Life can be very difficult with Thyroid Eye Disease (TED) but with the assistance of the NHS and wonderful Orthoptists, I can view my future with confidence.
My name is Janet and I have been a Dispensing Optician for the last 30 years, I enjoy a busy social life, (eating out, theatre, cinema) practice yoga and Pilates and during the pandemic enjoyed doing jigsaw puzzles (as everyone did!)
In January 2020 I started to notice my vision was not as good as it used to be, a little double vision was creeping in. I asked a colleague at work to check my eyes and the double vision was confirmed.
Over the following months, the double vision was increasing, and as the onset was quite rapid the Optometrist referred me to see an Orthoptist.
It took time to diagnose Thyroid Eye Disease as it can present itself in a variety of variants. It seems quite ironic to be a Dispensing Optician and have Thyroid Eye Disease (TED) definitely a talking point at work.
I never expected my life to change so dramatically, it soon became apparent that I would have to give up driving due to the uncontrollable double vision, losing some of my independence, and I have to rely on my husband to drive me everywhere I need to go.
Luckily I walk to work and can continue working. Work is challenging but I have found ways to continue doing my job and having an understanding team around me helps. (My colleagues understand what this disease has done to me.)
Up to the time TED was diagnosed and following the diagnosis the Orthoptic team have managed my expectations and helped my understanding of what is happening, enlarged restricted muscles, painful watery eyes, and retracted eyelids. After assessing the amount of double vision, they helped improve my vision by supplying optical aids (eye patches and Fresnel stick on prisms). The role of the Orthoptist is multi-skilled and so important.
I found the change in my appearance very distressing; my eyes were looking in different directions and looked very starey, this had an impact on my mental health.
As my mental health deteriorated, I didn’t want to socialise or exercise and at times I found myself in some very depressed states trying to work out if life was actually worth living.
My Orthoptist saw me on a day when I was not coping well and suggested I contact the TED Charitable Trust and also organise some counselling, the advice was invaluable, and I have had great support.
I am now beginning to see a brighter future, one worth living. I have even started attending my regular yoga class again, always making sure I’m by the wall just in case my balance goes off and I fall onto a fellow Yogi!! It is amazing how a positive mental attitude can change your whole outlook, and I know my future eyesight will improve.
Having been under the care of the Orthoptic Department at Addenbrooke's I would wholeheartedly like to say a massive thank you to Debbie and Daisy for making me realise life is still worth living, with a future ahead that I had lost sight of due to this awful disease.
My TED journey still goes on, I have been treated with two courses of steroid infusions and radiotherapy, and I’m now awaiting corrective surgery. More orthoptic assessments will be required along the way to keep checking how stable the double vision is and how the muscles are working.
Having been under the care of the Orthoptic Department at Addenbrooke's I would wholeheartedly like to say a massive thank you to Debbie and Daisy for making me realise life is still worth living, with a future ahead that I had lost sight of due to this awful disease.