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.
1. Simplify your life.
Penelope you are AWESOME because you truly say things that most people ignore!!! I am so sorry for your rapid decline with this ugly disease 🙁 You really bounce back so quickly and give the best advice to others that really help, most of all ME!!! I know it is ok to do things but in my brain I say NO just ignore this and move on, but that never really works so it is very nice to hear that it’s ok to struggle and get back in bed and have a good cry…
I really wish I lived near you cause getting a hug and giving a hug can help someone so much!!! So here are my hugs to you Penelope. XOXOX 🙂
Aww, Tiffany you are great. I too wish we lived closer but know that no matter what happens I will always rise up even if it’s a struggle to do so. Sending you hugs as well. xoxo
Thank you for sharing this post with everyone once again you have basically hit the nail on the head and said something about life with MS that unfortunately many people don’t understand. I am also sure that there will be many people who will benefit from reading over the post as well.
Take care
Thank you for your kind words Clive. Sending hugs your way… xoxo
Great post Penelope
I have same here and consider the stopping DMT. My progression is marching on….trigeminal neuralgia returns.. really why would anyone think u would do this to yourself??
I would like to contribute but b now scams on my account…thank God for my huscband
I’m sure your husband has been a godsend. Other people can be cruel even without knowing it. xoxo
Great post. I though struggle with loneliness especially since my wife of 25 years walked out on me and wants a divorce. Without the support of someone close by for me it’s impossible to live with my progressing MS. I have no one no siblings nothing. I’m also not very strong mentally. Life is an existence for me. A lonely one at that. Not sure I can cope with it
There is always hope out there. With MS it is important to always find the silver lining in every dark cloud – even if you draw it in yourself. There communities out there with othered going thru what you are as well. Twill. Beezy. Those are my favorite. Reach out to your doctor as well. Let them know how you feel. There is also always help out there too
Lots of people indeed with lovely intentions