Skip to main content

Frustration

 Some people say just wake up in the morning and decide to have a good day. Sometimes this is true. Instead of moping and complaining about little things, you can choose to look at life differently, accept the imperfections and just “be happy”. I do think there are many things, though, that make it hard to force yourself to always be in a good mood.  Getting rest… sometimes it’s hard because life is busy but sleeping a proper amount is so important for your health and happiness. Our diets also impact how we feel. Healthy eating will give you more energy, less bloating and overall just make you feel better. But, the number one thing that affects my mood is pain. Every single day I try to push through it, I try to “live” like I would if the pain wasn’t there. When I do this, I end up taking 2-3 days off from doing anything because that one day I felt motivated, I did too much. The frustration I have is so intense it sometimes makes me angry and in a bad mood. I want to jog, I want to work, I want to clean, I want to play catch with my kids, I want to cook. In my head, I’m so motivated to do these things but when the time comes to do it, I just want to cry. 

The most frustrating thing is it shouldn’t be like this. I have had DBS surgery THREE times. Why doesn’t it work? Why won’t it help me? Every day I realize how much my pain is also affecting those around me. I am no fun to be around and I’m trying so hard to just change the way I look at life. This is just how it’s going to be and I need to learn to live with it. 

I have had dystonia for a large part of my life. I wasn’t diagnosed until I was 22 but I believe what I experienced before that was related. I found out shortly after being diagnosed that there is no cure, so I have to just try to treat the pain and symptoms as they come. I’ve tried every medication, Botox injections and DBS. I’ve had relief, but I still have dystonia.

It is my mission to share with everyone I know what dystonia is so more people are aware and more research can be done. This is why I host a walk every year, and why this year I made it a timed 5K run to hopefully attract more people. Every dollar raised goes towards research. And I hope someday a cure is found so no one else has to deal with this. 

The run/walk will be held at mine falls park in Nashua NH and there are many ways for you to help!

  1. Register to walk/run (timing & tshirt included if registered by 4/25)
  2. Make a donation (this is good for people who want to help but cannot attend)
  3. Become a sponsor (perfect for companies, your company name will be on the tshirt and/or banner, you will get admission to do the run and you’ll get a shirt)
  4. If you wish to help but cannot make any donations, please share with your friends. You never know who might want to come to a family fun event!


There will be many raffles and kids are welcome! Click the link below for more information. 


https://dystonia-foundation.org/product/nashua-walk-run/?fbclid=IwAR1igKEYDQ6qVlb_kpjUwzDQedC_05g36e23jHYbE4b0PnGoGn1E7QAxetA

Comments

Popular posts from this blog

update on Dystonia and Family

I have been doing as well as could be expected.  I am back in Florida so it's nice to be with Ryan.  Although I am still upset about the whole thing, I am trying hard to smile and not let it show.  The spasms have returned and have gotten worse since the DBS was removed.  When I suck on a piece of candy or ice, my throat tightens up.  It's very scary but Im hoping it won't get any worse.  My neck also twitches sometimes and my foot spasms have come back.  My hand is curled in but if I think about it, I can straighten my wrist (not my fingers).  The most upsetting part is that I was just looking at pictures of myself the day after DBS and I had a huge smile on my face because I had made it through and then a couple weeks later there was a picture of my hand open.  I had never been so excited as I was that day.  I had so much in my head that I wanted to do now that I could use my hand and most of it involved Hailey.  Hailey helped me ...

Be the best you that you can be

A few months ago I was feeling pretty lousy and every day I was noticing new symptoms. I was so exhausted I could barely drive and staying up to watch a show or play a game with Jim was impossible. My eyes started giving me problems and I was getting dizzy quite frequently. When I tried to read, all the words in a paragraph bunched up into one big blur. I was overweight but couldn't find the motivation to even walk to my mailbox to try to lose some weight. It was the worst I ever felt and it was causing me to be miserable and not be the mother and wife I needed or wanted to be. I had an appointment scheduled for a physical so I decided to talk to my doctor. She told me that fatigue can be caused from so many things and she would do some blood work but she suspected it was just from having a baby and getting muscle spasms from my dystonia. I knew it was more than that but figured I would just wait and see what the blood work showed. Not long after my appointment I started gettin...

Dystonia awareness

Some days its hard to find the words to explain what dystonia feels like. It's invisible to most people, yet it shapes every hour of my day quietly, persistently and often painfully. I don't share this because I want sympathy, I share it because awareness matters and too many people still don't know what dystonia is, let alone how much it can affect someones life. Dystonia affects my hands, feet, back and neck. My hands ache as though they've been gripping something for hours, even when they're resting. My neck strains as if theres a weight hanging from it and no amount of stretching helps. My feet cramp and curl making sonething as simple as standing still feel like a test of endurance. I've grown stronger in ways I never expected. Ive learned patience, determination and resilience. Ive learned to celebrate small victories, like waking up with a little less stiffness or being abke to open a jar of spaghetti sauce. Im sharing this because I want people to under...