It’s been nearly a year since I last blogged. You are probably wondering where I’ve been and what I’ve been up to.
The last year has been a tough one but it has also been filled with positive experiences, new friendships and a lot of personal reflection.
The main focus of the past year has been on my gastro-intestinal problems which have deteriated further. My large intestine/bowel has shut down completely now. There is no motility anymore which caused increasing blockages and pain. I am now very blessed to be under the care of a great GI dr who not only has a particular interest in functional GI problems but also treats a number of patients with EDS/POTS and has developed good understanding of how these conditions affect the GI system.
We have tried a number of different medications and intestinal flush systems but none of them helped. We did consider ACE surgery but have since discovered that my small intestine/small bowel and stomach are now also affected. These are causing me to be sick a lot and have problems eating. This makes surgery too risky and we need to keep my small bowel and stomach functioning as much as possible for as long as possible.
My GI dr wants me to take part in a clinical trial using Sacral Nerve Stimulation to give some motility back to my large bowel along with a new medication waiting for UK licence that is supposed to be very good for the type of abdominal pain I have.
We are running out of options so we are both hoping that the Sacral Nerve Stimulation and new pain medication will help.
2012 is becoming quite a year of change for me. I am in the process of applying to do voluntary work at my old College and I am tightening my purse strings so I can save up to study with the Open University. My aim is to study a few undergraduate modules to get me back into studying mode and then go on to study for a Masters in Art History.
This is a huge challenge but I am determined to do it. I have always wanted to go on to do a Masters degree and when I decide I want to do something I get it done. Even if that means a lot of hard work, life changes and suffering more health problems as a result of pushing myself harder.
When I first got ill 5 years ago I had no idea it would take as long as it has for me to get to the point where I could get control of my life again. The first two years were spent dealing with the grief that everyone goes through when diagnosed with an incurable condition like EDS. Once I had dealt with that and accepted my new future I then had to learn as much as I could about EDS and POTS. The knowledge I gained has played a massive role in the treatments I’ve chosen (and those I turned down) as well as helping me adjust and adapt to my new challenges. Last year focussed mainly on figuring out what I was going to do. Would I fall into a pit of despair and let my health dominate my life and dictate everything I did and didn’t do? Or would I fight and take back what I could control and find ways to deal with those I couldn’t control? I chose the latter.
I am ready to get my life back on track. To find a place in society where I can contribute and make a difference. I will no longer let my life be controlled by a condition that I have little control over.
I had to find myself again. To figure out who I was, who I had become and where I fit in.
I have started the process of fitting back into the world. I have been leading teaching sessions at bible study and currently preparing my second course for the group. I have volunteered to help with my Church’s Sunday school and youth group. My voluntary work at the college should start soon and I am hoping that it may lead to a small part time job to get be back into employment.
All I need to do now is get my brain-fogged brain working again so that it will be capable of studying the courses I am aiming to do.
At the beginning of this whole journey when I was first diagnosed I had no idea how much my life would change. There was no warning given that my life would be put on hold for so long or that it would be as hard as it was to get out of that hold.
But I am ready and I can’t wait to start this new stage of my life.
With the love and support from friends and family, and the grace of God I am ready.