Brain damage. Two words I'd never wanted to hear.
They were said to me by my consultant on Monday while I was sitting in his room. The problems I have with my vision have been caused by damage from seizures or one of the many knocks to the head I have received as a result of a seizure.
It's taken me a while to get my head around it to be honest. Usually I'm quite good at taking on board rubbish news and for a while I took this on ok. My youngest sister and my closest friend were visiting for the weekend and came with me to my appointment so we just discussed it for a while afterwards. I thought I was ok with it and after leaving the hospital we went for a calorific meal to take my mind off it (typical me) then just hung out during the afternoon chatting and trying to get over our hectic weekend. Then they went back home on the train and pretty soon after they had gone it all hit me like a punch in the face. Thankfully it's not degenerative, it will only get worse if a knock on the head irritates it or continuing seizures damage the area more. Another waiting game, I don't use the word often but I hate the waiting. I'd rather just know any facts outright be they positive or negative.
I'm seeing my consultant again in June after I have a driving field test to see if I can ever drive again. Oddly this scares me more than anything at the moment, but that might just be because I'm actively refusing to think to deep into matters at the moment. I don't think I can face reality just yet so I'm distracting myself with work, watching crappy TV, tidying... ANYTHING.
I've been referred for another MRI as well but who knows when that will happen. I guess it's to see if any seizures between know and then are causing further visible damage.
Anyway I'll switch my smile back on and keep trudging through what feels like treacle in an effort to carry on as usual. Bare with me if I'm a little slow on blogging, I have so many positive things to write about but feel a little deflated at the moment. But hey, I might find it another useful distraction!
Oh Jade, I'm so sorry. I know how important your photography is and can totally sympathise with the fear of losing more of your vision. I'll be thinking positive for you and I hope you get the answers you need soon xxx
ReplyDeleteDear Jade. I'm so sorry to read of this latest development - and not a little angry. Why is Epilepsy not seen as an illness as serious as cancer or a brain tumour? Can you imagine someone going to see a oncologist(having waited for months) to be told, "You have cancer, but we don't know which one, but you had better try these tablets to see if they work?" And then when they don't work you wait several more months for an appointment only to be given more tablets which don't work and so on. And all the time you continue to be ill, feel exhausted and awful, get injured andcan't drive or work easily.Why do people with Epilepsy accept this? It's not on! Rant over! Kate
ReplyDeleteTOTALLY agree :( xx
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