So Dom has been diagnosed with epilepsy. I think I mentioned this in my last post, but I feel like I'm only now wrapping my head around this and what it means. Currently, his seizures are not under control. He is on AEDs (anti-epileptic drugs - yes, new diagnosis means new terminology for me to learn!) Anyway, the AED's are not yet working properly and he is still having seizures. Not great for him...or me and my PTSD! (Yes, I did make that appointment with the psychologist..back under control).
Dom seems to be coping with this diagnosis much better than I am. I think he now has a sort of 'roll with the punches' attitude...whereas I am now experiencing the "why us?" phase! I think a lot of that has to do with us now being parents. Dom realises how dwelling on these things has a negative impact on everything else. I'm just finding things to be so much harder than I imagined and so I am questioning why it has to be us that has all this happen to. We have a happy, healthy daughter so we are grateful, I'm grateful. But I still wish I had a healthy husband too. He is suffering from a lot of side effects to the medications, not just the AEDs and they are taking their toll on me. I don't want him to be tired all the time, I want to be able to lean on him when I'm tired. I don't want him to struggle to pick our daughter up or to play with her, I don't want to feel bad when I ask him to do these things because I can see how hard they are for him to do. I just want to be a normal, healthy mummy and daddy that share the workload equally. So why us? Since Dom's stroke in June 2014 I have answered that question with "the universe only dishes out what we can handle"...well universe...I'm close to breaking point!
I don't want Dom to have another seizure..I hate them! But I don't want him suffering with all these side effects either. I want a version of normal that has us as equals again. I wish he could easily switch medications to reduce the amount of side effects, but I feel selfish to ask him to do that when it can increase the chance of him having a seizure.
On the plus side, Dom has had two infusions of vedolizumab for the Ulcerative Colitis. So far so good. No seizures as a result of the infusions and some very positive signs in terms of his Ulcerative Colitis possible going into remission! Fingers crossed we can get him there with these infusions.
The Stroke team at RMH, for us, lead by Dr Yassi, are happy with Dom's recovery so far and have agreed to follow up with him via appointments every three months. This is great! The less appointments the better!
We go back to see the Epilepsy Team on Monday March 7, so I'll post another update then.
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