Firstly I want to thank you if you got in touch following my first blog post. I was overwhelmed by the number of people who know me and many who don't , that got in touch. It's meant a lot.
Most importantly though I want to thank you for getting in touch with your stories.
Here's an extract of a message I received from a lady who wants to stay anonymous.
Apologies for the random message but a friend recently sent me through your blog and I wanted to reach out privately as I felt that you've literally put every moment I'm going through into words.
I was diagnosed with vestibular migraine around 3 years ago after 6 months of seeing GP's and suffer from the same symptoms as you. It's been a horrible life-changing experience that I haven't been well-equipped to deal with. I left a great job and have really bad agoraphobia now such that I do not/ cannot go out on my own. I've been on various medicines over the last year after having seen a specialist neuro and I've recently discovered they've actually been making me worse. These days I consider it a good day if I can stay out of bed all day because of the constant dizziness and weakness.
Without continuing to whinge, it was great to read your blog and I've actually passed it on to my family and friends so that they can understand what I'm going through as I get the feeling at the moment they just think I'm being too weak.”
That's quite a profound statement from a stranger who is going through something similar.
I know, I'm not, and I know the lady concerned isn't after sympathy but just some understanding of what it's like living with such a condition. Further conversation with the lady proves she is positive that things will get better. it's the life changing impact it can have on a person I want to highlight.
If you're reading this post and thinking it's all a big fuss about nothing or you're not sure what the condition is and how it affects people, I have some great news. I've been in touch with my consultant and he’s agreed to be interviewed for one of my posts. I hope in the near future to share that interview with you.
Living with a balance condition can be hard, because you have to think about everything carefully before you do it. Each day can be so different. You can feel great one minute and feel lousy the next. If you have a cold or the flu it can make it worse, if you've not had enough sleep , it can make it worse. If you have other health conditions it can also make it worse. The biggest problem for me is the physiological affect it’s had. . You can become fearful- of going out, being in big crowds, crossing a main road, going shopping, most things in fact. When I am out , trying to walk in a straight line is rather difficult as I try to focus on doing just that . I'm told I look like a someone who’s had quite a bit to drink.
So when it happened the second time round I thought I'd be better equipped to deal with it. Sadly not! I ended up having an ear infection, then the doctors thought it was labyrinthitis, so I was signed off from work for a few weeks, which then turned into months and now almost a year. I went to work for the first three or four weeks but I couldn't drive and couldn't get across the main road, so I was getting taxi’s to and from. I work for a radio station so I would just about manage a few hours on air and then go home. It got to a point I just couldn't do it and was signed off and here I am almost a year later, at home.
The day to day challenges – just getting around without the fear of falling or banging into things. The attention you have to pay to things because your brain can't focus properly, the stares you give people because your trying to pay attention,. Watching tv , getting in and out of the shower. Standing up , sitting down . Trying to carry things and walk at the same time. Now that is difficult. And if it's more than one thing you're trying to carry that really is a challenge.Think of a toddler who’s learning to walk with a toy in its hands. How much concentration do you see on their face as they try to walk and carry an object at the same time. How often have you seen them fall and learn to get back up again. It's a little like that I guess. Having said that I'm a lot better than I was. I can do some of the things almost like before. Every time I am able to do something I couldn't, It’s a celebration. A little victory all of my own. I see a balance physio on a regular basis who is helping me with trying to re-train my brain. I'll tell you more about that in another post.
For now though if you have questions, comments, feel free to ask in the comments section below. If you feel there's someone you know who might benefit from this blog , please share.