I am incredibly close to my mum, she is not just my mother, she is my best friend, I tell her everything, no holds barred. So I know how incredibly hard it must have been and must still be to see her daughter unwell.
She has taken the time to get to know my conditions, which has been very important to me. She has supported me 100% through the last 8 years attending most of my appointments with me (into the 100’s!), not just only for support but for gaining knowledge from the professionals and getting their advice on how best to support me.
She felt that it was worth writing a blog post from her perspective as a mother of a daughter with vestibular conditions and mental illness. Not only has this been quite therapeutic for her to write down some of her feelings, but also for me too. She thought this blog might help fellow sufferers and friends and family of sufferers, to show how important it is to support your loved ones through whatever condition they may have and to try and understand as much as you can.
“This has been a huge learning curve for me as the mother of a daughter who suffers from vestibular conditions and mental health, all beginning back in 2010 after my grandchildren were born.Regarding the anxiety side of things, I think she is the most unlikely person I would have expected this to happen to, as she was probably the most confident person I knew in everything she did.Since the start of the very first vestibular symptoms in 2010, there have been many visits to clever consultants and doctors, which I have found very informative and interesting. It has really helped me to understand what she is going through hearing it from the professionals and the ups and downs which can occur. Relapses are very common with her conditions and she will always have them, but as her newest consultant says they should hopefully get less frequent as the years go on if she keeps on top of things. My husband also attended many of these consultations and also most of the VRT ones which he found fascinating, especially how clever the technology is getting!I felt the course of CBT therapy was a great help with her anxiety. On one of the first visits I was called into the room, as she was very upset at re-living her horrible experiences but as the visits went on over the year and a half, I feel they got less upsetting but started to get very helpful to her, teaching her the tools to cope with her anxiety and depression better. I was even asked to put my feelings of how she had improved into a drawing which I found quite easy (there was quite a bit of art therapy involved in her CBT). My first drawing was a dark road with no way through but eventually at the end of her CBT journey my last drawing turned into a sunny open road with light at the end. Just as at the beginning of the therapy she wore dark coloured clothing but gradually brightened up her wardrobe and even wore colourful sparkly jewellery as she began to feel better in herself!I know relapses are common but I find them very frustrating as an onlooker and very upsetting. As soon as she is feeling a bit better, she is able to do things more and more and then it’s like the balloon suddenly bursts and she is feeling unwell again, unfortunately they are all due to certain triggers and part of her complex chronic vestibular conditions. It must be even more frustrating for her.I find it difficult that others do not seem to understand or want to understand her conditions and in Lara’s case I think it is because her personality is so outgoing and bubbly and one would not know how badly she suffers on a daily basis. This is the issue with invisible illnesses.From an outsiders view I really admire how Lara has worked so hard to understand her conditions inside and out and I am sure all her research has helped her come to terms with it as much as she can. I met a neighbour a while ago who by chance told me she had a very similar condition (BPPV) but was afraid to have some treatments, which might help. So her anxiety has kicked in in a big way and she is having CBT therapy to help.I have made time to read all Lara’s blogs and information she has sent to me over the years and recently looked at a very informative vestibular professors video, which explained vestibular conditions very clearly. Anyone who doubts the validity of the conditions should read through her blog as its very enlightening.To sum up I can fully appreciate how all this can lead to deep depression and I am so pleased Lara is such a strong positive person and because of that she manages to get through her dark days when they darken her door. The key is she has helped herself without a doubt and is now using her experiences to support and help others with vestibular conditions. I am very proud of her.Like me, if you are a relative or friend of someone who suffers from vestibular conditions or mental illness, spend some time trying to understand their issues and most importantly support them through it.”
I would love to hear you and find out whether you have had any friends or family write down their feelings about your conditions and whether it has helped you? The next person I am hoping to get to write their feelings down on paper is my husband! Watch this space!
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My mother has been to every appointment with me also, she remembers those things I don’t. She has been my rock, while my hubby holds down the fort and the kiddos. Unfortunately I have to travel 4 hours to see my physicians, as I’m still trying to find someone locally that understands vestibular migraines, otoscleroisis, hyperacusis, mal de embarqment and Tullio phenomenon and doesn’t look at me like I’ve lost my mind. I was only diagnosed the end of 2016, so the search continues. I’m very thankful I found your blog.
My 11 year old daughter was recently diagnosed with MAV and the more I think today it hit me how muc my daughter’s life’s has changed. There goes her dream of being pitcher for a college team or being the goalie on a hockey team. We thought we ruined her childhood telling her about Santa and then this…this is ruining her childhood. She has to take pills and supplements, go to doctors appointments all the time, go to therapy, worry about the sun and noise and how much water she drank today or when is she going to feel like passing out again. Ye si know it could be worse, it could be something fatal, but this is so making my baby have to grow up even faster than she already is. And no one will understand. her dad doesn’t even understand. I feel like it’s just her and I in this