On Hold.

When I was sick, I wasn’t feeling much of anything except fear and pain. My life had stopped moving. Sitting there staring at the wall  for hours on end made me feel like I was brain dead.

My thoughts were repetitive and ticking like the clock on the wall …

                                Sleep.     Eat.    Survive. 

With each passing day, I got a little bit better though I didn’t always feel that way.

                                       One Step Forward, Two Steps Back. 

Even now as I have been recovering for almost 10 months, I find myself working slowly in my mind. I pause and wait for the word to come to me. I know it’s there, but I have to let my brain find it. I stop mid-sentence and pray I remember what I was saying. Everyone says, “oh, that happens to everyone.”  I know they are trying to be kind. I also know that they have no idea how often it happens to me. They would be surprised.

I’m waiting…

  • for my neurons to find new paths and re-build.

I’m waiting…

  • for my body to completely heal.

I’m waiting…

  • for my life to start moving forward again.

We had plans.  I had plans….halted without warning and when I was sick, it wasn’t an issue. I just wanted to live. I just wanted to survive.

But now, my heart is starting to feel the loss of it all.  I’m mourning the life that was to be this year.  And it’s not like those dreams won’t come to fruition, but here I am still waiting for my body to be healthy again so I can move on.

I know I’ll get there soon, but right now, it’s hard to wait when everyone else is speeding past me. Their bodies could grow life. Mine could not. Their bodies could care for a child. Mine could not. Their hearts and souls could create another. Mine could only long for one.

It’s funny… I can almost hear the crackling elevator-type music playing in the back of my head and I listen closer for someone to pick up the phone.

I’m Still On Hold.

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May Day, Mayday!

May Day. The day my illness started. How fitting that this date’s name is used as a distress call. Back then, I didn’t know this was just the start of…

  • An illness that would strip me from the ability to speak, coordinate, walk up stairs,  process, and think.
  • An illness that would steal memories from me that I know now I will never get back.
  • An illness that has stolen months of my life and wreaked havoc on my body.
  • An illness that has left me feeling anxious and nervous about when I will use the wrong name, say a word that doesn’t make sense, forget something important, or send the same email twice.
  • An illness that forces me to use a calculator to do simple math and a dictionary when I forget what a word means or how to spell it.
  • An illness that has delayed my ability to start a family.
  • An illness that has put stress on relationships.
  • An illness that has changed how I see my body and life forever.

I didn’t know that it would also be…

  • An illness that would reveal two serious, but treatable medical conditions.
  • An illness that has shown me who I can rely on.
  • An illness that has given me a reminder of how fragile life is.
  • An illness that has revealed a new strength in me to survive.

I am a survivor of Viral Meningitis.  I am a survivor of a Car Wreck.

I am working every day to improve and take care of myself.

I am impatient and want to just be back to normal.

I realize this IS my normal now.

I hope my brain can rebuild its maps, memories, and skills that it has lost.

I am scared I won’t ever be the same.

I cry out May Day, Mayday.

 

Note: Any grammatical errors and missing words within this post are a result of my continuing battle with my illness. I am choosing to leave them even if I find them later on another read through after publishing. I revise and edit multiple times, but  sometimes I miss things still. I’d like to leave them as a way of accepting where I am in my recovery.

Tips for Helping Someone with an Undiagnosed Illness.

Having an undiagnosed illness is a terrible burden, but what makes it worse is having people around you that have no idea how to interact with you or help you. Here are some observations I’ve made along with some tips for those of you that have a loved one with this problem. For those of you still struggling and suffering from an undiagnosed medical issue, my heart goes out to you. I wrote this during my illness and have been tweaking it since then given my issues with cognition and word issues. (related to my illness)

What You Don’t Know About Having An Undiagnosed Illness:

The thing about having an undiagnosed illness is that most everyone thinks they know what you have and how to help. Almost every person you talk to picks out a few of the symptoms you’ve talked about, categorizes them into their own past experiences, and spits out a diagnosis. Usually when they really care, they even send links, articles, and detailed accounts and symptom lists to prove their point.

