warning: this isnt my best, most positive post. this is me being real in my situation.
It has been made clear in the past few days that I have not been doing the above. I have not been true to myself; I havent been seeing my situation with my own eyes and feeling my true heart.
Ive been “seeing” and “feeling” words of encouragement and hope, mostly out of fear of wanting to accept or admit the reality of this situation.
The reality of this situation is: Im very sick.
I have a very severe case of Multiple Sclerosis.
I have multiple lesions. One specifically on one of the “most unluckiest places” of the brain.
Its affecting my speech, to the point where I have to sign papers allowing others to speak on my behalf for I am not able.
Its affecting my hands and fine motor skills, to the point where I cannot hold a baby.
Its affecting me cognitive and memory, to the point where I have a hard time remembering anything if I dont immediately type it on my list.
Its affecting my sensory items. Too much noise, too much light, too many people, too much anything, can affect me so much that my body shuts down.
Its affecting my walking, to the point where I will never be able to wear my beautiful (and many) stilettos or healed shoes ever again, let alone be able to walk without some type of device.
I didnt respond to steroids, the 4 doses I had. I hardly responded to plasma exchange. My options for medical relief are limiting by the day. (And for those wondering, I am/have started alternative options).
This happened, literally, overnight. And for 5 months, I have had no relief. Its hard to go from a girl who was at her mid-20’s prime, to this: a girl who can hardly get out of bed.
Each day its said “It will get better” and each day, I either get worse or remain the same. If I do have a good day, its followed by two bad.
The truth: Im really sick. Im really disappointed. Im really frustrated.
Im not mad though, for I know everything happens for a reason. I also havent lost hope. I just wish that this chapter of “reason” would come to a close.
Ive been semi-hiding this from my blog because of three reasons:
- Its easier to not admit it myself.
- Im stubborn and prideful and dont want to admit it to others that I’m actually having a hard as hell time.
- I do believe in the power of positive thinking and hope and cheerfulness in healing. But there comes a time for reality as well (hence this post).
Im admitting it now because of two reasons:
- to encourage further support. Its selfish to ask but Im running out of rope to hold on to. I have hope. And I’ll always have sparkle. I was born with it. (: But I would love some relief, some good news. Some news that shows that Im getting better or at least am not getting worse. Just a moment. Your support can help get me there.
- to help you to learn how to love me currently. Right now, the best way to love me is to send me a text, a message, an email, a card. This brings SUCH joy to my day. For those that live close by and want to come say hi, I will admit, visits stress me out (see over stimulation comment above). But if we can agree on a 1 hour visit with a starbucks involved, I think we can come to a strong agreement. (:
The hardest part of all this is watching others lives move on, while mine stays in a standstill. And I feel some friendships slipping away because of it.
But, as I said to someone the other day, thats why I was given a wheelie chair, so I can learn how to keep up. It’ll just take some time. Patience. Not my best virtue. But I will practice and eventually I’ll get there.
I’m not the only one suffering. We all have sufferings we go through. Which is what makes us all human. Which makes us all in this together.
So lets get real. You support me, I support you. Promise.
In closing, we hope. We hope that damn it tomorrow is a better day. That someone smart comes up with a cure for MS or a new drug that provides relief or just even answers. HOPE.
And with you’re help, I will get better. I will have better days. I will be able to go spend more than an hour with friends and I will be able to go shopping and I will be able to do all the things that I love. I’ll get their eventually, I just know it.
To illustrate that I’m not completely heartbroken or depressed, I thought I would finish this quite depressing post with a bit of auto-immune humor. (see below)
Thank you in advance for your support and love. As always, love, Eliz