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Hemp, miracle skin product!

Just a quick update post, and two products I have been loving!!

So I haven’t been this happy in a long time, I’ve had great news, last week I had a joint appointment with my Dermatologist & Rheumatologist and I can finally say in 5 months time I will be officially off of steroids! HELL YEAH!!!! You have no idea how excited I am about this, it’s been a long time coming, plus that means I can get my pre-steroid body back, having had my weight fluctuate like crazy over the past few months (from jumping up & down doses), oh it’s going to be so good, however I am certainly not looking forward to the withdrawal symptoms, but never mind.

My dermatologist thinks that also in this time my skin will completely clear up, which will be a god send as it has been something that has been causing me lots of problems, now don’t get me wrong it has already cleared up tremendously and what remains most now is scarring, but that should be gone soon, I’ve been using two different hemp products and I would recommend these as they are amazing!

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 Hemp Soap On A Rope £6.50

 

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Amir Hemp Seed Oil Moisturizer, I bought this in TKMAXX for around £7 but you can order it from Amazon US for around $40 which I will be doing when mine runs out because it is that good! 

Those two products are so worth the money, highly recommend 5*

So that’s it just a quick update post, what skin products would you recommend?

An Average Day

My mind is always willing, my body not so much.

This is my daily battle, there’s so much I want to do with my days, but what do I actually do?  An average day for me is this…

-Struggle to start wake up and start my day, body is screaming for more sleep.

-Hunger, but body refuses food

-Get a little work done, i.e respond to emails, work on book.

-Think of all the things I need to do.

-End up wasting the day in a tired state, usually end up watching crappy day time TV

-Spend evenings in reading books.

This is pretty much my life 24/7 no change at the weekend either, not what you would expect from a 22 year old right?

Am I just stuck in a never ending rut? Or am I spending my days just in a dreamworld longing for more? Or is it that I’m doing the one thing I swore I would never do, and am letting my disease control me?

To be honest I have no idea, and I really don’t know how to change it, my energy levels are so depleted right now, I’m not sure how to sort it out. I’ve always suffered from depression, (I was put on antidepressants at a very young age) I could blame it on this, but I don’t think it is depression, my life is actually pretty good at the moment, financially I’m fine,  I don’t want for anything really, apart from medical stuff everything’s fine, so why am I living like a fucking zombie?  (I know financial state should determine your mental state but it does to me okay?)

(I usually start these post with a subject that I want to write about and then all of a sudden I always go onto tangents and i have no idea, where I am going with it? Is my attention span that short?)

Is it because I don’t have regular contact with anyone else apart from my family?

Now I’ve never been one to have female friendships, I never did as a child and I still don’t as an adult, I was always the girl that had more male friends than females, and that isn’t uncommon, I find it hard to form friendships with females, far to complex and confusing for me, and plus I’ve found in female friendships I always become the passive friend allowing the other person to walk all over me, now that may be due to my fear of confrontation but then again saying that, I have no issue’s with arguing with men. Are you as confused as I am? Good, because I can’t really explain it myself! Are you like me? Not really able to get along in friendships with people the same gender as you? Maybe I’ll grow out of it one day, because I’d love to have a friendship like the one’s you see in shitty movies, where two friends rent an apartment together, have a laugh, and drink every night, but I’m almost positive that will never happen for me. Never mind.

But… On the other hand I barely see my male friends also, mostly because their all pretty much in relationships, and we all know male/female platonic friendships have to be put on hold whilst one is in a relationship, a bullshit rule really, but one that everyone seems to follow.

Is it the lack of friendship getting to me?

Or is it the lack of a romantic relationship?

My nature is to be a submissive, but that doesn’t mean I wont argue with you, or bow down to your every need, but is that affecting my romantic relationships, I’ve never felt girly in my life, I’m not someone who oozes sex appeal or every really feels sexy, and due to past relationships my self worth is very low. (Working on it) I trust easily, fall quickly, and always seem to be hurt even quicker, my own stupidity I know, also the factor I’ve implemented a stupid thought that my time is rapidly running out, my parents where married and had my older brother and me by the time they got to the age I am now, and when I was younger I always thought I’d be married and have a child of my own by the time I reached 21, obviously not. Not having a child doesn’t worry me, like that is the furthest thing from my mind right now, kids can wait, uncertain if I even want them anymore due to past problems I never thought in my wildest dreams I would go through, but I did, and life goes on, but being young and having not one other person interested in you is really disheartening, maybe I’m just over thinking things. (Tend to do that quite a lot)

I don’t know I just want more from life, the endless stream of days that are so similar are just getting to me, and I need to make a change before more years slip by and I end up completely sad and alone.

