I'm Still Chronically Ill

February 17: Beach Day #2

Since my health has been improving, and at a pace so fast I can hardly keep up, finding any sort of balance or understanding of what dreams may become reachable and which ones may remain untouchable has been confusing and overwhelming. 

There I go using the word again.

OVERWHELMED.

Every day. All of the time.

One of the things that came out of my session with Evelyn and the recognition that I need to rest, and do a lot more of it than 1. I want to, and 2. I realized, is that I have been trying very hard to prove to myself (and to others) that I am somehow NOT chronically ill.

I'm not sure exactly why I feel the need to be all better right away, and like I might be a disappointment to those who love me if I don't experience complete healing. Likely, it reflects the feeling many of us have with being a disappointment that we are sick. Now that I've begun to heal, I want to be completely independent and no longer need the financial, emotional and physical support I've demanded for so long.

But guess what folks? And guess what, Miss Emily?

I'm still chronically ill.

It just looks a lot different than it did for almost 18 years. Even just a few months ago, the illness was more prevalent in my every day life than it is now.

I think it's really important that I articulate that, while I am able to do so much more than I ever imagined I would be able to do, I am still not able to take care of myself completely, nor am I able to live independently.

Because I look so much better, can walk around, and am so much more active in life, the illness seems easier to 'hide' and much of the work that goes into what I need is unseen, not to mention that the illness itself has, and always will be, an invisible one. Now, most days, I really do look fine. I'm usually put together, with my hair done or up in a pony tail, my make-up on, and wearing a fun outfit.

Just because I can go to a minor league baseball game or out to dinner or take the puppies to agility class or drive a car doesn't mean that I am not still sick. This is probably more confusing to people than when I couldn't leave the house. I'm somewhere precariously between illness and wellness.

Even the fun activities that I engage in are ways for me to gain physical and mental strength and encourage improvements. It's nice to be able to have some fun with healing--like going to agility class with the puppies where I practice standing, short running bursts and concentration or going to a minor league baseball game where I walk around and get used to being exposed to a lot of loud noise and overstimulation. While for healthy people these activities are just part of every day life, for me each one of them challenges my body in new ways--whether it be eating out at a loud restaurant, standing up at a museum exhibit, being out in the heat at puppy class, driving for longer periods of time, practicing writing for longer periods of time, sitting upright with my feet down for an extended period of time while I catch up with a friend over coffee, or starting to read a book for the first time.

These are nice breaks from the monotony of appointments like PT, massage, acupuncture and counseling. I love all of the places I go for these services and the people I work with, but I also like having some other ways to go about healing. Sometimes doing these things is still hard work, and sometimes they result in pain, post-exertional malaise, or a mad ANS that makes sleeping even more difficult.

As I start to feel better, I'm just basically trying to reacquaint myself with a world that I was not a part of for 18 years, even if it's re-learning how to pump my own gas! 

In addition to the fun stuff, I am also trying to contribute in more ways to making things run in the household and being more independent. Most of the things I can do are quite small, but they make a difference in the demands that have fallen on Mom since I got sick. Over time these demands have ranged from me needing almost complete physical care to managing the house and all of my IDLs (laundry, cooking, shopping, etc.). I try to do little things like pick up the bathroom or put shoes away or pay my own bills or put some laundry away or help feed the dogs dinner or clear the dinner dishes.

I now also drive to all of my appointments and run some errands on my own, like going to the Verizon store to get help with my phone or picking out some clothes at Loft or stopping at CVS to pick up a prescription and some greeting cards. 

These small things are big independence leaps for me. 

I still have an incredible amount of restriction on what I can and cannot do, an incredibly regimented schedule that includes a LOT of sleep, a very strict diet, and one heck of a medication schedule that involves shots, pills, sprays, and liquid medications. 

Just maintaining my relationship with Kiernan takes more energy than I have sometimes. I now understand why it truly was impossible to have a romantic partner when I was sicker. I literally could not have found or mustered the energy needed to create a new relationship with someone.

