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While I may have been quiet on posting, on the home front it has been anything but. The highlight of this week was an overnight visit to the hospital to do a sleep study. My lung function is presently sitting at 41%. I should be sitting around 80%.I have been waking constantly at night and the doctor’s feared it could be me struggling for breath. I did not feel this was the case as show no symptoms.

It wasn’t too much fun. I normally go to bed by nine. They finally hooked me up. Photo shows me with 22 wires connected all over body just before my amazing husband threw me into bed. They then put full oxygen mask over mouth and nose.
Within a short time my legs started cramping with shooting nerve pain. I get this regularly but was more severe than normal. I was also wide awake and felt like I could run a marathon.
I only lasted two hours with the mask on.
Steve got me up and into the wheelchair. I had totally stiff and my jaw had locked. Basically my nerves had over reacted and gone into overdrive. I was not anxious however people with mnd have heightened nervous responses and can laugh or cry without reason.
The scientist was baffled by my response. No other mnd patients had reacted this way. It is always good to be different right!
I went back to bed with no oxygen mask on and finally slept for a couple of hours!
Back up at 5.30 am. Went back to the ward.
After discussions with the scientist it is good news. I don’t need oxygen for sleeping. Yay!. I am doing well on my own.
The doctor’s really don’t like me. I question everything. I don’t fit in their box of patients and at times they don’t know what to do with me!
I will continue to defy the odds. Every day is a challenge. My jaw is still a bit rigid, slowly coming back and my nervous system took a beating, but I’m still going.
Don’t be like the norm, be you, challenge what you believe is right and continue being awesome every day!
Love you all xx

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