Too Much of a Good Thing

So as I wrote yesterday, I volunteered most of the day yesterday.  I was good to get out into the community.  Today we got up really early and went to my sister, Katie’s to baby-sit my niece.  My niece is my pride and joy.   I had made a structured schedule so that we did crafts, listened to music, ate lunch and snacks and went to the playground.
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In all, we walked three miles today. By the end I was highly symptomatic and came home and slept for an hour. By symptomatic – I mean that my body had weird sensations, my left side felt numb and tingling while my right didn’t.  I was exhausted. My body always feels so strange and these are common symptoms of FND.  It’s only 8:30 and I’m eyeing the clock – usually I like to stay up fairly late.

 

 

 

 

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Winner Winner Chicken Dinner

In college, I lived on Ramen, Coke and potatoes.  So when I graduated from college, and met the man of my dreams I had no idea how to cook anything besides potatoes.  One night he left me with some pasta and asked me to make sauce. We had just gotten together and I didn’t want to disappoint him.  I called my step-mother for help.

Well, over the years I’ve cooked more and more. I’m famous for my salmon dish and we will be serving it at our wedding in September.  But since, I’ve gotten sick it’s been really hard for me to cook. I don’t have the focus at all.  When I do cook, I have to remind myself every five minutes or so – you have food on the stove…you have food on the stove…you have food on the stove.

Well, yesterday I made white wine chicken for dinner.  I didn’t clearly follow the directions and threw everything in the bowl together.  It turned out a bit salty, but still edible.  Sometimes I think I’m as good as I used to be, so I get frustrated when I can’t do the things that I used to.

Some of the skills I still struggle with – focusing enough to find something small, sometimes following conversations when people say a lot, focusing in general, planning ahead (I do this for the wedding, but I had all these ideas before and am just going forward with them with a lot of help from Seiya), remembering a sequence of things or short term memory in general, doing things impulsively. And the hardest one for me of all is time. I can’t seem to process time.

I keep hoping these skills will come back to me, but people remind me that I’ve come a long way.  I just fear they never will come back.  Everyone reminds me – patience! patience!  I’ve never been a patient person.

 

The Eyes of Disbelief

Yesterday was a quiet day. I didn’t get to the corps (my Salvation church) to volunteer and I really need to because staying cooped up in this house every day isn’t doing me any justice. Though I do go walking with my fiancé. Two days we walked through a local park and found ourselves on a Frisbee golf course. Yesterday night, we went to our friend, Lynnette’s house and watched a cheesy Christmas movie. Lynette’s going to help me live stream my wedding shower.

Last night I had some problems with my eyes. First they felt glazed over and then they dropped. My family and fiancé didn’t believe me but there was a huge difference between them and how I usually am. The picture from last night looks like a mug shot but that was as wide as I could open my eyes.

 

 

 

 

Living with FND

My name is Debbie. I have a neurological disorder so I thought that I would write about it. My illness is called Functional Neurological Disorder. Some of my symptoms are daily migraines, twitching, tingling, body distortion (my arms or legs feel weak), depression, memory loss,  and anxiety.

Looking back over my life, I’ve had these problems longer than I realized. As a child, it felt like I was zoning out for a few minutes. I could hear people and interact but somehow everything seemed unreal.  I would especially feel unreal when I would travel. I was forgetful – always forgetting my homework and books for class even in college – I also would get stomach issues when I would get nervous. I chalked it up to anxiety and ADHD.

Then at the end of 2008, I was in a small car accident. I don’t know if this started my FND getting worse, it was age (though I was only 27) or stress from being in a difficult graduate school program.  I started feeling like I was going to pass out for no reason, I felt extremely anxious, I felt depressed though I had just met the love of my life and had every reason to be happy. I had poor memory and parts of my body felt foreign or the wrong size. As you can imagine, this was TERRIFYING.

It subsided some and then after I broke up with my boyfriend it came back.  This time it was even worse but I pushed through graduate school (though in a different program) Finally, when I reduced stress from the break up, my symptoms started to subside.

In fact, I went into almost complete remission for five years. I was able to be an instructor at a college level.  I LOVED my job.  I still had symptoms and I dreaded this illness would return with an illness but I pushed on.

Then January 1st 2015, I got a text that changed my life in ways I never had fathomed and caused my FND to spiral out of control.  My older sister, Rachel, had a brain tumor. I’d always looked up to Rachel so this affected me abundantly.  I couldn’t deal with the  stress of working, managing a relationship, and my sister being sick.  My body started reacting with rather bizarre symptoms. I went to my doctors.  I got shots daily – torodol just to go to work, but it wasn’t helping.  I seemd to get worse and worse.