While their efforts come from a place of love and concern, this can start to feel rude, inconsiderate, and trite. The doctors keep testing, they keep poking and prodding. None of them can figure out what I have and yet people who have spent very little time getting to know my illness think they are experts, believe they knew my body better than I do, and apparently believe they have a gift allowing them to sense the inter-workings of the complex human body. More notably, my body. 

I’m not sure what makes people feel as though they have this power or knowledge, but one thing is very clear: More needs to be done to inform people on the dos and don’ts of social interaction with those suffering from an undiagnosed illness. So here are some suggestions.

Dos and Don’ts When Interacting with Someone with an Undiagnosed Illness

1. Listen, Really Listen. A lot of times when we are in a conversation our minds wander or plan what we are going to say next. We struggle to focus on the words that are actually being said. While all we want to do is bring comfort by thinking of the perfect thing to say, sometimes we focus too much on our own thoughts while someone is talking. In reality, those of us with undiagnosed illnesses just want to be heard, not fixed by your perfectly chosen words.

2. Stop giving advice. No really, just stop. I know you think you know what I have. I know you think you have the perfect diagnosis or the perfect doctor, diet, exercise routine, supplement, stretch, vitamin, or miracle drug. I’m going to break it to you: You don’t. Okay, I’m not that pessimistic…Maybe you do. Maybe there’s this tiny chance that you somehow know what’s wrong and you can help, but 99% of the time you don’t. So instead of spending your energy on that small 1% chance idea you have,  please instead listen to me and offer to help. (see step 3)

3. Pray for us, but also do something for us. Prayers, thoughts, and positive vibes are awesome. Most of us really do feel better knowing that people are thinking of us. What is amazing though is when you can do something for us. Bring over dinner, send a card, send a care package, come and do our dishes or laundry, buy a gift card, set up a massage, take us to a pedicure, go shopping for us, come and visit and spend some quality time with us. Please don’t just say, “Let me know if you need anything.” It simply isn’t enough. We don’t know what to ask for, we feel guilty enough with being a burden to everyone in our declined health,  and we also are consumed by our illness. Please make specific offers and kind gestures. They really are the best way you can help.

4. Stop scaring us. Please keep your fear to yourself. I didn’t think I had to say this, but I have found in the last few months that most people don’t understand sharing their fear about my illness does not help me. It does not make me feel loved, cared for, or heard. Rather, it makes me feel even more afraid. To be quite honest,  it freaks me out! Your fears are valid, so please don’t ignore them…but please don’t share them with us. We have enough to handle. Call a friend, a family member, or go see a therapist. Take care of your emotional needs because we can’t deal with them right now. We need beacons of hope, not alarms of our last days on earth.

4. Stop telling us it is all in our head.  We are anxious as it is before being told that we are making  our symptoms up or that it is psychosomatic. Especially when going through an array of crazy symptoms that are difficult to describe, telling us it is in our heads makes being sick all that more burdensome. We often have to explain to our doctors each and every visit what’s happening and defend ourselves when they accuse us of exaggerating or making it up. We often take tests and nothing shows up on them. It can start to make us doubt and question. Having to defend ourselves again when we talk to  someone we love is just exhausting.  As someone who has suffered from mental health issues for years now, I am aware of what it feels like to have a panic attack or a PTSD trigger related episode. This is not that. I promise, it isn’t.

5. Be Compassionate and Considerate, Always. When going through pain, weird symptoms, or testing, it can be incredibly taxing and emotionally draining. Talking to people who care and show empathy is one of the greatest sources of strength we can find. Even though major tests may come back as “normal” or “negative” it may not be a happy time for us. We are looking for answers and when we are hunting for them for a long time, it is daunting when no one seems to have them. Getting a normal result is great in that we don’t have to worry about a larger issue, but please remember that we then are left to wonder, “Now, what?” At some point, I was praying for a positive result just so I could find an answer. Please don’t assume that we are happy with our “normal” results. Instead, offer some compassion. Also, we sometimes are a little difficult to be around. We are irritable, upset, tired, in pain, and usually emotionally exhausted. Please be a bit more forgiving with us. This is a gift that we will be ever-grateful for!

So now that you have some tips, go out and use them! Be there for your loved one, remember that there is always hope, and keep being that person that can hold our hand and be there with us during this difficult journey!

