21 May 2014

There Is More to Me Than This Illness

I have wanted to write this post for sometime now but I didn't quite know how or if I am honest if I was ready. As some of you may know I suffer from a Balance Disorder called Uncompensated Labyrinthits, I have balance problems and suffer from severe dizziness. 

Dizziness I wish there were more words to describe you. Unless you have experienced this I don't think you can fully begin to comprehend how debilitating this condition can be, how you struggle to focus on everyday tasks you previously took for granted. It is an invisible illness, not as apparent as say a broken leg. You can't see it therefore others find it hard to understand. Most of your energy goes into hiding it, pretending your ok, just wanting to be 'normal'. Although I don't like saying it out loud, it is hard. My symptoms at the beginning were quite extreme. Along side the severe dizziness and imbalance there are the bits I don't like to talk about. The nausea and vomiting every time I moved,  fatigue, blurred vision and slurred speech. The fact that I barely knew my own name due to the dizziness, foggy head and general feeling of unwell. I couldn't walk on my own, I found myself having to rely on others and was left pretty much housebound.

The last few years have been a journey to say the least. I have worked my butt off through my rehabilitation and pushed and challenged myself. Although at times I was my own worst enemy, pushing myself too hard. It has been trial and error finding out what works best for me. I have adapted my lifestyle, making sure I get enough sleep, changing my diet, eating little and often and managing my energy. Most importantly I have learned to say NO to others when I know I am too unwell to do things.
I don't let it stop me from doing the things I love however there is still one thing that bothers me. It may seem like a little thing but getting my photo taken makes me feel sick to the stomach. The eyes are the giveaway that's were you can see it, the illness, that glazed over 'your not at home' look. There was a period of time where there are no photos of me, mainly because I was too ill and the fact I just avoided the camera.  Paul has managed to get a few sneaky shots of me over the years when I wasn't looking or tricked me to turn around and snapped me before I had time to protest.


Above a picture of me at my worst. I thought if I just put it out there for all to see then I could let go and be done with it. It was taken on Christmas Day just before I started my VRT (Vestibular Rehabilitation Therapy). The thumbs up and crooked smile trying to mask the fact that I just wanted to crawl back into bed. I was so unwell that I couldn't even unwrap my presents however my niece was happy to help. I can see it, maybe it's just the memory of how ill I was at the time but I know it was there even if others think I look ok.
For my blog and my social media sites I have been gradually uploading photos of myself. On Instagram I have been doing a quick selfie and posting it before I have a had chance to think about it. I wanted to overcome this and eventually this led to a photo shoot of me in the studio for the website. 

Below a few of the snaps of the studio shoot taken for the Dizzy Miss James website. It ended up being a fun afternoon there were tunes, giggles and more importantly biscuits.

OUT TAKE! (my Blue Steel)


If there was one word I would use to describe this condition is FRUSTRATION. Frustration that you are ill for such a long time with no progress. Frustration that you are not believed by others. Frustration that your body won't do the things you want it to do. It's almost like a bereavement, you greave for the way your body used to be. Eventually you have to stop trying to do the things you did before the illness, accept what happened, let go and move forward.
I have had amazing support from the people I love, they have held me up when I couldn't walk, made me laugh and showered me in hugs through all of this. To them I am eternally grateful. I am an active member of the support group NE1 Dizzy where I have met some truly inspirational people that I now consider to be dear friends. Through the group I was given the opportunity to be interviewed by a couple of local radio stations to promote the annual Balance Information Day and share my story as a 'dizzy' along side two other members. It was such a fun experience to see behind the scenes of a radio station. This is a great event if you or someone you know suffers from dizziness or balance problems please do check it out.
Looking back I can't believe how far I have come or how I have managed to get to this point. It is still something that I deal with everyday and although it is part of me and has been for over 6 years now, it is not who I am.

I am a fun, chatty, happy individual who has a love for life and a creative soul.

There is more to me than this illness.

In a strange way I am thankful for what happened. It has pushed and taken me in directions that I never would have imagined and I am excited for the future!

For those of you that suffer from a long term chronic illness, stay strong and I'm proud of you.







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13 comments

  1. I love that the main theme to this post is "there is more to me than this illness". Great post.

    Meg | Meghan Silva's Blog

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  2. Hi

    Would never of thought. You always look happy and look so lovely. More than anything I felt you you letting your talent/work speak for it self. Never would of guesed and you right your more than your illness you are a gorgeous talented artist. Keep up the good fight as I can understand completely as I live with someone with a chronic illness a lot of days can be difficult.

    Much luv x x

    MLFx

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    1. Thank you for your kind words it really does mean a lot! :)

      V x

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  3. Hi Victoria, I saw your post on etsy and just wanted to say, I feel your pain to some degree. Two years ago I was diagnosed with vestibular neuritis and although it was nothing like what you have with the nausea and blurred vision it was extremely frustrating to be lightheaded and off balance most of my day. Trying to concentrate took all my energy. I especially hated the fact that no one understood what my problem was as it's invisible and I looked fine and still functioned. I must have said the words "I'm dizzy" about a million times that year. It lasted for about a year and has gradually mostly gone away. ( I have my own theory on what causes it). Anyways, I applaud your courage and determination (sweet shop!) and hope you find relief. Pamela www.pamelam.etsy.com

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    1. Thank you so much Pamela! I have been overwhelmed by the response to this post but hopefully it will make some people aware of the condition.

      Take care

      V x

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  4. I think you're truly admirable for sharing this, and it's so inspiring that you're not letting your illness own you. xxx

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  5. I'm glad that you're doing so well now and hope that things only get better for you in the future :) Keep moving forward! x
    barelyinstyle.blogspot.co.uk

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  6. Everything you have said is exactly how I have felt having had vestibular neuritis for over 5 years now. And you are right about people not believing you are ill - when you look well from the outside they presume you are ok - there have been days at work - I work in an office where I have been sick 6 or 7 times a day and I try and try to carry on but some days I have to go home and I feel that some people think I'm faking it - why on earth would I fake something as awful as this? Anyway - like you say - with exercise and now cyclizine tablets for the sickness I'm hoping to get back to the even keel I was on about 5 months ago. Sorry you have this but nice to find a kindred spirit. Sue W - Doncaster, South Yorkshire xx

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    1. Thank you for connecting Sue. This thing we have is not easy but you are not alone. Us dizzies have to stick together.

      Much love and take care

      V x

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