M.E Week 2012: A Chat with Jaz...

My lovely friend Jaz, from Jasmine's Crafts and Being Jaz has kindly agreed to an interview, so you can get a glimpse into the life of someone with M.E.

Could you give us a little summary of your M.E story so far?

"I fell ill just after starting secondary school, so about two weeks into year seven. I was 11 years old, and I caught a nasty throat infection which turned out to be suspected glandular fever. I never recovered from it, and got progressively worse. I went from being sporty and active, running everywhere, swimming every weekend, to feeling so shattered and in so much pain I could hardly stand up. I was diagnosed with severe M.E in January 2009. Health has varied over the years, but it's still severe and there isn't an aspect of my life it doesn't effect."

What is a typical day like for you?

"I wake up and if I can move (sometimes I'm just so tired I can't move) I'll eat breakfast and go to school online, I have a gap mid day when I'll stay in bed and listen to an audio book, I'll finish school and the rest of the day will be spent doing as little as possible (most spent lying down in bed). In the evenings I usually listen to a book - M.E makes actually reading a book very difficult - and try and get some sleep, which can be difficult because pain gets really bad in the evenings."

The theme for this years M.E Week is Education. I know you do brilliantly with school, how do you cope?

"I'm a very nerdy person so making sure I get my GCSE's has always been important to me. I study with an online school for the most part, which means whilst there's structure it's flexible enough so that if I miss a lesson there are ways I can catch up. I also do an hour a week at the local tutoring centre towards an Art GCSE and I have an English tutor so that I can take English Lit and Language. It's a bit complicated time wise, making sure tutoring doesn't clash with online lessons and such, and it's certainly not the 'normal' way of studying but it works for me. I should end up with 5-6 GCSEs, including three core subjects."

What keeps you going when you're going through a rough time? 

"My best friend and my family because they always know how to help me."

How did you get started knitting, and what is your favourite thing about the craft?

"My grandma taught me to knit when I was about 10, but I didn't really take much notice of skill until after I was diagnosed when I picked up my knitting needles and re-learnt it ll again myself."

Jasmine's Ocean Breez

Jasmine's Fools for Love doll

What things has your illness taught you over the past couple of years? 

"My illness has taught me how to be patient and how to say no when people demand too much on my time or and energy. I learnt to prioritise. I learnt how to look after my energy (even if I'm not good at it) and an appreciation for my health in general, because it could be worse. I learnt how to ignore people's expectations and labels on me, because people seem to think that because I'm ill I just sit around moping - I don't. I learnt how to stand up for myself against people who thing M.E isn't real."

If you could give just one piece of advise to someone with M.E or any chronic illness for that matter, what would it be?

"Don't ever loose hope."

Despite the severity of her illness, Jaz is always cheerful and positive. She's accepted her limitations, and worked her life and goals around them. Which I find very admirable, and something that we could all learn from.

M.E isn't the end of your life. Yes, it is a terrible, terrible illness that is not treated with as much seriousness as it requires, and it takes a way a lot of things you hold dear (like being sporty) but is not the end. Jaz and I both learnt to knit when we were diagnosed, so if you can, why not try something new? It doesn't have to require much energy or brain power. You could sow some windowsill plants and keep them in your bedroom. If you're well enough, try a new craft like knitting/crochet, card or jewellery making. The main thing is that you have fun! And as Jaz said, "Don't ever loose hope."