December: Neuropsych Eval & Holidaze

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In my post from a few weeks ago, The Pain Game, I mentioned that I had regressed in a few ways and that my pain level in particular had been affected by some events that took place in December. I do realize that we are now almost halfway through April (how did that happen?), and I had intended to post a summary of events much, much sooner, but life with chronic illness does not always allow the luxury of planning ahead.

So, at last, here’s the story…

In mid-December I completed a full neuropsychological evaluation to measure my cognitive function. The ultimate goal of the evaluation was to have an additional form of hard evidence proving that I am and have been unable to work in any capacity since May of 2012. At this point I’ve lost track of how many times I’ve been denied disability benefits by both social security and my private disability insurance company, and this test is one of the things that my lawyer insists will help me win my case.

For those of you who aren’t familiar, a neurophsyc evaluation is a comprehensive oral and written exam used to test a “subject’s cognitive, motor, behavioral, linguistic, and executive functioning” (for those inclined to read more, check out this article via Medscape). There are various degrees of testing and the length of test time can range from anywhere between 2-3 hours to around 10. During the evaluation, the facilitator asks simple questions to measure things like short term memory, word recall, analytical skills, simple math skills, vocabulary, and even the patient’s emotional well being, such as whether or not the patient is depressed, anxious, etc. It’s usually preferred that the testing be completed all in one day, but there are certain patients who require multiple, shorter sessions, and this was the case for me. I had planned to come in for 3-4 hours for two consecutive days, but my body basically shut down after only 2 hours of testing on the first day. By the sheer grace of God, and after a day of rest in between, I was able to return to complete the remainder of the evaluation, with a little help from a fully reclined Lazy Boy, a microwaveable heating pack, an ice pack, and a mom who answered many basic questions about what I am able to do on a daily basis, etc.

I left the doctor’s office feeling drained, teary, and in an escalated state of pain, which was an effect of my mental over-exertion. Nonetheless, I felt accomplished for taking care of what I needed to and was hopeful that I would recover quickly before Christmas, which was only a few days away.

Fast forward to a few days after the evaluation…

I was feeling better and was slowly regaining my strength, but I was still extremely fatigued and in more pain than I had been for several months. And even though I was excited about the holiday season and having loved ones in town, the heightened activity level around the house was hard on me during a time when I really needed total stillness and quiet to recover from the pain and fatigue.

If you aren’t familiar with the type of pain that Lyme has caused for me, and for many others for that matter, you can refer to my post, The Pain Game, for more details. Also, for the readers who do not struggle with a chronic illness, I want to explain what I mean when I say that I was ‘extremely fatigued’. It’s not a normal fatigue that a nap or a few days of rest will fix. It’s a deep, aching, all-encompassing type of fatigue that cannot be helped no matter the amount of sleep or rest. For me, fatigue is a state of being, but when I become severely fatigued from over exertion, I become weepy, achey, and largely feel as if I’m going mad. Depression isn’t something that I have struggled much with during the course of my illness, but if I have my days of being down in the dumps, it’s most likely because I’m so tired that I can’t think straight. During these times of extreme fatigue, I effectively turn into a small child who cries dramatically, and sometimes uncontrollably, because they haven’t developed the ability to communicate, but rather, my ability to communicate has been engulfed by fatigue. Several months ago, I ran across this article about what the writer describes as, ‘crushing fatigue’. To this day I have not forgotten the honest and effective words she uses to portray what fatigue feels like for the chronically ill, and if you have a moment, I encourage you to read it.

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Needless to say, the holidays were considerably less enjoyable in this state. Due to my level of fatigue, sensory overload was at an all time high, causing every opening door, sneeze, conversation, or running dishwasher to irritate all of my senses. Despite all of my hopes, I was not in a great place, and on Christmas day I locked myself in my parents bedroom, where the noise from cooking and chatting was minimal, and cried uncontrollably for two hours. I still don’t fully understand why, I just remember sobbing to my mom, saying, “I am just SO tired”.

It’s been a few months now, but I still don’t feel as though I’ve recovered from December and the neuropsych eval. My level of pain has been dramatically effected, and I never saw a sharp decrease in my pain level the way I had hoped. And in case you’re wondering if I’ve won my disability case yet, the answer is, no. Sigh. But one day at a time.

“So don’t worry about tomorrow. Tomorrow will worry about itself. Each day has enough trouble of its own. (Matthew 6:34 NIRV)

XX, K

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3 thoughts on “December: Neuropsych Eval & Holidaze

  1. Kayla, I started crying reading this post. The fatigue I feel every single day is the most unbelievable exhaustion that most people can’t even try to fathom. I know I still push through school but at times it literally feels like I am just going to collapse and not be able to get back up. Despite meeting so many others with Lyme, I still feel alone sometimes and the way you wrote about extreme fatigue here reminds me that I am not. I feel for you! For me, the exhaustion is the absolute worst because it leaves no energy for me to fight through my other symptoms. I feel if I could just get the tiredness under control, I could manage better. I’m so sorry you are still struggling to get over the evaluation (that is my fear once I graduate… that I’ve been in such a heightened state that everything will come crashing down 10x harder and it will take MONTHS to recover). I hope you start to improve and recover from the eval, soon, and your pain starts to lift. My heart goes out to you ❤

    • I must have written this just for you, love. The fatigue is SO hard, I feel like I cycle between pain and fatigue, one causes the other and it’s a hard cycle to break. You will make it trough school and you will be totally fine, you won’t crash afterwards, and you’ll feel better when you can finally rest. I know it’s so scary to push yourself bc you know the fallout that could occur with doing too much, but you are so strong, and you’ll handle whatever comes the way you always have. I’m always here for you and appreciate you so much.

  2. I am sorry to hear this. It’s sad how are medical system, social systems are. I mean the whole sense of humanity and I lead this specifically of course to our medical system, etc, is based around helping people and helping watch other. It’s sad how much we have lost touch with this. You can get through this, take small steps and before you know it you will feel great again.

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