Hi Everyone – this week I thought we would have a bit of fun, so a few weeks ago I asked people on my social media to name a song or song title which reflected their life with chronic illness.
I had some great answers which I have shared below with some of my own. We have a combination of light-hearted picks alongside ones with more meaning. Some ballads, some upbeat and some a little of something in-between.
Remember some of the picks have been influenced by the title of the song, others the meaning behind the song itself.
Songs/Song Titles
Annie Lennox – A Thousand Beautiful Things
Avril Lavigne – Warrior
Bon Jovi – It’s My Life
Chumbawamba – I get knocked down, but I get up again (Tubthumping)
I’ve been toing and froing for a while now about writing this particular blog post, but after last week’s article about losing my blogging mojo (which you can find here) I feel it is important to speak about one of the issues surrounding why this was the case.
As I explained before I lost my blogging motivation for a while due to a number of things coming at me all at once (I am glad to say at this moment in time I have started to get it back!), but one of those triggers for me was the land of social media.
From one chronically ill person to another – you do realise being chronically ill doesn’t make your exempt from being kind right?This is a snapshot of a tweet I posted back in August after having someone on social media be nasty about a piece I had written for something outside of my blog. A piece I wrote a few years ago before my blog started, that had been re-shared by somewhere else, whereby I spoke about my very personal chronic illness journey. Normally something like this wouldn’t bother me, we all have opinions right and we are all entitled to them, but on this particular day I had been to hospital and received a health update which I was trying to digest, jumping on to social media for some gentle relief. It was here I stumbled upon to the words of someone who didn’t like the article I had written, and the comment they left was horrible to say the least. No feedback or opinion of how they saw a situation differently, just pure nastiness. What made this worst was it was from somebody who has chronic illness.
Having someone living with chronic illness be the perpetrator as stupid as this sounds was more hurtful than it coming from an abled bodied person. Why? Because whilst an abled bodied/non-chronically ill person has no idea how it feels to be chronically ill – a chronically ill person does. We don’t live like for like lives even with identical conditions, nevertheless we can sympathise with the rocky roads we all face. It was at this point, I wondered why I was bothering, what was the point? My mental health was worth more, so I took a step back.
It would be easy to sit here and say, oh maybe that person was having a rough day and they were venting at the wrong person, but I had just had a rough day which was made worse by this random person. Because in the same way I don’t know what that person was going through, they didn’t know what I was either and that is the very point. When we choose to engage with posts on social media and want to vent or be short-tempered, we are only thinking about our own bodies and more importantly our own minds completely dismissing the person on the receiving end, and what their minds do as a result.
Being chronically ill doesn’t give us a free pass to be rude, nasty or aggressive to others – and it especially doesn’t give us the right to do it to others in the same boat.
I know a lot of people may read this and think, well don’t write things if you don’t want it criticised, or that I should develop a tougher skin. How about we all be kind instead, it’s not hard.
Social media can be such a positive outlet in the chronic illness community, but it can also be incredibly lonely. When people choose to blog or write articles or share their personal stories, they are giving a bit of themselves to show others in the community they are not alone in their thoughts and feelings which is a very brave thing to do. What people need to also remember is most people who do this use their time and precious energy to help others normally at no cost simply because they care. Do you have to agree with what someone has said? Absolutely not. Can you have a different idea or share something that works for you? Of course. Is there a way of doing this? Yes, it’s called being respectful.
Criticising people when they give tips that haven’t worked personally for you, or discrediting how someone describes how their illness makes them feel, even arguing with how someone has used the wrong terminology is something we should all be mindful of, because we are all different. We as chronically ill people need to understand that most of our experiences are not going to be carbon copies of each other – we are all living with different symptoms at different severities, with different living arrangements, with different families and different priorities.
I can only talk about my own personal experiences. Doesn’t make me right, but it doesn’t make me wrong either – it makes it mine, my body, my story and I am going to discuss it my way. I am not an expert on any of my conditions, nobody is, but I am an expert on myself.
If you don’t like what I or somebody else writes that is absolutely fine, but give us feedback and support, not hate. The point of the chronic illness community is to bring people up, not put them down, and we all have a role to play in making that happen.
Oh, and to the person who felt the need to be so nasty – I hope it went in some way to making you feel better about yourself, because after this post I sure do!
Now that my rant is out the way (phew!), my next blog post we are going back to something a bit more fun. On my social media (the dreaded social media) I asked people to name a song title that represents their life with chronic illness. I plan on sharing these next time with a few of my own – but if you would like to take part feel free to message me on Twitter or on the email in the contact tab.
