Lucky Number 7

From the very beginning there was no doubt in my mind, I loved him and he loved me. I met Tom at school but at the beginning he didn't like me and I was pretty much into every other type of guy than him. If you didn't play guitar or rugby I wasn't interested. One night at a party we had a meaningful conversation, I told him that there's more to me than the party girl everyone knows - I had a lot of ambition and I was very head strong. I didn't know what love was because I stopped my emotions from going that far - I never stuck around for that connection, three months in and I'd usually trade up. That was until I met Tom. 

We became friends at a time in my life when everything was falling apart, my dad had become seriously ill and my life changed forever. My dads illness had a significant impact on my life, terrified he'd die I worked harder at school, concentrated on myself and told no one. Except one day, my dad had just been put on life support and I just shut down. I was beside myself and then Tom approached me he noticed something was wrong and for the first time I spoke out. He said nothing other than a big hug - it was everything needed.

He will tell you I kissed him first, but really it was him. Either way I didn't care, he made me happy. On February 20th  he asked me to be his girlfriend and I said yes. And the rest is history. We've had a chaotic, memorable and loving seven years even more so since my diagnosis.

When I was admitted I didn't tell Tom. At the time I was told I would be out the next day so why worry him. That was until the doctors found I wasn't responding to medication, my temperature was soaring and my body was shutting down. The biggest shock in my life was when I was lying in the hospital bed and he turned around the corner. He visited every other day and was present when I was diagnosed. That moment was the hardest we'd every been through together. Tom's never had to face serious illnesses in his family like I have and at the beginning he didn't know how to respond. But he tried, first with food, helping me dress and conquering the outside world whilst dealing with a serious flare up. He attended my first attempt of a kidney biopsy and blood tests. 

Don't get me wrong its not been as easy as it sounds, in fact it has been the most challenging time of our lives. We have both lost friends through this, those who are ignorant to my illness and severity of it. We battle dodgy looks when I use my blue badges and fight complications of lupus together.  And those are just a few of the battles we've faced. 

Yet I couldn't have done it without him - any of it, my degree, my internship in America or battling lupus. He's my complete rock. We live in the moment, and plans never change - we are saving for a house, going to Disney World in September and continue to plan our future. 

Having lupus is living with a ticking time bomb but this will never stop us from doing what we know best - loving each other.

If you never change your mind, why have one?

Some things never change.

Before Lupus I was indecisive. And Post-diagnosis, I'm still indecisive.

However, as you may have noted I have always wanted to complete a masters after my degree. I studied Film and Media Communication at De Montfort University and graduated in 2014. In the months after my graduation I became ill and was diagnosed with Lupus. I suddenly thought my dreams of continued study was over, temporarily it was. In my mind I knew completing a master would be highly stressful, I would have to leave my current part-time job leaving me with little income, and with no real hope of ever working in the film or media industry due to the jobs of which have long hours and are highly stress-related with little pay.

This doesn't mean I regret my degree, but if I had my lupus diagnosis at an earlier time I may have had to consider another degree subject. 

Even more so, I am proud of what I've achieved even if choices have to be changed. 

I have decided to not continue with a masters and decline offers from University of Birmingham and University of Leicester. 

Instead I have decided to complete a Chartered Institute of Marketing Professional Marketing course. The Level 4 course is equivalent to a Foundation Degree and is very sought after in the media/marketing/business sector. This consists of three modules which are split up to make learning easier. I am excited to start this which may happen sooner than later (January 2016 hopefully!), learning is all that I have known, and its just another step towards finding who I am once again.

You can always achieve, it just takes a little more time and sometimes a change in path. 

Absense means I must blog harder.

Hello Everyone

I apolgise 10,000 times for my lack of posts and frequency.... I must work on this.

This is just a quick post today as I recieved some news that I didn't get a job with channel 4 to work at the paralympics. I was a little disheartned and I couldn't help but question why.

I was asked in my interview alot about flares - I simply said yes they can come on but as a lupus sufferer I do all I can to avoid these such as not be around people with colds, infections etc, managing stress well and getting enough rest.

However I think with the term lupus we all get put into a box when infact we are all individuals and have different triggers. I also think because I suffer with an invisible illness they don't realise the extent of damage to my body or pain.

I could be completely wrong but because I don't look disabled, that may put them off as they want to look like a company who hire those with disabilities.

Just to clarify the job position was for those with disabilities to work for companies on the path to the paralympics.