Note: Any grammatical errors and missing words within this post are a result of my continuing battle with my illness. I am choosing to leave them even if I find them later on another read through after publishing. I revise and edit multiple times, but  sometimes I miss things still. I’d like to leave them as a way of accepting where I am in my recovery.

I’m Back.

It’s been over five months since I last wrote a post. It wasn’t intentional, I just couldn’t write.

My inability started about 3 months ago when I was sitting in orchestra rehearsal.  Half of the conductor’s face disappeared. I turned and looked to my friend realizing half of her face was gone as well. I thought I was going crazy, but then I looked at my music. The notes and lights swirled, zig zagged, and strobed. Everyone thought I was fine. Everyone thought it was just a migraine. Even I was like everyone…but it didn’t end there.

The ocular migraine stopped and the headache began. For one week, it was dull. I thought I was fine until I woke up  a week later with spine and neck pain . Then fever, chills, swelling, sweating, dizziness, nausea, fatigue, balance issues rash, flushing, joint pain, stiffness, and abdominal pain set it. The Doctor thought it was Mono, I was treated and sent home, but the headache, back, and spine pain continued. Nothing would save me from it and each day I would sit in my chair staring at the wall with my mind completely blank.

I’d like to say I was thinking about something, but I wasn’t. I was incapable of thinking. I felt like I was brain dead. My body was fighting something they couldn’t identify. It was putting up a good fight, too. I would crave food in large quantities, I was chugging fluids like you wouldn’t believe, I was falling asleep at the drop of a hat.

Everyone thought they knew what I had. They tested for flu, mono, strep, hepatitis, lyme, auto-immune diseases, and God knows what else. They did  6 blood tests in a matter of weeks, sent me for an abdominal ultra sound all while they kept poking and prodding . Nothing came back positive. The only thing they thought was that my liver was over-functioning by a huge margin.

My symptoms continued to morph and change. I was slurring words, having difficulty with coordination,  incapable of walking up the stairs without my husband tapping which leg to move. My brain would stop mid sentence and I was flipping words as well as forgetting definitions and spelling.

By my third doctor, I was told I could have had viral meningitis and could now be suffering from post concussion disorder given my multiple concussions and car accidents. He sent me home with medicine that helped me concentrate, focus, and get through my work day. It allowed me to finish out the school year, but each day I still would struggle once the medication wore off in the afternoon.

I couldn’t speak at times. The words were there, but they wouldn’t come out. When I could speak it took a lot of concentration and effort. It felt like I had weights in my mouth that needed to be lifted to form each sound.  Sometimes what I was absolutely nonsense syllables. I couldn’t think at times. I would forget how to use my phone and stare at it. My mind felt like the pinwheel spinning on a computer screen. Loading, Loading, Loading, for hours at a time. Sometimes I would never remember what it was I was trying to do.

It’s hard to put into words how strange it was. My mind and body were fighting something and there I was stuck waiting for it all to just go away. In the meantime I fell at work, I struggled to communicate with others, and had to go home when my fever would peak along with dizziness and confusion.

A month after starting the miracle medicine, I had an allergic reaction to it. I had to stop and then the symptoms of withdrawal began. Agita, Irritability, Anxiety, Depression. The only positive was that my brain fog started to lift and I began to feel emotions more intensely. It felt like someone turned on all of the lights in the room after sitting in the dark for months. Overwhelmed with emotions and information, I found it difficult to process things.

All of this led to a all sorts of testing as the neurologist dismissed my previous doctor’s diagnosis.

After an MRI, EEG, MRAs on both my head and neck, they determined there was nothing wrong with the structures of my brain or nervous system. I sought neuromuscular and healing types of massage therapy and over the last month I have again made enormous strides.

I can walk up stairs without tripping or falling. My nerve pain, headaches, joint pain, and swelling have mostly subsided. I can finally read and concentrate for longer than 20 minute stretches without being completely exhausted afterwards and I continue to feel more and more myself.

It was a grueling journey, terrifying most of the time and yet here I am, still kicking it. Though my brain still gets confused with words and my body sometimes still feels a bit weak and jittery, I am so glad to say something I never thought I’d be able to…

I’m back and I am so grateful to be almost rid of whatever this insane illness is.

