I have, and its not exactly a great feeling. When I first became unwell with CFS/ME, things started to slowly go down hill. It is quite an unsettling feeling.
I don’t really know when it all began, its hard to tell really. I’ve always had some little health issues, it seems that they could of been linked all along.
Since I was nine I have suffered from migraines. I’m not too sure if this is where it could of started, they have always been irregular and not to mention they drive me up the wall, but I’ve learnt to live with them.
My next unsettling health issue was in 2011 winter. Out of no where I began experiencing night sweats, I was sweating buckets during the night. Literally I would wake up in the morning and my blankets were soaked with sweat. Automatically you would assume that maybe I had a heavy duvet on, or maybe I was hot. Neither of these applied. If you ever experience unusual night sweats, do not google it! One day I googled night sweats and found all these terrifying and unsettling diagnoses online. I visited my doctor and she made me do a heart ultra sound and wear a heart monitor overnight, as well as doing multiple blood tests. It was all a mystery and became unsolved, after 3 months they disappeared.
The next lot of excitement was my mysterious bladder infection, I had 3 lots of antibiotics and it still went on. This started in December 2012, the first sign of this was during work while I was serving a customer. It came on so sudden I felt this urgency to pee, I was trying to hold while I was serving my customer. I broke out in a cold sweat and felt my face flush hot then cold. I had to use all my will power to hold and hope that I would not embarrass myself (the horror). I managed well as soon as the customer left I ran for the bathroom. To me It wasn’t a normal bladder infection it was more like sudden bathroom urgency and no bladder control. I was visiting the bathroom every 5 minutes, and the only feeling of pain was in my kidneys when I held. It was becoming a real inconvenience and I was also terrified that I may end up having an accident!
Adding more stress to the situation my soon to be husband and I were only weeks away from tying the knot in Thailand. We were then traveling on afterwards to celebrate with friends and family in New Zealand. Luckily for me things settled down apart from one horrible moment on the plane during landing. Out of no where I had this urgency to pee, the seat-belt light on was on and we were coming into land. I was trying my best to hold my bladder, I was sweating and had a hot cold flush happening. I was going to have an accident there was no way I could hold any longer. I ran down the aisle to the bathroom, the air hostess freaked and urgently sat me down in a spare seat down the back by the toilet. “I have to go to the bathroom” I told her very anxiously. She said “there’s a bag” and I quickly replied embarrassingly “its the other end”. She jumped onto the phone to the pilot, in a second she said “go and be fast!” I was so embarrassed. Gradually it became a bit better, I had scans and tests but again nothing showed up.
I then had the joy of an up set stomach and food intolerance to foods that I had always enjoyed. The next symptom that appeared was what led me to think that I was losing my marbles. Random belts of brain fog and fatigue would appear. I remember driving one night to pick up my husband from the airport, I had this horrible feeling of being disconnected from my body while driving it was scary. I turned the music up real loud and wound down my window to fill myself with fresh air. I was struggling to focus on the road during the entire 1 hour drive. When I arrived at the airport I got so confused in the car park (I have been there a number of times). I managed to get to arrivals and greeted my husband, he said to me “you look shattered”, I said “I am and I had no idea why!” He looked in better wear than me and he had just come back from a bereavement trip in NZ.
I was starting to have a number of encounters where I just was feeling fatigued all the time. I was feeling overwhelmed, I had a sore body and was crashing every weekend. I was also feeling stressed for no apparent reason, feeling paranoid and anxious. Brain fog, and feeling disconnected keep coming around. I was visiting the chiropractor almost every week for neck and back pain.
Eventually I crashed with the flu, this lasted a week. I recovered but didn’t quite bounce back. From that point I felt like I was getting worse, it was not a good feeling and I was starting to get concerned. Was I really losing my marbles? One night I was attending a yoga class that I attended every week. I was having trouble concentrating and holding myself up in most of the poses. I was getting so frustrated, I could usually get through the class easily. For some reason I was having real trouble. Driving home one night from work a few nights later, I had so much brain fog and no concentration that I almost had a crash, that was a very scary moment.
Eventually my body crashed again and this time I was down for good. I had lost all control my body was finally telling me enough is enough! No more pushing!!! For a while every thing seemed like a blur I had terrible brain fog and disconnection from my body. I vaguely remember having a brain scan, and tests done for all kinds of things. I was hoping that something would show up, anything! I couldn’t work out why my body was failing me, there had to be a reason!!! When all the tests came back with nothing the doctors were stuck. I was literally in tears!! How can I have nothing show up in my tests! I’m sick there is something wrong and I’m not bloody losing my marbles!!! I was tested for everything under the sun, eventually after ruling out all possible illnesses my doctor said that it was CFS/ME. It was good to get diagnosed I was able to face and accept it, and that I hadn’t gone to crazy town. I hadn’t lost my marbles, it was only CFS/ME!