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