For those also diagnosed with Chronic Exertional Compartment Syndrome, do you ever find yourself bummed out that you can’t partake in activities you once enjoyed, actively avoiding anything that will bring on the pain, or being constantly overcome with extreme exhaustion from the lack of sleep and constant ache?
Yeah, sounds like an infomercial for my current life. Welcome.
The pain you experience during activity is one thing, but the mental effects of constant pain are a whole other ballgame. I wasn’t familiar with these effects, and if you’re like me, you may be overlooking some side-effects that have developed due to this sneaky neurological nightmare.
Nobody had ever explained to me what ‘chronic pain’ was, and with the realization that I’m in the thick of it, I’m sharing my personal experiences and methods for combating the negative feelings and habits I’ve developed.
Some of the mental struggles include:
1. Avoiding outings with friends
The use of my leg directly correlates to the amount of pain I’m feeling. For instance, I usually feel my best in the mornings when I’ve been off my feet and laying horizontal. My worst moments are in the late afternoons/evenings after I’ve been running around all day. As my pain has been consistent and daily for the past three years, I’ve gotten to the point where I give up and stay as immobile as possible.
However, I live in a city and any time there’s an invite from friends that takes me outside my imaginary ‘ring of safety’, I struggle to gather up the courage to go. My ring of safety includes a made up geographic region that aligns to: 1. Proximity to my home, 2. Ease of getting an Uber, 3. Activity type. If any happenings occur outside of this ring, I’ll make up an excuse or deny plans altogether.
Lately, I’ve also noticed that I intentionally avoid specific activities because most of my friends don’t know or understand my compartment syndrome battle. At work and in my personal life, on the exterior it looks as if I am holding down the fort. Nobody ever knows or realizes how much pain I’m actually in, and it’s tough for them to relate when I do share my story.
It feels lonely.
METHOD OF COMBAT:
Still a work in progress; however, I’m trying out the accountability method and buddy system. I thankfully live with an incredibly supportive boyfriend who has become my champion. One way he helps me to nip my pattern of avoidance in the butt is to hold me accountable for specific activities throughout a given day.
Weekends for me are the toughest because they used to be filled with outdoor hikes, exercise classes, and walks around the city. Now that it’s a struggle to walk, let alone stand for an extended period of time, I’m less inclined to leave my apartment. I don’t want the pain!
Therefore, I’ve started writing down a short list of daily goals that I share with my boyfriend. I have a deadline (usually before the end of the day) to achieve more than 50% of my goals. For example, my list could include things like:
- Making myself a nice dinner
- Having a glass of wine on the roof of our building
- Taking a walk around the block
If I do two of the three goals, then it’s a success! To hold me accountable, I text my boyfriend photos of my activities so he can help keep me motivated. It may seem trivial, but the personal satisfaction and empowerment I get from doing basic activities is totally worth it. As lame as it may sound, I feel one step closer to normalcy again (like the pun?).
Overall, having a solid support system is critical when dealing with the mental effects of chronic pain, and I feel lucky that I have a handful of strong people in my life to help me through this.
2. The battle of plummeting self-esteem
Because I can’t work out or be active regularly, I have been gradually feeling less confident and more frustrated with myself and the way my body looks. I miss going to the gym multiple times a week, lifting weights and watching my body change before my eyes. It was always an exhilarating and rewarding experience for me, not to mention it was just plain fun going to the gym!
With all the social pressures constantly judging us for every post and photo (damn you social media!), all I want to do is curl up in a tiny ball and roll myself into a deep dark cave. Unfortunately for my sometimes sad self, that’s not an outcome I’m willing to accept.
METHOD OF COMBAT:
When I was slightly more mobile, I used to be really good about having small planned exercises that I could do before bed. The exercises focused on muscle strengthening and were paired with stretches. Staying active was something that always made me happy.
There are some days, however, where I feel incredibly exhausted and in so much pain that I can’t bear to do the exercises. It’s funny, though, how your mind will play tricks on you. What I sometimes dread, usually is the most helpful thing for myself and my body after a long day.
I’m surprised at how my stretches can be a distraction from the pain. It just takes some willpower and determination to get over that first hurdle and get into a consistent habit.
3. Exhausted from my exhaustion
This is a tough one to confront, but if you’re like me, then your compartment syndrome has progressed to the point that it takes awhile, even in the evenings, for the pain to chill out and subside. I am now used to waking up throughout the night and getting minimal sleep – when I say minimal, I mean like 5 hours or less during the weekdays.
METHOD OF COMBAT:
The weekends are where I catch up on sleep in general with naps here and there, but it’s obviously important to stay consistent with your rest; therefore, in addition to my evening stretches, I regularly take Magnesium pills before bed.
It may seem random to those unfamiliar with supplements, but it was something that my acupuncturist suggested and I’m sold! Magnesium is one of the essential macro-minerals and its primary function is to enable healthy enzyme function which ultimately relates to promoting better sleep, less stress, pain relief, etc.
I like this post here that addresses some of the additional benefits from Magnesium in greater detail.
My evening dose is just one 120mg pill. Although it won’t completely absolve all of the pain and inflammation, it’s a great start to keeping your body as on-track as possible while it’s healing from the day’s activities.
Anyway, to come clean, I’ve had this post written for a few days now, but it’s honestly been tough for me to get up the courage to post it. Dealing with the mental effects of managing a chronic condition is tiring and debilitating in and of itself, so I hope that those of you reading this find comfort that you’re not alone!
A special note:
I’ve recently received a number of thoughtful comments, and I just want to thank everyone who has been so supportive by sending along words of encouragement. It means so much to me and helps to keep me positive, even on the days where I feel overwhelmed and hopeless. As I continue my journey to find a solution to this CECS, I’ll keep the posts coming!
Thanks again, all. I appreciate you.