It’s been a few weeks now since I sat down at the computer and opened up my blog. Not because I have been particularly busy or because anything major has been going on, the reality is I just haven’t wanted to. Sounds a bit to the point I know, but I have always wanted this blog to be about honesty so here is mine.
Maybe I should be a bit more specific I haven’t wanted to, not because I am bored with the blog or anything like that. I have just felt like I physically and mentally couldn’t face creating a post. That my motivation had disappeared.
I think this was a result of a combination of things that seemed to come together at once therefore maybe hitting me harder than if each one had occurred separately and I lost myself for a while. Lost my focus, my vision and what was making me happy.
Firstly, as my last blog explained I went to hospital for my first face-to-face appointment in 18 months give or take – more than that it was my first proper trip out of my home for 18 months too. Of course this had an impact on my body in the days that followed (although thinking back I wonder if this impacted me for longer than I even realised). Secondly, I received another two diagnoses and whilst this hasn’t affected me emotionally, I think there was this internal mental battle of ‘when is this going to end’ to contend with. Thirdly, I had an extreme flare-up of one of my conditions that drained my whole being, physically, mentally, emotionally and in all ways possible. Finally, my writing bits received a barrage of rejections, let’s say ‘inputs’, people taking advantage, all wrapped up in a lot of me giving and not getting anything back, all of which couldn’t have come at a worse time. Reading this back it sounds a little cryptic, but I’m planning on writing a post on this specifically next time.
Having all these things hit me practically at once, I think I got inside my own head and the physical and mental exhaustion I would normally feel anyway extended into emotional exhaustion too. I found myself getting into the mindset of what is the point, why am I bothering? What is any of this really achieving? I had/have all these blogging ideas and things I want to share and write about, but my mind couldn’t find the words, my body couldn’t find the strength to sit and get on with it. It was in this moment I thought that maybe I had lost my ability to express myself, my ability to blog and maybe this was it.
We are a few weeks down the line and the fog in my brain has started to lift and I have started to see more clearly what the real issues are. The issue isn’t blogging because I love this blog and I love the content I have created for it. The issue is me not practising what I preach and not giving myself a break when the inevitable flare-up occurs. I forget how much living with five (plus two more) chronic conditions takes it out of me and even when I am in a flare I battle to carry on, no matter how much my body is saying no. As a result there is only one way I am heading – for an almighty crash!
Now more than ever before this is something I need to work on – especially as we have now entered the period of the year that is always the most difficult for me – Autumn. The change in light has an horrific impact on my health in general including my energy levels and ability to function. Therefore I know flares are coming and I need to learn to balance things sooner rather than later.
But maybe more than anything the issue is me putting myself at the end of the queue when it comes to care. Helping others, endless to-do lists, people’s opinions, not letting people who show no interest in my life down, this blog – all come before me and my health.
So what am I going to do about it?
Take the time to prep for the Autumn/Winter months by revisiting my own blog post here – and take my own advice!
Purchase a new SAD lamp/light to get that much needed light which will help me through the darker/colder months and ultimately my motivation
Cut the crap from my life and all the things that don’t make me truly happy
Get back blogging no matter how small – Blogging is such an important creative outlet for me and the benefits it brings to my mental health and my ability to accept my conditions are immense. They say to beat writers block and motivational setbacks, you just need to write, sounds silly right? But doing this blog post today in this manner has really helped.
Give myself adequate time away from my blog and everything related to it – To truly put myself first, I need to have days/weeks where I completely disengage from my blog and social media. I am actually somebody who is rarely on social media, but even so I try to pop on it at some point everyday – this is really not helpful! Taking a step away on a regular basis will allow me to focus on what really matters.
Go with the flow – A few months ago I talked about having a structure with my blog which consisted of having a week off to focus on other writing bits and pieces. Up until a few weeks ago this was working perfectly, and I would love to say I am going to go back to that, and maybe I will. However at this moment in time whilst I am still trying to get my mojo back I don’t want to put any pressure on myself, instead I want to blog when it feels right for me, however often that may or may not be.
Whilst this blog post may seem a little jumbled, (it is a reflection of my jumbled mind), I hope it has shown the honest side of blogging with chronic illness. There are times when you are so motivated all you want to do is write, write, write, like there isn’t enough space to get your thoughts down. Other times external factors – predominately health related – make you stop and re-evaluate everything you were striving for. It doesn’t mean it’s over, it means you just need to stop and take a breather from time to time.
Me, Myself and Chronic Illness Blog 