 

Note: Any grammatical errors and missing words within this post are a result of my continuing battle with my illness. I am choosing to leave them even if I find them later on another read through after publishing. I revise and edit multiple times, but  sometimes I miss things still. I’d like to leave them as a way of accepting where I am in my recovery.

Hope in a Bag.

Yesterday, I put my plan into action. I went to the store and bought ice packs, bandaids, tissues, hand heater packs, light sticks, flashlights, wipes, gauze, gloves, and bags.

The air felt heavy and unbreathable. The lights, too bright.

The sounds of shoppers, bells, and carts were deafening.

They didn’t have what I wanted. I panicked and walked away. I felt my chest heave as it tried to get in any kind of air. My ears felt like they were about to pop. I kept walking, but finally returned to the aisle.

I stared at the supplies, interrogating them with my eyes as if they would tell me what to buy. I picked them one by one and carried them around for what seemed like ages. They sank marks into my skin and made my arm sore. They fell out of my hands again and again. I didn’t care. I had them now. I was in control.

I took them home and broke them open. I made neat little piles and  organized them perfectly into little sealed baggies and stuffed them to make kits to give away.

I say they are for other people, and they will be, but right now they are for me.

They are sitting there in the corner, perfect and ready… waiting to be given on March 25th. Little bags of healing. Tokens of a year of recovery. Hope in a bag.

 

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The Sound of Silence.

The furnace turns off, the dishwasher stops, and I am sitting in the sound of silence. It’s loud. I can hear my blood pumping and my veins constricting in my ears. No one speaks, no radio or music plays and yet my ears are screaming as if a drum is being played within inches of my head.

I can’t explain it, but I think I can hear my anxiety as I sit trying to cope with the stress of the week. The sound intensifies and the rumbling underneath the high-pitched buzz sounds like thunder a few miles away.

I’m stuck again, only this time I’m trapped in the sound inside of my head. It’s not painful, but certainly an annoyance especially since I know when it is there, everything is more difficult.

Sometimes I can’t tell it’s there in the background until I feel the stress and irritation rising in my bones. It’s then that it is too late to come back from it quickly. Instead, it takes hours.

You’d think I’d notice the sound level rising in my own mind, but I don’t.

Not this sound.

Perhaps I’m like a frog being boiled for dinner:

The temperature goes up and up and yet I don’t know until it’s too late…

I am cooked.

 

 

 

 

 

I Hate Wednesdays.

Everyone has a favorite day of the week. For most of us it falls on a day that we don’t have to work and can just relax a little. Fridays, Saturdays, Sundays. Mine has always been Saturday. The day after a night of relaxation and the day before I have to start my pre-Monday stress/anxiety/agita/madness.

I never really disliked a day of the week until I was at my previous job. I remember there was a faculty discussion about Wednesday afternoons being the most difficult time  for our students in regards to their behavior and how can we come up with strategies to make the situation better.  (Apparently we had the most write ups, violent actions, and students sent down to the office on Wednesday afternoons.)

I guess I had never noticed there was just one bad day per week. At the time, every day seemed pretty terrible.  I was trudging through the halls on a cart, teaching in 27 different rooms, and  was experiencing at least one student meltdown per day. But after that meeting, I started to recognize other situations and tragic events that happened on Wednesdays.

I started to make a list in my head. A catalog of all of the terrible mid-week madness. Whether it was students acting out, people passing away, phone calls informing me of various tragedies, or just a fight with a friend, I knew them all. This was before the accident.

As you might have guessed by now, my car accident was on a Wednesday. Of course! Let’s perpetuate things! Why not?!

The result unfortunately is that each Tuesday evening I start to worry. I tell myself it all will be okay and try to relax. I try to think positively, but I often am unsuccessful and instead sit with an undertone of malaise.

I know it is a  by-the book self-fulfilling prophecy. But even when I am successful in getting away from those thoughts, I still hate Wednesdays.

It’s strange really since I survived on a Wednesday.

It will forever be known as the day I didn’t die (at least in my mind.)

Maybe I can spin that.

 

Opening Up.

