Hello Strangers

So I know I haven't written a blog post in a VERY long time so I have absolutely loads to catch you all up on.

Little update on my life in general, I did my a levels and surprisingly didn't completely fail and landed myself a place at Middlesex University to study children's nursing and fast forward 3 months.... I'm a term down, loving it and going onto start my placement in a hospital in the new year- how crazy is that!!!!! Me. A girl with a chronic illness. At uni. Partying. Living away from home. Heck- I've even managed to score a boyfriend.

You'd think with all the positivity and energy buzzing around that I would be ontop of the world right? Nope. I AM 100% SHITTING MYSELF! I really am becoming an adult, going into a career where I look after people... but I don't even feel like I can look after myself.

Don't get me wrong, I'm bloody happy... I am socially really moulding into the 'self' I felt that I would never recover after my teen years went so tits up. And if I was a regular 18 year old I'd be pretty chuffed right now.

But unfortunately for me, Endo doesn't like it that way and she has still managed to crop up and ruin some of the events that should've been the most memorable of my life... so how do you deal with that? Well in the last 3 months, away from my parents and the good old safety of the pastoral care team at school... you go day by day. I am learning that thinking into the future is too fucking scary! It really is, and that doesn't mean avoiding your responcibilities it means focussing on one at a time; respective of time. Worrying about my life 5 years from now won't help me today. In fact, worrying about my life tomorrow will make today 10 times worse.

So I guess the message of this cheeky blog post is take it easy- try not to worry about the future and live for today, because today, you may get an hour, a minute or a precious second of the pain easing and those moments should be cherished- not used to worry over.

Cant sleep so lets write

Sooooo, once again I find myself awake, having a little tear up and struggling to sleep. It's funny really how I can sleep all day and can't stay awake to complete my day to day tasks but as soon as it hits 10pm, INSOMNIA suddenly exists.

I've been thinking recently on what to write on here and I have avoided it as times have been tough for me recently and the thought of this blog becoming a depressing wall of sadness just isn't me... especially after finding out some of the people that read this.

Back to me pondering about what to talk about... relationships, friendships and family seems to be a  topic I haven't spoken about. So here it goes.

Family is so important to me, anyone who knows me knows that I love my family beyond imaginable and that they've been nothing but supportive through my journey so far, aswell as friends, I have a collection of close friends who will do anything to try and make me feel better. Relationships, I mean they don't always work out but everyone I've dated has really been supportive when we were together. Everyone around me loves and cares about me so much and I should feel privileged.. lucky to have so many caring loved ones... right?

Wrong.

As most people who live with either a chronic or life long condition will probably be familiar with this... that you could have 10 million friends and family and you can still feel completely isolated. Isolated, a word that describes me perfectly at the moment. In no way am I physically or purposefully being isolated at all, I mean to most people that know me wouldn't think anything of it but I feel completely separate from everyone and everything. When there's something in your life (like endometriosis) that no one else can see, or feel or even notice, but it singles you out from everyone at the same time, I think its very easy to feel alone.

And when it comes to family and friends (the ones that love you so dearly) you cant help but conceal things from them because you couldn't care hurting them and 9 times out of 10, they just don't know what to say.

But I would like to say, if you have a condition and you're reading this, speak to someone, anyone, it WILL make you feel better, I promise. And if you're reading this and you know someone with a condition, ask them "how are you dong, seriously?" and don't ask it half heartedly, put it out there that they can speak to you, it'll make a massive difference.

Thank you family, thank you friends, I don't always appreciate you but I don't know what id do if you weren't around!

It's not just physical...

It's not just physical... it really isn't! And this is something I've learnt first hand in the last couple of months. Nearly everyone with chronic pain suffers with depression and anxiety- don't believe me? Google is full of the facts- yet it seems that virtually no one is aware of the effects that chronic pain can have on you.

I get the phrase "atleast your not dying" quite a lot... and don't get me wrong I know this is said most of the time from good friends who are trying to reassure me and make me feel better but unfortunately the thought of being alive and the realisation that you are going to have to live in this amount of pain every day for the rest of your probabaly long life is scary, daunting and you just don't want to think of a future of endless pain.

Don't get me wrong, I'm very grateful to life I have most of the time, I'm thankful that I have an amazing family, great friends, a supportive school, a home, food and water. Which for some people is only a dream. But. And this is a big but, sometimes, and maybe it's just and hour of the day- maybe before I fall asleep that I really really hate the life I've been given, and that doesn't mean I'm going to give up and not go to school and not go and get a degree and not get a job and have a fulfilling life because I can assure you I am but for that little snippet of my day- this reality just isn't enough- some people may read this and think "drama queen much" and I don't have an answer because I have the same reaction to myself all the time! But you're allowed to feel sorry for yourself every now and then, your worst is the worst you've ever felt so that's pretty shitty for you.. you will never feel someone else's worst so don't judge them for it either.

What people need to realise is that yes "it could be worse" but also "it could be better"

Nights out- Are they worth it?

After recently turning 18 (your girl is officially an adult) I find myself a little far behind everyone in everything that I do! I have so much important stuff coming up this year.. leaving school, taking my a levels... starting uni (hopefully) and it all becomes a little daunting- for everyone I guess, but I find that trying to keep up with friends or even my mindset (my brain thinks my body is fitter than she is) is one of the day to day thingsi struggle with most!

