A clean snap and crack sounded as my face smushed into the floor, my nose bending completely to the side as I tried so hard to soften the blow with my arms. Where did my muscles go? They didn’t show up for this fall. And of course my face would land right on the hardwood strip that separated the tile and hardwood floor from the laundry room to the family room. Nothing I haven’t dealt with before except this time I think my nose is broken.
I pushed it to the right and to the left, ran my fingers along the bridge and gently squeezed the sides. Didn’t feel swollen, and no blood (well, maybe a little). No wincing after my own chiropractics to try and diagnose the issue, but wow, my nose was hurting. And the snapping sound reverberated in my head.
Shortly thereafter I came crashing down again, this time in the kitchen, dropping a bag full of onions with a loud thud as I hit the floor. The little brown paper skins of the onions scattered everywhere. I was just taking two steps from the counter to the refrigerator. Two steps. You can’t handle two simple, small steps? Sigh.
And maybe I should mention I struggled to get to the bathroom in time before the nose incident. I’ll just leave it at that to avoid completely embarrassing myself. For now.
This is MS. This is the BS. It sucks living with this crippling disease, but I know this day will pass. The sudden flare up (or flair down) of my body was trying to tell me something. Inflammation must be raging and the question is, why? And the only real answer is, I will have to wait and see. My early bet is that my body is fighting off something else and my immune system cannot handle both jobs.
With my MS, I find that my body doesn’t do well when my immune system has to juggle multiple tasks. This is probably living truth for all my friends who struggle with autoimmune disorders. I can often tell when I am getting sick (which, knock on wood, is not very often) because there will be an abrupt worsening in my MS symptoms. My baseline, my “normal”, is pretty low right now and just when I think things could not be worse, it turns out they can be. The MS finds a way.
Everyone lives with their MS and autoimmune disorders differently. They are as unique as the individual they plague. Some insight into my daily struggles:
Muscle weakness – muscle depletion in my quadriceps & hamstrings, signal interruption in my hip flexors. No comprende amigo. Foot drop.
Spasticity – muscle tightness and muscle shortening, specifically in my legs. I can’t lift my legs properly because of the muscle weakness and add to that reduced flexion. Awesome.
Raynaud’s Phenomenon – ice cold feet and hands. Skin discoloration. Appearance of dead feet. Attractive, let me tell you.
Body fatigue – that feeling of heaviness in the body. The inability to move and extreme exhaustion where I just cannot do one more thing. Thankfully this occurs seldomly, but the struggle is real when it comes. This is when my body waves the white flag. Done. Fried. The synapses are simply exploding.
These are the symptoms that are contributing to my decline, however small or big. These are what I work so hard every day to combat in an effort to at least reach a plateau. The downhill inertia is strong and it is taking all my will to hold myself back. Hold myself up really. Being mindful in both spirit and body is critical. Spirit keeps you charging forward. Being mindful of your body though, really listening when all you want to do is scream, is what you need to help your mind understand. Understand that a flare up in your symptoms is going one of two ways: the scenic route or the expressway.
What is the difference between a serious, real exacerbation and a temporary, pseudo-exacerbation? Time. The wait and see approach. The only exception to this is when you experience totally different symptoms than what you currently live with. That is a phone call to the doctor right away. How long have you been experiencing these symptoms? Are they different from what you regularly experience? Is it affecting your daily life? How is it different from your baseline? Questions upon questions. Trust your instincts, there is always a reason that you pick up that phone for help.
The real warning I need to overcome is to ask for help and not do what I think I can still do. “I can’t” is not really in my vocabulary. Truthfully though, this honesty thing is the actual real struggle sometimes and I just can’t do certain things anymore. Some I have accepted and some I have not. There are legitimately bad days. There just are. And they pass.
Food has been an important outlet for me, as has exercise, even in the very basic ways that I can still manage. And meditation. Things that are predictable and that I can control. There is a saying that I cannot always exactly remember but I think it goes something like “You will regret tomorrow what you didn’t do today.” I carry this with me. I am rarely bored, but keeping this little reminder keeps me in check and directs me toward doing what I know is right: taking my supplements, getting on my bike, picking up the weights instead of staring at them, pausing to stretch my legs, prepping food, taking a break to write, playing with my kids, stepping out into the sunshine, taking a deep cleansing breath, closing my eyes for white space. Repeat. Things that are predictable and that I can control. I could go on. Find what you love most, what makes you smile. If you’re smiling, you’ve got it. You’ve found your nirvana, even in the smallest of doses. IT DOES NOT MATTER. Health, wellness, healing. They all spring from joy.
I hid MS for a long time. Because I could. It was invisible to another eye. Not my eye, I knew I was crumbling inside. I remember hiding the flaws in my walking. I remember when sitting for a few minutes was all the recovery I needed. I remember when I could have a glass of wine and my walking improved. Seriously thought I was on to something there! I don’t know that is all lost forever, you can never know. Hope is a powerful, powerful feeling. I am hopeful, but yet I have also accepted. Accepted, not settled. There is a fine line and I will not cross it. The fine line between acceptance and giving in (up). I certainly cross the line between my limitations and doing what I want to do. I have taken “when there is a will, there is a way” a little too far. Mostly out of fear of being a burden. Gasp.
So where is that line? Am I really a burden because I need to sit and rest? Take a time out? I do not know why I have always felt the need to be doing. Resting is not a punishment. I know this. Unfortunately sometimes I have to be forced to accept it.