Horay for being one cheery motherfucker!

 

January 1st

So that’s it then…

The festive season has come and gone, and I feel 100lbs heavier but hey ho I enjoyed myself, looking back at 2016 and it hasn’t been that bad for me personally, I mean the grim reaper has definitely done it’s rounds and we have lost so many talented and inspirational people this year, and Brexit happened, and trump won, so regardless of everything else,  2016 will go down as one of the worst years. EVER!!!!

But what has happened for me this year?

Well… I finally got free of a long term toxic relationship and have cut ties with other people that were not benefiting my life, I started to write a children’s book, which I don’t have a lot left to do on, and I finally got a medical diagnosis after 2-3 years of suffering, so I suppose it cant be all that bad, well apart from the 49 tablets I have to take weekly, the fortnightly blood tests and other surgical procedures I have to endure this year, but the biggest thing I’ve learned from last year is… How fucking strong I am… emotionally.

I have personally endured so much shit in the past few years and I’m still going, stronger than ever, I know I sound like I’m blowing smoke up my own ass, but it honestly hit me last year, I can deal with a lot of shit and move on. Loosing one of my childhood friends due to suicide bought on by depression might have something to do with this realisation, God bless her soul. But last year has been about finding that inner strength and continuing.

I must admit though I have had a rather laid back approach to friendships last year, but saying that a friendship that I held so very dearly was destroyed and rebuilt last year, so that’s all good, and I must try harder this year, although we can go for weeks without talking then meet up and its like we never spent time apart.

After a year of not working I cant wait to start working again this year, its been far too long, and I need to start making decent money, so I can afford to actually do things, whilst saving, although I’ve realised I am absolutely crap at maths. Each month when I budget out my money for the month. come the end I always have more left than I thought I would, I suppose that’s not necessarily something to complain about, but it can be very confusing!

I’m not the type of person to make resolutions, but if I have to they would be..

( Pretty much all medical related haha)

1~Keep my weight under control, (Steroids are playing havoc with my body)

2~Take better care of myself internal and external ( Again bloody Dermatomyositis playing havoc)

3~Keep a daily journal just to keep check on everything.

4~Have at least two weekends away somewhere in Europe.

5~Finally buy a car.

6~Start work again.

7~And last but not least push myself to do something different.

Yay… seven resolutions, pretty apt seen as seven is my favourite number! Lets hope 2017 is an amazing year, I think we all deserve it after this one!

What do you want in 2017? What are your resolutions?

 

 

 

 

Two hours to go…

The new year is just two hours away and as I’m sat alone at home, with nothing to do or nowhere to go, I can’t help but feel a deep pang of lonliness, but the rational side of my brain is saying is it really that bad? This time last year I had already gone out for dinner with my friends and we were just about to get ready to go out to a club, in all honesty that’s all I want to remember of last new year, the sad truth is that night… Once we arrived in town, my boyfriend at the time spent the majority of the night ignoring me and chatting up other girls, only talking to me to either embarrass me or insult me infront of other people, and my best friend ended the night in tears, because the whole night had a huge cloud of awkwardness and well complete crapness hanging over it, and it only got worse, with the envitabilty of alcohol being abused and then arguments happened. So all in all it was a rather large shit show. The friends I spent that night with bar 3 are all out of my life now, vast reasonings behind each and everyone of them, but I honestly don’t think I would change it, I’ve grown a lot over this year and feel more at peace now with being alone and not relying on anyone anymore.

So is me being on my own tonight that much of an issue? Because I know I never want to relive that night again! 

What are your plans for tonight? I think I’m just gonna have a glass of wine and watch some crap on the telly. 

Happy new year! 😊🥂

Tapering steroids

As if being on steroids (Prednisolone) was bad enough, tapering off of them is being a bitch! Oh my god, it’s a pain in the ass, moon face is in full swing… did I have it when I was on a higher dose? Nope not at all, reduced my amount and BAMN! Hello plate face! Since reducing as well I’ve gained weight! Like wtf! I liked being the size I was, I was actually happy with it for once, but not anymore, which means I’m probably going to push my body to the limit to loose the weight and will probably come out of remission *Insert eye roll*

Honest to god, you can not win whilst you’re taking steroids, since reducing, the aches and pains have started again and I feel exhausted all the time, even the easiest tasks seem impossible! The problem is though with the new year just a few days away my mind is full of optimism and is rearing to jump into the new year head first, but will my body be able to keep up?

