I was diagnosed with TSC at the age of 12. I’ve had it since birth, but it took until then for me to be diagnosed.
I really struggle with numbers and simple maths especially division and multiplication. I also suffer from social anxiety and find it difficult to adjust in certain situations.
I’ve never had any seizures. But I do have lesions on my skin, especially on my forehead, on my legs and arms. They’re not very noticeable and I don’t get people remarking about them. But I know they are there. I also have lesions on my brain – non-cancerous tubours – and these are what cause me to have problems with numbers and to feel anxious.
I’ve also recently found out that I have nodules on both of my kidneys although at the moment these are not presenting me with any problems and I have been told that there is medication available to treat them if they do start to become an issue for me.
And I have also been told that there is a cream available which may be able to bring down the lesions on my skin, so that’s positive too.
Due to having TSC I am not in a position to work and so I don’t really have a set daily routine. This has, at times, caused me to have problems with sleeping which has been made worse by the fact that I am a big worrier and do, quite often, get myself very worked up about things.
Often I will go to bed, feeling tired, but still not be able to drop off to sleep for an hour or two. And this can be quite frustrating at times. When I am like that I try to switch off by reading a book or watching TV. And that works sometimes.
But a little while ago I realised that I was getting a bit older – I am 29 now – and it was time to start looking after myself a little better. So I decided that I would try to live a healthier lifestyle to help myself as much as I could.
I enjoy watching cookery programmes and reading about new recipes in magazines. So instead of eating a poor diet with lots of chips and a limited range of foods, and often eating the same things day after day, I’ve started to try new things for myself. I now eat chicken, lots of rice and lots of fruit and vegetables. I am sure this is helping me to sleep better because I am getting much more fibre in my diet.
I also drink fruit teas, especially lemon and ginger and herbal teas, with camomile tea before I go to bed as I find that that helps me to unwind. I’ll also pop some lavender oil on my pillow as that helps me to sleep too. Plus I find having a night light on helps me to settle more easily as I don’t like to sleep in total darkness.
The other big change I have made is that I try to get out in the fresh air for a walk most days. This helps me so much, and especially on those days when I maybe have not slept so well the night before. So it’s a combination of a better diet and more exercise which is helping me to feel better about myself, feel less worried and sleep better.
The other thing that helps me is singing. I’ve love to sing and I have always been interested in music and I sing in a local choir as well as at home on my own. It’s one of the few things that I feel I can do really well. And when I find myself getting stressed then I will put some music on as it just takes me out of myself, calms me down and helps me to forget my problems, even just for a while.
It’s been a slow process but these are changes that I have made by myself and for myself. And I think I am getting there.
Jackie’s top tips for a better night’s sleep: