For a long time I thought that the pains that I felt were normal. They were my normal. Still are. I think in cases like mine, it takes us so long to realize that there is a real problem and for our doctor's to take it seriously, that getting a diagnosis is a long and gruling process. Which means, getting treatment is a far away dream.
As things have progressed for me regarding my symptoms, I am becoming more aware of the effect things are having on my body. I'm used to the little things, the smaller symtoms. But the big ones, the new ones, are scary and it is hard to accept that right now, this is how I have to live. I have to live with knowing that I may suddenly lose bladder control. At the age of 22 this isn't an easy thing for me to accept. I have to learn to manage when my arm goes weak and begins to shake and my fingers twitch. I've learned to cope when I get agonizing pains out of nowhere, caused by seemingly nothing, in a random body part. I'm having trouble accepting that my cognitive functions are slowly deteriorating. My mind is slower than ever, my short term memory is horrible, I lose my thought mid-sentence regularly, I forget words, sometimes I even forget how to swallow and it makes me feel like I'm going to start choking. These things have been big, scary, life-changing things.
As you all know, I had an MRI just over a week ago and I got my results back. Completely normal. So far. After going over symptoms and a lot of other tests and what not with my doctor, he informed me that he does believe that my syptoms could very well be caused by Multiple Sclerosis. I guess MS can be active and present but now show up on an MRI for years. The next step we're going to be taking is a referral to a neurologist. I'm not totally sure yet of what this will consist of but it will likely be a variety of nerve tests, reflex tests, optic tests, and lumbar puncture to check my cerebral fluid.
I was of course hoping for a firm answer; either you do or do not have MS, or you do have something that we can treat. But that is not the case. I've got another maybe. And it's hard to accept the maybe when it makes you feel like your life is in limbo. Although, hearing from my doctor that he does believe MS is likely causing my symptoms has been a bit of a wake up call. Knowing that this could be a life-long problem for me and if it is MS, that it will continue to progress and continue to get harder. I think I handled the news pretty well. I didn't cry or get mad.. I just continued on my day. But the questions and reality of it all is hitting me now and I'm not sure what's next for me.
Over the next little while, I'd like to go forward with a bit of a plan for my life. Right now, my life is basically on hold while we wait for an answer but it's looking like it might be a while until that answer arrives. I'm not sure physically what I can manage anymore as almost everything at this point causes a flare up in pain and spasms. I'm not sure if I can get back on a normal sleep schedule with the intensity of my fatigue and with insomnia it makes that even harder. As you can see, this is all causing me stress and anxiety which makes the pain worse. The vicious cycle of chronic pain.
I'd appreciate any words of encouragement and prayer and positivity that anyone has to offer. Often times, people aren't sure what to say to someone who is living with a chronic illness or chronic pain. Here is my best advice for those of you who aren't sure what to say: People who live with chronic pain usually struggle to hold it all together, we are normal people who deal with normal struggles like dating and laundry as well. It's okay to ask us how we are really doing, if you really want to know because you care. It means more to me to be able to honestly answer the "how are you doing?" question than it does to mindlessly answer "i'm fine" to the classic "how are you?". My illness, no matter how much I wish it wasn't, is a big and dominating factor of my life -- we need to be able to talk about it and not feel like we're asking for attention or looking for pity.
If you're looking for something nice or encouraging to say, try something like:
"I'm here for you."
"I'm praying for you."
"Do you want to talk about it?"
Or if you're a close friend and you want us to open up,
"How has your illness been effecting you lately?"
"How do you feel emotionally?"
"How do you feel emotionally?"
"Is there anything I can do to help?"
Often times, we're not looking for someone to do our chores or hold our hand at appointments. We're looking for people that we can openly talk about our lives with, just like anyone else, it's just that our lives look a little different than your lives. We experience different types of struggles. But that doesn't mean we should have to hold it all in and not talk about it.
I hope that all of you out there that are dealing with struggles right now are feeling loved and cherished tonight. Thanks for listening. ♥
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