Training with a Chronic Illness
An overview of my hiking training plan for 2024.
After my most recent surgery, I started to feel like there's more potential in what I can do physically. So, in January of 2024 I decided to seriously try training to be able to do some more intense physical activities by July/August of the same year. I was able to do backpacking in 2020, but after the end of that summer things really collapsed for me on all fronts mentally and physically. I had surgery in December 2021, and I never quite got back to being able to handle outdoor activities. Things got to the point I really wasn't able to walk a whole lot, let alone try and hike any real distance during 2023 until I had surgery in October of 2023. Since then I've been able to hike a bit again.
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My Backstory
I've done the concept of training to be able to hike again twice before. In 2019 I started training in Apr/May to be able to hike an 8.5 mile trail as my goal. I was coming back from being bedridden, and it was a real challenge. It started with me only being able to walk 5 minutes, then slowly upping the time and distance I walked. I almost broke down and cried when I reached 3 miles because I didn't feel like hiking was something I'd ever be able to do again due to my chronic illness. By the end of that summer I was able to hike the 8.5 mile trail, even with a knee injury from dirt biking (which I also was able to do twice that summer). For this round of training I was only focused on hiking. I had issues with multiple muscle groups not being as strong and experienced issues with pulling my hip flexors due to overuse.
In April of 2020 I wanted to see if I could build on what I had been able to accomplish the last summer, but with less pain due to muscle weakness. So, I did research and found some strengthening exercises as well as stretches I could do to try and help build a baseline strength and flexibility to help prevent injuries. I was able to accomplish a lot that summer with multiple hiking and backpacking trips.
I burnt out pretty bad at the end of that summer and was constantly having to mitigate the horrendous endo/adyno pain I dealt with, especially while hiking and post hiking, on top of the fibro pain I generally experience. I was burnt out physically, but especially mentally because I had to mentally force myself to take each step, and I'd hit walls where I'd just break down and cry. I had certain areas that were still lacking strength-wise and I discovered with backpacking and hiking there were certain problem areas for me that I wanted to work on. One being breathing and the second being balance.
I also realized that even with the training I was doing leading up to hiking my glutes were still not engaging which made my calves and hip flexors take the brunt of my hiking. I only had 3 months to get "backpacking ready," which with a chronic illness was somewhat unrealistic, and in the end I did end up paying for it after the fact.
After that summer things progressively went downhill until I had surgery in 2021. I was dealing with a lot of health issues and my fatigue levels were terrible. I wasn't up for much in 2022 and by winter of that year, things declined further. I spent most of my time reading and doing some light walking each day.
I tried doing a few short hikes in 2023, but even that was too much for my body. The pelvic pain got so bad just general walking could cause me to be up all night. I had surgery in October 2023 which took away the majority of the pelvic issues I was dealing with. I snapped back a lot faster post-surgery and by 2 months post was being able to walk and hike 1–3 miles. In January of 2024, after a month long flare, I decided I wanted to start working toward my outdoor goals for the year. So with my own research, and the help of my physical therapist, I came up with a "training routine" to help me in all the areas I want to strengthen for the activities I want to do.
Why
I think "why" is probably one of the most important pieces when it comes to trying to do something with a chronic illness. Having a clear why helps.
The reality is when living with a pain-based chronic illness and debilitating sensory issues, lots of things in life fall into the Type 2 category of fun. Most hikes and backpacking experiences are a test of how much pain I can tolerate and how much sensory overwhelm I can endure. Reading back that sentence sounds like I'm torturing myself omg. I view it more as challenging myself than torture, well at least while I'm sitting on the couch writing this.
The reason I want to work toward being able to hike and backpack is because of the small moments that happen where I feel alive, in awe, or content when out on the trail. It's those moments, as rare as they are, that keep me wanting to go back for more. Being outdoors is the closest I get to feeling like I exist, and the world around me exists. It's the closest I get to feeling at peace. So, even though it's painful, challenging, and scary, I keep trying to be able to go back for more. Since I don't know if I might reach a point I can't hike anymore. I've had periods in time where I can't, and it sucks. So, while I have the ability, I'm going to keep trying to do what makes me happy.
My four main goals are to be physically strong enough to try and do the following things:
Hike the last section of the Timberline Trail I have left (Cloud Cap to Ramona Falls) — 16 miles.
Hike Harding Icefield Trail in Alaska — 8.5 miles with intense elevation gain.
3 to 4 day backpacking trip.
Kayak camp with my sister. Kayaking 3–4 miles round trip.
