#RareDiseaseDay February 28th (not spon) 

Before you click off, don’t worry this isn’t a sponsored post or a “pity party” this is just the truthfulness, completely unedited, and non formatted writings of someone with a Chronic Ilness that’s taking its toll.


Medical wise these past few months have been testing to say the least, not just for me, but for close members of my family as well, (which I won’t go into as it’s not my story to tell) but after nearly 6 months of steroid treatment I looked like I would be coming into complete remission any day now… and then it all went to shit. 

When I had my CK levels checked about 6 months ago they where nearly 3,000 (I was told a healthy level for me would be bellow 200) so as you can imagine I was fucking petrified… but after pumping my body full of medications they had started to rapidly drop and I was at a more “acceptable” level at around 1,000, where they continued to kind of flat line if you will and stay there, but recently I noticed I was loosing strength in my fingers and my legs were feeling weaker, and guess what? Yup those fuckers are on the rise again *dramatic eyeroll* so most probably sometime soon, I’m going too have to up all my medication again! YAY!! Not like I take enough things already.


I’ve also been put on another medication as well to counteract the Dermatomyositis skin issue, which my god, mixed with all the other tablets is just making my tired all time, mixed with insomnia, like seriously how does that one work? I’m honestly confused, how can you feel exhausted and then not be able to sleep, it makes no sense! (Hence writing this at 2:50am Tuesday morning) but I’m tired more so than before, and everyday tasks just seem ten times more strenuous, oh did I also mention I cannot drink AT ALL whilst taking these, not that I’m a drinker anyway, but my 23rd birthday is in the next couple of months and it would of been nice to of just had a couple, but no, no birthday drink for Nicole! So yeah that sucks.

Anything else on the shit list?


Oh I had a surgical muscle biopsy last year and this maybe TMI for some people, but I have quite a deep scar on my left thigh, kinda causes a dip look to my leg, anyway I digress, somehow I’ve managed to tear either the scar tissue or part of the muscle underneath, so as you can imagine I’m in a deep amount of discomfort at the moment, and I’m not even allowed to take ibuprofen to bring down the swelling!

Mental Health.

This has been weird… I’ve felt nothing, like honestly nothing. Hardly any emotions, and if I do, it’s a very fleeting feeling, it’s like someone’s turned them off, now I don’t know if it’s due to all the meds I’m on, or if with everything recently I’ve just turned into a heartless bitch, honestly it could be either, I’m not sure, but it’s damn weird. I’m just not worrying about things that I would of used too, loosing friendships haven’t bothered me in the slightest, arguments haven’t fazed me, having love expressed towards me and I feel nothing in return even though I know I used to, it’s all kinds of fucked up, but don’t worry my morals are still fully intact, a contradiction in itself I know, but something inside me still regards those! Basically in short… I’m a bit of a head case at the moment.


Ah chronic illness you little bastard you, the reason why I don’t know what il be doing tomorrow, next week, a month, a year, 5 years or 10 years time! There is so much uncertainty, trying to just live one day at a time is honestly exhausting, without the added strain and stress of people looking down on you and judging your every move. Do you know if I hear any of these following questions/statements one more time I may go insane. (But here are the answered anyway)

You’re 22 you should be establishing a career for yourself now.

I’m trying to, it’s hard, I’m actually trying to become a writer and have spent nearly completed a children’s novel that I wish to get published, I know it’s probably a pipe dream, but it’s better than nothing, I have struggled so bad to find a “normal” job because at times my condition affects me so much I can’t be doing jobs like retail, I can’t stand for hours on end, and it’s so hard to find office work as I haven’t done any in years therefore I would kind of have to go in at entry level, and they’re few and far between where I live! 

Why are you staying home every weekend?

Money, I don’t have a steady income, I can’t afford to go out and get drunk at the weekends, and too be honest I don’t really want to because it seriously aggravates my condition, and I always end the night feeling like shit and paying extortionate taxi prices, so there that’s your reason! 

Why are you single?

I do not feel confident! The steroids have made me gain weight, not loads I was roughly 112lbs and I’ve jumped up to 136 resulting in me feeling like crap, and the associated skin condition with Dermatomyositis makes me feel gross, as it looks horrible, I know beauty is only skin deep, but if you’re not confident on the outside you can’t be inside you know? Plus I’ve watched too many Forensic Files and the whole blind date thing makes me feel on edge. Plus as you can probably tell I don’t have many friends, I have like 2 which too be honest I barely see and when I do see them we just hang out with the same people, and there is no attraction to any of them. I honestly think I will be single until I’m like 30 and I’m just going to have to get used to it. Oh did I also mention my face currently resembles a blowfish? Attractive right! 

Why do you still live with your parents?
Because it’s the right fucking price, where I live renting prices are rediculous! You have no hope in hell trying to buy your own property that’s for sure! 

You should be doing more!

Have my condition, no actually just have a couple of my conditions side affects for a few hours and see how much you want to do! 

Why can’t you do this?

Now this could be relating to many things, physical strength? There’s a lack of that. Mental strength? That’s there sometimes if the meds are being nice to me that day. Willingness? Sometimes I just know I won’t be able to endure it, and the best thing I’ve learned on this journey so far is it’s okay to say no and not feel guilty about it, you know better than anyone what you can and can’t do and don’t let others dictate that for you.

Stop being boring.

Hey I wasn’t boring yesterday, I was out and got loads done! It honestly depends what day you catch me on! Some days I will go out and do stuff other times I won’t, and I’d rather sit on my ass infront of the TV and binge watch Netflix! And guess what… it’s not boring too me! 

Want to make plans?

I hate this question with a passion, no I do not want to make plans, what to know why? Because it’s more than likely I won’t stick to it, I can’t tell how my body will be one day to the next and that is the ruler of my life! No commitment means no shitty feeling when I inevitably cancel because I feel unwell or am tired, sorry just the way it has to be, you’re best off asking me on the day, then more than likely if I’m up for it I will agree, but I can’t make plans for two weeks time, because I just don’t know if I’m okay! 

Why do you always cancel?

Ah you actually managed to get me to agree to something… you must of pestered the hell out of me. Sorry, no I don’t feel guilty, I made it very clear why I don’t make plans, I feel like shit, I’m not coming, end of, I know my body, I know if I push myself too much one day I end up paying for it, a few weeks ago I went up to London for some acting work, I left home at 6:30am got home at 8pm, (probably doesn’t sound long to you but that’s like the equivalent of a healty person doing a 18 hour shift) (I’m guessing could be a complete load of bollocks) I was fucked for the rest of the week, the amount of walking, the stress of trying to navigate the tube and train systems and the nervousness and adrenaline from the acting work completely tired me out, I spent the rest of the week pretty much on the sofa watching TV and sleeping like 17 hours a day I was done in! 

I hardly ever see you! 

Right… by nature I’m a hermit, I wasn’t one to go out and socialise when I was a teenager and I’m not now, I find it difficult to be around people, and I have very different tastes in things to a lot of people, since I was four years old I wanted to be an actress, that’s like my one true calling if you will, I love history especially the 17,000-19,000 and Ancient Greece and Egypt, I love alternative comedy, such as The Mighty Boosh, and everything I watch is old such as Only Fools and Horses, I love books and will read pretty much anything, and I’m used to being on my own and am happy that way, I never was a very social person and I don’t think I ever will be, I do try but social anxieties do hold me back, along with having such a small window of time that I can actually physically do stuff, it’s frustrating to me as well. 

Once again my post took a different way from which I started writing it, but I’m okay with that, as I’ve said many a times they are just “inner rambling of a moron”

Do you suffer from any chronic ilness’s or know anyone who does? Would love to hear how you cope and if you have any tips to make the day just seem a little better!

Don’t forget February 28th is rare disease day, so please help raise awareness, and so much more funding is needed!

Nicole xxxx

(Not sponsored, I do not own any rights to any images used)


So as you can surely tell this post went in a completely weird direction hence the edit now, all I wanted to further input is that even though they are called rare disease’s they actually aren’t that rare anymore, thousands of people are battling these all around the world right now, and no one deserves to feel alone, and there is so much more that can be done, just by simply raising awareness, and that is exactly what will be happening on the 28th, so if you know anyone who has a rare disease or if you have one yourself please share this post and lets get a discussion going on about “what we can do” “useful tips” “support” and even “life stories” , together we can build a community to help one an other, raise awareness and funds to hopefully find a cure to many of these. thanks. xx



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