Let’s talk about names

Let’s talk about names

 

People that have known me for over three years will notice I’ve changed my name from Ellen to Ells, it started as simply a nickname but soon developed into my full time name. Don’t get me wrong, I will never legally change it as I’m sure there are times in my life where I will go by Ellen, I also wouldn’t want to out of respect for my parents after all they chose this name for me.

I have always gone by a few names, people may not know that my full name is Ellen Jayne Sivakumaran, I mainly go by Ells as I’ve never really been a fan of Ellen. Majority of my family call me Ellie, although they also speak Tamil and I found out when I was 19 that Ellie (probably not spelt like that) is rat in Tamil, so my family had been calling me rat my entire life without me knowing. My Dad calls me Elsie as he’s always called my sisters and I by nicknames, personally Elsie is my favourite sometimes I wish I’d decided to just go by Elsie but I also like that it’s my Dad’s name for me. I call my Dad papa majority of the time and I’d love to say it’s a really sweet story as to why but it actually started because he has terrible selective hearing and overtime he just started to stop listening to Dad. I do think it suits him as well, Papa gives you the image of big, cuddly and happy guy, and my Dad is certainly a great hugger.

The nickname Ells was started by my sisters when I was younger, and I then changed my social media names to Ells to keep them private from people that only knew my by Ellen. It slowly became habit that people would call me Ells and now I even introduce myself as Ells. There is a big part of me that cringes when people call me Ellen as it almost doesn’t feel like me anymore, not to get too deep, there’s only a select few people that call me it now. It’s not as if I have an emotional connection to being called Ells, but there’s an element of being called Ellen that reminds me of being in school and I feel like a very different person to who I was in school. In some ways it makes sense to me to be called something different as I am different.

Most of what this all boils down to is habit, I am used to being called Ells now just like I am used to being called Ellie by my family and Elsie by my papa. Maybe it seems insignificant to some people but it’s important to me and I think people should respect that I want to be known as Ells. Your name is one of the first things people learn about you and it seems strange how little control you have over it, not saying that we should decide our own names, just that we’re allowed a bit of artistic license with them.

See you next time pals x

What I wish people knew about CFS/ME

What I wish people knew about CFS/ME

I wouldn’t wish this illness on my worst enemy, but sometimes I wish people understood what it was like to suffer with CFS/ME. I thought I would talk about some of the things I’d like people to know.

It’s not a choice

I know it may sound obvious, but I think it’s easy for people to just think I’m being lazy or emotional when actually whatever is happening in my body is for more complicated. Believe me, if I had the choice between spending all day lying down or being able to get through the day without stopping to rest, I know what I’d pick. Even when it’s a joke it still stings if someone calls me lazy, it’s not like I have an option.

The FOMO is gutting

It’s a cliche but honestly the fear of missing out can be a horrible part of this illness. There’s nothing worse than watching your friends be able to do whatever they want whilst you’re so restricted by an unpredictable illness.

I don’t want sympathy

I understand this illness is pretty rubbish, there’s no sugar coating it, there’s nothing fun about being chronically ill. However I’ve never needed people to feel sorry for me, all I would ask is for their support.

Ask me questions

When I first suffered from CFS/ME there was a lot I didn’t understand about the illness, it’s obvious that people who have never heard of it are going to struggle to wrap their heads around it. The best thing is to just ask me any questions you have, or go search online, the better you understand the easier it will be to help.

This is a serious illness

Although it’s not always obvious, this illness has literally changed my life. In the past year I’ve had to completely change my career plan, the way I live, my diet, my social life and keep a positive mindset. It’s not just feeling tired, my body has so many symptoms that I’m still discovering today – a fun new one that has emerged – my jaw clicks and locks like there’s no tomorrow when I’m tired.

I’m very good at hiding my fatigue

It’s a talent I’ve accidentally mastered, I think it’s an automatic response to just put a guard up, pretending I am feeling okay rather than admitted how ill I actually do feel. Don’t get me wrong, there are times I can’t hide the fatigue, however majority of the time I’m feeling a lot worse than I’m showing.

See you next time pals x

How my relationships have changed

How my relationships have changed

I decided to take a little break whilst I settled back into university and in all honesty I’ve been fairly unwell the past couple of weeks. It’s easy to remember how these dips in health affect me in the short term but they really knock me back emotionally for while, I find I’m very sensitive for the next week or so as I’m recovering. I made a very painful mistake in overdoing it on the 26th as I had my group session and university enrolment all in one day which meant I was out of the house from 9:30-5 without any breaks or food, and it’s taken a full week to feel better from it.

I thought I would write a post about how my relationships with people have changed since falling ill as I’ve had a lot of time to think about it recently. Now I am very fortunate majority of people around me are unbelievably supportive, even those who didn’t necessarily understand at first have taken the time to learn about it and try to be as helpful as they can. As with everything, there are a few who blatantly don’t get what it’s like to be chronically ill especially if they only see me at my peaks, which I understand. These tend to be the people that make things a competition, as though life is always harder for them, I find it’s easier to humour them and let them win the battle as it isn’t worth the energy.

I think the biggest change I’ve had to adapt to, is how dependent on everyone I am around me, I’ve always been very independent in looking after myself but with CFS/ME I have to depend on others. I have to ask people to help me with things and trust that they’ll be patient with me. As I’ve mentioned before, my boyfriend and I have I just moved in together, which is a blessing as I truly doubt I’d have been able to look after myself in a student house for another year. Don’t get my wrong, my housemates last year were angels and never failed to cheer me up when I was having a bad day but you don’t want to depend on them to wash your dishes or clothes for you. When I’m poorly Callum is effectively my carer, he will help me do everything whether it’s just fetching me things or helping me get dressed. I’m so fortunate to have someone who can look after me like that.

I’ve really learnt a lot about trust during the past two years, I had to judge who I could trust to understand my illness, especially how unpredictable it is. I’ve been very fortunate throughout my life to have had a handful of friends that I’ve grown up with that I knew I could depend on no matter what, but at university friendships are newer and being so far away from my family in Lincoln it was so important to me to know I have support in Brighton. I am lucky that at my university I have a big group of friends, majority of my course are all friends but even outside of that there are several people I know I could turn to in a time of need. I’m lucky to have formed a sort of dysfunctional family around me that understand when I can’t make social events or have to leave early.

I think it’s so important to surround yourself with positive people at the best of times, but the past year has really showed me how vital it is to have a strong support system around me.

See you next time pals x