I did happen to run across a new blog, and it has some pretty interesting info. about brain lesions, their affects, and tests conducted (just in case you're in the mood to read). The link is below:
Social Neuroscience Info Blog Link
Ok... back to my own pity party...
When I first felt a little sick, I started out with a couple million sneezes and within a few hours the symptoms were pretty much was resembling the flu virus. I had a bit of fever, but the main symptom was nausea. Let's just say that Phenergan was my best friend that first week.
One day, I laid in the bed all day with the entire room completely spinning, and when I closed my eyes or tried to talk around, the room would spin even more. That was awful. I would force myself to close my eyes, hour after hour, and think about anything soothing that could possibly help me fall asleep. My body and mind were both so exhausted, but the spinning in my head made sleeping virtually impossible. I would fall asleep for 20 minutes, wake up for an hour. Fall asleep for 20 minutes, wake up for an hour. All. Night. Long. for several days days.
Then Scott suggested I try Phenergan for the nausea, and under normal circumstances I would refuse this medicine (I think you know why), which explains why I had a whole prescription from an old doctor's visit still sitting in the refrigerator. The only thing I could remember was that is was supposed to be used for was nausea, and it would make me really sleepy. PERFECT! About 15 minutes later, I was so sleepy that when Scott was fighting me to wake up and take my medicine, and I was completely out of it. The relief was wonderful. For a little while, anyway.
Then, just when it seemed that the sneezes were going away at the end of that week, and I was clearing up, BAM... I got a fever. When I'm about to have some serious MS issues, I unconsciously tend to favor my left arm and hold my hand a weird way without even realizing it. Which is exactly what came next.
When I did notice that I was favoring my left arm, I knew that I was about to go downhill in the next day or so. Being exhausted from the week-long flu-like symptoms was hard, but I received a new sleep "stay awake" medicine on Thursday, so I figured it would give me the energy to help ward the symptoms off... wrong.
What I didn't realize is fever, even a 1 degree change, aggravates any existing brain lesions, even the ones that don't usually cause major trouble. In other words, the brain lesions are haywire for a while, until the fever is gone at least. And the funny thing about brain lesions is that they are completely unpredictable, and they cause the weirdest symptoms, many dealing with personality and cognitive functions.
See, I have the ability to see this from two angles of understanding: I lived 23 years just like you, and my main objective was to wake up, make it to work on time, wash the clothes, hang out with friends and family etc, just everyday ins and outs. Sure I got a cold or the flu once a year and whined for a week or so, but then I was back to normal. I understand "life" from this position, and I know how fast the train of life whizzes by. I have to admit that if I had never had this experience and one of my friends was going through this mess, I probably wouldn't have been patient enough to try to understand. I know this, because more often than not, I'm too impatient enough with myself to try to understand me and what is best for me.
The other angle or position that I understand is the one I'm sitting in right now. That old "Train of Life" is still whizzing by, but I'm no longer one of the passengers. But the reason I say the "Train" of Life, is because for the most part, trains always come back around sooner or later, giving everyone another opportunity to grab on and try to pull yourself up again. There may be a different train and the passengers may have changed, but that's all part of the big plan God has for us. And there is the inevitable, "Kick me when I'm down" that seems to linger everywhere. Eventually, if you keep pushing and pushing on, no matter what setbacks you have, you will eventually make it up on that train before it passes by.
(If I were to keep using the Train of Life analysis to let you know where I am right now, this is what it would be...And yes, I am completely making this up as I go. It's the only way I can explain it!):
Step One: Riding the train (normal life)
Step Two: Falling off the Train (first symptoms)
Step Three: The Train is invisible (diagnosis process)
Step Four: I can hear the Train but I can't see it (Finding peace)
Step Five: I see the train, but it's going WAY too fast to catch up to it (Regaining Strength mentally/physically)
Step Six: I catch up to the train, jump and leap up, but can't quite make it all the way up in the car before I fall back and have to start over. (Learning to Adapt with new limitations for YOU)
Step Seven: After months of persistent jumping, I make it inside the train car, but everything is confusing and unfamiliar. (Learning to make your limitations work with what society expects of you.)
Step Eight: Riding the Train, catching up with everything that is familiar from the past. (Blending into where you first began. Starting to drive more, a little less isolation, rebuilding relationships and finding the new you)
Step Nine: Misjudging balance and distance, and not only do you fall completely out of train, but you fall on a totally different side than you were on the first time. Nothing is familiar, and you don't know where to start over.
This is what I call the Sudden Crash, which is what can happen in a matter of hours, like from a slight fever. It's struggling to regain your strength and making a little bit of ground, only to have to start over from the beginning. It's literally like learning to do normal functions again, because your body just decided it doesn't want to cooperate. And there's no magic medicine or magic pill that will make it better, because no two patients are exactly the same, no two brains are the same, and the symptoms of brain lesions change day to day for each person and then multiply that over a lot of people, and you will have a million different symptoms that are completely unpredictable and mostly uncooperative.
It's just weird to me, and maybe a little more frustrating than anything. People want me to explain it to them, explain how I feel, why I've changed, what is going on, and I haven't even begun to understand it myself. I've read book after book not only about Multiple Sclerosis, but also about the processes of mentally dealing with any chronic diagnosis.