My sister’s cancer went into remission.  Things seemed good and I almost though I was well enough to go back to work.  But then in August we went up to my sister’s.  Her cancer was back.  I started to have a decline.  In October, she had a second brain surgery. On that day, I noticed my head was getting more and more stuck  I couldn’t think clearly.  Things got worse and worse.  My body had very strange sensations. I felt out of control.

I wound up in the hospital for three or four days with tremors. Then I went a week later to Brigham and Women’s. I was diagnosed with Functional Neurological Disorder – which means my body sends the wrong signals. For example, when I’m tired, I sweat.

Then I sought treatment for FND at two other hospitals.  After the first hospital, my sister was put on hospice care. That made the FND even worse.  I went to another hospital.  When I left, I had to go directly to my sister’s funeral.  It was like some nightmare.

I’ve been out of the hospital two weeks, but I barely remember the last two months.  Big events have happened.  My younger sister had her bridal shower and her bachelorette party.  Though her bachelorette party was last weekend it feels like it was a dream or never happened.  I know it did.

Much of my days feel dream-like.  I almost feel like I should wake up and find my body restored.

Sadly, I will have this illness the rest of my life, but I have come to understand it better and better.  I’ve come to accept it.

How Do You Celebrate Diversity in the Classroom?

Tell me how you celebrate diversity in the classroom for a CHANCE to win a $10 TpT gift card.  Requirements:

1. You should respond to the prompt: How Do You Celebrate Diversity in the Classroom?
2. Your response should be at least 50 words – no more than 75.
3. Send me an email with your response, My email is debbievdavey@gmail.com
4. A winner will be notified by Sunday 12:00pm.EST. ONLY the winner will be notified.
5. All winners will be given a product from my store for entering.

Working With Chronic Illness

It’s 8:45pm.  My stomach hasn’t settled, but I have to teach at 9:00pm.  I take my prescription strength gas pill and pray it kicks in before I start class.  And this is how my days go – every day – sometimes several times a day.  Sometimes it kicks in and sometimes it doesn’t and I suffer for 40 minutes.  Some times it’s a miracle drugs.

A question came up today in a forum.  How do you work with chronic illness and it made me think of things I wish that my precious bosses had known.  I am sure many can relate.

  1. I am one of your hardest working and most dedicated employees – Sometimes it may seem I am running in last minute or need to take more breaks.  Sometimes I can’t sit through a meeting without having to get up.  But every day it takes me everything I have got to even get out of bed and get here.  While you were rushing out your door to go to Dunkin’ Donuts before work, I was fighting off symptoms of my illness.
  2. I don’t get up from the meeting because I’m bored or being rude – I know what you are saying is important and I want to hear it, but I am in a lot of pain.  Sitting through the meeting isn’t a possibility, but send me the notes.  I will read them and stay up to date on everything.
  3. I know calling out last minute is an inconvenience – Everyday is a fight to just get out the door and I tell myself that I can do it, but sometimes as I walk out the door I discover that I really can’t do it.  There’s just no way. When every step I am taking is agonizing, going to work and standing on my feet most of the day can’t be done.
  4. I feel worse than you know –  I’m not talking about the physical pain.  I am talking about how I feel every time that my health makes me disappoint you and my co-workers. I’m talking about the disappointment I feel when I can’t do something at work that I actually enjoy doing because I don’t feel well enough to come in.
  5. Leaving here is the hardest thing I will ever have to do – Leaving my job because I wasn’t well was one of the hardest things I ever had to do.  I loved my job. I was meant to do my job, but it was best for my employer, colleagues and students/clients that I leave. I went through a grieving period when I left, but it was best for everyone.

The To Do list for Chronically Ill

1. Listen to your body!
We get warning signs or we learn from experience what our body is okay with and what it’s not okay with.  We need to listen and respond accordingly.  This is really hard for me – especially with my IBS.  I see chocolate and I want to eat it. My body will freak out if I eat it. Heart burn, stomach pain,  50:50 chance of a flare up. But I can’t resist and eat it.  Instead, I should distract myself or  find an equally enjoyable snack I can eat.

2. Talk to yourself positively
I sometimes have a hard time understanding why S. loves someone who is sick.  I will never be able to bring in a sizeable income.  I won’t mother children.  Even going out to eat is a challenge.  Remembering we all have our shortcomings didn’t help.  It wasn’t like I was flawless personality-wise, but instead of harping on my weaknesses I decided to play up my strengths and become stronger where I am weak.

