Good Reads

Monday, November 26, 2012

What's it Like to be me?

Life in general can be tough, but especially when you have any form of a disability.  Disabilities of any kind can make life a challenge; and for me, I live with multiple issues/debilitating issues, and face multiple challenges.  I suffer with multiple physical disabilities that affect my mind and my body.

It's hard enough to live with one or the other of the disabilities. But to have both, has been a mental and emotional challenge beyond any challenge I've ever faced in my lifetime.  There have been days where I have thought, " How do I go on?"  "If I were to happen to live into, say, my seventies, how would I be able to do that?"  "How would I get through, day-to-day for the next thirty years, living like this?"  So, because I have no real good answer for that....most times, I try to put that thought out of my mind.  But every now and then, because I'm hungry for answers, I will ponder it.  I think about it and try to imagine the next thirty-plus years of my life, living with the conditions that I do, and I get very nervous.  Scared even.

Of course there are physical symptoms and issues related to my cyst, my shunt, my brain sagging, and the Chiari.  But what I have found, over the years, is that there are days that the mental affects of my brain cyst and other brain issues are possibly even harder to live with than the physical disabilities.

Unless you have been there and lived with anything remotely close, then it's really difficult to fully explain and describe, what it is I live with, so that you can get a full picture, and truly understand.  But I am going to do my best.  I would like to describe what a day in the life of Maria is like, with "brain symptoms," and mental inadequacies:

- Disoriented - When I wake up in the morning, I feel disoriented.  My head aches, I feel dizzy, disoriented and out of sorts.  I cannot think clearly, see clearly, and am very off balance.  What is going on is that my brain has been in the lying down position, so once I'm up, it begins to sag and I can actually, physically feel it dropping - slipping downward.  It takes about an hour before I start to feel more connected with reality.  Some days I start to feel quite a bit better, while other days, even waiting the hour or so doesn't help.  I will continue to feel disoriented and "not good," after I've waited my hour or more.  When this happens, I can pretty much count on it not being a good day throughout, all day long.

- My balance - My balance is so bad that I spend the greater part of the day fighting to stay upright.  I bounce into walls, door frames, counters, you name it.  If my balance is really bad that day, I have to pick and choose what is important to do - such as, picking things up off the floor.  If it's something that can wait until my boys get home, I will choose to do that because I don't want to risk falling over or bumping into things, etc.  Going up or down stairs will be a major ordeal and something I have grown to dread with a passion.

- Dropping things - I drop things, a lot.  If my day isn't going well, then I will usually dread even the slightest task; such as putting dishes away.  I find I drop things more on some days than others, but every day I drop multiple things.  I hate days that I am so clumsy because even showering is a big task, not only with my balance, but dropping shampoo bottles, my razor, and of course....the soap.  On bad days, I will spend half the time trying to pick up the items from the shower floor, so showering can take me longer.  I will have to lean on the shower wall to wash and rinse my hair and hold onto everything extra tight.

- Pain - Pain is something I have most every day of my life in one way or another.  Some days are worse than others.  I feel fortunate that with all that I live with, my pain level is not that horrific, however it "is" pain nonetheless. So for pain, when I have it, I will take some Motrin or Tylenol.  Nothing strong.  Nothing powerful.  Usually either one of those will give me some relief, but usually the over-the-counter pain meds don't take the pain completely away.  But it will at least make it bearable.

- My vision - This is another very annoying symptom for me.  I have developed very blurry vision -especially in my left eye, over the past few years.  Driving has become a task I dread because if I forget my glasses, I will have a very hard time seeing, and some days are worse than others with how well I see.  And with driving comes reading street signs.  That is also very difficult for me.  The world around me, in general, is blurry.  I have to fight to see street lights and what color they are. The TV will look blurry to me, and more.  It is one of the biggest problems I deal with.  I find myself closing one eye a lot, just to see straight.  Yes, my vision definitely bothers me - a lot!  I may look into laser eye surgery in the near future.

- Tired - Sleepy - I get sleepy easily and especially in the middle of the day.  Suddenly I will feel like I need a nap and I have to take one.  I used to never be a nap person, but for the past year and a half or so, I have needed a nap or two during the day for a while and when it hits - it hits.  I will have no control over my sleepiness.

There are other issues, but these are the most prominent and most annoying.  Sometimes I hope and pray they get better, and other times, I just work on trying to accept everything, and accept who I am today.

Whenever I feel I've accepted myself and my shortcomings, I will have another bad day that makes me realize I haven't accepted my new self, because I feel myself and notice myself getting really upset at, "me."  Then I have days that I feel ok about who I am today.  I am ok with my disability, for the most part....but there are those days when it really hits me hard that I am no longer the person I used to be, and I will mourn the loss.

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