The social media illusion.

 

The image people see of me on the Internet is not the full story of me; my personal social media accounts, Facebook, Twitter, Instagram are my way of communicating with friends all over the UK, as well as some of my closest friends who are 1000's miles away. I want them to know that I’m having a good time and that I’m achieving things despite my illness. But when times get hard it can be one of my ways of reaching out for a virtual hug.

But what you see is all an illusion; social media is (in my humble opinion)all an illusion. For me as a young (ish) person living with 9 long term illnesses it's even more important to look like I am still living a life worth living. I'm not changing who I am or what my life looks like by what I say on my social media accounts I just cherry pick the best bits to share!!!

I only post pictures I like of me: it's not rocket science is it!? Who would post pictures of themselves that they are not happy in?

Makeup makes me look half human on days in reality with cluster headaches this is what  I look like - death warmed up!

'You look so well'

Yes,  I went to a wedding at the weekend, yes,  I looked well (did I mention how amazing my makeup bag is?!) and yes I'm smiling. That’s what you saw from the pictures and posts I did over the weekend.

 I forgot to post the picture of my sitting on the floor of the disabled toilets in my new pretty dress crying for an hour, using my oxygen hugging the cylinder like it’s the only person in the world who understands me.  I didn’t write a post about the searing agony in my head, or that my friends I’ve known for years don’t understand my life or my  illness and how upsetting it is to answer the ‘so what do you do?’ question, again and again, with no answer!

You look so well is a really hard one; I want people to think I look good of course I do! But I constantly interpret that as ‘I thought you were too sick to work… you don’t look sick’

Of course I don't want my exterior to represent what's going on inside my body: But sometimes I think maybe people would understand me a little better.

So yes we are lucky to see friends, but we pay for the privilege, physically and financially.

My fatigue levels are like nothing I've ever known. For every 'good day' that you see on social media, I am then in bed for at least the equivalent amount of time. We just had a short 4 day break away and I spent a week in bed afterwards (worth it though)

I've learnt to be proactive and productive on these recuperation days. My bed transforms into an office like the Tracey island toys of my youth! So you may see me respond to emails or tweet or post on facebook.  I often spend these days fiddling with Instagram filters making pictures of my days in the real world look even more fun and beautiful that they were... All of this online activity and you wouldn’t know  that these are some of my worst days!

It's hard to convey how you feel in 120 characters or a Facebook status. It's even harder in a single photo. Not just for me, for everyone.

I want people to see that I'm still functioning (just about!) that I still make time for my friends and family and that I care about their achievements, birthdays, babies and our friendships.

I don't want to waste my energy and their Social media feeds talking about this depressing illness. I try to mention it only when something good has happened and we have achieved something.

My friends might point out something different now; but I hope I present the positive side of Katie on my social media. This is my goal; I need somewhere where my life is normal... Ok not normal that's a bit too much to ask, but more like the rest of the world.

But the message of this blog is that it is all an illusion. Like a swan I may look like I'm swimming through life, having fun and seeing friends but underneath I'm kicking like hell in the biggest fight(s) of my life to stay alive. I don't want to talk about it, I want to carry on talking about the good side of things but don't forget it's not all there is... So please don't judge me.

My strength

My strength

People always say to me "I don't know how you do it!", "I couldn't do it I don't think I'd be strong enough".

I don't know how to answer them, I just do it. I just put one foot in front of the other and try not to fall down.

Two things happen this week made me reflect on my strength.

Firstly I met with the psychiatrist, I have long suffered with the impact of trying to be strong: depression and anxiety.

After talking to my life with him, how I work, how I feel, he praised me for my strength-me strong? I don't think so he reassured me that I am, given what I face many would have fallen apart.

He gave me Time to process this statement and I burst into tears.

What he didn't know was less than 48 hours before my appointment I had watch my grandma passed away.

I took great pride in telling him that I knew exactly the source of my resilience-the inspiration for my strength-my grandmother.

Age 27 she contracted polio. She was in hospital and rehabilitation for months. Leaving behind a one-year-old (my mother) and an infant.

Over the next 60 years, a miracle in itself, her body gradually failed her as a result of the polio and in the end she was confined to a powered chair and relied upon up to 20 carers a day to meet her needs.

But in that 60 years she should do well in the spirit that I have witnessed upfront for my 35 years. When I became ill she often gave me advice, support and more recently she prays my resilience and my spirit.

She was an avid reader of my blogs and not so long ago picked up the phone just to ring me and tell me she was proud of me, not something she would usually do.

I have the most love and respect for my grandma I have so much pride for 60 year long fight, but even more pride that this worrier was proud of me and my strength.

The strength I got from her.

I am strong-I can't confuse feeling weak with the fact that my life is hard.

I am strong- she made me that way

RIP Nanan Joy

my PIP journey

I am disabled, I claim benefits, I live on money given to me by the state. 

