Lately I've had the overwhelming feeling of "defeat" looming over me. Like a dark cloud that follows me and you can't seem to get rid of it even if the sun is out. Life's been challenging the last couple months and emotionally draining. My 9 year old daughter is suffering from severe anxiety, panic attacks that have lasted up to 4 hours long and seperation anxiety. She's had times like these in the past but never as bad as now. There were days when I couldn't so much as step foot outside the house to run to the garbage can and she'd panic. And when it hits it's always around a worry about Mom and my health. It completely breaks my heart, fills me full of Mom guilt and consumes me with pain. I love that she's sweet and caring and compassionate but I hate that she's scared, worried and feels the need to play nurse to Mom. But we shall get through this as a family and things have already improved since she started (despite her best efforts to refuse) going to therapy. I know with time this will give her the tools she needs to deal with things in a more positive way.
Add to that and a dear sweet friend of mine lost her courageous battle with cancer. She was my go to when it came to things like my daughter struggling. We had countless hours of conversations about Mom guilt and parenting while living with a disease etc... Caitlin was inspiring, a fighter like no other, full of wisdom and beauty and had the most amazing spirit. I miss her terribly but I'm so grateful for the friendship I had with her. She will never be forgotten and her spirit I know will and is with us and here to guide many of us as we continue on this journey of life without her physical presence.
There's been many other bumps in the road the last couple months as well, many things to worry about, sad news, heart ache and stress. And it's funny how all these big things can come at you and you keep fighting through it, standing strong and then the small thing is what can send you over the edge into a complete meltdown. This for me was tooth pain last week. I had a cavity filled, long story short I need a root canal done this week. The pain in my tooth was horific and after multiple attempts to fix it and avoid a root canal or pulling it I lost it. Tears streaming down my face, full of frustration and upset and just ready to throw in the towel on everything. My mind was in poor me state at full throttle. All I could think of is how I fight everyday to stay positive, exercise to slow progression of Parkinson's, smile through the pain of Dystonia and focus on sheer determination that I will not let PD or Dystonia win, that I am stronger than they are... only to have pain in a tooth and what should have been a simply cavity filled take a sledge hammer to all those mindsets I try to live by. Instead of my fight "Screw you Parkinsons" positive attitude I was now in a place of why me? Why can't anything just be simple? Why is everything a challenge? Why do I have to live with excruciating pain from Dystonia when I already have Parkinsons to contend with? Why is my poor sweet daughter suffering emotionally because of me? Why is life so unfair lately? What did I do to deserve all this?
I've said before that sometimes there's power in a good cry and a huge hissy fit. There are times in life they are essential. And yes in those moments I was so angry and frustrated I was momentarily giving up, admitting defeat but like always I got up, gave myself a kick in the ass and said that's enough. Time to move on, get on with it, keep on fighting. And then the next moment of weakness hit. I started the ball rolling on something I swore I would never do, that I'd never hit the point where I would give in to this, I'd never no matter how bad things got do it... I sent an email to my Movement Disorder Neurologist's PD nurse requesting Botox injections in my calves and forearms and possibly hands for Dystonia treatment. A treatment option he's been suggesting for about 2 years. And yes it can be very effective but it's injecting a toxin into your body and with that comes side effects. But, I admitted defeat to the beast of Dystonia. Admitted that the pain is getting too intense, that I hate that it's starting to take my ability to play the fiddle and guitar away because just holding the instruments is painful and that is something I love. Admitted that I hate the fact that I'm now using my cane almost daily even if it's just for 15-20 mins while I wait for meds to kick in. Admitted that for days like that I am going to have to take my beautiful friend Caitlin's advice of getting a wheelchair tag for my truck. Admitted that I can't do alot of things I could do even a year ago. I had to admit defeat and it sucked. And then the wise words of my friend entered my mind that she had encouraged me with so many times. To just accept needing help in certain areas, get the cane for the days you need it, just bling it out and find a way to make it fun. Be open to things that will make my life easier and so on. She always had a way of putting things in perspective and changing a negative into having at least some small positive spin. So it then hit me that admitting defeat isn't failure (or giving up) as long as the goal remains the same. It just means the plan to get there changed.
And my goal is still the same, to never give up, to show my children that you can conquer anything in life that comes your way if you remain focused and determined. To do everything in my power to live well with PD. To help others who are struggling. To be grateful for my blessings and live life to the fullest. So having a meltdown over a tooth, or giving in on getting Botox injections, or investigating the options of having Deep Brain Stimulation done are not me being defeated. It's simply a new plan on how to stay true to my goals in life. If the plan isn't working change the plan but never the goal. So with that in mind I shall dust myself off and get back to my fighting spirit. I will stay focused and accept life's new challenges as they come. I will remain positive and determined like I always have been and show my children that one should never give up and that once in a while admitting defeat is not that, it's a reality and a path to a new type of victory!