Although I didn't get the job I look forward to the other positive aspects in my life - I have just booked all my seats on my flights to Disney next year, I have places at Birmingham and Leicester to complete a masters and my flare continues to be brought down. Always look towards positives. I will post another blog on my feedback from my job interview - hopefully that will provide more answers.

The Fashion Crisis of a Lupie

For those of you who know me, or as your going to get to know like most girls I absolutely love fashion - I like trends but I also like quirky fashion. From working at River Island for four years it became apart of my life. I must admit there are times the fashion police have tracked me down but thats all down to discovering who you are and what you can pull off.

Photos through the years before my 2014 flare

When my flare began in October I found myself bound to my PJs. After all they are a lupies best friend. However as I got better I was determined to get up everyday and get dressed even though most days I didn't leave the house. The problem was that nothing fit, my steriods had made me gain three stone and because my kidneys were effected they too made me extremely bloated. Therefore it was back the drawing board. Even know at a healthy 9st 9 I feel frumpy in my clothes, my body has drastically changed and its something I will get used to but it also means...I need a new wardrobe. Your all probably thinking well she thinks shes fat at 9st but when you have been under 7st for a large part of your life you don't know any different. At school I was labelled 'i'd kill to have your body' whereas others would make anorexia comments. However those people don't understand that the dramatic weightloss I had is a symptom of lupus. The weight I've regained is down to my tablets, if you are on or ever have to be on steriods - I am so sorry. Anyways - you'll learn from my blog that I ramble ... alot.

As I tell people lupus is much more than just a medical illness it also effects you physically, psychologically and emotionally. I've had to deal with the fact my body has changed in more ways than one. My feet have become swollen so I can't wear certain shoes, I tend to stick to tshirts and jeans which is very degrading and upsets me as I'd love nothing more than to have the confidence to wear more girly clothing. I rarely paint my nails because my tablets make them break easily and as for make up as seen in my previous post - its painful to wear.

I'm in a fashion crisis and I seriously need some help! My wardrobe is now 2/3s emptier than a year ago and I can't remember the last time I wore my beloved Vivienne Westwood shoes! Does any other lupie feel this way? Has latched on to one pair of jeans just because they are comfortable etc? I hope I'm not alone in this, my fashion mojo is officially lost, someone call google earth!

I'd love to wear the items below but whereas before I would have instantly brought them, now I'm doomed by conscious feelings of how they will fit, what will my body look like, will I be too bloated to wear them?
Honestly... I'm finding it really hard to feel amazing in clothes to the point where I'd rather be in home than go out just because of how I look. I need to adapt to my new body and this will take time I guess for now I carry on the search for my new look until then.....its good old topshop tshirt and jeans!

Lupus Rash - A Make Up Nightmare!

So my video below shows me taking my make up off to reveal my lupus rash... what a pretty site.

It's very hard when you have a rash to wear moisturiser let alone make up. I can only ever wear it for a few hours before my skin becomes really dry and peels off or it irritates it to make my rash even worse. So ladies if you really think A SPOT is your worse nightmare.... you simply have no idea.

 

Basically... my phone is shit and has no storage. But anyway...  I will now show you photos of what happens when I put my steriod cream on my face. I use Clobavate 0.05% w/w Ointment. Do not use this on your face unless your doctor instructs you to. 

 

So as you can see, this isn't a nice aspect of the condition to live with. It's took me alot of strength to upload these images of me because I am fully aware of those who will make fun of this. Oh they must have such a hard life to do that but there's nothing comical about this condition. Make up is apart of a women's routine and when I had my severe flare that was taken away and made me feel less girly - I wore pjs all day, no make up and a top bun - that used to be my usual sunday, but it became my life 7 days a week. Even though it can hurt to wear make up, I do it anyway to grasp a bit of normality.

Lupus and the General Election.... I'm sorry what?

After looking at many, many manifestos to make my final decision about who to vote for I have done a video about how the parties would improve/change our NHS as this is something many of us should consider when living long-term with a chronic illness.

GO VOTE!

It's a new day...

Inspired, and so tired.

This blog has been an idea for a while but as fellow lupus warriors know, or you newbies about to find out.. timing is never on our side. I am now feeling well enough to share my story - past, present and future. I ask that you all respect my views and values - even if they differ to yours. While I'll share my lupus journey with you all I will also talk about other things going on in life, the general jazz because I love a good natter! Its been a tough six months, but now it's time to stop sugar coating this shitty, debilitating and life threatening illness and show its true identity to the world.


Are you listening? Best put the kettle on.