Guest Blogger: My battle with ME/CFS

Guest Blogger: My battle with ME/CFS

Hello Everyone!
I would like to introduce you to a beautiful, young, chronic illness warrior I recently meet on instagram. Her story is so inspiring, and she has been kind enough to share it with us today. If you would like to know more about Connie and her condition, please follow the links though out, or you can follow her on instagram. She post videos about her day, and what it’s like living with a chronic illness! Welcome Connie, and thank you!
Hi I’m Connie, 19, and I have battled Myalgic Encephalopathy/Chronic Fatigue Syndrome  (ME/CSF for short) for the last six years. There are many different names for these conditions, but I use ME/CSF 🙂
CFS is a persistent fatigue that affects everyday life, and doesn’t get better with sleep or rest. There is a laundry list of symptoms such as, constant headaches, short-term memory loss, muscle and joint pain, difficulty controlling body temperature and many others.  I was diagnosed with ME/CSF in February 2011 after suffering with a lot of symptoms that just didn’t make sense! 
ME is a whole other beast! NORD summarizes it as “An acquired complex disorder characterized by a variety of symptoms and physical findings potentially affecting multiple systems of the body.” As you can imagine, it’s not easy to reach a proper diagnosis. Especially in someone so young.

Living with a chronic illness is the hardest challenge I have ever faced. It’s a constant battle. Each waking moment I feel I’m at war with my body. My mind is full of unrealistic goals, ones I may never get to meet. One of the hardest parts about having a chronic illness is that it let me start with a normal life and in a matter of moments, the life I had hoped and dreamed I would always have was snatched away.

 

A lot of the things that brought me happiness now cause me sever pain and discomfort. For example, being active, keeping fit and being social was a big part of my life. Being with my friends and socializing was a great stress reliever. Being the captain of a football team was the perfect role for me. It was something I love to do. Now, it has become a footnote on a list of things that I just can’t do anymore. My social life, education and job opportunities have dissipated as well.

 

Everything I do requires careful planning and involves consequences. There is no “normal” anymore. It’s unbelievable hard at 19 years old to have to plan my entire day around how well my body is cooperating. After 6 years, I’m still in the process of accepting my illness, learning what I can and can’t do. Being a teenager makes me stubborn by nature. When I go out and don’t listen to my body, I pay the price the next day. Sometimes even that same night!

 

I struggle with accepting that this is now my life. When I ask people this question, they say, “Of course not! No one should have to accept it!”  but I have to. How do I accept this is now my life for the foreseeable future? Another difficulty is what others think and say about me. A lot of people struggle to understand or even believe things they cannot physically see. For instance, if I had a cast on my leg, people wouldn’t have to think twice about how they’d act towards me. That is why we so often label our selves as “invisible illness warriors.” I am not willing to let myself become my illness. 

 

Recently, I have become more open about my disability. I am trying to make others understand is a difficult task. This is why I’ve found it easier in the past to hide my pain and exhaustion because hiding how I feel is less complicated than trying to make others understand how I feel. I’m now ready to open myself up, to try to make others see what I really go through everyday.  was Please feel free to follow my Instagram where I post daily videos about my day-to-day battle @memyselfand_m.e 

 

Thanks again Connie! You truly are amazing to go through what you do at such a young age. If you would like to tell your story, please feel free to reach out to life with chiari on any social media platform!

Much love!

Christina

lifewithchiari.com

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Advocating and how you can help!

Advocating and how you can help!

Hello all!

A little disclaimer. I will be talking about some new medications I am trying. While they work for me, I am not a doctor. This should not in any way be considered medical advice. Please make sure to speak with your own doctor about any medications you may be taking or are interested in trying for your own treatment plan. 

What a whirl wind few weeks it has been around here! I started seeing a new pain management doctor, Dr. Upadhyay, with Keystone Pain and Rehabilitation here in Pennsylvania.   ( I will be adding him to our doctors list!) He was AMAZING! When you live with several conditions that are relatively unknown it can be extraordinarily hard to find a doctor that will listen and help you.  He started me on Doxepin and Zonisamide, and the changes have been incredible. I have been able to severely cut down on my narcotic usage, and haven’t had to use my wheel chair in weeks. While I always like to share what does and doesn’t work for me, I am not a doctor, and therefore can not give medical advise! 

If you have known me for more than 10 minutes, you know that I am a hard core advocate for invisible illnesses. I mainly focus on Chiari and Ehlers- Danlos, not they are not the only ones I work with. 🙂 There are a wealth of organizations out there that are working tirelessly on our behalf to make sure our voices are being heard! I will be listing their links at the end of this post. Now the fun part! What can you do to help advocate for your specific cause? Some are easier than others, but here are some basic tips.

Education

  • Start with what you know. If you live with a condition day in and day out, you are more intimately aware of how it affects a person’s daily life than most others.
  • How does it affect you?
  • What are some things you want people to know about your specific condition?
  • What is being done right now to help?

Information

  • Have information at hand to back up what you are saying. I carry business cards and “pass it on” cards from Chiari Gear. It’s a good idea to be able to have something at hand until you get used to speaking to strangers about something so personal! Even if its just hand written note cards.
  • Be prepared for questions. People are curious by nature. If you start talking about your condition, people are going to want to know more about it. Don’t be discouraged if they don’t listen, don’t take you seriously, or are just flat out rude. Remember step one! Education! You can’t teach people who don’t want to learn. Best to just move on I say!
  • Social media can be your best friend. Post E-cards, notes, photos, statistics, ect. Anything to get people talking. Follow other people with your same condition. Work as a team!

Hard Work

  • This one is usually the toughest for most. Not because they don’t want to put in the effort, but because it can be physically, emotionally and spiritually draining talking about this one aspect of your life day in and day out as well as living it! Remember what your doing it for!!
  • I talk to anyone and every one who will listen to me. I wear Chiari and EDS gear, have purple hair, talk about my scar, tell people why I have to use that handicap placard, explain why I have to use the motor buggy at the grocery when they stare at me because they think I am being lazy.
  • Along with my husbands help, we managed to get several bills passed though the PA Senate to recognize September as Chiari Awareness month.
  • I sold bracelets and gave cards out to strangers to help spread the story and raise money for awareness education
  • I council others with Chiari and EDS to help them better understand what they are going through.
  • Biggest of all, I started the blog!

It may seem overwhelming at first. I have been an advocate going on four years now, and I still get overwhelmed. You brain didn’t fall out in a day, so take your time! ( Chiari joke lol) Please take the time to check out these other wonderful organizations! Please tell them lifewithchiari.com sent you 🙂 If you have any questions, or your struggling to get started, you can reach out to me through here on the blog, or via the following:

lifewithchiari@yahoo.com

on instagram

on facebook

Chiari & Syringomyelia Foundation

Ehrick Garion’s Act

The Chiari Project

Conquer Chiari

Chiari Gear

The Ehlers-Danlos Society