After reading Katies story and many others like hers I have felt compelled to write to you, to thank you for your newsletters, all the information that have helped me through my disorder, my vestibular disorder was as a result of Gentamicin Toxicity three and a half years ago through major surgery. It has turned my world upside down. I had to do so much research myself which lead me to your organisation, as no one here on the Gold Coast Queensland Australia really knew what to do with me other than to put me through a multitude of tests and medications looking for a cure. There was one exception, a Professor Michael Hamalgi in Sydney Australia who is the leading expert on Vestibular Disorders in this part of the world. After I contacted him by letter and referral from my GP he phoned me and had a good talk with me. He was wonderful and gave me some great advice, the biggest being not to give up. I had to provoke my brain so hopefully it would start to compensate. Together with his advice, your organisation which has been the best assistance I have had and my own strong will and stubbornness to not give up plus a great support system of family, friends and my wonderful husband Don, I am now driving albeit half hour only drives, my coping strategies have improved. I have adapted, found other ways of doing things I love and performing day to day tasks that people take for granted.I was unable to read a book which I love, now I can using a tablet and downloading books which is brilliant. My vestibular physio told me to play computer games, it was hard at first as I couldn't look at the computer screen or the tv but now I'm rocking it!! For exercise I have an elliptical trainer, I can do cardio,I can hang on for safety and it provokes my brain, I can now take my 2 little dogs for a walk, I have to do them separately as 2 together is too much for my brain and my vision to handle, it just means I get twice the walk, I'm not complaining. I do avoid shopping centres unless absolutely necessary, I'm lucky I have local shops that have all I need. I use a walking stick when out and about, it's a support for me plus a visual aid for others so they don't bang into me and cause me to fall, once momentum hits I have no control and I just fall. I still fall and have had some serious ones, I've broken toes on both feet, I bang into things especially door frames on a daily basis, I'm always covered in bruises, but I look on them as little badges of accomplishment as they are a reminder that I'm still out there doing things I love, even housework. My husband bought me a pair of Lovebirds and now that small thing has started a hobby that I love, I now have all types of finches, parrots, quail and a member of a bird club with meetings that I attend once a month. This means my husband and I both get out of the house and get some well deserved social interaction. I'm hyper sensitive to noise, certain chemical odours, when I'm having really bad days my eyes blurr, I now get migraines, I'm very sensitive to heat, I feel hot all the time when before all this I loved the heat and the sun, now I need air conditioning. We found that changing the furniture in our house to dark colors and having everything linear made a huge difference, I can now tolerate colored cushions and accessories to brighten things up. I still can't cope with anything messy or out of place, I think it's because inside my head is such a mess, bouncing and twisting and thick and viscous with no order that I need everything outside my head to have order. Having 2 little dogs from puppies, they are now 2 yrs old, has helped as they have all their toys etc all over the place, so this has helped. I also find that anything that I love to do is a great distraction to the pain and most importantly the sadness that I sometimes feel. I have always been a problem solver and a fixer, the most frustrating thing about my vestibular disorder is that I couldn't fix it. Once I got past that and found new ways to be me, found new hobbies and new ways to enjoy my life, I was able to move forward. I still have the odd bad day, life and just stuff can get so hard but having my wonderful husband to pick me up when I fall, to tell me to suck it up princess when I'm having a bad day ( in the nicest way he can ) and to give me the chance to have a go at something even though he thinks I could fall or hurt myself (maybe) is a great gift. I'm 57 this June and I know he's helping me prepare for the time when I maybe on my own without him as he is a few years older than me. He constantly tells me how proud he is and is amazed of what I've accomplished and how far I've come. Every now and then I say I wish people could spend half an hour inside my head, then maybe they would get an understanding of what it is like to have this condition 24/7. But in saying that I would not wish this on anyone. So in closing, thank you all for your hard work, encouragement, hints and tips, bringing other people's stories to us so we know we're not alone, the forums and for not giving up on us, including those of us in Australia and other parts of the world. Thank You All Julie Mathieson
Did this information help you?
Join VEDA's email list to receive the latest news & updates!Sign me up! No, thanks