So many things going on and then my epilepsy lady asks me how I’m feeling. Standard response is ‘OK a bit crap, tired’ always tired and bored of being tired. So it’s time to change my medication, now anyone who has read this page for any length of time knows how much I hate my medication but following the last seizure, the giant one. I’m taking my medication properly and am scared to change it now, even though I really really want to it’s scary.
Whether it’s true or not there is so much controversy around Keppra, apparently it’s the cheapest of all the anti seizure medication, it’s also the one that has the worst side effects, memory, depression, fatigue, hearing and sight loss (hopefully temporary) dizzy spells, which feel like focal seizures, mood swings. These are just a tiny amount of potential side effects and there are many many more, most of which aren’t recognised by medical professionals but you get a bunch of patients and listen to them sharing the stories of what they suffer, things very quickly add together, it can’t be right that a group of people taking the same medication and suffering the same results doesn’t match. I can’t even pin point what is worst, memory is damn awful and so frustrating that I can remember what happened 20 years ago but ask me what I was talking about yesterday and I have no idea. Tiredness, where I have days where I can literally sleep a WHOLE afternoon (sometimes a fully day) away after I’ve had one busy day. The moods are bloody awful, losing friends because it’s easier to shut away from someone rather than scream at them. My hearing, I don’t know if I’m actually losing my hearing or if it’s a meds thing, I suppose I’ll soon find out. The one I’m not so concerned about is the potential of weight loss it causes, I am very happy with my weight loss and don’t want to gain it again. I will be taking my slimming world a LOT more seriously.
So there we have it my meds are being changed, it’s going to take about 6 months to make the complete change and this time I’m doing it properly and fingers crossed I will be feeling better by the end of it. Seizure free, more awake and less stressed about the silliest of things which never used to worry me and stop bloody crying, honestly it’s ridiculous, I never used to be a crier, now I cry at the andrex advert, I’m like a leaky tap with my tears, even the children laugh at me now!!!
I’m part of an epilepsy group now which has been great, interesting and lovely people who can support each other. We had a fundraising and awareness day last week, everyone wearing purple. I was proud to be part of the group.
I was also part of brain tumour research ‘wear a hat day’, the biggest fundraising and awareness day of the year for the charity, hats were worn with pride all over the country and it was a wonderful thing to be part of.
There are a hundred changes going on in my life right now with work, business and changes and I don’t know if I’m making right decisions or the best decisions in anything and everything, changing my mind almost on a daily basis, worrying that I’m going to mess people around, let people down or help them out. Is it too much for me to take on? If you know the answer to that question please give me a heads up because right now, this morning all I can think of doing is closing my front door and being quiet and letting things just pass by. Oh my goodness I sound miserable and I’m really not, just worried.
Recent Comments