Monday, 14 May 2018

Long time no speak

It’s been sooo long since I’ve written anything. I apologise for that So much has happened in that time I really don’t know where to begin. A trip abroad for a friends wedding was a real high. Considering I didn’t know how I would be during the flight or how I’d cope , I had an amazing time. Poland was fabulous. The wedding was amazing and so was Krakow. I managed the flight which I was so fearful of. Only minor panic and dizziness during the flight. I was so pleased with how I coped. I couldn’t have done it without the other half though. Everything was done at my pace, with lots of breaks , rest time and an arm to hold on to.  If you’ve been to Krakow, you’ll know most things are accessible only by foot. So armed with my husband , a walking stick and sunglasses we managed quite a bit of sightseeing whilst we were there.

I felt so relaxed and ready to take on the world after that trip back in August of last year that I decided it was time to go back to work. Sadly the work environment and short phased return didn’t work out and it not only has knocked my confidence, but led to things going downhill for me emotionally, to the point of not wanting to see or speak to most people that weren’t part of my inner circle. I went to see the doctor who wanted (and still does) want to give me anti depressants. It’s not an option I’m ready for just yet.  I’ve been seeing a medical psychologist at one of my local hospitals who id rather work things through with.

I think I’m coming out of that phase slowly. I’m starting to re connect with people and trying not lose hope and feel drowned in everything that’s happened over the last two years.

I have connected with some amazing people who have been such great support to me, including a lovely lady called Toni Robinson. She’s offered lots of help and advice on work related issues. As someone who works in HR (Human Resources) she agreed to do a Facebook live session with me around your rights at work and your employers responsibilities to you. If you fancy watching it it’s on YouTube or my -Living with a Balance condition page on Facebook .

I’m also talking to the Menieres Society about creating some videos for them. So watch this space for more information in the coming months.

I’ve realised that there is a real need for a support group where I live in Leicester for people with vestibular conditions as there isn’t anything here as such for people like me to be able to share/vent/meet like minded people, so it’s something I’ve been looking into with the help of a local disability group. In fact Laura Horton from LCIL (Leicestershire Centre for integrated living) has been amazing in supporting the idea and offered me a venue and lots of great advice . I also recently attended an event to gauge interest that they had organised. I have been slightly slow off the mark about getting the group going, I think mainly because of lack of confidence and being unable to focus on any one thing for any great length of time. I know it will happen, but it might take a bit longer than I first imagined.

I’ve had some interesting conversations with my vestibular Physiotherapist too. I have to say she’s fab and very patient with me. I tend to see her every two months . I have been feeling better on the whole as far as the dizziness is concerned. I’m trying not use a walking stick as much and rather than wearing sunglasses (even when it’s not sunny), I’ve been wearing my distance glasses which are anti glare, so I don’t get accused of trying to look cool, or like I’m a star or something. Lol! ( it has happened, and it does make you more conscious) I digress, so my conversations with Michaela have in recent months concentrated on how much Vestibular condition CAN  and DO affect you emotionally and how much that can then affect you physically. A vicious circle if you don’t deal with it. ie: even though you may start to feel better physically, the emotional stress and anxiety of a vestibular condition can bring on symptoms and you end up going round in circles. I’m not sure if I’m allowed to say,  but I know she’s working on developing a programme to help patients tackle these issues.

So with this in mind, and also knowing how much the anxiety and stress can affect someone I’ve decided to do another Facebook live session with psychologist Nagina Parwez answering your questions on how to deal with it. Methods you might try, or have tried that have helped you. Do make sure you join us on the 4th of June. Here are the details .

Finally for now I forgot to mention I went to see the Neurologist who has suggested that I have a condition called Hemicrania Continua. Rather than a typical migraine this is slightly rare. And there is only one treatment for it she says. A medication called indomethacin. A medicine I’m yet still to try out of fear more than anything else. Maybe I’ll explain why next time… it’s too long a story for now.

As always thoughts ,comments and how you’re getting on with your vestibular condition welcome.
Speak soon I’m sure and don’t forget the Facebook live session on June the 4th 2018 . Just look for Living with a balance condition page.

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