Tuesday, May 19, 2009

Not a cheerful entry

Warning***** This is long and not my usual "gee ain't like grand" blog entry. I have always really, really tried to take whatever life throws at me and keep going. Putting one foot in front of the other after I recover from the stumble of trying not to take a direct hit from the bomb that was dropped on me. I've tried to stay on the path of my hopes, my dreams and the path I felt the Lord wanted me to walk. Be the person I felt HE wanted me to be. I've always tried to be the type of person that was a GOOD friend. The type that you could feel comfortable knocking on my door in the middle of the night because you had a fight with your husband and needed someone to talk to. The type that you could confide in, knowing that whatever you said would go no further. The type that would BE there, through thick and thin. I've worked, often more than one job at a time in order to support myself, my daughter and for awhile, even one of my grandchildren. I covered my mom's co-payments for awhile so she could afford to go to the doctors. I've even rescued baby crows and hand fed them for Pete's sake. No, I'm not a Saint but I REALLY try to be a good person. I simply try to do the right thing, even when it's the hardest thing in the world to do. When I got my MS diagnosis I had already gone through a life altering event and survived it. I lost my hearing. No reason why. An easy explanation would have been the MS. That was quickly ruled out when it was determined that all the hearing nerves worked. If MS had been the cause the nerves wouldn't have been able to conduct the electrical impulses. What took my hearing? For some unknown reason all the hair cells in both cochlea's died. Virus? Infection? Medication reaction? Who knows why they died. They simply did. Since then I have been through FOUR surgeries in an attempt to "hear". I won't even go into the details of those experiences. Suffice it to say that nothing went smoothly even though I did everything I was supposed to do. Once again circumstances beyond my control had a devastating impact on my life. However, I kept going. I kept working at trying to "hear". I refused to give in to the pity party I wanted to have. I wanted to work, to be productive so I pushed myself. Often to the brink of my emotional and physical limits to be able to do so. I simply wasn't going to quit. Through all this I had the support of family, my wonderful husband to be (this man saw me through all that while we were simply dating) and a few close friends. I believe it was their love and support that made all the difference in me being able to keep my determination level where it needed to be to fight that particular battle (which is still on going. Everyday is a battle to understand and "hear"). Then came MS. As if being deaf wasn't enough of a challenge. Once I got over the shock of the diagnosis the hardest part was self injecting. As an RN I've probably given over a million injections over my 17 year career, but giving an injection to someone else is a whole lot different than giving one to yourself! I probably took me a year to be able to inject myself without being squeamish about it. Seriously. How pathetic is that. I did it though. Because I had to. Because the "rules of the game" now said I had to have an injection 3 times a week. Over time I came to the mind set that, "OK, I can live with this. It's no biggy. It's simply an inconvenience". Whooooaaa. I should never have had that thought. Apparently simply having that thought changes the "rules of the game". Of course, the changes in rules are made without your knowledge, so you don't know what they are. Suddenly, any physical or intense emotional stress caused exacerbation's. Of course, you know this had to be shown to me because I didn't know the rules had changed. So, I fell, and injured myself (and there was the physical stress in the equation). Suddenly I couldn't work and was still struggling with the hearing issue, (there's the emotional equation(s)). That's when everything changed. Yet, I kept on going. Almost like the Energizer bunny. One foot in front of the other BECAUSE THAT IS WHAT YOU DO. Giving up isn't and never was an option. If you have been following my blog since I started it last July, you know about all the challenges of the last year with MS. So, I won't rehash them. Suffice it to say I kept going. Kept fighting. Kept trying. Now, we're here. Today...and I'm tired. I'm tired of not being able to even watch TV without the closed captioning on. I'm tired of not being able to have a simple conversation with my husband and be able to pick up the nuances of his voice. I'm tired of not being able to talk on the phone for minutes, let alone hours with my close friends. Now, MS has turned me into exactly what I was afraid of becoming. Dependent. Even more so because of the hearing. Can't be in a chair and not be able to hear in your environment, too dangerous. So, now I have to have someone with me EVERYWHERE I go to be my ears. It's bad enough I can't go grocery shopping alone just because I don't have a wheelchair lift in the van, but even if I did I'd still have to have someone with me to hear for me. Prior to the chair it wasn't as big an issue as being mobile allows you to be more visually aware of your environment because you can move freely. Your actively engaged in your environment. Not to mention that cars backing up can see you walking behind them. They can't see you in the chair and I can't hear the engines. Hence, I have to have someone with me. I am trying really hard to keep going right now and not giving up. Just quitting. No, I'm not talking about doing myself in or anything stupid like that. I'm talking about saying, OK, I give. I can't do this. I'm too tied to fight as hard as I have been. I don't have the energy or the desire to do it anymore. I'm done. Finished. I just want to stay in my house and let the world pass by. No more fighting the dragons at the door. No more. NO MORE. I have reached the point where enough is enough and I don't know where to go from here. Is giving up giving in or is it really finally accepting everything? Is it realizing that in spending so much time and energy fighting (and losing) my battles, I have actually been preventing myself from enjoying life? I feel lost right now. Too much has happened too fast and I'm expected to simply "adjust". I've come to the realization that on an emotional basis this is all too much for me. The hearing, now the chair. So I've decided to do what I should have done when I lost my hearing. I'm going to start seeing a counselor. Someone who I can talk all this out with. I'm so angry about my hearing and I have to keep that in, I'm struggling to adjust to life in a chair and I'm angry. If I have an episode of crying and being angry then it's "Drama", so I'm going to find someone who I can cry, talk, yell, beat a pillow with and it will be OK. Then they will help me move forward. Because right now, I just don't have it in me to be strong. I've had enough. I've been beaten down and the other team won. For me that's the scariest thing I've ever had to accept. The hearing and MS challenges are NOT going to go away. If I'm going get through this, it's going to be with help. So, I'm going to seek it out.


JC said...

Oh Baby .. I wish I lived close to you. I'd be over in a minute .. to give you a hug.

I'm so very sorry that this has happened to you.

You write out your thoughts .. any time .. I'm here ..

You go to someone and they will help you.

It's not fair .. none of this is ..

I hope tomorrow is better for you.

Webster said...

Kimberly, just making that long post was an important step along the route to acceptance of the double whammy of deafness and MS that you're experiencing. Getting to the point that you want to talk to a counselor to help you address the issues of living with multiple chronic illnesses AND that grief that comes along with them was a long time coming, but here you are. I hope you find a counselor who works well with you, and that you find the experience a positive and life-affirming one. Good luck with that - and Be Happy.