You don’t understand somebody looking healthy but their illness being a forever ‘thing’.

You don’t understand waking up every morning and downing 24 tablets before your day can begin. You don’t understand sitting in a hospital bed for 3 months never really knowing what is happening with your body. You don’t understand your body being so exhausted your mother has to wash you. You don’t understand being the one to always cancel plans because your health is unreliable, not you. You don’t understand having to nap 3 times a day just to get your body through. You don’t understand your dad walking into the kitchen to find you collapsed on the floor. You don’t understand not being able to control your hands to button up your shirt. You don’t understand watching your hair slowly fall out. You don’t understand being labelled disabled at 19. You don’t understand a doctor telling you to go to therapy to come to terms of what your life will be. You don’t understand watching everybody begin their lives whilst you’re fighting to survive. You don’t understand a lady shouting at you for using a disabled bay at your physio appointment because you don’t look ill.

You don’t understand waking up one morning and your life was never the same.

You don’t understand, but I don’t blame you for not understanding – at least the bigger things. But I think you can imagine the littler things, like how hard it is to shower, to walk, to stand for too long, to breathe after walking up a few stairs, to put on a bracelet, to tie your shoe lace. Like having to bring a stool into the kitchen so you can make yourself some food.

Look at how quickly those things add up. These are the little things that make up the most basic kind of life. I think if you took the time you could imagine just how hard one of them little things could be. But you couldn’t imagine all of it, combined, all of the time. You don’t understand. Please stop passing judgement on those that do not look ill.

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Live Laugh Lupus

 

November 2017 would be my 3 month hospital bed sentence. 18 months later I’ve decided to accept a job in Europe. This is the highs, the lows and the people who got me through it all.

An open letter to my consultant

First of all, thank you. 

There’s a lot about a disease that nobody can teach you about, not even the specialist that is diagnosing and treating you but you allowed me to figure that out on my own. There was times when I thought I could do more than my body would allow me and you would let me try but come running back to you with the sob story. There were times I doubted myself but again, you would let me come back to you with the winning story.

As a consultant you not only had to understand my physical needs but also my personal.

Our appointments were never structured and it was dependent on how my day was going. There was times when I would bounce into your office and tell you of everything I was able to achieve and attend – the highs. But there were also times I would come into your office very quiet and worn out, defeated by this and you would pick me up and remind me just how far I had come.

I remember when I had been out of hospital for just 7 days and I was back in A&E with suspected Meningitis on New Years Eve and you did not leave until I had got a bed on the ward and had my CT scan. There was many unselfish acts on your behalf but this one I will never forget thinking your time could be better spent at home with your family, just like mine should have been.

At times I felt I resented you – you stopped me travelling to Australia and meeting my nephew but the reality of the situation was I had just been discharged from hospital after being in for 3 months. My body was not ready. I was not ready.

There was times I got fed up of attending the hospital. I went there every day for 2 months after my discharge, then every other day, then weekly etc. And I just wanted my life back. At the time I thought you was taking it from me, the truth is every appointment gave me a little of me back every time.

Over time I grew stronger and I started to rebuild myself. Not only was you my doctor but at times my therapist. Nobody quite understands the mental side of a lifetime illness at the age of 21 and you never took any of my outbursts personally.

I remember telling you about my new job, about my adventures and my new relationship. Everything which seems so long ago now. 1 year to be exact.

The first time I had met you they had transferred me back to Manchester after falling ill from my first chemo IV treatment in the October, come the December I would be admitted for 3 months under your care and every moment after you called the shots. Not once was anything left unturned, you ensured every road was looked into. Again, the tests weren’t nice and I often questioned the biopsies, scans and every other needle that entered my body.

We bonded a lot and I guess in ways you became a friend. The journey of this illness hasn’t been the smoothest, but with time you helped me rebuild my life and held my hand through it all. Nothing was ever too much, no matter the time or the severity, you looked into it until there was an answer.

I never truly appreciated just how dedicated you was to your job until you left and I got given a new consultant. The day you told me you was leaving, I rang my mum and cried. It felt like a member of the family was moving away, a friend was leaving. I wasn’t sure why I got so upset until 4 weeks later I was sat in the waiting room unsure of what was to come.

The consultant I got given had no idea of my history, as a kidney specialist he was not interested in my Lupus and I felt deflated. He didn’t understand I needed my treatment, he didn’t know my history, it was telling a stranger about my illness – something which frustrates me on a daily basis. Going through the history of my health and explaining my life to him only to see him 4 weeks later and him not remember any of it really made me understand your dedication.

‘The good physician treats the disease, the great physician treats the person with the disease.’

In a way I am sorry that I took it for granted, but also I am so grateful for every second of your time. A good consultant really does make the difference to an individuals quality of care and I hope some day to be in the presence of such a great doctor again. For now I will continue to fight because you brought me too far to turn around now.

