The reality is that not everyday you are going to feel like a hero and want to shout from the rooftops how you want to change the world by being an advocate for a crappy disease. Some days are good, and others aren’t so good. But we must take the good with the bad, always. It’s just how it works. The trick is not to get sucked down into the black hole of impending doom and depression because once you start inching closer you reach the point of no return and down the black hole you go.
MS a lot like a black hole. There is this whole world of unknown and we are still learning about this disease every day. How to get closer to it. How to explore more about it. Why it acts the way it does. How to remedy the situation if you are getting sucked into its relentless vortex of chaos. The black hole represents the unknown, the vortex of domino side effects of this chronic illness, allowing our brains to go down the rabbit hole of whys and unanswered questions.
I had been fighting a double ear infection and bronchitis for a few weeks and finally last week felt better yet still this week my cough is still lingering to the point where my chest hurts and aches. Shortness of breath and sounding like a dying seal is not a pretty look people. We’ve all been there. You know that nagging cough that doesn’t even sound like you are human anymore? That’s the one we are dealing with. It’s ugly and exhausting all at once. It makes your body so weak and limits your ability to function and robs you of your quality of life for that day. Right down the drain it goes. How do you get out of it you ask? There is no magic spell we can cast upon ourselves. Acceptance I think is a huge factor because we always know that tomorrow is a different day and knowing there’s a chance it will run more smoothly.
You have to train your brain to allow yourself to feel crappy for a moment and then attempt to snap yourself out of it so you can attempt to function normally. Like me for example. I work full time. I have 2 young kids. I sing and write music and attempt to train my 6-month-old wild Teacup Yorkie. “Attempt” being the key word there. I am learning to listen to my body more and when I start slowing down and I’m unable to move at the speed of light, take that as a hint and stop everything. This goes back to setting limits for ourselves. It’s not an easy task to battle with but it’s necessary for our survival if you will. A few nights ago, for example I had worked a full day, it was a very busy work day. Got off work, went to the bank, went to grab a few things at the grocery store, got home, unpacked it and started to make dinner. I was literally hanging onto the counter while grilling the chicken in the pan. Practically laying in the skillet. I knew I was pushing too hard and needed to stop. But again, instead of leaving everything as is or making it a “get take out” sort of night, I kept flying around the house with my super hero cape on until it got stuck in the fan and strangled me. The next day I was paying for it tenfold. It was almost impossible to peel myself out of bed. My body ached. My head was killing. I was drained and lethargic and my body was screaming at me. It made everything ten times weaker and more drained.
It’s very difficult to keep ourselves protected as well. We can not shelter ourselves and live in a bubble. It almost brings you to a level of paranoia about germs and being around anyone who even looks like they are sick. “If I even look at them, I can catch it”; sort of mentality. We have to practice safe preventatives daily to avoid being infected by someone sick and snotty even looking at us. Don’t touch ANYTHING when using public bathrooms. Washing our hands so much that we have to carry lotion around with us to avoid our hands being brittle and dry. Carry wet ones around that can kill 99.99% of bacteria. Hand sanitizer helps. Going to bed early and getting enough sleep. Eating healthy. Holding your breath while the lady in line in front of you coughs. You also bring your sweater up to cover your mouth and nose as she coughs of course, without covering her mouth. Praying to the immune system Gods to trade your immune system for a healthy one. You know the basics. Don’t drink alcohol or smoke. Basic rules to stay healthy right? Yet there is a chance even with going above and beyond some microscopic little bugger gets into our system and then it’s game on. Fuel the MS and down goes this hot mess.
Back to snapping yourself out of this rotation of hell you allowed your brain to begin spiraling in. Yes you feel crappy. We know this. Yes we know your MS is flaring up causing your very existence to be questionable and your life feels like it’s hanging in the balance. How the heck do we snack out of this? We set limits. We have an “emergency evacuation plan” if you will. Almost like a fire drill. We create a plan based on what we need when we start to feel this way. My husband knows that everything regarding the kids gets switched to him when I go into “panic mode”. Let’s call this fire drill “Operation MS”. Your action plan could look something like this:
Operation MS
· Hand out tasks you normally do around the house to your spouse or kids. Kids love structure and feeling like they accomplished something grand. Give them a list of chores that they can do to help around the house.
· Have easy dinner plan- organic frozen dinner options work great or rotisserie chicken is easy and cheap!
· Have a “silence” mode enforced in your house so you can get straight home and go to sleep to rest and reboot yourself. This may feel super strange asking your entire house to stay quiet during days like this. I told my husband that I never want him to feel like a prisoner in his own house and he replied with well that’s an easy request. When I am a prisoner in my own body.
· Up your ginger and turmeric intake- ginger shots baby!
· Turn off your ringer on your cell phone- no notifications either
· Cozy up after a shower- always feels better to be refreshed.
· Light your favorite candle or burn incense to calm your mood
· Playing relaxing music or turn on your favorite tv show that you know you will end up dozing off to.
· CBD with low THC helps me tremendously to relax and put my body into a state of no stress and chill time. – I use edibles as I do not want to damage my lungs.
· Drink 3 times more water than you typically do
My husband and kids know the drill when I let them know Operation MS is commencing, they all follow the plan and assist me where needed. I know that just from circling in a few MS Support groups on social media that not every person fighting this disease is blessed to have support from their spouse or family. This truly breaks my heart because I could never imagine not being backed by my spouse or family. If this is the case and your support system is not as strong adjust your Operation MS list. Maybe have a place you can go to when you feel your body reverting towards that black hole. Have a back up plan of a place you can escape to. Have a set song list that you play that will bring you relaxation and comfort. Have someone you can call that will listen and let you vent to them. All of these things can aid in allowing ourselves to feel better even if only by 10%. We have to force ourselves not to get too close to this black hole. If we do we are headed straight towards:
· Depression
· Feeling sorry for ourselves
· Being in a negative headspace
· Making our bodies more tired because being negative takes more energy
· Self-loathing
· Self-Pity
· Overall it is extremely harmful to our bodies and health
So make your emergency evacuation plan or “Operation MS”, share it with friends and family and let them know. It’s the same protocol for people who are taking a weekend getaway. They are doing that to reboot from the stressors of life or from their children, or even from a hectic job. It’s a reboot period. We all need them from time to time. MS or not. It’s life. Make a plan for yourself and when you need to bring down the hammer on life and turn on the switch for your emergency evacuation plan.
- A Hot MS