Multiple Sclerosis · Primary Progressive MS · Ramblings · Silly

MS Awareness Month day 30

The month is winding down and as we all know it’s been a crazy one. With Covid-19 floating around we all have to be a little extra careful thanks to our wonderful autoimmune disorder. Especially those of you on a DMD, please take extra precautions. My heart, hope, and love is with you all!

And with everything going on, I think we need a little humor from time to time.

Have courage and be kind.

Multiple Sclerosis · Primary Progressive MS · Quotes · Ramblings · Strength

MS Awareness Month day 29

I know that living in the past or thinking about the past is something that we should not resign ourselves to do, but I really do miss who I was before. I was someone who loved working. Grocery shopping, in my book, was one of the best things to do. I know, I’ve never said I wasn’t a little strange. But, laundry is what I really miss doing. And no, I’m totally serious about this. I think it’s all about the fresh smells, the warm clothes right out of the dryer, and even the act of folding things was fun for me. The weird thing is before I never thought about any of these things. I never realized why I did not mind doing these things. So I guess MS has taught me to look at things in a different light, a different perspective. Out of all these things I miss, driving is definitely the one that kicked me down the hardest. Driving was an escape, freedom, something I loved doing. When I lost that privilege, I was broken for quite some time. I could say that I will never drive again because at this point it’s probably true. Instead though, I can keep wishing and hoping that one day I may drive again. Yes, again I’m pretty sure I’ll never drive again, but it’s always so lovely to dream. 🖤

So as I wrote the above I kept thinking to myself, what I really miss is being able to do ‘anything’. We’ve been trying daily for a shower and it still has not worked. I did have a really good bed bath though, so I do get clean. 😇 We are starting slowly with my husband rolling me over on my side for 20 minutes to a half hour. It really fucking hurts, but each time it seems to be getting a little easier so maybe one day it won’t hurt at all. When I talk about what we’re doing my mind starts taking me to that bad place inside that discourages me. The feeling that it’s never gonna happen no matter how slowly we go. I’m thankful that I’m feeling it and acknowledging it straight away, but it’s still scary for me. You see, in my mind, when I see myself I’m not trapped in this bed. I see myself rolling over and sitting up and walking. It’s almost like a dream, but that’s what I see in my mind, my heart. I’m going to keep dreaming and maybe one day it won’t just be a dream.

Have courage and be kind.

Craziness · Multiple Sclerosis · Primary Progressive MS · Ramblings

Being a shut in is nothing new for many of us…

With everybody freaking out about being quarantined to their homes and not being able to go out to dinner, go shopping, etc.… This is nothing new for some of us. I’m not sure how to feel about it. It’s actually quite depressing. So for everyone whose lives are being up-ended over this, please get over yourselves. For some of us it’s life as usual.

Buuuuut… I get it, it’s hard. Really I’m sorry that by doing this you’re protecting the elderly and those people with chronic illness and autoimmune disorders. I completely understand that it’s affecting your life. And I’m sorry that people like me have to take extra precautions.  I mean seriously, bless your little hearts. But, again, get over your damn selves and just deal with it. 😏

Have courage and be kind.