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That’s another thing, the mood swings, fuck me its horrendous, one minute I’m fine, next I want to either bite someone’s head off, or I’m crying into a tub of ice cream, it’s like being a teenager again, like when all your hormones where trying to balance themselves out, OR I won’t have mood swings and I’ll just be stuck in a rut of being a cold hearted bitch that gives zero fucks to anything or anyone.

Now I may seem all doom and gloom, it might have something to do with the fact that I was at a family party last night,  got very drunk (not recommended either whilst on medication Giant fucking slap on the wrist to me) went to sleep at 4am was up at 7am, so I’m knackered and I also have the beginning of a cold, which I feel may turn into tonsillitis or even worse the flu, which as you know if you have an autoimmune disease, normally you’ll end up in hospital for those two things, joy of joys. So yes as you can imagine, I’m one cheery fucker today!

But surely I’m not the only one whose experienced worse symptoms after starting the tapering process of steroids, right?

If you have I would love to know because right now I feel as though I’m loosing my bloody mind!

Real life Bridget Jones

Alas for once I will try to write a happy blog post, lord knows I haven’t in a while, normally my usual subject of choice is all gloom and doom, the nonsensical ramblings of someone who is no way qualified to dish out any advice on anything in life, not because I haven’t had enough life experiences, because believe me at twenty-two I could tell you tales of things I’ve dealt with in my life that someone twice my age wouldn’t be able to handle, but I’m not qualified because quite frankly I have no fucking idea what I’m doing, and that is not a bad thing, like do not get me wrong it is NOT a bad thing at all, I mean do any of us know what we’re doing… Really? I’ve learnt over this past year just to live my life one day at a time, and I’m fine with that, now I’m not saying you should too, but what’s wrong with slowing down once in a while and just savouring life, because we don’t have much time here, I know I don’t, so why not make each day count? (As cliché as it sounds) It’s all about finding that balance, and 2017 will be my year of figuring that out….
There’s something about winter that just brings my soul to life, the cold weather, the shorter days, the longer nights, I just love it, and not because I’m a “barely functioning day walker” (as I was once told) but because it’s the holiday season, Christmas is in a few weeks and secretly I’m shitting it, as it stands as I write this at 4:26am on the 4th December I have only bought 4 presents, and I still have loads to buy, but…with very little money, (Joys of still being unfit for work) anyway that’s not the point, Christmas is a time where you don’t have to go out in the cold if you don’t want to and you can just sit on your arse in front of the tele, eating crap food and watch reruns of shows like “The Vicar of Dibley” or “Only Fools and Horses” on gold (if you’re American, read above as “Fraiser”, and “Everybody loves Raymond”(sorry couldn’t think of any other old American shows haha) I mean what is there not to like?! I must be honest Christmas Day itself is slightly boring, but that’s only because it’s the same routine every year, but I shall let that one slide, because the run up to it is magical. But… my absolute favourite thing about this time of year is the hope and optimism of what the new year will bring, and believe you me, I’m holding on to that hope because the past few years have been absolutely the worst fucking years of my life so far, so I can not wait to welcome January 2017 with a new beginning because next year big things are going to change, I have it all planned out, and by god am I going to stick to it, I deserve a year of laughter, love, and being happy, a year of finally (fingers crossed) being well enough to start working again, I have missed so much not my own job, my own income and independence and actually feeling that my life has a purpose, that I’m doing some good, and taking the steps to make my life better? Take it as my “Bridget Jones” year, and hopefully it’s going to be amazing! Who knows maybe I shall take inspiration from Bridget and start daily blogging my life, nothing cut out, lay it all out there on the line, probably wouldn’t be the greatest idea to bare my soul to the Internet… but why not?!! I haven’t got anything to hide, and never know it might inspire others to do the same thing?!
Once again this blog post hasn’t really had a point, but I hope if you reading this is may hopefully of made you smile…
What do you plan for 2017? I’d love to know x

Dermatomyositis you haven’t beaten me yet! 