#TimeToTalk

This morning I seen trending on Twitter – #TimeToTalk.

In all honesty, I’ve probably only ever spoken about the mental affects of having a chronic illness to my doctor. I don’t talk about it nearly as much as I should and a lot of the time my outlook is just to get on with it.

But it’s time to talk about it, about how your day to day life is altered, about how you can’t attend certain social situations, about how you close yourself away from so much because you don’t want anybody to notice.

So often I’ve used the excuse that I can’t drink alcohol so I don’t have to go to town with my friends when the truth of the situation was that I wasn’t happy enough to go out. I didn’t want to be a burden, I wasn’t ready to party, what did I have to celebrate? How exhausted I was? So many times my friends text me past 8pm to go for a drive, for a movie night and so many times I had an excuse. Every time I was doing something I couldn’t get out of – or was I just sat at home by myself because that’s where I was comfortable?

Too often there never seems to be a right time to talk to someone. You don’t think they will understand, or they’ll give you pity that you don’t want, you just want to offload to somebody.

It got to a point that because I wasn’t talking to somebody about it I would explode. I would hold everything in, and I thought I was dealing with it myself and then the realisation would come when somebody would say something so minute and not relevant and all my frustration and anger would come out. I would scream, shout and cry my eyes out over the littlest things.

There was a point where I suffered with tremors and often I would drop plates, cups or not be able to button up clothes etc. And instead of asking for help I would continue and plough on. Then when I would smash something or be unable to get dressed I would have a melt down over something that could have been fixed if I’d just reached out.

Being young you’re supposed to be happy and enjoy your life. You’re young – what do you have to be depressed about? Why are you anxious to walk into a room?

Being young in this generation brings so much more stress than previous generations. There’s these stigmas that you should go to university, get a job, buy a house, drive, buy designer labels and go partying every weekend. The reality of it is that if you go to university you’ve already put yourself in debt, the competition out there to get a job is at it’s highest and to buy all these designer labels only discourages your long term goals.

You need to achieve this unrealistic look because that’s what we see on social media but have you ever realised that these instagram models don’t have anything else to do with their lives but look good for instagram? Their life is to be a model. You have a job, you’re studying, you have a family, friends and most importantly yourself to look after. You’re doing your best.

Just because somebody else is able to achieve these things you have other priorities.

It’s time to talk. Talk to your friends, it doesn’t have to be real deep conversation and you don’t have to tell them everything but sometimes just explain that you aren’t in the best mental place and sometimes you might say no to going out, but you still want that invite. You need your friends to understand that this is just a moment where you cannot be in that social environment. If you don’t let them understand you might push them away.

It’s not always going to be easy and it may make you feel uncomfortable. But there’s nothing that will get you through this more than the support from your family and friends. Speak out.

Hope.

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I’d love to tell you that I don’t get upset. That I don’t resent people my age who are out doing drugs, getting drunk and living life without the fears of an illness in the back of their mind. I’d love to tell you that I don’t have days where I don’t sit at home and look at pictures of myself from 3 years ago and wonder where the girl I used to be went. I’d love to say I’m not tired and I’m not fed up, but I’d be lying.

If you ask me about my illness I’ll tell you without a blink – I can tell you about my illness, what it is, what it does but I can’t talk to you about how it affects me personally. You know in yourself you are over something when you can talk about it without getting upset and unfortunately I’m just not there yet. I’m almost there and some days I think I am but then somebody tells me how positive I am or how proud they are of me and I become an emotional wreck all over again.

In all honesty, everyone has something going on and that’s how I mentally push myself through it. If I didn’t have this illness I’d be upset over something, there’d be another worry in my mind – money, relationships… there’d be something. There is so much things out there which are harder than what I’m going through that I almost feel selfish for even for a second allowing myself to feel pity.

I haven’t been posting lately and in all honesty it’s because I’ve been living. When I first started writing it’s because I was bed bound, I was; without realising, depressed and looking for an out. I needed to talk about what I was going through without getting a response. It was almost like a diary for me. It never begun as a blog, it began as a note on my iPad but then I realised that this blog could help with awareness of invisible illnesses. Even if I could educate just one person or interest them enough to talk about it to somebody else, there’s 2 people who would think twice before judging somebodies abilities without knowing their medical history.

Often I look back 3 years ago and it infuriates me how much of a game this has become. One minute my meds are getting better and my features are returning back to my face, then I’m back on the meds and I feel and look awful. It’s a constant battle but in all honesty if I look back 3 months ago to now I am in awe. Bed bound, unable to wash myself and not able to eat without throwing up. I start work at the BBC next week… I’m 2 holidays down this year with another 2 to go, I’m 1 festival down with 2 to go and it’s my 21st birthday in 4 months. I’m hopeful, I’m happy and most importantly I’m determined to make this the best year yet.

