I haven’t written anything for a while and yet so much has been happening, and I guess that is the point of this blog. It’s been a very busy few weeks, I have returned to work, Benji has started nursery and we finally got a referral to the paediatric urologist for Riley. Meanwhile I have been continuing the running training for the marathon next year and feeling the pressure of needing to begin to fundraise.
I would love to say that I have coped with all this fantastically well, and I hope that to the outside world it seems I have, but on the inside I have been really struggling and at one point was right on the edge so here’s the honest truth condensed down to one blog.
Benji’s growing independence
Benji is a star, so laid back, so easy and I feel totally blessed to have him. He has started at nursery which I have to say I was really nervous about as it took Riley so long to settle and while I can’t say he loves it, I feel like he has accepted it and so I don’t feel too guilty. He has also just started to crawl and is into everything!
Yesterday I noticed four new teeth seem to have sprouted from nowhere and he hasn’t really made a fuss. We’ve had the starting nursery sickness to contend with as well, lots of new bugs so last week he had a temperature and last night I was clearing up sick! But all in all he is doing really well and growing up so fast!
Riley on the road to school
Riley starts school in a matter of weeks, she is excited and can’t wait. She has grown up so much and while she has the odd difficult moment she is a joy to spend time with, she cares so much about others and is funny and her character is really starting to shine through. That’s why the next blog I am going to write is going to be a tough one to write, there are a few little things which she has to deal with that I just wonder, ‘are they linked to the lamotrigine I took in pregnancy?’ but that is a long story and will be the basis of my next blog.
Work and run
So my seizures remain controlled with the Keppra which to me is a miracle, no focal seizures for coming 20 months, no tonic-clonics for 28 months! I have my driving licence back, my confidence is growing with the kids and I feel great. I am now back at work, at a desk all day, and I find that quite hard but it has to be done. I am also doing great on my marathon training, now running 5k well within 30 minutes 2 times a week with longer runs as well, so I am now up to running 15k. With my first half marathon in 5 weeks’ time I feel like I have achieved a lot in the last few months and overcome a massive hurdle.
So all this change has come at a cost, Keppra has been the drug to control my seizures, I feel so blessed for that, but it hasn’t been plain sailing that’s for sure. I can’t say whether it is the Keppra itself or the fact that for 10 years I was on lamotrigine, a mood stabiliser and maybe I just got used to that but lets face it all these drugs change the way our brains work, they control the activity going on in there.
There is no getting away from the fact that since I made the change from Lamotrigine to Keppra I have had to work a lot harder at finding strategies to regulate my mood. When times get tough like that have in the past few weeks I start to feel myself falling apart.
So I know that I have been more snappy towards Rich and I am so glad that he puts up with me, I can’t thank him enough for all the support he give me. I have found that running really helps me to regulate my mood, it gives me some me time away from the kids and allows me to reset. But the biggest challenge over the last month has been my anxiety.
I started waking in the night having anxiety attacks, with my heart racing and pounding in my head. I used to get this when I was first diagnosed with epilepsy and all I can say is it makes going to bed really scary. So after three nights of this happening I started to feel the anxiety growing in the day, then one day I thought it was going to happen while I was out at the park dealing with the kids, I panicked and started to leave the situation and luckily calmed down.
But that episode made me realise everything had got too much for me and I needed a coping strategy. So cue mindfulness, I had let meditation slip over the last few months. As things get busy finding the time to actually meditate seems to fall to the bottom of the pile. But after these anxiety attacks I started prioritising it before bed, and wow I can’t explain how quickly I felt more in control.
Since starting 30 minutes of meditation each day I haven’t had any more anxiety attacks, day or night and just feel able to cope again. I have also found a great running meditation which kills two birds with one stone! Yes it another thing which takes up my time, but it really does improve my quality of life.
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