Saturday, 18 December 2010

3 Years

That is how long it took for me to work out what was wrong and get treatment despite extremely poor medical support available in this area. During this time I was diagnosed with every potential form of vestibular disorder, was ignored by my GP and essentially left to my own devices to work out the problem myself. I did, I dedicated my life to understanding the problems, spoke to experts in 10 different disciplines before I eventually established that the problem is what triggered it. I would like to pass on my experience to others on this community since it was this site which helped me understand many aspects of the disorder and affected other people like me.

Now those 3 years do not feel like 3 years of normal life, these were 3 years were I would have gladly accepted physical torture instead for every day that went by. Most days were spent without a sense of joy, or happiness since even the slightest head movement cause headaches and dizziness that made life unbearable and not worth living. I consider myself a rational person, when I looked at the quality of my life and what it represented I knew that it was not. It cost me my relationship with my family, friends and partner. Worse it took from me my dignity, my faith in myself and my beautiful daughter who I cannot see now unless under supervision.

I wonder how many of you like me have spent hours trying to decide which serious illness and missing sense you would swap for ridding yourself of this condition. That is what is to truly known what it is like to have a vestibular illness. I never accepted it, it cost me dear for not accepting it but I could not give into it. Unfortunately the chance of getting real treatment is almost negligible, there are many people who claim to know about this disorder in the medical profession and do not. I would say that there are only a handful of people in the UK at this minute who can really help a Vestibular Patient in a meaningful way. The rest are just wasting your time (please believe me I know). This sounds harsh, I know what it is to build your hopes over weeks to see a Expert (wondering if this might be it), to go through the daily constant pain, taking drugs which make me sick and wretch, for them to tell me they can basically do nothing for you.

I believe I am the most tested Vestibular patient in the UK, I believe that whilst not medically trained I can provide better guidance than anyone you are seeing. This is no idol boast, I would like to publish a medical documents from my MANY evaluations to help members understand this disorder, the treatments which are effective and the ones which are not. I hope the admins (owner) helps me with this since I truly understand how desperate this disorder is and if I can give even one person here a chance to turn around their lives at Christmas it will help me balance the sacrifices I have made. I would never give anyone with a Vestibular Disorder false hope by posting this message, I can really help many people with this disorder by simply telling them what my symptoms were, what treatments worked and what the triggers were. I know from dizzy communities that many share my symptoms and the problems associated with it. I know who you should see and what you need to evaluate the condition. I am currently having reports for a legal case which represent the complete understanding I have of my symptoms which I will share to show you that I am serious.

No comments:

Post a Comment