Many people are asking me when I am going to start working. I got sick one month after college, so I have never had a career, job or been part of the 'working world'.  Others are asking me to start thinking about what I want to do for a career. Or if I want to go back to school.

I need to say this: going to work is not on the table right now.

My healing is my work. My life is my work. That remains unchanged.

Ryan and I had talked about the more activities I engage in, the more I can improve over time.

I need to come out and state strongly that as a family we do not feel that me trying to work serves me or us in any way. As a nuclear family--Mom, Dad and myself--we are all on the same page. As a couple, Kiernan and I are also on the same page. What matters most to me is that the four of us agree, even if to the outside world it doesn't make sense or seems confusing. 

If you would like me to blog more about this or ask me more about why going to work outside of the work of life is not a priority, please let me know.

This Dog Was SO Handsome:
Part Wheaten, Part Old English Sheepdog! LOVE!

I have more freedoms and more 'normal' experiences than I've ever had in the 18 years since I got sick. 

Right now, as a family, we are simply celebrating that I can enjoy so many of the things in life that I missed out on for 18 years. We are also enjoying that I have more independence.

We know that maintaining the improvements I've made over the past couple of years, continuing to engage in the therapies that encourage my healing, maintaining a long-term relationship with Kiernan, becoming more independent and simply enjoying some of what life has to offer remain my full-time job.

I'm still chronically ill and it's still my full-time job.

Blessings,

Emily

The New Joyous Adventures and Relationships of Feeling Better (and Coffee with Ted)

Look Who Popped In From the West Coast!

Over the past year and half, I've blogged very little about fun stuff or serious stuff. I'd like to mix up the posts a bit and throw fun posts in with the serious ones. 

I also think it's really fun to go back and look at what I've done over the past year and a half and see all of the adventures I've had. This week, I looked through the last 11 years of my blog and remember when leaving the house at all was a HUGE event. I would blog about a visit to see some puppies or a drive in the country with Mom and Asher.

Now, outings of some sort (even if it is just an appointment) are almost every day occurrences. In looking through my photos of what I've been doing, I can see how much things have changed over 1 1/2 years.

In the past outings were so very hard and, while I took joy in them, the joy I have now is far greater because I am not so consumed by physical pain and feeling sick. Learning to take joy and create joy has been something that I have struggled throughout illness.

Now that I'm feeling better, the adventures are bigger and different and better. Instead of all of my friends coming to visit me here so I can sit in the recliner or be in a quiet environment, I say: "Hey, I'll meet you for coffee!" or "Let's go out for drinks!" 

What is also so special about feeling better is being able to better engage with my friends when they are home to visit. Last week, I got to see Ted and for the first time in over 18 years, we spent time together, one on one, talking for 3 1/2 hours while sitting outside at a local coffee shop. 

Usually, when Ted is in town he comes over for a visit with his wife and children, and I catch up as much as I can. To be able to talk one on one, face-to-face and truly catch up on how he's really been doing for the past 18 years was incredible.

In some ways, I feel like I am renewing old friendships and they are getting even stronger. When Sarah was in town last time, we went out for drinks at a local restaurant, sat on the patio, and talked for 2 1/2 hours. On her previous visit, we went out for a long lunch. For 18 years, she's been coming to visit me, usually with Bob and/or Lana in tow and we've had very little time to spend together as girlfriends.

I'm so thankful for these friends who stuck by my for these 18 years, sometimes keeping their own pain and struggles from me in an effort not to add to my stress, who selflessly gave to me and waited for this day to arrive. 

Blessings,

Emily

Rest is Necessary; Rest is not the Enemy

All Photos from February 16, 2016--Our First Beach Day
 Lots of Fun With My New Camera

A little over a week ago, I found myself completely exhausted and not feeling well. 

I woke up, ate lunch, and went back to sleep on the sofa for the afternoon.

The past week has been incredibly difficult and emotional. Tears have streamed down my face every day, usually multiple times a day. 

I had NO idea that going from illness to wellness would be such a difficult process, so emotionally charged, so filled with remaining grief, new anger, resentment and frustration, and overwhelmingly difficult decisions.

