Multiple sclerosis doesn’t make life easy to manage
Multiple sclerosis has been a constant struggle for me from the start of my diagnosis. It’s been progressing faster than I ever thought it would, even faster than the neurologist had predicted it would. It’s the uncertainty of what may take place tomorrow as my body continues to wear out that is the hardest for me to deal with.
I know I will never get any better than I am today. As my body declines I just have to do my best to not focus on how hopeless and lonely it feels to not have any answers as to how bad it will get. I chose to stop any DMTs that I had been using in the past mainly because the symptoms of the drugs made me feel worse than MS itself. And no one truly has enough proof that it will stop the progression… only that if MAY slow it down. But even that is debatable from person to person.
I just decided that living my life as it is now is more important than sitting in the waiting room at the neurologists office and racking up bills that I really can’t afford. It definitely doesn’t make life easy to manage.
One of the hardest things I face is when those closest to me question my decisions about how I’m dealing daily with MS. Some have an attitude that I’m causing it all myself by not taking any meds and others even doubt how bad it truly is. What am I supposed to do with that? I’m in a forever progression than is rolling downhill without a stop sign or guardrails.
When my heart gets heavy I tend to turn on some soothing music, curl up in the bed and let the tears flow. I allow myself room to collapse for a period of time to calm my soul. It doesn’t necessarily make the pain or depression go away. You can’t order your mind not to think or feel a certain way. We tend to make things worse for ourselves by adding a negative self-judgment to what’s already a difficult situation. That’s our inner critic interfering with our peace of mind.
I think everyone needs to make room for the uncertainties in life. Don’t feel bad for feeling. If sadness is there, it’s there. If worry is there, it’s there. Yes, becoming aware of a painful emotion can be helpful… it can loosen its grip on you. But it doesn’t automatically make it subside.
Accept without judgment that you’re feeling sad, angry, worried, etc. but add to it self-compassion for the mental suffering that accompanies the chaos. In other words, be kind to yourself. Comfort yourself when you’re feeling bad instead of blaming yourself for feeling that way.
The more you open up to your feelings, the more you can do what matters most to you, and the more you can enjoy the full richness that life has to offer, together with “bad” and “good” emotions… come as they may.