J K Rowling once said ‘rock bottom became the solid foundation on which I rebuilt my life’ and I get it. I really do. You hit the bottom and you see no way out. Nobody else can pull you out of that state, you have to be your own hero. Christmas day I forced myself out of bed, I put on a face of make up and brushed my hair. 5 minutes later I’d cried the make up off, my clothes were changed to my pyjamas and I didn’t leave my house.

Self care isn’t always pretty but it’s necessary. It’s not always candle lit baths, netflix and chill or face masks. Sometimes it’s forcing yourself out of bed, dragging yourself out of the house and showing your face. It’s the pep talks you give yourself – the cries, the screams and the silence of being overwhelmed. It’s convincing yourself to do all the things you should be doing even though the willingness has left your body, it’s cutting those ties which are so precious but are hurting you so much. It’s the bitter medicine you have to give yourself. Sometimes, self care isn’t pretty but it is so worth it. It’s needed.

I didn’t see it coming.

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4th January 2016. The bus, the one that you can get hit by at any time? Yep, that one. It came.

Background: I’ve had joint pain since I was 15 but was always told it was rheumatoid arthritis, I had no other health issues and was living in London away from my family chasing a career I loved.

I had been having flu symptoms for around 3 weeks and was told by a walk in centre to go home and rest, plenty of fluids and some paracetamol. I did as instructed. Waking up in the morning I was shattered but needed to use my loo. Next thing I remember was waking up on the floor, in a panic I jumped up to ring someone and was woken up on the floor again. Learning my lesson I crawled and got my phone to ring an ambulance. I was severely anaemic and needed numerous blood transfusions. But when questioned with what had caused it they were clueless.

It took another 2 collapses, ambulances, resuss and blood transfusions before they investigated further. There was complications with the transfusions as my body rejects cold blood and I have a rare blood type.

‘Cancer’. You hear about people going through this, you hear about chemo and it’s always somebody else. It’s never you, but this time it was. They were throwing this around my diagnosis. I was moved to a room by myself and sent for an emergency neck biopsy the following morning. I still struggle to talk about that moment without getting teary – what I put my family and friends through I couldn’t imagine. Once I got the all clear, I went back to Manchester for a rest.

The days went by and again I collapsed etc – no diagnosis. X-rays, bone marrow biopsies, CT’s everything was done and finally I got my diagnosis. New meds. New mindset but I returned to work and got on with it. I’d never heard of lupus so for me it wasn’t a big thing.

Unfortunately since then things have taken a turn for the worse and my Lupus is currently quite severe. I have stage 4 kidney disease, I’ve been having chemotherapy, I’ve got through sepsis and various other infections/viruses (currently they think I have meningitis), side effects to medication has meant that I struggle a lot daily. Embarrassingly enough my mother washes me, she dresses me and I’ve lived in a hospital for about 3 months now. I’m 20 years old and I don’t really do much for myself. I’m exhausted, I’m in pain and I’m frustrated but I cannot control this element of my life right now.

People can be brutal. They whisper at how young I am and how lazy I am. I had a woman sit talking about me to her family for half an hour whilst I lay in bed in pain – little did she know that I wouldn’t chose this for anyone. They call it an invisible illness because to look at me I’m a young abled girl but if you look closely enough you can see it. You can see the pain in my eyes, the struggle of walking, the tiredness. People just don’t look close enough.

The only thing I can control is how I feel about this, I’m angry but I refuse to let it bring me down. I have to be positive because it’s all I can do. This post doesn’t seem very positive but as my blog goes on you’ll come to realise that I’m doing the best of a shit situation.

 

 

Before you know it, you’re somewhere else.

Hi.

Some of you guys will know me from social forums, some personally and some of you may have stumbled across this blog – either way, welcome.

I posted a couple of weeks ago on Twitter (@bexleescott) about potentially starting a blog but not feeling I was interesting enough; I have a lot of opinions and time right now so I thought what the heck.

Mostly my blog is going to be me educating y’all about my illness and how it affects me, it will also have day to day things on here. Discussions I feel strongly about, opinions I may have and just general life advise that I’ve been given/learned in my short time here.

A bit about myself: I’m 20 years old, from Manchester and I currently have taken a break from my work life (there’ll be a post about my current job and advise on how to get into the industry (Film and TV Production)/how it is ACTUALLY is to work in the industry). I used to be a care assistant also so I’ll probably publish something regarding that experience. I’ll post about family, friends and strangers – it’s just who I am, I like to talk.

Hopefully I won’t become boring but I will still continue chatting. I’ll post music, pictures and anything really I feel relevant/that somebody else can benefit from. Later down the line I will be posting about dieting and trying things to be a bit more healthy but this is more of a personal journey of when I’m in a healthier position to focus on my image.

This is probably it for this post. A bit boring, drags a bit but I’d get used to that. If you have any ideas or questions you think would make a good post just send me a message – my email: beckycatherine@hotmail.co.uk.

Toodles – ‘a` tout a` l’heure’ x