As I readied myself to settle onto the sofa--taking off the back cushions, getting some pillows from the bedroom, gathering a couple of blankets, turning on some classical music, settling in and then asking Mom to help me by getting the heating pad because I couldn't get warm, and corralling the puppies to snuggle with me-- all I could think about was how needing to rest like this and needing to ask Mom to bring me stuff could only mean one thing: I must be really, really sick. I must be relapsing. I must be going backwards. 

This leads to an instinctive reaction to feel fear that I will go back to being sick the way I was before. That I will go back to feeling lousy every day. That I'm not really getting as much better as I thought I was.

When I have a setback, the anxiety that surrounds it is almost worse than the physical setback itself. This week hasn't been fun, and I've felt pretty lousy. The fatigue, the crappy sleep, the fogginess are all reminders of 'how it used to be'. It's just that they aren't nearly as extreme.

But in my head, needing to rest like this is super duper scary.

When I landed at counseling on Thursday, I had already spent over an hour crying to Mom, and spent an hour more crying to Evelyn. The tears haven't stopped.

I came away from my session with a lot of insight, and a much better understanding of why I feel the way I feel, but the biggest thing I need to recognize and change on a cognitive level is:

REST IS NECESSARY.

REST IS NOT THE ENEMY.

I can choose activities to remove in order to 'downsize' my life, which has gotten too big for what I can physically manage but on a deeper level I need to change my perception of rest.

My memories of rest are of time FORCED to do nothing but rest because my body could not do anything else. Rest was not a choice, it was almost more of a punishment.

And 'rest' is something that's very very difficult to do when you are sick and tired of it and when your body feels too sick to really go into a state of rest. "Rest" is more about passing the time as quietly as possible, sometimes suffering minute by minute, unable to become distracted by the severity of the forceful heartbeats, racing heart, throbbing pain, dizziness, nausea, fatigue, fogginess, ringing in the ears, chills, shakes, sweats and malaise.

Rest means being stuck on the sofa, too sick to get my own things that I need or stuck in bed while the rest of the world is enjoying the fresh spring air.

Rest means something is wrong. Very wrong.

Rest, over the course of my illness, did not mean a nice relaxing day reading a book and snuggling with he puppies, sitting outside and sipping a cup of tea, or whatever we might associate with rest, recuperation, and rejuvenation.

Rest is hard work.

A couple of months ago, I decided to stop napping in my bed and nap in the recliner in the den. In my sickest days,  I spent hours, days, weeks in that spot. After my gallbladder surgery, Mom found me in that recliner unconscious, having thrown up all over myself and needing to call 9-1-1.

Resting and the associations I have with it are traumatic. They are not serene.

It took me a while to re-frame that being in that recliner could be a safe space.

As I've started to feel better, and especially as I've worked to create a meaningful relationship with a significant other, I've given up a lot of rest time. I figured I didn't need to take a long bath every evening, watch some TV, and listen to a book. 

Those were things the *sick* Emily did, not the new, more well Emily.

Since my energy was better, I didn't think I needed to make time for rest anymore. I mean, if I'm not as tired, I should use my energy to do something. Why 'waste' time resting?

Most of us, sick or not, have a pretty difficult time making time for rest in this busy world.

But for me it comes with an extra layer of anxiety and stress. It's scary. It's the enemy.

In reality, it's absolutely necessary.

I can't keep up the pace I've been trying to maintain since my health has been improving. If I try, my body is going to come back screaming at me, bringing upon me the forced rest I hate so much: Afternoons on the sofa, crashed out, too sick to do anything else.

Thankfully, the crash is NOTHING like I used to know--I was truly able to rest that Saturday. I slept peacefully and without pain or forceful heartbeats.

This week has been hard and disappointing. But it's nothing like the crashes of the past.

In order to give my body what in needs in terms of rest, I'll have to make different choices. I'll have to give up some of the things I had been saying yes to in favor of time at home watching a movie, taking a long bath, listening to a book, or whatever it is that I find I need.