Coming to terms with being ill for the rest of your life is weird, but what’s weirder is other people’s reactions to it, yes I’m ill, and some days I don’t want to do anything but it’s not like I’m living in a fucking bubble, I can still pretty much do everything I used to, but I just get tired quicker, I can still go out and have fun, I just need a little longer to recover that’s all, or on the other hand I have people that have no fucking idea what I have, or haven’t even tried to learn anything about it and therefore think I’ve made it up, it’s odd, especially having something so rare, I have Dermatomyositis but my case of it, is even rarer because I’m 22 and normally you have it as a child or a lot later in life, so yeah bit of a freak of nature here 😂 but fuck it, I don’t really care, it makes me who I am, and I just have to accept that.
However there are a few things that do make me laugh about being ill and that is the same old shit people ask you no matter how many times you tell them…
“Is there anything they can do about it?”
Nahh I’m just taking a shit tonne of steroids daily just for the sake of it…
“Is there a cure?”

Well seen as they don’t know how it’s caused, or what it really is in full, I doubt it…
“How long will you be ill for?”

Your guess is as good as mine, but seen as there’s no cure, I’m gonna go with forever.
Yes I may seem sarky about the whole thing but two years of the same questions start to do your head in, it’s kind of like when someone has a baby and all anyone ever does is ask the mother questions about the child and nothing else, that’s kind of what I’m going through, no one ever seems to talk to me about anything else other than my illness, it’s aggravating, I didn’t suddenly just shut off and become someone who can’t talk about anything else but being ill… this post is very “ranty” I apologise for that but god it’s annoying haha and I do see I’m being a hypocrite by writing a post about being ill and whining about how that’s all people want to talk to me about but yeah, we all need to rant sometimes and this is just my outlet for it!
All I’m saying is stop treating me like I’m useless, because I’m still the same person, just a little bit unwell and that is all! 🙂

Living with an autoimmune disease 

(Started writing this as kind of a motivational/informative post kind of ended up a rant, sorry about that!)

A little over a year ago I was suddenly struck down with severe weakness and tiredness, to the point that if I were to sit on the floor I could not get up on my own, at first it was very confusing and frustrating because even getting up from a chair was near on impossible, feeling as though someone was pushing me back down, but physical weakness and uncontrollable fatigue aside, the hardest thing about having an “Autoimmune Disease” is you feel pretty much alone, and when the people around you don’t really understand what it is you have or why you cant just “stand up” it can get very stressful and depressing. I’ve had to deal with being left out of things like going to the beach, camping, and sports because I physically can not do it, I’ve lost jobs and now am unemployed because I physically can not work, even though I look quite well on the outside, inside is a daily struggle of being in pain and tired all the time!
Now… Autoimmune diseases are a very broad canvas, and I personally do not know which one I “specifically” have, but I do know it is non life threatening, but I will have it for the rest of my life, and let me tell you the prospect of that is so friggen scary! I do not know what triggered mine, could of just been my age or could have been from a fall I had a while back, I went through a faze of randomly feeling disorientated and just falling over which my now very scarred up knees have not thanked me for, but… that being said medical professionals do not know what causes these autoimmune disease and their is no “cure”.

Also I lost over 3 stone in 6 months and am still loosing weight now, sounds great doesn’t it, but its really not, its quite scary when you’re not yet diagnosed with anything.
I don’t really know why I am writing this post but I just hope if someone else who has a autoimmune disease reads this they can realise they’re not alone. It has taken me over a year for a doctor to actually take me seriously and get me the help I need, I’ve been told it was just all in my head that my muscles where working fine and there was no reason why I couldn’t move, I was put through Physiotherapy and told to do exercises I couldn’t do, and then get moaned at, at my next appointment because I had not improved. So many blood tests I couldn’t even tell you how many it was I actually have had, and put on various medications which as you guessed did nothing at all.
My point is… If you don’t feel well keep on and on until you get the help you need, I have to have a muscle biopsy at some point in the near future and then steroid treatment (not looking forward to that) but after over a year of being ill it has given me hope that I can get better well into “remission” as they call it, and my life will improve.
(I also wanted to do this post as a reasoning as to why I do not “work” in the normal sense as I have had a few questions on this on other social media sites.)
So yeah… If you have an autoimmune disease or any other medical problem that causes you to not be able to work, (in the conventional sense) what do you do for a living, or do you have any tips on how to make life easier?

I’d love to hear your stories too 🙂

NicoleeJayne

xoxoxoxoxox