I know that the first two years are usually the most rocky for the emotional part, and couple that with a disease that scrambles your emotions randomly and you basically have a big ball of crazy sometimes. haha.. I don't think my husband would deny that. While I've been going through the acceptance/diagnosis process, I have found that Hindsight is indeed 20/20 and I don't like that. That means I usually end up hurting me AND others around me while I struggle to find the antidote for my own sanity, acceptance, and most of all, the loneliness of being different. That is overwhelming in itself, because it often feels like there is an expectation of me that I cannot fulfill. I hate to think that I'm letting those closest to me down, but I cannot control this disease any more than the doctor can.
And the biggest curse of all... it's invisible to you. There is nothing that I can do to let you into my skull to really feel the pressure and pain that is inside my neck and my head each day. I can't make you feel how it feels to be in a constant foggy cloud, or what it feels like to have someone speaking to you and no matter how many times they repeat it, their words just aren't making sense.
I just have to keep pushing on, praying every day, and asking God to give me the strength to keep trying to find relief and to give others patience as well. See, there is nothing I can do to rush the medicines, to find a solution, etc, and my only option is to wake up every day and try again. Try a new medicine to see if it will relieve the pressure in the back of my skull. Try to get out of the house more, and actually interact with other people. I'm doing the best that I can, and that's all I need to know. It's all I can know.
I miss my family and my friends, but I refuse to drive unless I feel completely comfortable with it that day. I don't leave the house much, so when I do leave the house for a day, it's sometimes overwhelming to all of my senses. Processing the sounds and lights and stimuli can be a little exhausting if you aren't used to it. I think one of my biggest issues is definitely what I said earlier, letting people down and disappointing them. It's easy for you to hop in the car for a two hour visit, but it's not easy for me to do that right now. I haven't driven to Montgomery in almost an entire month, and I can't tell you the last time I was in Prattville.
The hard part is that it always seems to feel like it's my fault, like I chose to not drive or like I'm choosing to be sick. Trust me, if I could make this go away and work 40 hours a week with no pain, I would. I didn't want to be in this situation. I didn't want to change my entire life for something so drastic. Everyone is always like, "We never see you" and "You should come over and visit sometime" and while I am indeed thankful for the invitation, there is so much guilt from that and there is a responsibility on me to make it better. It's like it's my responsibility to see them more often or just magically make the symptoms disappear that one day.
Over the course of the last year or so, I've learned one thing that is essential to my own well-being:
First and foremost, I have to take care of ME. I am the one who has to wake up in the morning and deal with the symptoms. I am the one who has to deal with the bad episodes. And when it comes down to the person who has to hold the weight of this, that person is ME.
I've realized that I can't please everyone, but also that I can't let that bother me all the time. I have a journey to travel, and over the course of that journey, I have faith that I will find new and improved ways to adapt and slowly mingle back into a little more normal life again. I don't think things will be this bad forever, and I truly feel that my health will improve as I learn how to adapt to my limitations. My ability to be flexible will improve, and things will look up. I just hate how lonely the journey is along the way though. Where there used to be close knit relationships, there is now a communication gap and thinned patience by others.
I've opened up a lot in past blog posts, and that's tough to do, exposing yourself to the world. When I get e-mails, comments, or messages about what I've been going through or how someone is praying for me, it gets a little easier to press the "publish" button to share my life. First and foremost, I'm never asking for people to feel sorry for me. I guess I'm asking for time... more time. Time to adjust and learn how to adapt to this. Time to figure out how to rebuild my new life. Time without feeling guilty. I think the mental guilt is the most crippling part of this for me, because people used to expect things from me, expect me to be something, to make something of my life, and to be something special.
But when I tell people what's going on, and you can see the pained expression come across their face, it's almost like there's an invisible banner that says, "That's too bad... she had such potential."
(This just crossed my mind, and it's so true)
Instead of accepting this disease and trying to learn how to adapt to my limitations, everyone just seems to be sitting around, going on with their lives, just waiting for the old Chelsea to come back. Waiting for the day when I'm back to normal. This is the most true example of all. And it's the one thing that will never happen. Everyone keeps saying, when you feel better we can do this. When you feel better, we can do that. Are some things going to get better? Yes... But as long as you are sitting back waiting for the old Chelsea to come back, you're just wasting your time and widening the gap.
(When I say "Everyone", I don't literally mean everyone around me. Though it may feel that way sometimes, I do have wonderful people that support me endlessly!)
It's just really hard, because I am forced to adapt to what has happened to me. I don't have a choice. But what do you do when everyone around you isn't interested in accepting what's going on? Acceptance is a blessing, but avoidance will kill your spirit. Trust me, I know.
On the other hand, God has given me special friends and family that seem to be there at just the right moment! For them, I am so very thankful.
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All in all, I am still Chelsea. My heart is still the same, and I still have the same desires, goals, etc. I'm learning every day to adapt, and I pray that when I find where I'm supposed to be, that God will put the right people there at the right time! So far, He always answers at the right moment in His time. Frustrating, yes. But to have a God that you KNOW will follow through in the end... that's a huge relief!
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