My husband and I have been trying to train for a big hike at the end of the summer/beginning of the fall. We have been hoping to do a short through-hike – something that we could actually be able to take off work for but that is still an accomplishment.

Completing a through-hike has been a dream of mine since I knew such a thing existed. I climbed Mt. Washington in New Hampshire with my dad when I was in my late teens (my first >4,000-footer) and we encountered an Appalachian Trail (AT) through-hiker at one of the huts on the Presidential Range. I had vaguely heard of the AT before but that was my first real introduction to it. At first I really wanted to do the AT, but as I got older that prospect started to seem less feasible (when would I ever be able to afford taking that much time off?) and also a bit less desirable as the AT became overcrowded. I both don’t relish the idea of through-hiking with hordes of hikers and don’t want to be part of the problem. (I still have great respect for ATers though.) The dream eventually shifted to the Vermont Long Trail, 273 miles through the Green Mountains from the south to the north border of the state.

Given various future plans and prospects, it started to look like this summer might be our last chance for a while to try such a thing. We started vaguely thinking about it and planning on it in terms of the big picture (e.g. not planning any other lengthy vacations around it). Then my joint issues started getting worse, and I both started getting worried about the feasibility of the plan and started wondering if this would be the last shot for more than just logistical reasons.

Right now, I am working really hard at physical therapy exercises for various joints, trying to prevent major/overt injuries, and trying to slowly and carefully get into hiking shape by balancing the benefits of exercise (i.e. strengthening around the joints) with the risks of exercise (i.e. easily injuring myself). But I don’t honestly really know how feasible this plan is. I worry that a doctor will tell me it is ludicrous to think I could do this. I also worry that a doctor will say I couldn’t possibly have much wrong with me if I am planning on doing such a serious hike. I worry that although my joints might hold up for a day or two, the multiple days combined with sleeping on hard surfaces will catch up to me quickly. I had already been particularly worried about downhill sections, and we have already discussed plans for possibly taking some side trails with gentler slopes to avoid the steeper descents, but now I am also worried about the flatter days that we had until recently been hoping to make good mileage on. I’m planning on bringing kinesio tape, athletic tape, leukotape and a cover roll, and at least some braces, but then that is also additional weight and space in the pack (and carrying additional weight could also exacerbate my issues, but my husband can only carry so much extra…).

But I also feel like in many ways my joints are probably about as good as they’re going to get. So if not now… when? My goal has sort of become to be prepared enough to make it possible – keep it to a minimal level of pain that can be pushed through – and to keep from doing permanent or long-term damage by trying. But I can’t entirely know how it will go until I am on the trail.

It complicates matters that I don’t have a firm diagnosis yet. That has been frustrating for many reasons. First the lack of validation, the doubting of my own experiences, not feeling like I belong to a community, not being sure what to tell people, etc. (Side note, Zach Kornfeld from Buzzfeed’s the Try Guys released a vlog that explains these feelings so well. I highly recommend watching it — The Try Guys S9 E6 “I Have an Autoimmune Disease.”) But on top of this, I want to stay as active as possible in spite of whatever is going on and whatever pain I am experiencing. I can continue through a fair amount of pain, and I am never sure how much pain I can safely ignore and whether ignoring pain is doing (further) damage. I am also not sure what strategies are best to implement to keep my joints in the best shape possible, and whether there are other treatments out there that could be helping me. It’s harder to know how to balance the benefits of activity with the risks of it when we don’t know what’s going on.

Of course, on top of the joint issues I am now not sure how potential episodes of vertigo, flares of vulvodynia and other gynecological pains, and possible migraines might affect the trip. And those are arguably even more unpredictable than my joint issues, although at least I can be pretty positive that I won’t do permanent damage by pushing through the pain. But they are also more likely to spike to high enough pain levels that it becomes incredibly difficult or impossible to push through – I already had one migraine on a multi-day backpacking trip and it really really was not fun. I’m working on getting management techniques and medications figured out before the trip, but these tend to be agonizingly slow processes.

Sometimes (like while writing this post) I feel guilty that I can even consider such a thing. How can I consider myself to have an invisible illness, to have chronic pain, if this seems remotely possible to me? But the truth is I do have chronic pain — it ranges mostly from what I would call mild to moderate and only sometimes spikes higher, but it’s there every day. And I do definitely have invisible illness(es). The degree to which I am affected varies, and sometimes being active doesn’t hurt much more than being still, so I don’t see the point in avoiding what I love if I will be in pain either way.

Right now, I’m taking it one step at a time. I’m working on training for the hike, doing as many weekend hikes as we can fit in (varying the length and intensity so we don’t overdo it and so that we don’t go crazy with our already-packed schedule). I’m working on figuring out medications for the endometriosis and vulvodynia, and hoping those don’t start giving me new intolerable side-effects, as well as going soon for pelvic floor PT. And we’re working towards possible answers for the vertigo. I can’t do much if anything more than that right now, and I’m just hoping it’s enough. And I’m trying to avoid overdoing it and physically injuring myself or mentally burning myself out.