Deanna's perspective: How she got ill

This post is part of the 'ME from another perspective' series which I am running to contribute towards ME awareness this year.

Deanna has written two posts for this series. The first tells the story of how she got ill, and explains how she has come to reach a place of acceptance. I'm so pleased that Deanna has chosen to write about the emotional affect that ME has had on her. I can relate to the intense feelings of loss and frustration which she has spoken about here.

I was 14 years old when my family and I took the train down to London, we were going to see my older brother at his work in a very swish bar. Getting there was exciting, I got a hazelnut latte- it was absolutely disgusting, but I sat in Kings Cross determinedly sipping it feeling so grown up.

I remember nagging my mum about wanting to go into a M.A.C store, as I’d never been in one before and I wanted to get an early Christmas present.

Walking around London was exhausting, and I complained of pain in my hips and feet, it felt like we’d been walking for far longer than we had, and all the lights and noises and people were very overwhelming.

After we came back from London, we all started getting ill. Not just colds, but serious cases of the flu.

Christmas had been cancelled. GASP.

When we did have our ‘late Christmas’ I was still too ill to sit up, and was hibernating in my mum’s bed, I couldn't eat any Christmas dinner, and my arms were too weak to open any presents.

I don’t remember much from this time, as I’m pretty sure I just slept throughout each day.

In the new year, we had mocks, Science mocks specifically, and I missed one, and people came up to me saying I’d have to retake them all again. I shrugged it off as if it was the most insignificant thing.

My illness was still in the 'early stages’ still very mild, but getting worse every day.

On the 5th of January it was my 15th birthday, I went to the cinema and a restaurant with some of my friends- again I don’t remember much, except how much my back hurt by the end of the evening.

I started missing more and more school, my attendance wasn’t exactly spotless to begin with, but now I had missed 3 or 4 straight weeks and we were being called in for meetings.

I started googling my symptoms- I learned what the word fatigue meant! And stumbled across 'Chronic Fatigue Syndrome’/M.E. I did a lot of researching and discovered how all my symptoms matched up with M.E, and that I was already too poorly to go back to mainstream school.

I think at first I was diagnosed with Post Viral Fatigue Syndrome, which is supposed to be a short term thing… but when it was like 6 months of the same symptoms they finally diagnosed me with M.E. I honestly cannot remember how long it all took, I was in and out of hospital for lots of specific tests, and seeing lots of different paediatric doctors.

I then got referred to a hospital school where I went in for a few half days a week, and managed to get some GCSEs. Not as many as I was hoping for but, I had to learn to re-evaulate and be proud of my achievements. Not matter how small they seemed.

That school was the best. I miss it so much.

It was great being surrounded by people who didn’t judge you for needing breaks, and taking mid-lesson naps!

I went in to collect my GCSE results, on my own, my mum waiting in the car. Saw old friends and they smiled at me, but it was different, I definitely didn’t feel connected to that school anymore, it was just a building with people in.

So I passed my exams and everyone- including myself, was shocked! But I was so happy, getting the grades I needed to go to musical theatre school.

Long story short, that didn’t happen, on the taster day I was swaying on the spot and I had to sit out of most of it. I felt like I was underwater, and stuck in cement, it was impossible. I barely spoke two words on the drive home, not because I was sad, realising that I couldn’t do it. But from pure exhaustion. No energy. All gone.

After my ‘dream’ plans fell through, I looked at regular college, doing art.

I loved art, and the course was great, a small class, a really cool tutor, the building was snazzy, and it just felt like a new start, and I could finally be doing something that made me happy.

But- M.E doesn’t really give a crap! I managed to pass out on the first day! Going up the 3 flights of stairs up to the classroom, was like climbing Everest. When I got to the top I had to sit down on the floor and wait until the tutor came to unlock the door. After a few days of college, I had gotten to the point of bumping into things- in clear view, and not hearing when someone asked if I was okay.

I felt like screaming. It was so unfair! I wanted this so badly! And it’s not like it was hard, it was only a few days a week! But with M.E it was impossible. I was really pushing myself to do this, but the more I pushed, the worse I got.

I felt hopeless, and angry, and jealous that everyone else was capable and just doing what they wanted to be doing, and I wasn’t. I felt like I had wasted everyone’s time, and after a few weeks of not attending, they took me off the course.

So! I sulked for a while, bitterly watching everyone continue to live busy lives with minimal effort.

But I changed my mindset. I stopped worrying about timing and ‘when I get better', I’m focusing more on what I’m able to do in that moment. And taking it each day at a time!

Since then, I’ve been at home. I distracted myself with the internet. I was okay. As long as I had access to wifi, I was okay.

I got a kitten Luna, rather on a whim. But she made me so happy. She turned out to be deaf, so she’s ‘broken’ like me. Hahah.

When I started my M.E' instagram, it felt like a brand new start. I’d found a new hobby, that I could manage from the comfort of my own bed!

It was a place to vent/ask questions/ and share about my own experiences with M.E. I was finally accepting the fact that I was ill, instead of pretending that I wasn’t. I embraced it, and I think that helped enormously with my mental state. It doesn’t get me so down as it did before. Because I can always talk to other people with the same problems, and they care, they want to hear about it, they want you to feel better.

As I get worse physically, I get better mentally, the spoonie community has helped me realise that no matter how hard things get, there’s always something to smile about, there’s always something good to take your mind off it. There is always someone who is willing to listen and give advice.

I sometimes cringe at how sappy I come across, the sarcastic part of me, or the old part of me was a lot less understanding, and I keep trying to remind myself to not want to be the old me. I was only 14 when everything stopped. And in that time, I have grown so much as a person, discovered so many things that I wouldn’t have, had I not gotten ill.

So no matter how hard it is to watch everyone you’ve grown up with continuing to live their busy lives, going to uni, getting jobs, getting cars, moving out, moving in, getting engaged! having babies!

I need to apply a different rule to myself.

I am not there yet, because I have been held back. It’s not my fault, I didn’t ask to get ill.

Admittedly, I am only 18, so I’m not in that much of a rush, I think just my facebook friends are all living life in fast forward!

Still, after 4 years- feels like a lifetime, I still have wavering moments where it’s all too much. You feel sorry for yourself, and angry at your body for doing this to you. But I think it’s okay, to let those feelings run their course, as long as it doesn’t bog you down; emotions are healthy. And recognising that ‘bad’ emotions are just as important as ‘good’ ones when dealing with a chronic illness.

So that was my ‘how I got ill story’! I wrote it over a few different times, so if it sounds a bit jumbled then I’m sorry! I couldn’t do it all in one go!

Thanks so much to Deanna for writing this blog post, you can find her online at @chronicallydea on Instagram, and on her blog which is chronicallydea.blogspot.com!