Monday, February 6, 2012

Joy in Prison

Until today, I had not left my house for four weeks. The psychology that goes into being bound to your bed and your bedroom is maddening. To be dependent when you are by nature driven... The term "cabin fever" hasn't applied to me since the beginning of this six and a half year long ordeal. I got used to being in my house.  But, aside from God's grace and the joy my husband's presence brings and the knowledge I have certain family and certain friends actively supporting me, my life for these last many weeks have been misery. Unless you are close friend/family and have read my Carepages, you are not aware of the severe neurological attacks I have been getting that have kept me bed bound. During these attacks:

*I cannot walk (i.e. looking down at my leg and willing it/telling it to move and it won't)
*I cannot lift my arms (feel like the force of gravity has increased)
*I have difficulties with swallowing (I'm an *SLP and I know the symptoms.)
*I have severe chest/rib pain
*I have muscle weakness/twitching/tingling/numbness in extremities
*I am confused about where I am, (Again I'm an *SLP.)
*I have difficult forming words/talking (*SLP.)
*I have difficulty concentrating and thinking (*SLP!!)
*I have blurred/double vision
*I am completely unable to regulate my body temp (shivering with layers on under several blankets or turning the bedroom fan on high even though it is 60 degrees in the house)
*I am so fatigued (beyond fatigued-forced to be unconscious) that even after a night's rest that I am UN-able to stay awake (George said I fell asleep eating with my face in my food one time), and the list goes on but items that are leading me to see a urogynecologist.(*SLP= Speech Language Pathologist-I worked with adults and children with swallowing and communication difficulties.)

I KNOW something is wrong. These attacks started in 2010, but did not last as long as this latest attack.  I saw a neurologist who specializes in MS on January 9th. And he referred me to Mayo Clinic. I've been denied twice because they do not have the resources and I've already had a lot of testing done, but the neurologist we saw did his internship & residency at Mayo and has made a personal referral as a last resort; we are waiting to hear back from that. If we do not get in... Well. I'm just gonna trust that God is taking care of that. Worrying is not going to change the outcome.

So, I have been trapped not only in my house, not only in my bed but also my body. It has been maddening. I have thought I would lose my mind at times. My anxiety, OCD and depression are all heightened because of the nature of my situation. Anyone would have these issues in my circumstances. One day when I was improved,  I called a good friend in a full-blown panic attack because I  had tried to leave my bedroom. I had been in my bedroom so long I was actually terrified to leave it even though I desperately wanted to. Thankfully she skills to know how to help me. And I made it to the living room.

Early this morning was my appointment with my headache specialist.  You would think I would be jumping for joy to leave the house. But, my anxiety was so bad I was tempted to call off the appointment.  This may have been my prison, but it is what I know, it is my world, and I know that my body does not function well with a lot of activity.

*If I take a shower, I am done for the day. No joke. Bed bound.
*If I try to work on gently increasing my stamina,  I am unable to move for 12-24 hours.
*If I walk from the bedroom to the living room, I must bring my walker so that I can get back.
*The one time I didn't bring my walker to the bathroom last week, I fell and had to wait until George got home from work because I was not strong enough to get the phone which was on the bed. For however long, I laid staring at the bottom of George's dresser, wondering how much time was passing and thinking among other things that I hate that dang dresser because it is oak.

There I said it. I hate his oak dresser. Its ugly.

But what does decor matter when you can't get your body to move?

With anxiety medication in my system, I made it to my appointment and back with my wheelchair; it was much less traumatizing than my last trip to get Botox in early January where I shook the whole appointment and George had to carry me up the stairs over his shoulder. I was so overstimlated, hypersensitive, and unable to move or communicate that he just left me with my winter coat & shoes on laying on the bed and went to work. I don't know how long it took for my body to respond to my cognitive commands.

Today, I was thrilled with how my appointment turned out; we are making positive changes in my prevention protocol. I feel the ball might be finally rolling in the right direction again. I got trigger point acupuncture and cold laser therapy for my Migraines. I got to spend extra time with George.

I was fine (relatively speaking) the hour drive home until George turned left onto our road, in which we immediately see our house and a scream that felt like it started in the pit of my stomach came out of my mouth like a roaring fire. It surprised  me as much as George. I completely lost it without knowing it was coming. One second I was talking about prescriptions. The next minute I was completely freaking out. I cried and begged him to take me anywhere but his work....I'd lay on the floor of his office...he said it would be too overstimulating for me I said I'd stay in the car in the parking garage...he said I needed to rest...Take me to Kentucky to my parents or to Iowa to his parents. He said he would but he couldn't- not now at least. He promised on his next day off he would drive me somewhere even if just around the block (I'm too weak by the time he gets home to even walk much less go down stairs to the car).

I screamed so loud he stopped halfway up the driveway. He didn't even open the garage door. If someone had been home in our neighborhood I'm sure they heard me.

He was bringing me my cell, to my prison, to nothing, to no interaction...back to where my chronic illnesses live: the Chronic Migraines, the constant daily head pain, the OCD, the anxiety, the panic attacks, the depression so bad I wish to have someone else's cancer so they can live a full life and I could die and get away from this misery.  All these live in my body, but he was bringing me back to the place I experience them day in and day out.