And every time I settle in to try to rest, I need to quiet the anxiety that so readily surfaces telling me that rest is the enemy and that rest is scary.

We all need rest. Some of us just need more than others.

Rest--true restful restorative rest--is necessary.

If you find I've become a little more quiet, a little less present than I was before, you just might find out that I've been making time for something necessary: REST.

Blessings,

Emily

How I Spent The 18th

Baltimore Inner Harbor

On June 18th, I was at the Inner Harbor in Baltimore, MD with Kiernan!

Baltimore Inner Harbor

I wasn't at home sick in bed, unable to leave the house. I didn't plan a ritual to shed grief. I didn't plant a tree to mark the day. I was out living life!

Baltimore Inner Harbor

Each of the past three years, I've been able to do something progressively more celebratory. Two years ago, it was purchasing new make-up. Last year it was a girls night out for margaritas. 

Baltimore Inner Harbor

This year, Kiernan and I took a trip down to Maryland to visit his best friend, his wife and their kids.

Pure Joy! Tommy in the Fountain.

This trip was kind of a big deal on so many levels.

Cooling off at the Inner Harbor

First of all, it involved travel. Traveling with a chronic illness is hard work. I wish I had taken a photo of all of the crap I need to pack to survive a trip--from medications to food to special pillows to my white noise machine.

Kiernan did all of the driving (although we did take my new car!). I slept almost the entire way there, and on the way home I did a lot of talking. :)

It's about a three hour drive to Tom and Jenny's house, so the trip was quite manageable for us, and it's exciting that such a trip is now doable for a weekend.

Travel also disrupts my routine, which is still quite regimented. It means missing a nap or sleeping in a strange bed or eating on a different schedule or eating different foods and, in general, pushing harder than I might at home.

Kiernan and Jenny

Travel tends to cause me anxiety. This time, I was traveling with Kiernan instead of my mom and I was traveling to see people we had never met. We were staying in their home, all of us sharing one bathroom and Kiernan and I sleeping in a bedroom near the 'busy rooms' of the house. 

Tom and Jenny worried that me staying in their house with the three boys might make me sicker, but after much discussion, Kiernan and I decided that even if I did pay a price after the trip, we wanted to be in the 'thick of the action' with the family. 

I am SO glad that is what we decided to do. We (and especially Kiernan) would have missed too many special moments.

Best Friends for 20 Years: Kiernan and Tom

It's no secret that I'm an anxious person. 

So, the fact that I stayed so calm about traveling to visit Tom and Jenny and share tight quarters felt like a HUGE victory. Remember, I've spent the past 18 years not being able to visit other people, not traveling, having folks visit me, and being able to maintain a lot of privacy in my own home.

Kiernan and I have only traveled together one time so far--to Wellsboro, PA for our 6 month anniversary. 

Still, I knew he could and would take care of me. The longer we are together, the more Kiernan knows what I need and how to take care of me. I love how he gently wakes me up in the morning with a kiss on the forehead, how he makes sure I have my Oral Rehydration Solution ready to go for the day, how he makes sure I get naps, and how he makes sure I have a meal ready to eat.

Billie the Sweetest Pit Bull EVER

Kiernan did ALL of the planning and organizing with Tom and Jenny ahead of time. I didn't have to do anything! He discussed my sleep schedule, my illness, my food restrictions, how I would deal with the noise of the house, etc. 

Tom and Jenny worked very hard to accommodate my needs in addition to the demands of three children under the age of five! I did my best to change my schedule as much as I could for them.

My Crazy Man: Riding Tommy's Scooter and Wearing His Spider-Man Helmet.

I'm used to being the 'planner' and it felt incredible to know that Kiernan could take care of everything I needed. 

The Littlest Guy: J.P.

Being at someone else's house, especially someone I've never met before AND just happens to be the very best friend of the man I love, meant I felt the need to be 'on' all weekend. That was pretty tiring!

