Would I ever know the day when this illness would raise its head so high that it would push me down so hard that my body would give in and I would just crumble? Did I even think it would ever happen? I dont think I was ever prepared for what lay ahead. I was … Continue reading My EDS Journey- The very first answer. Pt 2
Every Sunday I like to take some time to look after my skin.Its one of the largest organs of our body and has a many important functions. Everyday its exposed to extremes of temperatures, pollution, oxidative stress. This along with a chronic illness, malnutrition, dehydration and taking medication means you have to be even more … Continue reading Looking fresh faced Feeling like a disgrace.
Ive decided for May I will post different chapters of my whole EDS journey. It needs to be broken into segments as its a long ol tale. May is Ehlers Danlos Syndrome Awareness month or The Ehlers Danlos Syndromes as they are now known since March 15th 2017. I dont know why that makes me … Continue reading My EDS journey -The start of the road pt1
Since Christmas I'm faced with this question "when are you off?". Its usually asked with excitment when you've a holiday or a weekend away booked. When you are in my situation though it means when are you off to London for medical care again? … Continue reading When are you off?
Two weeks ago I finally got to see the Cardiologist. Its about time its not like my heart hasn't been on a nonstop rave waiting for this 'urgent' appointment referal that went in on August 4th. I've been having none stop issues with tachycardia again since about May again.Tachycardia is a racing heart beat over … Continue reading Eds The not so Beautiful Life-London Update
Yesterday my mother recieved the Midwest Carer of the Year Award. It was overwhelming and we are all very proud. I got to read the nomination I wrote for my mams entry. I couldn't remember what I wrote as it was all the stuff that she does everyday and I just typed as if I … Continue reading My mother is Midwest Carer of the Year 2016
Ive always just wanted to be me, not me + a chronic illness. So I was always quiet about my illness and diagnoses. They really only started to hit me most when I was 17 and was hard to hide as much then. At 19 I was diagnosed with a rare muscle disorder called Myasthenia … Continue reading Fundraising For Your Life
When you come out of a place of complete darkness back into the light, its like putting on a pair of glasses. You can see clearly again, perspective pushes through. I listen to music again and hear lyrics and musicality. I talk to people , communicate again on social media , I can answer the … Continue reading The Chronically Disconnected.