Hmmmm, so really this week has been partly brilliant and party not so much.
I'll start with the not so much so I can say it quickly, get it over with and then concentrate with the much much better.
So I had another petit mal seizure, this time in front of my grand daughter. Bless her, she knew this happens but this was the first time she saw it, she was frightened and then 2 days later unsurprisingly was frightened to be left alone with me. This made me cry, I absolutely hate the thought that either of my amazing grandchildren would be scared to be with me. They are the two little people that hold me together, make me feel that it's really OK to not be normal and they make me laugh every day and love life. This is the saddest things about this whole stuff that's happened. So that's it, that's the worst part of the bad stuff now it's time to move on to the good stuff.
The petit mal was the fastest recovery I've had, it was the quickest, I knew it was happening because I recognised the deja vu, I lost speech very briefly, I knew I had lost it but my thoughts were still working. Usually it takes me days to get over even a petit mal but this time I was fine about 2 hours later and didn't feel ill or exhausted the next day when I had to back to the hospital for another MRI. I had as always amazing staff to look after me and we laughed together. I was determined not to stay in hospital and I told the nurses that my reason for that was not having enough knickers!
I also saw the biggest chairs I have EVER seen, they are literally enormous, about half the size of my sofa, very comfy though, obviously these have to be provided for the people who can't fit in normal size chairs. I am going to have a Simon Cowell moment and say the thing that everyone is thinking but feel they can't say. It is to the detriment to our NHS budget that we have to have chairs made at a massive expense for people who are too fat to fit in a normal chair. Why should we have to provide this???
The results came back from the MRI on the same day and all is good, no change. It is possible (only a possibility) that scarring from the surgery (and it healing) is one of the 'possible' reasons for the seizures. This gives me hope that once the healing is complete the seizures will stop. This is a hope only but it's one that I am going to cling on to. I am now on 3 drops a day of the CBD a day, one drop in the morning and then 2 in the afternoon. I absolutely have no doubt that it's doing something to help, my thoughts feel clearer, my fatigue isn't so shattering, the fog lift lasts longer. My sleep was never really a problem (except after the surgery with the steroids) but my sleep now is great. I am knocked out within minutes, along with my meditation relaxing music. My brainwork has also been on target this week too, spending time on my Spanish and brain training isn't feeling exhausting. Obviously I am still aware that I can overdo it and I have to be careful. That said I am loving that I can achieve a little bit more every week. I have got another course to start, this time is mindfulness, I feel that this will be the final thing to add to my collection, I feel that once I am up and ready to work again I will have all the tools to achieve what I want to and this is my great hope.
When I got taken into hospital with the petit mal I got to meet a fantastic neuro Dr, she was so lovely but she wants to increase my keppra and gave me some other chemicals meds to take, I have rebelled and am not going to increase the keppra and didn't take the other stuff. Maybe this is a mistake but I honestly know I don't want to take them and I am sticking to that. I have to remind myself that as this is my body and my brain so it is my choice what I put into it. I've started cutting down my anti depressants, I know what I'm doing (because I read how to do it slowly), the Dr says I can only do it with their backing!! bollocks to that I can do this myself, it feels like I've taken control of myself and that feels great. I'm writing this as I'm watch the full monty womens thing and like them I feel like I'm getting my tits out just cos I can :)
I've got today a CBD balm to ease my scar and to see if the little bump on it can go down, it's lovely, smells beautiful. Even if it doesn't work I like it.
I've done a bit more reading about seizures and what to do to reduce them and one of the things as always is diet. There is a lot of talk around about a low carb diet and that having a great effect on reducing seizures. Keto diets and a modified atkins diet seems to be where the most talk is on, I'm not sure I can actually do it though and feel happy and as though it's normal. That almost makes me feel lazy but I am already very careful with my diet and I am happy with it and how I look and feel. So although there seems to be good research and results I think I will pass on that for the time being.
So all in all I think it's been a good week, I am smiling, laughing, doing stuff, feeling braver and moving onwards and upwards. As well as eating my body weight of chocolate and cake because it's Easter! Oh well back to the diet :)
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