Words that make me feel awkward to say out loud. I don't know why

I have recently been through the process of having my 'needs' reassessed by the state. I want to share this process with you because its impact surprised me. 

I initially applied for help in 2007 when I was forced to leave my paid scholarship as a PhD student. This was an easy process which involved getting a paper application approved.

Earlier this year I was forced to admit that as a result of my worsening neurological issues and a recent diagnosis of Addison's disease, which is proving incredibly difficult to control, I am in need of far more care, support and consequently disability allowance/benefits.

When I rang up to request my case was reassessed I got predictable but unwelcome news that this would mean being assessed for personal income payments (PIP).   

The paper application was not dissimilar to disability living allowance (DLA) and evidence was not hard to collate given my abundance of hospital letters. My first major stumbling block... an assessment. I had never had a face-to-face assessment while on DLA and to be quite honest with increasing problems with anxiety, the whole process terrified me.

I managed to request and arrange for a home visit which made me feel a lot better knowing I would be in my own environment. Despite this the stress affected my Addisons which meant I had to 'stress dose' with my life saving steroids. 

The nurse was nice enough, but it was obvious from her questions that despite having 'researched' my conditions she had no idea what I was talking about ... But does anyone!? 

I must admit somewhat naïvely I didn't think that this process would negatively change the level of allowance that I was receiving as I was confident that it was wholly in line with my needs. I was just hoping and hoping that we would be able to increase my allowance giving us far more freedom and ability to cope with the day-to-day issues that are increasingly apparent. 

The day my letter arrived I sobbed for hours. My award had been slashed in half, in the coming days other areas of our income were reduced in line with the fact that I was not as disabled as I was last week! We had no idea how we were going to live on this reduced income. We would probably manage on a practically invisible budget but wouldn't be able to get to any of my medical appointments which are a 250mile round trip. 

After the dust settled and I calmed down, which took a while, I realised we had only one option, to fight. 

Fight... Again? Another one? I can't! 

I got advice, support and evidence and asked to see their full report to see what I was dealing with. 

I know my health is complicated, it's unique and special just like me (stop laughing!) but TRY! Try to understand that a TAC attack is not a seizure, and my seizures are not headaches! 

And apply some common sense! If I can't take hot food from an oven an alternative is not 'use a microwave'! 

The report gave me hope, due to its inaccuracies, but I still didn't want to...couldn't fight. I'm already fighting 9 health conditions, the medical system, fighting for understanding and fighting to get out of bed each day and make it through that day without hurting myself! 

Now this, another fight that makes me feel like I'm faking my illness, makes me feel guilty as it affects my family too. It's more paperwork, more phone calls and more days filled with anxiety. 

I ended up in a 6 month dialogue with DWP which resulted in a tribunal last week. 

The process destroyed my mental health. It was fragile to begin with but less than a year after my last counselling block ended I have now been referred to a psychiatrist. I can't cope with the anxiety and the suicidal thoughts. 

I touched on it before; I felt like everybody thought I was faking how ill I am. Family, friends, others with my conditions, the DWP, doctors. Anyone I told I 'heard' them say 'I knew she was exaggerating'.

I second guessed everything I did. On the rare opportunity I got to socialise or even on essential shopping trips I was scared to go, worried that it would reinforce what I 'knew' people were thinking. 

Last week I was awarded the level of benefits I was hoping for in court. Yes court. Being searched and having drinks and sharp objects removed (a plastic comb!!!) and having to wait outside the court room. The nerves got the best of my and after sobbing and asking for my mum (yes I'm 35! Yes I need my mum!) I arrived in court tear stained and shaking.  Not to mention it isn't good to leave someone with addisons without hydration! 

The panel were lovely by the way but I don't feel I should have ever found myself in their presence! 

Yes I'm happy and I was elated when I rang my parents. But it's not sunk in, I'm convinced it's going to go wrong still. I'm still anxiety filled and  already thinking about a reassessment in 2019! 

I was so far down the dark hole that it's hard to see the light... I can see the stars though, they shine bright no matter how far I fall. Life can get better based on this decision but it will take time, because this process was a huge setback. I need to learn how not to be scared again. 

Now this is just my experience, and in my experience of friends, family and social media this process varies from person to person, from city to city and condition to condition. WHICH IS UNFAIR AND WRONG

Don't be afraid to start the process... Be aware that it CAN BE a scary, traumatic, long and complicated process filled with unknowns... But it's worth it if you are able to afford the things that your health makes problematic/impossible. 

I claim benefits, I'm not a fraud, I am very disabled but I also have abilities and ways of improving my life and others lives. After my 1st assessor said I couldn't possibly have problems communicating face to face as I blog (yes I know, it confused me too! ) I stopped blogging. But I'm back, blogging and vlogging to make sure no one ever feels alone on this journey.