Sometimes it gets hard…

Aloha readers!

I’d like to start this weeks blog post just by thanking you all for the amazing response and feedback on last weeks post, it means so much to me. It was my twentieth post believe it or not and I had the most reads since starting my blog which made me beam with joy!

Another thing, before I explain the title, attached at the bottom of this post will be a video that I’ve started making every month, inspired by one of my closest friends Sarah. It’s a video compiled of short clips of my favourite parts of the month and I’d love it if you could give it a watch.

The past week and a half have been a little bit of a struggle for me and I’ll tell you why. I’ve held back from writing this on my blog because it’s something I didn’t really want to be linked to my blog. Because if you’re not a close friend or relative of mine you wouldn’t know, and my blog was my ‘normal student’ bubble. When the truth is, I’m really not.

“Oh my God, she thinks she’s so special and individual compared to everyone else”. No, I don’t, I really really don’t because I know I’m not like everyone else. In fact I’m one of 3 in a million. Why? Because 5 years ago, in the May of 2012, I was diagnosed with an extremely rare muscle condition that affects only 3 in every million children in the UK a year. It’s called Juvenile Dermatomyositis (JDM) and it’s an auto-immune disease. Auto-immune diseases are the type that are triggered by your own immune system, which means that your body essentially attacks itself, in my case, my body eats my muscles for dinner. Luckily after 5 years of past and ongoing treatment my JDM is no longer active. This means that my body isn’t currently eating my muscles.

Now, this doesn’t mean that I don’t still suffer with symptoms. When I was at my worst back in 2012 my body was in so much pain and I was so tired all the time that I was in a critical condition and suffered severely with exhaustion. I’ve never experienced anything like it, and not to sound arrogant, but the likelihood is a large percentage of you never will.

Sometimes living with an invisible illness is hard, of course it is! Because the bottom line is, if you don’t have to deal with it you won’t ever understand that when I say I’m tired, very rarely am I the ‘normal’ amount of tired, when I say I’m aching, my body isn’t aching the ‘normal’ amount. It feels like when you lay down after a long, busy day and you feel your muscles finally relax. You feel them sink into your bed or sofa and drift away, mine sink into my bed usually and continue to sink until it’s painful to lie down. When I say I’m feeling ill, I’m not just the ‘normal’ amount of feeling ill because if I’m brutally honest, I don’t know what fighting fit feels like anymore. It’s one thing after another and there is always something going on inside me. Well that’s what it feels like anyway.

Sometimes it’s hard, when the world can’t see that, it’s hard.

Friend: “Why weren’t you at the pub last night?”/ “Why aren’t you coming to the pub tonight?”.

Me: “I’m so tired.”

Friend: “Oh come on just come for one!”.

Me: “Nah I’m really okay, I just want to go home and go to bed.”

Friend: “Okayyyy…”.

What I really want to say most of the time, and I have started to recently is being brutally honest, because 1. honesty is the best policy and 2. people aren’t going to understand anyway so I might as well. What I want to say most of the time is “I can’t think of anything better than going home, putting the kettle on, having a nice long shower, getting into bed, taking two ibuprofen and falling to sleep!”. Because that is the honest truth. If I’m going to be up from 7:30, taking an hour to travel to uni to get there for 10 and being there until 6pm, I just want to go home and I hope sometimes people understand that.

To explain the title, which so far I haven’t done very well, this past week and a half have been hard. I receive medication through an IV drip every eight weeks and I’ve had such a busy eight weeks that I’ve constantly been aching or in pain or so tired. It’s hard because everything that’s making me feel this way is invisible.

I’ve made this sound like every day is so incredibly difficult to me, it’s not. Because I have days where I feel ‘normal’ to my standards and I can keep up with everyone. Today I was dosed up with my eight weekly medication and I’m excited to be back on top form for the next eight weeks!

Just a reminder of the video I made this month that I thoroughly enjoyed making so please go and give it some time and attention. I hope you’ve all enjoyed your pancake day and made some super tasty ones (I know I did). Feel free to drop me a message or comment below any thoughts, they’re hugely welcomed and extremely appreciated as usual, and please share around if you’ve enjoyed reading the past few posts.

Speak to you soon.

Lols xx


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