Smell the ocean.
Touch the sand.
Taste the salt from the air.
Watch the seagulls take flight.
Hear the crashing of the waves.
I am at peace.
I am home.
For approximately ten weeks, I have been in a vicious cycle of a health crisis, medical tests, needles, doctor appointments, pain, physical therapy, stress, uncertainty, and fear. My days have been a regimented schedule with minimal flexibility, time, or energy for anything else besides trying to get done what needs to be done and get my body to a better place. Having a chronic illness (Sjogren's syndrome) is tough in general, but adding the events of the past ten weeks have really changed how I have had to function day to day and even hour to hour. Part of the issue has been related to recovering from Guillain-Barre and blood clots in my lungs. Another part of the issue has been trying to manage the severe side effects of the required steroids which are being tried in an attempt to get my neurological symptoms under control. Priorities have changed. My days now consist of making sure the essentials are taken care of. Showering, preparing meals, getting to appointments, caring for Molly, medications, and physical therapy.
And honestly, the whole ordeal has not been fun. My ability to socialize, leave the house, or even enjoy my usual activities has diminished dramatically. Before yesterday, I can honestly say I had two fun, "nonessential" outings in ten weeks; I went to a play that Chuck was in and a birthday party for my aunt. Both were events that I felt like I absolutely could not miss.
This past week found me at the rheumatologist's office begging to cut back on the steroids. They have helped tremendously with my Sjogren's syndrome symptoms and my strength has improved quite a bit from the Guillain-Barre. However the issues that I am still having are unexplained upper body tremors and headaches. The kicker is this could be a neurological issue OR caused by the steroids themselves as my other neurological symptoms have improved. Nobody knows for sure.
I told the doctor how my body feels like I have been taken over by an alien because of the steroids and I didn't think that I could tolerate much more than the four IV infusions and the 40mg per day of prednisone I had in my system. I am just not the same person, physically or mentally because of the medication and at this point it is too confusing to figure out if the problem is more the illness or the treatment. As far as the rheumatologist was concerned, we could start weaning the steroids. However she then also told me that because of the concern with the tremors and head pain, the issue and decision was going to be in the hands of the neurologist whom I see this week, who may even decide to do more steroids.
The possibility that not only may I not be able to wean the oral steroids but may also require more IV steroids overwhelmed me.
I think there comes a point when you are dealing with health issues that you have to stop and think about more than the physical consequences of your illness. Now I know that I will have the final say as to what happens with my medications this week, but I was overwhelmed by more than that. It had more to do with the fact that I needed a break from it all; even if just for a day. I needed to have some fun. I needed to get away; no matter what.
See, when you are battling a medical crisis, you have to consider the quality of life that you are leading. And the toll that your illness is taking not only on you, but your partner and relationships as well. In the past ten weeks, Chuck and I have both been in constant stress and illness mode. A lot more than most newly engaged couples have to contend with. Yes, we are in love and yes, of course we are going to support each other during difficult times. But, we are still human. A person can only take so much. We needed quality fun time together that did not involve work, illness, commitments, or other people. I knew this would mean pushing myself physically further than I should, but again, I felt like I had lost so much of my (our) quality of life recently that it seemed like the right thing to do.
Yesterday was that day.
I love the New England coast and everything having to do with beaches, lighthouses, fishing boats, and such. Being on the shore is truly nurturing for my soul and it has been for some time. Chuck and I had made plans last weekend to try and get to a beach somewhere and despite our best plans, I was not in an adequate place health wise to manage that trip. I was beyond disappointed.
But after a week of heavy duty physical therapy, staying strict on my diet, and an amazing acupuncture session Friday, I woke up yesterday morning with the thought that maybe it was the day we could actually do something fun. Chuck asked me what I wanted to do and I said my only requirements were that it was outdoors, I got to do some walking in order to keep increasing my endurance, could bring Molly, and that I didn't have to cook. So I packed up my medications, especially the pain ones, a supply of water, and my pooch. Everything else was fly by the seat of our pants; although I strongly suspect that Chuck had somewhat of an idea of what direction he was driving in!
We ended up driving to the North Shore of Massachusetts and visiting the towns of Rockport and Gloucester. It was approximately a two hour drive each way. We didn't have much of a clue where anything was but that was half the fun of it. Exploring; like we used to. We ended up in downtown Rockport which is a beautiful little coastal town littered with unique little shops and a great place to go walking. Very dog friendly and very physically friendly for me as there were an overwhelming amount of places to sit and rest. At one point, we found an overlook where you could sit on the rocks and watch the small waves hit the rocks below. It touched all of my senses.
While Chuck was taking some photographs, Molly and I headed over to the edge of the overlook and found a relatively flat rock to sit on and look down at the ocean below. As I was sitting there on that rock by myself, I closed my eyes and literally, peace filled my body. The tears flowed. Because in those moments of smelling the ocean and hearing the waves, I felt like Christine again.
Not the sick Christine with her life being governed by the medical system and a body that has betrayed her, but the one who has a future and so many dreams to fulfill. The one who remembers what it is like to be able to leave the house for the day to do something enjoyable or walk around holding her fiance's hand like any other tourist. Or to be able to even think about a future beyond doctor visits and tests. The Christine that will get married. The one that will someday go to Ireland. The one that will publish a book.
And the rest of the day went along like that. We found a beach in Gloucester to explore and let Molly loose to have some fun. It was so enjoyable just to see her enjoy herself. She hasn't been able to get out for walks on a regular basis like she used to last year and let me tell you, she made up for it on the beach! There were plenty of other dogs to run around and play with. It was only her second time at the beach and she was excited. She ventured to where the ocean met the sand and bravely stepped into the cold water. She took a drink and her reaction from realizing that it was salt water and not the regular water like she drinks from her bowl was priceless! Never underestimate the power of laughter in healing.
It was truly a glorious and healing day.
So did I wake up during the night with more pain after our adventure? Yes. Have I spent most of today feeling like I was hit by a train? Absolutely. But do I feel emotionally and mentally stronger and more connected to my partner? No doubt. At this point, it was a small price to pay.
And best part of all this?
I didn't even have to cook.
|Best seafood! I actually had gluten AND dairy-free fish and chips! What a find!|
Photos: Courtesy of Chuck Myers