If you have been following my blog, you may remember that I had a flare up in late December that put me on a three day course of Solumedrol steroids to reduce inflammation and calm the searing nerve pain in my left leg. These drugs work by overriding my adrenal gland’s functions to produce certain anti-inflammatory hormones that also reduce activity of the immune system. The introduction of steroids into my (or anyone’s) system requires you to then taper down your consumption of the steroids so that your adrenal gland can catch up and start producing these hormones in smaller amounts naturally again. Otherwise, you go into withdrawals which can include extreme fatigue, headaches, weakness, dizziness etc. I must say that I feel these effects even when following the prescribed tapered doses.
It took me about a month to orally taper down from steroids (thank goodness the IV infusions are over), and I thought I could finally get my sleep schedule back on track, let my hormones get back to regulating themselves, let go of the low level anxiety and exhaustion that comes with the ‘roids. Maybe my husband would stop calling me “Aimee hulk” (he may be joking, but in his defense, I’m definitely not as pleasant to be around on the steroids.)
Then a couple weeks later I went out for a nice Valentine’s Day happy hour with my husband. One cocktail and and one glass of wine later and my body was immediately all a-buzz. The nerve pain was back. It wasn’t going away. Reluctantly, I called my Neurologist and since the steroids have been successful in the past at working to stop the pain, he prescribed them again. According to him, the Ocrevus usually takes about 2 months to start protecting me, so it makes sense that I would still need some assistance from steroids in the meantime.
It is now late February and I just finished ANOTHER three day infusion of Solumedrol, which means getting stuck with needles daily and spending hours hooked up to an IV while the drugs drip on into my system. Within 24 hours there is immediate relief of the most intense pain. Are all my symptoms and tingles gone? No, but the trade off for how my body adversely reacts to steroids is worth the relief from the constant pain and weakness I feel when neuropathy kicks in. I need to keep reminding myself of that the past couple of days while my mood and body recovers from the intense doses of steroids yet again.
Getting through these rounds of ‘roids poses it’s challenges, for sure. They certainly don’t contribute toward a sunny disposition on life or my ability to skate as well as I would like to while playing hockey, but I’m grateful in many ways for the lessons I’m learning about letting go. Yes, the unknowns of this disease or life in general are very hard. But what if it’s okay to be comfortable in the unknown?? A friend shared an email with me today on this subject matter. This guy has some pretty awesome things to say about letting go and about life in general. I look forward to following what Mark Manson has to say. He has a no BS, yet profound and heartfelt way about getting his points across. So far, I think he’s spot on.
In conjunction with that, I had some pretty profound realizations myself sitting in traffic the other day. Per the recommendation of a friend who was also diagnosed relatively recently, I took the MS101 class down in Denver at the Rocky Mountain MS Center. I consider myself pretty well researched in all matters MS at this point, but it was actually a really helpful couple of hours. There is always more knowledge to be absorbed and I learned a lot without getting lost in the weeds on all of it. It totally reaffirmed for me that balance, fine-tuning and tweaking to what works best for me is always the best option.
Stress is particularly noticeable in people with MS because, as they explained, stress is always your body’s number one priority. It will deal with stress first and then move on to other issues it needs to address. In the case of MS, if you are stressed, your body is working to deal with that instead of avoiding the “potholes” in the metaphorical road that is your brain aka the lesions or scarring that are causing your nerves to go haywire.
In hind site, when it comes to travel on the roads that exist on a larger scale around here, any Summit County local knows not to plan a Denver day for a Friday when you will be heading back up the hill at peak rush hour along the I-70 mountain corridor. Well, I didn’t do that. So I had some time to sit in traffic and contemplate. I thought, “Oh my, God. What if the purpose is to just be.” Think about it, why is sitting in traffic so frustrating? Your ego takes complete hold of the situation, you are the center of the universe and you are so much more important than everybody else. It doesn’t matter where everyone else is trying to get to, and all this traffic is holding YOU up from where you want to be. This is stressful because expectations about your level of importance aren’t aligning with reality. On the other end of the spectrum, I understand why people are hesitant to want to think they’re not extremely important. Don’t misunderstand. You are important, you just don’t have to sink to the level of “Nevermind then, what’s the point?” You still matter even if you are not the center of the universe. Of course you do. You’re very important, you’re just not the only one that is. And it doesn’t take something earth shattering like curing cancer to matter. What if your worth isn’t determined by your actions but by just being?
I think a lot about stress management with my MS. It gets drilled into your head…stress management, stress management, stress management. But what does that actually mean? Sure, take a walk, meditate, do yoga. But if you’re just going through the motions that stuff isn’t going to help unless you’re actively sitting with some of these feelings or practicing a connection with what I call my “inner peace pool.” Recognizing what comes up emotionally without getting into analysis paralysis is tricky, but I’m enjoying watching where my mind is travelling as I physically crawl along the highway on my way home from Denver.
I’ve been reading the Power of Now which has given me many great epiphanies, and real life situations like this help me put them into perspective and practice. I do have a choice how I react, or don’t react, to certain situations. It’s really hard in the moment, but as I look back at how I could’ve handled the conversation I just had with my husband a few minutes ago, I’m at least aware of what feelings came up, what I said and how finding my inner peace pool can be more productive for me and those around me moving forward. I’ve got a lot of my plate right now and adding steroids to the mix doesn’t help. I know that can be misconstrued as and excuse, but I think these are important reflections on what is happening and how I can be better at embracing and being comfortable in the now and the unknown. Not doing so is the source of a lot of stress. It’s taken me some time to figure out that the unknown is the cause of some stress, and I tried to account for that by planning and putting reassurances in place. By thinking about it too much. Now I’m realizing that I need to be alright in the unknown. It’s time to pull up a chair and get comfy here. There is only so much I can do by way of controlling the controllable. The rest is up to the powers that be. So, just breath. And just be.
When I walked through my door a few hours later, I rounded out may day with what turned out to be an intense yin yoga class that ended with some releasing meditation. I like the Yoga with Kassandra videos on YouTube. She had me repeating, “I am calm, I am at peace, all is well and I am safe.” It hit me and I cried. Like, a lot. But not in a sad way. In a huge relief kind of way. It is okay to cry out the tension and release the stress! And just because you do that, doesn’t mean you have to live in that space forever. Let it all go for a little while and then move on. Take some time to make space for yourself to stop analyzing and planning and just be. Trust. It is okay and it will all be okay.