braveandrecklessblog

How do you spell that again?

As some of you may be aware, I have been struggling with some very frustrating and disruptive physical symptoms since January of this year.  I am one of the lucky ones.  I work in a world-class medical system and have had access to great care over the last nine months.  But even those fabulous doctors were baffled after sending me for three MRIs, 2 CAT Scans, an EMG (NOT a treat– take my word for it) and drawing at least 28 tubes of blood.  Words like “enigma” and “mystery” have been thrown around a lot the last nine months.

Good News:  I finally have a diagnosis.  Bad News:  I have a chronic condition with no known cure that I still misspell on a regular basis.  I am more grateful than I can say that I don’t have a brain tumor, ALS, MS or a host of other scary conditions that my doctors ruled out.  But learning that I need to make my health my number 1 priority and pace myself has been tough.  It is also tough to live with an invisible illness-  I don’t look “sick” so it is really hard for the people around me to understand that I am not being lazy or difficult when it takes me a long time to do something I used to be able to whip out.

A dear friend sent the link for this fabulous article that is spot on about what it is like to live with an invisible illness.  If you are struggling with an invisible illness or care about someone else who is struggling Christine Miserandino’s The Spoon Theory is a MUST read

Peace and light friends

Christine/Brave and Reckless

 

Posted in ProseTagged , , , , 27 Comments

27 thoughts on “How do you spell that again?”

  4. Thank you for sharing this! Trying to live a normal life with a Chronic Illness can be challenging and well frustrating! It is truly amazing what we can learn to deal with in life and the strength we all have, that is sometimes hidden. I have been battling Multiple Sclerosis for 16 years now and it has had its ups and downs, but I try to hold on to my positive attitude. I started my blog 2 months ago and it has been a great experience. I have been able to communicate with so many wonderful and amazing people that really understand what I go through. I have set a goal for myself that I will achieve because I am stubborn and determined. I am going to one post every day for at least one month! I hope if you choose to follow my blog, you will enjoy! I look forward to reading more of your posts! Take care!!

    Liked by 1 person

    Reply

    1. My youngest child had Postural Orthostatic Tachycardia Syndrome (POTS) so my immediate family is more empathetic than most about invisible illness but it is hard for others to get and of course I am way too tired on the weekends to keep up social ties.

      Like

      Reply

        1. It is a real challenge for me to ask for help or tell someone I just don’t have the energy to do something. I have a teenager with a chronic illness and although I was very patient and understanding, I didn’t really fully “get it” until I developed fibromyalgia

          Like

          Reply

  9. Hi Christine sending you love and blessings my friend. It is indeed a great walk of love and bravery, with an everyday dance to be “you” or whatever that needs to be when living with an invisible illness isn’t it. The biggest thing is the amazing empathy that we realise is within us as a result of these times in our life. xx I am two and a half years since the diagnosis of M.E./CFS, just over three years since I started to slow and the symptoms became apparent. I thought after a total life breakdown with losing everything the year before I knew and held dear to me, that nothing could test me any more and I was so wrong. How strangely empowering it becomes living with an invisible condition, because we have to become our all for ourselves, as you said prioritise your “self”. ❤ xx

    Like

    Reply

    1. Kelly- Thank you for the love and blessings. I finally decided that I needed to take a medical leave from my very high-demand job and am just starting to really engage in necessary self-care. It is clearly a journey of learning to listen to our bodies and start letting go of things that are not essential or do not feed our souls. I feel like I have only taken baby steps so far but I keep telling myself that this is a marathon, not a sprint.

      Liked by 1 person

      Reply

      1. That sounds like a very loving choice to me Christine, though I know it’s not easy. It absolutely is a marathon, every day a new day and with it the chance to be as you need to, to love yourself through it. ❤

        Like

        Reply

  10. I thank you for sharing your story with me. I have EDS and I’m constantly being thought as Slow and/ or Lazy , etc. But they don’t seem to understand that I am trying my hardest to get my work done and I can’t help it if I’m in chronic pain. They just won’t get it until they get it!

    Like

    Reply

Leave a comment