Once upon a time there was a "me" before ME.
Me before ME was an energiser bunny, full of bounce and vigour, I fell into bed at 12 each night having filled my day achieving all the daily tasks of a mother, a wife and a business owner. I slept for 7 hours a night and was refreshed when I rose.
While others dragged themselves out of bed I hit the floor running and didn’t slow, bouncing from one task to the next, every day full with activities, fitting in visitors and outings, dashing great distances for family needs and handling it all in my stride.
I was in my element with a full and mostly enriching life, little did I know what was to occur in April of 2012.
When ME/CFS hit I was busy as always, perhaps a little more so, each week I worked up to 40 hours in businesses, I had taken up studying 20 hours a week and somehow managed to drive 250k’s away and back once a week to assist a family member who required support.
That was a little crazy, more than others attempt to do, and I did feel that I “had” to keep going to support the family.
Then one day I stopped, I didn’t just cease doing all those things, I ceased living an even remotely normal life. From 100 miles an hour to stalled.
I was out cold for 20 hours a day and barely able to move the other 4 hours, add to that sudden onset Rheumatoid arthritis (which was serology negative, hence another symptom) and subsequent depression.
Heck why wouldn’t I be! My whole life as I perceived it had been ripped from beneath my feet.
So what does it all mean? Where do I go from here? All those questions when I had the energy or mental capacity to consider them. What are the lessons from such a life changing event?
Let’s start with my partner, I had seriously advised my daughter that if I ever became incapacitated that she should insist that I be placed in a home! My husband had forgotten to feed the pets on a number of occasions and I was truly concerned that I would suffer from neglect!
To my surprise he stepped up to the plate, and was so concerned about me, that for the first time I realised that he really does love me, and perhaps it hinted then that I had created a family that is totally reliant on me.
“Mum will fix it” was their catch cry, said to each other but never directly to me. The first hint of a lesson from this event, but still I did not listen, and for a time neither did they.
For the first 6 months there were tests and appointments, there were frequent doctors visits, trying to work out what was going on with me, finally after the 6 month mark my doctor declared Chronic Fatigue Syndrome.
“Is that a thing?” I had questioned the existence in another person in previous years, based on the comments of others, ahhh another lesson, beware of judgement for Karma is a bitch and bites hard. I apologised to that man through the Universe as I had no way of tracking him.
So the research began, thankful more than ever for the internet and google, had we been in the days of text books I would have been looking at institutionalisation for the mentally insane.
Even now, 6 years in, and still many doctors have never heard of ME, just this last month I have seen 2 male doctors who have no knowledge of the condition, funnily it did not stop one from correcting my pronunciation of Encephalomyelitis! As both forms are considered correct I simply stated the “English rule, c, followed by an i, e, or y, produces the S sound” lesson for younger ones, don’t cross a post menopausal woman when she is feeling like crap!
The lesson for me was to reconnect with my original doctor, she listens, is interested and has recognised that I have a brain and do know what I am talking about.
Medical research is on an exponential rise, like technology and most sciences the number of new discoveries, are flowing too fast to be taught in conventional ways. Some doctors complain about clients using “Doctor Google” and while I can see that some clients do not know how to research using qualified sources, it would be prudent for them to establish what sources their clients are using prior to discounting them.
The other issue is sheer volume of data and conditions, doctors are drowning in new information, more patients, they simply do not have the time to effectively research each patients issues. While patients with ME have many hours of sedentary living that can become mind numbingly boring, they have time, and suddenly I had some of that time, and I used what I could.
So where am I now? I use supplements to support my daily life which is stable at about 80% of what I was doing, once that was achieved I changed tack in careers.
My Grand Plan had been to return to Uni, get a degree and then in my 60’s start work again until 80 or so, that was taken from me, but where I have ended up is so much more rewarding and I love it.
I am Dee.
I am a Creatrix(r) Transformologist(r) with the Institute of Women International, a Women’s Business Coach with SMJ Coaching Institute and I offer nutritional guidance through The New Corner Store.
My world is busy but not too busy, I have learned so many lessons about life and myself in the last 6 years, and I continue to learn and grow. If any of my story resonates with you, please contact me via any of the social media links or my contact form.