Taking a Breather: Jenny, Tommy and Danny

We spent the 18th hanging out at the house for a bit after I got up and ate lunch. The kids and adults napped while I relaxed. Then we headed into the Inner Harbor. 

Usually, I'm in Baltimore to go to Hopkins! Not this time!

The Inner Harbor is absolutely gorgeous, and I hope we'll go back sometime and explore it more. I'd love to go to the aquarium and museums. 

It was pretty hot out and we were out for a while, so we did use the Rolls. We StRolled around, took in the beauty of the harbor, rode the carousel (so fun!), watched the kids play in the water fountain, and then got a short driving tour of Baltimore from Jenny.

Despite the heat and missing my nap, I managed just fine. We had take-out sushi for dinner. We hung out in the front yard talking and playing with the kids. I still went for a short walk.

Danny's Idea of a Smile :)
He Wanted to Wear the Shirt from Kiernan ALL Weekend: "This is What Cool Looks Like." Ha!

Throughout the weekend, I rested a lot and took some time away from everyone Saturday evening after having gone to the harbor and missing a nap. 

Kiernan got a lot of visiting time in with Tom, Jenny and the kids, including a brunch out on Father's Day morning while I slept.

Godfather and Godson

Kiernan is godfather to Tom and Jenny's oldest son, Tommy. 

Tommy

These two adore each other and it's an absolute joy to watch them together.

Love

Tommy was SO excited that Uncle "Ham", his godfather, was visiting.

K and Billie

The trip was a success. A big one.

Kiernan Missed Billie!

It feels like a personal victory for me to begin traveling again after all of these years; to have a partner I can trust to take care of me fully and completely; to overcome my anxieties about sharing closer quarters with others, especially those I don't know; and to manage so well energy-wise for a the weekend.

When I got home I was pooped, but I still went over to Dad's house that evening to celebrate Father's day by watching the NBA Finals together. Warriors lost. :(

I woke up on Monday able to go to my PT session AND puppy class that evening. I didn't really take a day to recuperate or rest at all!

Billie Stole my Heart

It feels like a victory in our relationship to be able to travel together; to be able to negotiate what I need and make it work; and to have a partner who is so accepting of my illness. 

Me and Billie
I SO Wanted to Dognap Her! :) 

I spent my 18th anniversary of getting sick in Baltimore with Kiernan, enjoying the Inner Harbor, meeting Tom, Jenny, Tommy, Danny, J.P. and Billie, eating delicious sushi for dinner and enjoy the gorgeous weather. I slept through the noise of three boys running around the house. I came home tired, but didn't crash out.

I faced my fears surrounding travel, sharing tight quarters, meeting people I don't know, traveling without my mom around, and managed just fine in a house with three active little boys.

Thank you to Tom, Jenny, Billie the Pit Bull and the boys for hosting us. I know it's a lot more work to have me as a guest than a healthy person. I appreciate all of the planning you and Kiernan did to make this visit happen. It's so important to me to be as much a part of Kiernan's life as possible, which includes getting to know those he loves most.

This June 18th was all about LIFE and LOVE. It was a victory.

Blessings, 

Emily

Monday Dog Blog: Big Girl

Tovah Rose Happily Napping

When Tovah Rose turned four, something big happened. 

She suddenly realized that she could jump up on the sofa. All. By. Herself.

Ahhhhh.....Is Someone Going to Give Me a Pedicure While I'm Here?

Before this spring, Tovah Rose would look at us pitifully until we lifted her up onto the sofa with us, whereas Gershwin has always been able to easily jump up on the sofa.

Hiding

I think she got so excited about bunnies and birds outside that she realized in her excitement that she could jump up all by herself.

Now, I find on one of the two sofas 'just because she can'. :)

She can spend HOURS just watching the world go by, but she can also just chillax. (Note the photo above in which she was so nestled into the sofa I could barely find her!)

On the Lookout

Now that both T and G like the back of the sofa so much, I'm not sure how these sofa cushions are going to hold up!

All I know, is that Tovah Rose is all grown up now that she can jump up on the sofa all by herself!

Blessings,

Emily