. The reality of dealing with a debilitating illness is a process, and I am still in the middle of that process. You want to hold onto normalcy so badly. You always think “well I can stand, I can wait in line”. But no, you can’t really stand all that well and should stop pretending that you can. You don’t want your illness to touch and influence every part of your life. But it does. You feel like the moment you give in to those influences, you have given up. But it is better to be freed by admitting there is something you can do to make life easier. So get the wheelchair. Get a doctor’s note. Ask the stranger to switch seats. Be open about your struggles and don’t always concentrate on someone having it worse. Yes, there are people who have it worse. But that doesn’t mean your pain doesn’t matter.

Whew, that was all heavy, so please enjoy some photos from our family travels! Despite the recovery necessary, I wouldn’t give back these memories and the chance to be with these awesome people: