I realize I haven't made a post in a while. I also realize that I do not have a lot of followers. But, followers or not, I need to connect once in a while. That is what I started this blog for and I will continue to open up about daily struggles and joys of living with multiple autoimmune diseases. I am a mother. I am a wife. I am an avid health advocate. I enjoy music. I enjoy learning and gaining as much knowledge as possible. I try to keep my mind as open as possible in an attempt to try to understand things from many different perspectives. I am sure on some level, we can relate. So, let's keep that going.
Should I defend my recent absence? I suppose I am not obligated to, but if I am asking for openness and honesty from others, I would expect it from myself. Honestly, life got too much to handle. I was hit with many of life's challenges all within a very short time frame. Somewhere along the way, I just broke down. My M.O. is to crawl in a hole and hide. That's exactly what I did.
I have been running on auto-pilot for sometime now. The body has a miraculous way of preventing the mind from going completely insane. I believe it got to a point where I didn't even realize it. I have been followed by doctors and specialists since I was 13 years old pretty consistently. About 9 years ago it went from being minor and routine to complete chaos. We have been chasing this pot of gold called "stability" all this time.
With every new symptom, every new diagnosis, every new disease, the explanation and prognosis always included, "We expect this to get better once your body has stabilized." The cycle perpetuated when stabilization was never reached before a new finding would pop up. So, I have had this feeling of not feeling well for many years with the hope and idea in my mind that with stability I might feel better: or as I thought about it, I might feel something like myself once stability is reached (knowing I would never feel "better"). Stability, such a simple word with so much meaning.
As the years passed more diagnoses rolled in and I waited patiently knowing with every new diagnosis it would take a while to adjust and attain stability. More recently, I was finally sent to an immunologist who seems to have packaged things up nicely in a box and begun to gain some control. Exactly what I have been searching for, hoping for, and praying for all these years.........it is, right? Of course it is. I want to know we have things under control. I want to not feel like a ticking time bomb, not knowing what is going to go wrong next. Life is full of the unexpected, but give a girl a break. Stability is still a necessity and a desire.
Here's where the confusion of emotions comes in. We believe I have reached stability. Every single appointment I have had with any of my specialists in the last 3 months was good. Every single lab test, all the symptoms, all the side effects, all the unknowns are all where they need to be for my doctors to be comfortable and happy. I now only need to see many of them every six months as opposed to every 6 weeks to three months. This is a great burden lifted off of my shoulders. This means I have to travel a little less which in turn saves me energy and money. I know that what I am doing on a daily basis is good and I can continue feeling confident I am not being counterproductive. Also, with stability, the threat of a new disease popping up is far less as well as any complications arising from the already diagnosed diseases. All good news. So, why is this hard to come to terms with?
I have the answer for you. I don't feel like myself. Not the "myself" I used to know or remember or that I have in my head. I still have about 5 "tough" days out of the week and about 2 "good" days. I label them "tough" and "good" as opposed to "bad" and "good" because no day is a bad day. If I wake up, it is a good day as it should be for anyone on this planet. Something good comes out of everyday. A tough day is when my symptoms are flared or my energy is flat lined. A good day is when I am motivated and encouraged to get out there and use this burst of energy I have been gifted for that day. In general though, the old me is gone.
Now, with any chronic illness or life change there is a mourning period. Many people go through this right after high school or right after college as they transition into adulthood. As a kid, we all think adulthood is the ultimate goal. You get to do whatever you want. You have control of the money, the food, the television, your bedtime, EVERYTHING. No more school. Everything will be in my terms now. But then we reach adulthood and realize the bills have to get paid, and we have to answer to our bosses, and we have to go to bed to be responsible and get up for work the next day. Then there's kids and families. The life we thought we wanted or thought we'd have looks very different than what we envisioned as a child. This is very much like that.
Apparently, I am still mourning the person I had planned to be. I am no longer that girl and have known for a very long time that life is not possible. I have come to love the life I have fallen into. My son is a miracle and a joy. My husband is AMAZING. My purpose in life is clear to me. I am on this earth to love. I have good friends, a wonderful home, two great dogs, transportation, a bed, and food on the table. It is all good. But in my mind, I am still the same person I have always been.
I suppose it's a bit like the washed up football star. Always chasing the glory days.
When I sit here and write this out, it seems so ridiculous. (I am glad I am doing it!) Unfortunately, it is true. I am realizing with the help of the support around me along with seeing all these words I just wrote, that I have to let go. I have so much to be thankful for. I have so much to be happy about. I have plenty to keep me occupied and distracted. Why is it so hard? It's life.
One thing that has certainly enabled this negative thinking I have fallen victim to recently is those around me. I will even start to inventory this on myself, now realizing how big of a role this plays in the mental health of anyone. There has been a breakdown in my support system over the past several months. Now, let me make it clear that it takes two to tango, so in no way shape or form am I blaming my problems on anyone else. I am merely pointing out a fact that many of us could benefit from trying to evolve when it comes to supporting those around us that we love. With that being said..... There is a constant push to "get back in the saddle".
I am constantly working on getting to know the "new me" (who shouldn't be new at all, but you know what I mean). I am constantly trying to accept the cards I have been dealt while trying to play them to the best of my ability. Chronic illness affects everyone around, not just the ill. Everyone involved wants things to get back to normal as soon as possible once the fear of this disease is in our faces. Add to that, the fact that everyone wants the ill to feel better and get back to life. The problem lies in the denial of the supporters. They may not even realize they are in denial. But, ignoring one's limitations, joking about sensitive issues, and just plain pushing too hard is detrimental to the sufferer. As we learn to accept things, we need those around us to do the same. I suppose I could write an entire novel on this soap box, but I will spare you that.
There is something to be said about the difference between motivating and supporting versus pushing someone too hard or being overbearing. Motivation involves gentle nudges. Words of encouragement not statements of untapped ability. I watched a movie called Soul Surfer the other day and it was just what I needed. In the movie Bethany is a surfer who is bitten by a shark and loses an arm. She was primed and ready to become a professional surfer at the young age of 13 when this unfortunate tragedy happened. She loved surfing. Of course her family and friends were devastated by the incident. When Bethany got home from the hospital she tried her best to adapt to her new body and life. She wanted to surf again and was determined. Of course, with one arm it posed a huge challenge. Her parents wanted to help as did her friends. Her best friend and father ended up pushing her too much. She broke. She lashed out at them. Her mother had a conversation with her father about accepting her. Letting her come into this on her own terms. Her mother explained she needed to come into this on her own. They merely needed to be there and listen because Bethany would guide them through it. When they backed off, things ended up harmonizing and falling into place just as her mother had suggested. The movie was based on true events. Although I am sure there were and still are many struggles for Bethany to overcome, those words her mother used are exactly what every person needs to hear when they are supporting someone through such a huge life change.
That's what it is, a life change, whether you actively saught it out or it happened to you. We all react differently. Nobody really likes change but it is an inevitable event in everyone's life. The lesson for today is to sit back and take cues from those around you. This doesn't just apply to chronic illness sufferers. It applies across the board. To be a good friend, a good companion, a good partner you need to be open. Realize that we are all different and all want different things. Acceptance is the key. We may not agree on everything. We may not like the same things. We may have been raised with different values. But nonetheless, we are in this together. Learning to be accepting and supportive rather than overbearing and pushy will get you so far in so many of your relationships. There are so many situations in life, especially the tough ones, that we don't know how to approach. We don't know what to say because sometimes words just can't do any good. That's when you stop talking and just be. Just be.
