Our members share there own real life story, the challenges, symptoms and their journey with a balance disorder.
First of all, I would like to thank the group founders for organising this support network and meetings. Practical help and advice is truly precious when learning how to deal with what can turn out to be a life changing condition.
My problem with balance issues started way back in 2004. I had had a summer cold which seemed to clear but it had left me feeling more tired than usual. It was the start of the summer holiday and as I work as a teacher, I guessed it was just end of school year tiredness. After a few days however I started to lose the ability to focus and I felt very light headed and even dizzy when moving around. I went to see a GP who said that I probably had an ear infection which should clear up within a couple of weeks.
The end of the summer holiday arrived but I felt no better. In fact, another very unpleasant symptom appeared. I was now experiencing sudden spins where I felt as if the world was spinning around me. On top of that the loss of focus that I was still experiencing on occasions lasted for longer and was often accompanied by diarrhoea. I also had a tingling sensation on one side of my head. It felt as if tiny spiders were crawling around under my skin.
I decided to seek further advice and was referred to an ENT specialist Professor Peter Rae who had just moved up to Leicester. The waiting time for appointments was several months but I was keen to find out what was wrong so booked a private appointment to see him. It was a huge relief to speak to someone who recognised and understood what I was talking about. He arranged for me to have a series of balance and hearing tests and a scan. His conclusion was that I was suffering from the effects of vestibular neuritis. There was damage in one vestibular nerve which was possibly caused by the summer cold. I began to see Andrew Clements regularly to start the vestibular physiotherapy and little by little I was able to gain confidence in moving around.
For the whole of that academic year I was unable to work. I had moved back to my family home as I was unable to look after myself. Without the unstinting support of my family I don’t know how I would have coped.
The school where I work has always been very supportive and accommodating. I felt able to start a phased return to work in September 2005 and we agreed that I would spend my first year back doing just a few hours a week of administrative work. I did not feel strong enough at that stage to return to teaching. Gradually though over the following 10 years I increased my hours and took on some teaching again. It was extremely helpful to be able to have such a gradual return to work. The downside in practical terms is that it was incredibly expensive. As my income was too low to support myself in the first few years, I had to use my savings to survive financially.
However, I felt relieved that I was able to return pretty much to normal with just the occasional return of the dizziness if I was particularly tired. The ongoing support of Professor Rae and Andrew Clements during these episodes and throughout my illness has been invaluable.
Having had a period of steady improvement over the course of 10 years I was surprised but disappointed when the symptoms of dizziness and extreme fatigue started to return for more prolonged periods necessitating time off work and a return to the vestibular physiotherapy exercises. This has happened on 3 occasions during the past 4 years.
2019 started well but now I am now going through another relapse which started back in May 2019. I tried to carry on as normal at work as I thought I could keep going until the summer break and then rest and get better. In spite of spins and a lack of balance I managed somehow to remain at work until the summer break at the end of July. Since then however I have had to restart my vestibular physiotherapy and I have also just started for the first time to take a low dose of the SSRI antidepressant Sertraline which Professor Rae has recommended in addition to the physiotherapy. I know that it will take time, but I very much hope that with a gradual increase in activity and the vestibular exercises I will eventually be able to regain a normal day to day independent life and ultimately get back to work. Yet again I am at the moment dependent on my very supportive family. Without them I would not be able to manage daily life right now.
As with other chronic conditions I think that the only way forward is to accept the illness and to learn to live with it until you hopefully reach a point where you can lead a more normal life. There is no mileage in looking back constantly and comparing your present abilities with those of your past. If you reach a low point, try to remember that nothing stays the same and things will improve albeit slowly. Keep looking forward and trust that the combination of your ability to respect and adapt to the illness and the evolving nature of the condition in response to treatment should add up to an improved quality of life in the future.
Thank you to all of our members who have bravely shared their life stories with us. We hope these stories help fellow sufferers feel less alone, and for the general public – provide valuable insight into the severity and life restricting nature of balance disorders.
Thank you to our Balance Warriors!
Please share your own story with us, so we can reach and help even more people. All are welcome to join, whatever your balance condition and where ever you live.
Please come and join us if you feel we can help and your don’t wish to face your challenges alone.