So, in the process of recovering from a major surgery, I want to be intentional about strengthening my whole body. I'm starting at square one, once again. The ups and downs of living with a chronic illness can really be a bitch in this regard. It isn't just a continual upward progression; sometimes there's big drops and you lose all your progress... which I did.
I at least have a baseline of being able to walk. I pace in the house 5–7 days a week for half an hour to two hours every day. Each day I just walk until I started to feel worn out. On a flare day, that may only be 5 minutes, but on really good days it can be two hours. I finally wore my fitbit once to track how many miles I walked and was shocked how far I was actually walking. From there, on top of feeling better pelvic wise post surgery, I decided I wanted to try and create a training plan that I could start in January where I gradually increase the intensity of what I'm doing so hopefully I'm up and in working order for my planned summer activities. I had to be really honest with myself about where I am physically and approach training this time in a way that was sustainable and worked for me, not against me. So it needed to be flexible and gradual.
Now here comes all the disclaimers... the biggest one being "what works for me, might not work for you and vice versa." My intention with this post isn't to instruct others on how to train or workout, I'm not qualified to give such advice and would highly recommend seeking out people with qualifications to give such advice. I've been learning what works for me and my body, which more than likely will be different from yours. I've incorporated some concepts from other blogs and resources into my training which I will give credit and links to.
This also isn't supposed to be some inspirational bullshit story about how you can just "overcome," "heal," or "push past" your chronic illness. Everybody's limitations vary and can fluctuate. Just because I'm on an up and your on a down doesn't mean you aren't trying hard enough. You're doing the best you can in each moment, same as me. The point of this post is to just share the concept of what I've tried to do because I've struggled to find anything that discusses training with a chronic illness within this niche. Plus, I'd like to be able to look back on this post myself.
Building a Training Plan
When I first started thinking about training again, I went and looked back at what I'd done before and the resources I'd saved. Then I started researching online for things along the lines of "training for backpacking" or "training for hiking." I just consumed a lot of information and then picked out the parts I felt resonated for me and what I'm personally trying to accomplish. I had to work hard to remind myself that just because I have to approach things in a different and slower way doesn't mean I won't be able to accomplish my goals. The hard part is that a lot of training plans heavily rely on hard impact cardio, which even at my best I'm not able to sustain. So I had to approach what training looks like for me in a different way.
Assessing Fitness Level and Making Goals
One thing I came across was evaluating my current level of fitness, to which I wrote down: "I am able to walk on flat terrain 1–2 miles comfortably. My core, shoulders, and arms are all rather weak. I’m recovering from a major surgery. My breathing and endurance aren’t good, but that will come with training."
I decided to list out my main goals, as to what I'm wanting to be able to do, then broke it down from there as to what I would need to be able to do to accomplish those goals.
70% Rule
Main Targets
Add Weight
Weekly Layout
End Goals
Brainstorm ways to make training plan flexible
16 Week Training Goals
Week | Date | Walk Goal | Pilates Goal | Resistance Goal | Hike Goal |
Week 1 | Jan 13-20 | 1 mile | 5 min | 1 set | 1.5 miles |
Week 2 | Jan 21–27 | 1.25 miles | 5-8 min | 1 set | 1.5 miles |
Week 3 | Jan 28 – Feb 3 | 1.5 miles | 8 min | 1 set | 1.75 miles |
Week 4 | Feb 4–10 | 2 miles | 10 min | 1 set | 2 miles |
Week 5 | Feb 11–17 | 2.5 miles | 10 min | 1 set | 2.5 miles |
Week 6 | Feb 18–24 | 3 miles | 12 min | 2 sets | 3 miles |
Week 7 | Feb 25 – Mar 2 | 3 miles | 12 min | 2 sets | 3.5 miles |
Week 8 | Mar 3–9 | 3.5 miles | 15 min | 2 sets | 3.75 miles |
Week 9 | Mar 10–16 | 3.5 miles | 15 min | 2 sets | 4 miles |
Week 10 | Mar 17–23 | 3.75 miles | 15-18 min | 2 sets | 4.5 miles |
Week 11 | Mar 24–30 | 3.75 miles | 18 min | 3 sets | 4.5 miles |
Week 12 | Mar 31 – Apr 6 | 4 miles | 20 min | 3 sets | 5 miles |
Week 13 | Apr 7–13 | 4.25 miles | 20 min | 3 sets | 5.5 miles |
Week 14 | Apr 14–20 | 4.5 miles | 20 min | 3 sets | 5.5 miles |
Week 15 | Apr 21–27 | 4.75 miles | 20 min | 3 sets | 6 miles |
Week 16 | Apr 28 – May 4 | 5 miles | 20 min | 3 sets | 6.5 miles |
Above I show the first 15 weeks I planned out. I decided to not plan all the way into the summer yet and to re-evalute around the 10–15 week mark how I wanted to continue onward. Since I already changed the progression at the 4-week mark, I realized it was rather probable it would change going forward as well.