Now I'm not going to lie to you and say "my life is so sad I never go out or do anything fun"because trust me I get out and about!! But what most people don't see is my recovery... I'm not talking about your banging headache hangover and sore feet from the 6inch heels mum told you not to wear. No I'm talking about the punishment that endo, IBS, migraines and numerous other illnesses throws at you after a night out (or even a night in-sometimes she's a bitch for no reason).

So I find myself being punished for enjoying myself... and to me- it's not fair! I'm an 18 year old girl who deserves to go out and stay out till 5am and drink a little too much without becoming bed bound the next day!

So here's a little shoutout to all you chronic illness sufferers who sticks it out and says "fuck it" once in a while and sacrifices a good few days of pain because going out and getting drunk and dancing all night was WORTH IT!

Not so happy holidays

So the holiday season is officially over and I'm tucked up on my sofa in a duvet with a sick bucket and lots of painkillers... BUT I'm looking on the brighter side of 2017 and hoping it will bring lots of positive change for me in my social, physical and mental happiness!!!! But first I'd love to talk about having a chronic illness during the holiday period and what makes it at times the worst time of year!

I love Christmas!!!!!! I love the food and the decorations and spending time with the folks and the family it really is amazing but it's not when that family member no one invited endometriosis turns up and ruins it all. And I think that's the thing about a chronic illness... it makes you so anxious to the point that you become scared to even start to enjoy anything (Christmas, new year, birthdays) I personally get so scared and worried that my illness will creep up on me I don't want these times of year to even arrive because I don't want the disappointment of being too ill to experience and enjoy it.

Last year I wasn't bed bound on Christmas Eve and now I can't help but fear it! Fortunately Christmas was relatively smooth for me and I enjoyed a quiet time with family. However I still had to sit and watch what I ate, drank, make sure I don't bend too much which although it was awful it's apart of my life and my mum, dad, sister and nan looked after me and helped me through it.

New year was spent in Germany with my uncles family, it was beautiful to share it with everyone. And although I'm not one of these "'new year new me" people I have decided to change my mindset this year and take care of number one (sounds selfish) but I explain myself too much make excuses for being ill and I'm constantly saying SORRY! Sorry is said everyone other word in my life. But you know what it's time for a mindset change and doing only what makes me happy!!!!! And that's that. 

My story- part 3

So we've made it to the end of 2015 and I recovered from my migraine attacks and was on 2 tablets a day to keep it that way. Everything would appear to be under control, I had been put on the NHS under Dr Hanna and colleagues everyone couple of months however I'd still experience pain everyday, constantly tired and struggling to eat when sickness struck. 

And Christmas Eve proved a momentous time for another change, I ended up down the doctors with awful pain in the upper part of my abdomen. Which was clouded to to be gastritis. But I was in the new year of 2016 was reffered to another gatreontologist Dr Dewar. Gyne side had also tried to improve my pain by issuing me with a hotmail injection called Zoladex every month which did improve my pain but caused me great anxiety and hot flushes so was discontinued.

I have since had an endoscopy (which came back clear) and 3 a&e visits which brings us to the present day. Sitting on the sofa, currently tackling glandular fever, endo pains never failing to flair up and what I call the 'mystery' abdominal pain which is yet to be discovered. And that's my medical story...however I actually wanted to write this blog to communicate the other effects that chronic illness can have on sufferers which are your relationships, social life and career.

My story- part 2

So now you've been informed on all the factuals I'll continue with the next part of my story... after my  operation (technical name laproscapy) I was put on a course of contraceptive pills which would take me down to having a period every 3 months in hope to minimise the endometriosis growth. And indeed for a few months seeing me into the new year of 2015 I felt better until February/March time when all this pain returned alongside my 'favourite' symptom of all... NAUSEA. I found myself going about my day to day heaving and reaching when I felt sick, not eating, not sleeping and experiencing terrible pain in all of my stomach.

So obviously we returned to good old Dr Stier only to be told that the amount of pain I was experiencing and the location of the pain couldn't possibly be gynaecology based so referred me to my second specialist Dr Azante (my amazing gastreontologist) and after a series of tests including X-rays and MRIs and blood tests we found that I had a slow acting colon, which in short is where my colon doesn't exactly function normally and as a result my large intestines had become, to put it nicely 'blocked up' so another set of tablets were distributed and I couldn't help but feel like I was on a cycle around from previous months.

Gladly these tablets seemed to go their thing and alongside some diet advice I was on the road to recovery or that's what I thought, after a couple of months all my symptoms again returned but annoyingly by this point I couldn't tell which pain was which and it was so frustrating to figure out what was causing me all this discomfort!!! A new little symptom joined the team mr migraine, I could hardly make it to school and finally I was admitted to hospital with numbness and loss of feeling on all the left side on my body with excruciating pain, fortunately after CT scans and nephrology tests it was concluded that I had experienced a hemeplegic migraine attack. And after 4 days in hospital with my paediatric doctor Dr Kahn I was well enough to return home for a recovery over summer.