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:
- Drinking herbal and fruit teas, especially camomile tea
- Putting lavender oil on my pillows
- Using a nightlight (I don’t like the dark)
- Cutting down on chips and eating more rice instead, and
eating much more fruit and veg every day - Choosing healthier food options and trying out new
recipes - Walking in the fresh air every day
- Winding down with a book or some TV before bed with my
two cats Belle and Ginni - Singing in a choir, and on my own, as often as possible
as this is something I really enjoy and am good at plus it takes me out of
myself and makes me forget all my problems