Below I'll go into more detail as to what each area covers and how I approached it. I'll also have updates as to how it went in reality not just ideally.
Walking — 3 days per week
I pace inside regularly, and it's something I am able to do most days. It's just walking back and forth on a flat surface. I felt this was a good place for me to start. I decided to set my goals for walking based off slowly increasing distance — my goal is endurance first, not speed, so there are no time constraints on training. This is important because with my chronic illness some days I may walk fast and other days significantly slower. All that matters is that I'm moving, and I wanted to keep my focus on movement.
I started off with low mileage on my walk days and gradually increased. Like I mentioned above at certain week points I started to incorporate pack weight and certain gear into my walks. It was easier to ease into carrying a weighted pack when doing it inside on a flat surface. I also was able to work on breaking in my trail runners.
As I progressed into spring and it wasn't so cold and raining, I also started walking outside on our property. We have a hill I was able to walk up and down to use as my way to increase my incline/decline when I wasn't able to go to a trail.
With this walking category it can always be changed to a hike if I'm up for one that day.
I use my Fitbit to track my distance when walking. I use Gaia GPS to track my hiking. I also keep track of the total time and my average pace. I felt that was a good way to see any passive increases in speed.
UPDATE June 2024: I've had to be really flexible with the mileage during flares and I've become a lot more flexible with what I do. Sometimes I fall back on my old approach (that works very well for me) of just walking until I'm starting to fatigue. Some days that's 30 minutes and other days that's two hours. I've been section hiking the Oregon coast trail a few times each month and know I'm able to do some back to back 5 mile days, but when I'm not doing that I tend to range between 2-4 miles a day which seems to be my happy place and is still helping me sustain and build on what I am doing. As the summer goes on I might try upping mileage consistently again, but I'm happy with where I am at and I'm being able to sustain it currently.
Pilates or other exercise — 1 day per week
My physical therapist recommended trying pilates and I decided it was something I wanted to incorporate into my weeks. I do wall pilates and my goal is to get to the point I can do 20 minutes. I was barely able to do 2 minutes of pilates when I started. I found some wall pilate videos I like on Youtube that I've been using. It's a really great workout for the legs and core with what I do, and it's a nice way to spice up my week. My body seems to do okay with pilates. It definitely pushes the line of my tolerance, but I have been able to slowly increase and it remain sustainable. Obviously, this could be substituted for any other kind of exercise one might prefer.
UPDATE June 2024: Once I got further into the spring (the peak of my flaring each year) it started to not work for me or be sustainable. So I've turned this day into a rest day most of the time or sub for walking. I might eventually add in another exercise, but I've been a lot less rigid in my weekly schedule which has helped me still be able to do things even with some nasty flares.
Resistance/Stretching — 2 days per week
I wanted to have a few days dedicated specifically to strengthening my muscles, improving my flexibility, and working on by balance and breathing. I created a hodgepodge workout plan by combining all sorts of different exercises from different resources.
I have my Resistance/Stretching days broken into certain pieces:
Stretching/Myofascial Release Stretches
Strength Training
Quads
Glutes
Hamstrings
Lower Leg
Core
Shoulders
Arms
Balance
Breath Work
Cool-down Stretches
Generally I spend 15 minutes doing the stretching/myofascial release stretches. The middle section: resistance training, balance, and breath work — vary in length of time depending on my tolerance and the number of sets I'm doing each day. I end with my cool down stretches that tend to take around 5 minutes.
Stretching/Myofascial Release (MFR) Stretches
I decided to break these stretches/exercises up into five subsections. Each week I choose certain exercises from each group to do. Certain ones are more advanced and as my body strengthens I can switch out easier workouts for more intense workouts.
MFR Core Stretching/Exercises
Cat Cows
Diaphragmatic Breathing
Child's Pose
Posterior Pelvic Tilt (hold for 3 seconds)
Pelvic Floor Endurance Hold (holds 10 secs, rest 10 secs)
MFR Upper Limb/Neck Stretching/Exercises
Scalene and upper trap stretch
Levator scapulae stretch
Child's pose side stretch
Thread the needle pose
Median nerve glide
MFR Lower Limb Stretching/Exercises
Hamstring stretch with yoga belt
Supine calf stretch with yoga belt
Prone quadriceps stretch
Supine hip flexor stretch with strap
Calf stretch off step
Piriformis stretch
MFR Glutes/Hip Flexors Workouts
Side lying hip abduction with pelvic tilt contraction
Standing bent over hip extension
Donkey kicks
Lunge with pelvic floor contractions
Side lunge
Band walks (anklers)
Sumo squat
MFR Back & Shoulder Exercises
Scapular retractions arms at side
Wall pilates — arm extensions
Bilateral caption to 90 degrees
T's on Physio Ball
Resistance Training
Balance
Breath Work
Cool-down Stretches
Example: Week 2
UPDATE June 2024: I did really good with the strength training until I hit April. I had to stop and I've slowly started reintroducing things. I needed to reduce the amount I was doing and not do it in such a rigid way. I'm starting to feel up for trying to do this again. I mainly want to add in arm/shoulders and balance in particular again.
Hiking — 1+ day(s) per week
My goal is to hike at least 1 day out on a trail. If I'm able to get out more than once, that's great and it replaces the walking for that day. I slowly increase with this and really try to listen to my body when I'm out on the trail. Slow and steady is the name of the game for me, especially starting out. I've been able to handle more than I initially predicted which has been exciting. On week 4, I did two 5–6 mile hikes in the same week! My increases besides miles is pack weight, incline/decline, and elevation change. Once I get closer to summer, I'm hoping to see the positive effects of strength and endurance from moving so much regularly.
UPDATE June 2024: April was a rough month for me with not a lot of hiking, but after getting through that month I've been able to hike more and longer distances than I expected. I section hiked multiple sections of the Oregon coast trail in May, did a snow hike to a peak, and was able to hike more even if there were some weeks I had to take it easy due to fatigue or sensory overload. By the end of May I'd hiked 102 miles so far this year!!! So even doing short hikes consistently really can add up! I try really hard to do one hike each week, but some weeks the sensory is too bad to leave my safe environment at home and I've really honored that for myself. I think it's actually helped me be able to do more at different points in time like when hiking the OCT.
Mindset
Honestly, I think mindset is one of the hardest parts when it comes to attempting to do things while living with an illness that can be limiting. It isn't just "mind over matter" or "think positive thoughts," because both of those approaches can be detrimental to my body and my mindset.
I feel what's useful for approaching mindset can vary widely depending on a person and their personality. I am naturally more of a realist, can tend to push myself too far, and deal with anxiety. So what I end up needing to do when it comes to mindset is these three main things:
Being realistic about what I am physically and mentally capable of.
Focusing on each small step and not the entirety of what I'm attempting to do while in the moment.
With the help of my therapist, I've been able to develop some ways of coping and questions I ask myself to help myself be able to do what I'm wanting.
Understanding why our responses to situations are the way they are can help us slowly change and rewire our neural pathways to have a different response. For example, before going on a hike the anxiety can get very high and I start catastrophizing, my brain is running through all the ways I could die, everything that could go wrong. My brain is trying to feel in control. So on the drive to the trailhead and at the trailhead, I tell myself "I have a choice to make. I can either do this hike or I can turn around and go home. Yes something could go wrong, but it also could go right." Just giving myself a choice helps me feel in control, negating the thought loop. Some days I have had to turn around and go home. But I've been able to do a lot more now that I better understand how my brain is trying to protect me from a perceived threat or something scary and new.
I also deal with a lot of self-doubt and anxiety around my ability to do things with a chronic illness. More so than just being self aware. I decided to write out a message to myself that I hung up in my room and in my workout room along with pictures of the hikes/backpacking trips I'm wanting to go on this summer. I'll share it here, because I think it sums up what I'm trying to say better than I can right now.
The main point is that "it's okay to try and do things with a chronic illness." I might not succeed, I might have to alter my plans, or I might be able to do what I set out to do. I've had to shift my focus from accomplishing a certain thing to focusing on enjoying the journey and just trying. I can tend to have an all or nothing approach to life. When my all or nothing is "my body needs to be perfect and able bodied" to get outdoors or I won't be able to do anything, that's a very limiting view. Which I have been working on changing.
With the dissociation I deal with I've gotten to the point I have to remind myself that "It's okay to do things whether I feel real or not," "It's okay to hike and not feel real," and "It's okay to try even when I don't feel real."
If you have access to therapy or already have a therapist, discussing mindset can be really useful. Having that support has definitely helped me figure out how to work best with my mind to accomplish the things I want to attempt.
