After being told that you or your child is suffering from Uveitis, the next scary step is being advised that a certain drug or combination of drugs are required to prevent further damage and retain as much vision as possible. Everybody has their emotional limit, and mine was being told that my daughter’s uveitis was sight threatening and that she needed Methotrexate and Ciclosporin immediately.
The specialist who prescribed these drugs did so with sensitivity and patience. The latter was of particular importance, as I had known this was coming, and had compiled a two-page list of questions!
Having the support of a kind and competent specialist is only half the battle. My initial thoughts about my daughter being injected with what I considered at the time to be a cancer drug were “over my dead body.” I will openly admit that when I realised the choice was to give her the drugs or watch her go blind, I felt the world around me crash down. I remember calmly dropping the children off at school and driving home screaming and crying, literally wailing at the injustice of the entire situation.
Many of you I’m sure had a much more level headed approach to dealing with your fears, and I can assure you that once I made peace with the decisions I had to make on my daughter’s behalf, the routine of daily pills and weekly injections took on the form of a begrudging schedule.
Numerous sufferers and or their carers will handle these issues with grace and acceptance. Some have religion or a spiritual faith of which is great comfort. Others have a close network of family or friends to whom they can turn. But for many it can be a period of emotional isolation and loneliness.
Feeling that nobody understands can be miserable. Feeling that nobody truly realizes quite how overwhelmed you are can invoke emotions you didn’t know you possessed. Speaking to other adult sufferers and parents helped in that I was regularly told that my sentiments were entirely ‘normal’. That they too experienced anger, anxiety and fear.
The emotional rollercoaster continues, however it’s on a far more subdued level compared to those early days. I still get nervous the day before an appointment and waiting for blood test results. There are also times when I simply feel numb. Olivia has on the whole taken each piece of news and each new drug completely in her stride. Yes she hates Methotrexate and blood tests. When her hair temporarily started to fall out she was justifiably upset. She resents losing her weekends to nausea and tiredness, and the burning sensation in her hands and feet together with the excess hair due to Ciclosporin irritated her beyond belief.
There have been times when I’ve considered taking her and myself to counselling, but she’s refused outright to talk to anyone beyond me, and I think both us have found a way to just rub along. However, I remain a great proponent of counselling and believe it should be offered automatically to everyone at diagnosis, and consistently offered periodically thereafter.
There’s no denying that my perspective on life has changed. Yet I’m not convinced that’s necessarily a bad thing! I would never choose the path we’re on, but when you’ve got no choice what’s a person to do? The first six months following diagnosis were definitely the hardest; and although I never believed that we’d regain a sense of equilibrium it has happened. I’m aware that even now we’ve got a long road ahead of us, but for me accepting that that is the case has been the first step towards keeping my sanity!
If you want to discuss any of these issues please call our Helpline, or contact us at: info@oliviasvision.org