Yesterday I did something I didn’t plan on doing: I told my best friend about this blog.

The only person in my everyday life that knew about this before was my husband.

It’s strange how I was able to write these deep, dark, and revealing experiences to an audience of someones and yet when it comes to telling the people I care about the most, I get a frog in my throat.

My anxiety is rising, so it my guilt and embarrassment. I’m not really sure where that comes from, but I’m sure PTSD is the culprit.

I wasn’t trying to hide everything from people. I’m still not, but in some ways I was protecting myself. I was an 8 year-old putting my head under my favorite blanket and telling a story to my stuffed animals. I know that they will listen, I know they will stay. I know they won’t be scared. I also know that they don’t completely know me. That makes it easier somehow.

For those of you that are offended by me referring to you as stuffed animals, please know that I was the kind of kid that had hundreds and said goodnight to each one individually for fear that they would feel left out.

It’s not that they didn’t matter, it’s that they wouldn’t be scared by anything I said.

Talking about the accident is anxiety inducing. When I’m expecting to talk about it, it’s easier. It’s nice to share and it feels great to tell people the “Good News” of being a survivor of a crazy event.

Talking about it in detail with my family and close friends for whatever reason makes me scared, nervous, and guilty.

After the accident I was terrified of losing all of them. Each time they drove or traveled, I feared for their lives, I imagined them having something happen to them, I panicked that as I said goodbye, it would be the last time I’d see them. I still do this. It’s gotten better, but is still my every day.

This is not something I wanted them to feel. This is something I want to hide. I don’t want my fear to be theirs.

I think that’s why for so long I have kept this blog as a journal: Open to those that find it, closed to those who know me.

Now, I’m finally starting the next step to this healing process. I’m opening up. It’s a little scary, but I think it’s necessary and I’m so glad to have the support of those people I care about the most.

 

My Dearest Friend.

It was almost a month ago that my friend died. I haven’t written about her on here, but I think my recent increase of blogposts is largely due to the fact that I am simply unable to cope with both the accident and her passing.

She was a colleague of mine. The first person that truly made me feel welcomed and safe in that work environment. During my second year in that job, she was diagnosed with pancreatic cancer. She was gone for the whole year. I was overwhelmed with my job and she and I weren’t quite friends yet, but we were more than acquaintances. I wrote her an email. She didn’t write back. We all thought she would pass away that year. I was afraid of that and for once, I didn’t know how to respond despite my many experiences with death.

My third year, my work space was moved next door to her. She returned: proud, persistent, unwavering, and determined to teach and fight her battle with cancer. Every two weeks she flew across the country for 2 days of treatment. She’d fly back and return immediately to work. Her hair fell out, her skin was pale, but she was glowing a beautiful light of faith and determination.

She was my friend. She was someone I held so dear. Every day that I was in that building (which was 3 times a week) she and I would talk for such a long time after our work day. Sometimes 30 minutes, sometimes an hour. You never knew her, but if you did for just 10 minutes, your life would be changed. I had never met someone like her. She was giving, kind, courageous, yet fragile, fearful, and ever-faithful. She was Cindy.

My heart and soul spent so much time trying to find ways to make her life just a little bit easier. Little gifts, snacks, cards, notes, phrases, prayers. Whatever we could do. For many reasons, I left that job in June and started another soon after. I always felt guilty about leaving her. I ran into her in September. It was so good to see her. She and I caught up and left with promises to get together.

I sent her an email  in December. She never wrote back.

And now she never will.

I didn’t know she wasn’t doing well. I didn’t know she had beaten her cancer and then been diagnosed with another kind of the same illness. I didn’t know she was in hospice. No one told me. I just got a message on a Wednesday night telling me she was gone.

I still think of her in her room working, correcting papers, planning, and inspiring everyone around her. I’m not in that building anymore so it’s easier to think of her being there than imagine that she is not.

I heard some music today. It was one of the pieces that I put on a playlist for her to help her sleep. “Music for Cindy”

Tomorrow is her birthday. I don’t know what I’ll do, but I pray that every moment I walk this earth I can live with the same lightness, joy, gratitude, and spirit that she lived in.

Happy Birthday, My Dearest Friend. I miss you dearly. I pray you are well.