I’ve been very quiet on the blog front for the last month and there is a very simple reason… it’s been a pig of a month. My focus has been on survival…. and I’ve been struggling with that at times. After having gone for very long periods with excellent seizure control I have had 3 seizures in a month, and pretty much every day having periods of uncontrollable twitching, a lot of confusion, and the sofa has become a very good friend. I wasn’t exaggerating when I said it’s been a pig of a month.
I’m still none the wiser as to why my brain has started to seriously play up again, which is frustrating beyond explanation. I have seen a specialist who has sent me for blood tests, referred for an MRI to see if there is a practical/physical reason, and is talking about having to put me on a new medication – after I’d spent a very long time getting down to just the one drug in the first place.
I think frustration is the biggest emotion playing it’s part at the moment, for a number of reasons.
- As I’ve already said, I don’t understand why it’s happening
- I don’t feel like myself. I’ve become anxious about doing anything on my own, going anywhere, I’m confused a lot, I don’t feel I’m able to do anything properly.
- There is nothing that anyone can do to help me… even though so many have asked
- I know it’s not like a virus…. rest isn’t going to make it better. I am needing to rest because I am constantly wiped out, but that’s not going to stop the twitching and confusion. The only thing that is going to make it any better is new medication, and that is a process, and I have no idea when that is going to get started, and then no idea if it will work, what the side effects will be, how long it will take to build up the dose
So what has this got to do with an army? It’s simple… I realised yesterday that I am surrounded by an army of amazing support. They are doing various things, there are those who I know are simply praying for me (although it is so much more than simple); those doing the practical things like giving me lifts; the messages to check how I am or to tell me something to cheer me up; those at work being strict with me when there may be times when I’m pushing myself too much; then there are the truly amazing ones who have taken it upon themselves to search for the small victories for me when I seem unable to do it for myself; those who are crying alongside me so that I know I’m not the only one who is frustrated by the situation; and those who hold me either through a hug or actually feels like they are carrying me or protecting me through a storm.
I truly am blessed. In one of my excessively long SMS conversations with E yesterday I said ‘I’m surrounded by an army of amazing women aren’t I?’ To which she responded ‘it takes one to know one’! This then played on my mind – in a good way – obviously at the moment I do not feel like I am very strong at all, in fact I feel ridiculously weak useless and helpless, but I guess when I am more ‘me’ I do try to encourage others and help out when I can. I guess it truly is in those tough times, when you see the result of the impact that you have.
All I know is that I may not feel like me at the moment, but as friends keep reminding me, this is only part of the journey and I am well and truly not alone.