Wednesday, 29 March 2017

Treatment programmes for Balance Conditions



Since my last post I've had lots of appointments for various things and not been as well. I've not been sleeping very well and suffering with migraines,  so it's had an impact on the balance condition. It just makes it a little harder to focus, concentrate and feel less confident about getting out and about. It's all part of having Vestibulopathy with visual preference. It's  a minor setback and I'll get back on track.

I hope you remember my last post. If you don't -go back and read it and watch the video. You will see Consultant ENT surgeon Professor Rea talking about balance conditions and dizziness. He talked about the often dramatic affect it can have on people’s  lives.. It's not all bad news I might add even though it can be a long process, help and treatment is available.

In this video, Professor Rea explains what that help entails .





Recovering from a balance condition requires a lot of hard work and effort on your part, making sure you do the exercises you are given. I want you to see the type of exercises you might have to do from a vestibular physiotherapist. So I'm going to be talking to the lady I see. In the next few posts I'll be bringing those to you.



I’d really love for you to share your story with me – your journey! So I can share it with others. Professor Rea’s interview prompted a lot of you to get in touch privately. If you feel you can talk about it and would like to be a guest blogger, please do get in touch. Leave comments below, or seek me out on twitter @rupalr . Some of the people that have messaged me privately don't feel comfortable doing that and that's fine too.. I know for me , it seems to be helping. I don't feel so isolated, or as misunderstood . In fact I've noticed people/friends have become more considerate in how they behave with me. I don't have to try and explain what it is and how it's affecting me. They know, because they've been reading the blog. Which for ME, is a bonus. They know it's nothing sinister but know my limitations too and I don't feel as panicked about having to try and explain why I might not be able to do something. It's been really useful to write things down.

There are always going to be people who just don't get it, or just can't be bothered to take the time to find out what you have and how it affects  you. And you know what - I say- let them go! You really do find out who your friends are when your going through tough times. I certainly have.  I've also discovered those that are true friends.  I have an extremely supportive family and those close to me who are there when I need them.

6 comments:

  1. Thank you so much for doing this blog
    It has been very helpful & informative.
    I was diagnosed with the same condition as your about 8 years back, but sadly suffer various other issues too including ankylosis spondylitis, & fibromyalgia to name a few, unfortunately they also bring out various balance issues.
    Also similarly to Vestibulopathy with visual preference, the above are not really understood by most, including family & friends ��
    & to top that it makes it even harder as I've never been good at expressing how I feel!
    Hence this often leaves me feeling very lonely & frustrated at the lack of support��

    But having found your blog, it gives me a sense of comfort knowing I'm not alone, & that there are others out there that can relate to some extent
    So once again Thank you❤

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  2. Really enjoyed reading your blog, Rupal.
    Would be fun to have a chat.
    Have you come across www.vestibular.org? I'm raising funds for them on their Dizzy Dash on 20 May: https://vestibular.org/civicrm/pcp/info?reset=1&id=290&component=contribute

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    Replies
    1. Thank you Isabella. Would be great to chat! I've been looking at the website too. Lots of useful info there. Aden you on twitter? Could we follow each other and communicate that way?

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  3. Good morning,

    Great blog, really useful reassuring to read.

    I wonder if you could help at all. I am single side profoundly deaf after an infection a couple of years ago. 

    The infection destroyed my cochlear and vestibular system on my right side.

    Clearly I have suffered significant balance issues since although have just about got these under controlled now. Unfortunately my employer wants me to work some night shifts (I normally work 8-4). I have previously found that tiredness and fatigue significantly effects my balance. I'm concerned that if I go back to working shifts it will impact on my health/balance.

    I have raised this with our occupational health, the Doctor has said there is no evidence of a link between tiredness/fatigue and a negative impact on my balance.

    Are you aware of any evidence that would help me? Or fact sheets/information etc? Anything would be hugely helpful.


    Many thanks for your time, really appreciated.


    Jeremy Clarke

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  4. Hi Jeremy

    My specialist and vestibular physio would certainly say there is a link between tiredness and balance. I’m no expert, but lack of sleep or rest certainly affects condition for sure.
    I can’t seem to find anything specific to help you but it’s worth checking out and perhaps even calling the Menieres Society helpline for advice.
    http://www.menieres.org.uk/information-and-support/day-to-day/information-for-employers

    If you have access,to Vestibular Rehab specialists or would be worth talking to them too.
    Check out my other post from April https://rupalrajani.blogspot.co.uk/2017/05/ this may help.

    Please let me know how you get on. I’m sorry I can’t be any more specific .

    Best wishes

    Rupal

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  5. Thanks Rupali, much appreciated. I waiting for an appointment for the Leicester Balance clinic so hopefully they will be able to help.

    Thanks again.

    Jez

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