The more I think about what this picture says, the more it’s true. Everyone tells me that you’re so strong you’ll get through this, blah blah blah. What if I’m not that strong. This disease has broken me. And please I don’t want to hear you’ve got to find the positives… I do, I find the positives every day but I can still be broken. And that’s not something to be ashamed of. I’m 55 years old and I am unable to roll over in my bed on my own. I mean really, let that sink in. I’m like a newborn baby. So while I am strong, I’m not made of stone.
I do feel defeated. And again that doesn’t make me weak! I deal with some things that would break other people. So I get kind of upset when people act like I’m being depressing or I’m acting sad. Yes there are days when it happens. And if that bothers anyone, you know exactly what you can do.
Last night for the first time in 10 months I had to take a Xanax. I was so ashamed and disappointed in myself. And then I realized that sometimes we have to do what we have to and the medications are there for a reason. And thanks to a wonderful friend of mine, I don’t feel bad about it. When I started trying to pull my hair out I knew it was time. I could feel every lump in my bed. I had to rip my shirt off of me because I felt like I was being strangled. And you have no idea how hard it was. I cannot dress myself, yes read that again I cannot dress myself. So getting my shirt off was a literal fight to the death. Tracy – 1, T-shirt – 0!!
When I say I am bedridden, I mean that in every sense of the word. I cannot just get up and get into my wheelchair. I need a person and a Hoyer lift. I cannot scratch my foot if it itches. I cannot cross my legs, I can’t move even 5 inches one way or the other on my bed because I cannot move my body by myself. My legs can not hold my body at all if I were to try I would fall directly to the floor. When I start to slide down my bed I can’t pull myself up, my son has to help me with that. What I wouldn’t give to be able to transfer and get in my chair on my own. I would never be in this bed that was a possibility.
When people say, I have MS but it doesn’t have me… I’m sorry but bullshit. The way I feel is, I have MS, and it has me, but I will never give up or give in until my last breath.
I’ve been in a really weird place since my fight with my own body last night. I’m not losing hope, but it something that I’m going to have to think about deal with and move on from. I know it will happen again because it’s not the first time it’s happened. OK I’ll be completely honest, it happens every fucking night but usually cannabis takes care of it.
Please I don’t want the, I’m sorry Tracys or anything like that. I’m just trying to show that MS is not just some little disease. It’s not, just MS.
I really want to spit nails when I see people getting angry because someone tells them they don’t look sick. Trust me be very glad they say that. Because I look sick and it’s obvious that there is something wrong now. Back in the day when someone would tell me that I didn’t look sick, I would look at them and say, you’re right I kick ass because I’m an MS warrior!! So stop getting mad and let them know what a badass you are!
I’m just tired… October will be six years I’ve been trapped in this bed. I’m really trying to not let that happen, but I have become a realist and while I’m trying and working really hard to get out of this bed, it’s probably gonna take a little longer than that. And quite frankly, I truly believe I’m going a little mad. I am in prison. The prison, that is my own body and my bedrooms four walls.
And this month on August 19 is the 22nd anniversary of my diagnosis. Oh joy…
As always, have courage and be kind!