Considerations
When training with a chronic illness, there are a few things that I end up having to consider more so than the average, everyday able-bodied person. (But I honestly think anyone would benefit from becoming more aware of their body.) Such as:
What are my current physical limits?
What is the difference between being sore and causing a flare?
How much pain is too much?
In what ways can I manage pain?
How do I adjust my gear/routine to accommodate certain gear or physical issues that come up?
How will I deal with burnout if it happens?
What can I do to make sure I'm not pushing myself past my window of tolerance to avoid burnout?
What are ways I can adapt exercises to fit what my body is capable of?
What kind of movements make my body feel best?
What types of support do I need in place to be able to work toward this goal?
Why am I doing this?
What are ways I can make my training schedule and goals flexible?
How will I measure success in a way that isn't harmful to my mental health?
How it's going
Around week 4 I was exceeding my goals, and so I changed the interval of increasing them. I saw a lot of progress in building things up. I got to the point I was being able do a lot more than I expected.
Once I reached Week 10 and did my first section hiking of the Oregon Coast trail, things fell apart for me. I dealt with a lot of fatigue and many intense flares over the month of April. I got to the point pilates was increasing the severity of my flares and I had to cut it out of my rotation. I dealt with pretty severe sensory overload and burn out. I wasn't up for leaving the house and my goal became walking multiple times a week, inside, regardless of how long or slow. My goal became just moving some. I had to reduce the strengthening exercises and skip it some weeks. It felt really discouraging after having so much momentum.
This time of year, March–June, tends to be the hardest for me. I'm utterly worn out and my body just doesn't have as much mff to push. I really had to remind myself that just doing something is enough, and on the days I can't that's okay. I had to scale back my goals and once I feel some traction I can start building them again.
I think this can end up being one of the most frustrating parts of living with a chronic illness. Even though April really threw my goals out I did have a lot to celebrate. I was able to hike a 10.5 mile day in March, I have already hiked 53 miles so far this year (as of April), which is more distance than I have hiked each of the past three years. So even if I'm at an idling point right now, I still have things to be proud of. And choosing to listen to and take care of my body is my greatest accomplishment. Trying to foster self compassion and self acceptance is challenging, but I'm trying.
In May I was able to hike multiple sections of the Oregon Coast Trail and at the end of the month I hiked to Lookout Mountain in the snow and had to navigate the whole way. Then in June the fatigue, appointments, and new medication started to take their tole and I've had to take it a bit easier again. I guess I'll just have to wait in see what I can handle in July.
I've discovered Pilates isn't the right fit for me. I'm still working on what I want to change that day in my workout schedule to. Even though my workout schedule has changed I've decided to keep all the info and the same workout layout from the start because I think it's a good starting point. It can be easily changed and adapted. I think my journey with this really shows that scaling back, adapting, and even changing how I approach certain things all are part of trying to train with a chronic illness and that's okay. Even with the big changes to my workout plan I've still been able to do things. It doesn't have to be all or nothing. My ability can vary from month to month and day to day. That's okay.
I'm being able to move more again and slowly adding things back in, in a way that works for me.
Bibliography
Bor, Kristen. “How to Increase Your Lung Capacity for Hiking.” Bearfoot Theory, 25 Apr. 2024, bearfoottheory.com/improve-hiking-lung-capacity/#:~:text=Inhale%20in%20for%20a%20count,spine%20to%20help%20exhale%20completely.
“The 25 Best Arm Exercises for Women - Best Arm Workouts.” Womens Health Magazine, www.womenshealthmag.com/fitness/g19988698/sculpted-arms/. Accessed 28 Apr. 2024.
"I can do hard things." - Brene Brown
Eldridge, Heather. “How to Train for Hiking & Backpacking Trips.” CleverHiker, 2 Feb. 2024, www.cleverhiker.com/backpacking/how-to-train-for-a-backpacking-trip/.
Fuel for the Soul, et al. “Hiking Training Basics: How to Train for Backpacking and Thru Hikes.” Fuel For The Sole Travel, Outdoor & Adventure, 31 May 2020, fuelforthesole.com/physical-training-for-backpacking-and-thru-hikes/.
Inverarity, Laura. “11 Quad-Focused Strengthening Exercises.” Verywell Health, Verywell Health, 31 Aug. 2023, www.verywellhealth.com/quad-strengthening-exercises-2696617.
Sarah. “How to Increase Stamina When You Have Limited Training Time.” Miss Adventure Pants, Miss Adventure Pants, 3 May 2020, missadventurepants.com/blog/how-to-increase-stamina/.
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