He said "I understand." But he couldn't. No one can. I begged him to not make me go in.

And then he said..."But Giselle needs you." Giselle, my little 10 pound four year old rescue cavalier, that has an anxiety disorder and clings to me. I got quiet and thought, "he is right. She needs me."

I cried when he opened the door to the car and when he assisted me up the stairs (I was stubborn and determined to get up myself though that was impossible.) He brought me to the couch and my body gave out.

And then I heard it: it what the running of the bulls must sound like in Pamplona, Spain. He had gone to the room where the dog's crate is and let them out. They were trailing my scent with full speed ahead.

Giselle made it first. Her tail wagged so hard that her whole body was wagging. She licked me and rolled on me and rubbed herself into me. She was jumping for joy.
 And then Zoe plowed through to get some love and some licks.
And then my Mr. Knightley with his absent ball&socket hip joints and arthritis got up on the couch, stepped over all Giselle and Zoe and let me know he was there in the way only Knightley can.

There is always joy in prison. You just have to search, find and be thankful.


  1. in the Bible, Paul wrote some of his best writing in prison. you seem to have the same God-given talent. i know you didn't want it, but you have it and you use it for the good of God's kingdom. you look for the positive when the world around you is dark. keep looking for that small flicker of light kelly...let it continue to guide you on your journey. God loves you very much and He cries with you in your pain. i continue to pray for you my sweet friend.
    love and gentle hugs,
    chris m

  2. Ah, yes, my dear, even the slightest bit of happiness can be found if we look hard enough when we're imprisioned for whatever reason. You have four constant sources of enjoyment-George, Knightley, Zoe & Giselle!I love you!

  3. I cried so hard when I read this.

    You go through so much. and you are right, something is wrong. I hope you can get in the Mayo Clinic...and that is an answer. That they can find somehow they can treat you. I am so amazed at how much you have accomplished recently feeling like you do. Project Migraine Hope, a judge for the Health Activist Awards, working to get signatures for the AHDA petition.
    You are an amazing person!!!!

    I'm thrilled your headache specialist is making some headway. that's awesome news.

    I understand the fear of leaving home after being there for so long. Even now when I can go out, I'm afraid...home is my safe place, if I have an attack or my hips give out, what will I do? at home I can handle it, if I'm out I completely freak out and it makes it so much worse. If Stuart is not near I panic.

    Last week when I went out by myself, it took more courage than anyone knows. Even Stuart...and it took courage for him too, he is protective. then the next day my body told me in no uncertain terms that it is still in control, I'm not. Now after 4 days of attacks and still feeling off...I don't know when or if I'll ever have the courage to go out alone again.

    I haven't felt the panic of going back to my prison, but sometimes when we are out I do tell Stuart I just don't want to go back yet. No matter how nice it is, it's still a prison. And it has been again for the past few it was for months last year. For 6 months I only left the house about 4 times other than doctor's appointments, and those were short trips sometimes just a drive to no where. Just to get me out, to make the most of the days I felt somewhat better.
    But the whole time I was out I'd be afraid...what if it happens here? When I'm not safe?

    But you are so right, my furry babies make my prison more bearable, more joyful. When we pull in our street Stuart always says, we'll have one happy dog in a minute. or if it's past her dinner time, he'll say, we'll have one upset puppy (yes still puppy even though she's 19!) when we get home.
    Of course, she's never really upset, still greets us with such enthusiasm. She doesn't greet us at the door like she used to...she's deaf now too, and nearly blind...but she bounds around the house like a puppy, and will soon discover we are there and get way too excited. The cat meets us at the door...ready for his loving before the dog notices we are home and chases him away for a while.
    Both are very attached to me. Sandy needs us, she has alzheimers, but since we are home so much it hasn't advanced like they thought it would. She has cancer, they said over a year and a half ago she would last only 3 months to a they can't feel the tumor.
    She needs me. And I'm here.
    Max..our very attached. He rarely leaves my side. they do give this prison a touch of joy.

    I think it also helps because Stuart can work at home. So home isn't just a prison, it's his work place.

    Oh, I'm sorry this is so long. It brought up much I haven't admitted to anyone by my therapist. I read this and thought...I do understand, perhaps on a smaller scale, but I do understand.

    love to you my friend.
    if you ever need me, know I'm here.
    really, I'm always here. :)
    my thoughts are often with you.

  4. What a sad post. I suffer with debilitating fatigue also, a shower is a killer for sure. I rarely go out of my house, I have made myself a hermit. I hope somehow you will feel better soon.

  5. Sending prayers and blessings....

  6. Hi Kelly....Thinking of you this day and wanted to send you some warm wishes. Was thinking this week....yikes! lol....about a quote regarding peace and suffering..... " there is always suffering before peace" In some ways I think we migrainers are the " lucky ones"....who can REALLY, TRUELY appreciate a healthy day, pain free a way that folks who know nothing else can ever really appreciate. In the same sense that someone who was once poor now has wealth...they are likely to recognize and appreciate the difference more than he who was simply wealthy all along....
    take care !!! Tanya