3. Remember we are all on our own journey
I have spent six months in physical therapy.  I just discovered what I have worked up to on my stationary bike,  S. can do though only a few weeks ago he was limping.  This makes me feel frustrated and weak,  but then I remember climbing the hill this weekend.  I didn’t have to stop once and I didn’t twitch all night.  In March walking up S.’s steep driveway where he lived before he moved in sent my body into twitching and pain.  I have come far and should feel proud. 

4. Listen to your doctor (unless you have reason not to)
Your doctor wants to help you feel better.  Some doctors are clueless or have burned out and lost compassion,  but most have not.  Follow your doctor’s orders. 

5. Focus on the now
Before I got really sick last February,  I taught teens and adults English in a classroom. I loved it! I tried to go back last summer. I was tired and just trying to get through each class.  The fun was no longer there. I had to mourn that part of my life and focus on the way my body was now.  What could i still do?  I also counted blessings I still have.

The Risk: Playing it Safe vs. Push Ourselves

When you have chronic illness you often are faced with the choice of playing it safe or pushing yourself.  There are negative consequences if you go in either direction.  If you push yourself to hard, you can exhaust yourself and maybe even make yourself temporarily sicker.  If you play it to safe, you miss out on fun things and your body may become weaker over time.

This past weekend S. and I went with his friends from graduate school to the Catskills.  On Saturday afternoon, a few of them were going to Hyde Park (FDR’s mansion).  I LOVE history.  S. decided that he couldn’t come because he wasn’t feeling well enough.  I decided to go anyway.  I was nervous in the car – what if i had an IBS flare up while I was out with his friends? what if I suddenly felt dizzy from a migraine and needed to sit down?  what if I needed to leave suddenly because I felt so sick?  I knew the more I worried, the more likely I would be to get sick so I enjoyed the scenery of upstate New York and the car ride with friends.

Then when we got to the mansion – the last tour of the day was booked, but we opted to walk around the grounds.  In some ways that was better.  I tend to feel less pain and dizziness when moving.  Then the guys decided they wanted to hike down to the river.  It was 1.5 miles round trip (half up hill and half downhill) They asked me if I wanted to do it. I love new experiences and I had never seen the Hudson so I wanted to.  As I took each step closer to the bottom of the hill, I couldn’t help but worry about coming back up the hill.  Each step down would be another step up.

When it came time to walk up, I didn’t want to seem weak (I was also surprised at how hearty I was feeling) so I pushed and pushed and pushed. I heard my heart racing in my ears, but felt good nonetheless and kept pushing. When I got to the top, I didn’t feel so well (nausea and face burning hot), but after about a half hour I was able to shake it off.

But the scenarios in my head are things that constantly have to play in the head of the chronically ill

And they don’t always end well.

A few months ago I decided to go back to work. I really missed my job.  I had a few flare ups after work where Seiya had to come and pick me up downtown.  Eventually I missed three days in a row and I knew my body couldn’t do it.  Nor was I really enjoying myself the way I had before because I was trying hard to get through every class.

But if we become too sedentary we lose muscle mass and become weaker.  We also begin to be able to do less and less than we were able to do before.

When the Patient becomes the Caregiver

Karma is a bitch.  When I first got sick,  I drained my family and S. of all their energy with my constant negativity and anxiety.  And just like one cannot fully understand what is like to be sick until they face it themselves, one cannot fully understand what is like to be the caregiver until they take care of someone.

S. was diagnosed with Lyme Disease.  He was put on antibiotics.  The first batch he has tried isn’t helping him.  His legs are in pain and his hands are swollen.  I try to help him as much as possible.  Being sick myself,  it’s not always easy to do more.  I also try to cheer him up and be a listening ear.  It can be exhausting.  But I love him and he has taken care of me so many times before and he’s the type that selfishly helps others so it’s my responsibility and honor to take care of him.  Here are some things we as patients should remember about those that take care of us.

1. Thanks them often – It’s a tiring job to help those who are sick no matter how much we love them.
2. Be positive – Sure, our bodies are failing us right now,  but there is always joy in our lives and things to be celebrated. Also too much negativity will drain the caregiver faster.
3. Be understanding – sometimes they won’t be patient and sometimes they will vent about having to take care of you. They are human.  They get tired.  Return to #1. Thank them.
4. Be as independent as possible without hurting yourself – you can do some things.  Do what you can.  Lighten the burden for them,  but also celebrate your independence.
5. Thank them – I know I said that already,  but you can’t thank them enough.
6. Practice empathy – Often as patients we beg for empathy. Empathize with those who take care of us. They have their own suffering.  Be a listening ear,  a hug, a card or a smile.