Universal Credit Saga – Part Six

I’m going to try and keep this short and sweet. Having been away for the past week, I got home yesterday to be greeted by numerous brown envelope letters. I’m not a great fan of these types of letters, they fill me with dread and give me all the anxiety so I decided to ignore them and open them when I’m less exhausted. So, this morning was the morning that I did some adult admin, including opening the dreaded letters because even looking at them was making me feel a bit ill.

One of the letters was from universal credit and gave the decision of my work capability assessment. I’m not joking when I say that I’m writing this with teary eyes: I have been granted universal credit. I have been deemed ill enough to not need to be job searching or attending interviews and I don’t need to attend work commitment meetings anymore. It honestly feels like a huge weight has been lifted and I have been fully validated over a situation which I should not need validation for.

Obviously this is not an Oscar acceptance speech but I wanted to say a massive thank you to everyone who has dealt with the crying, ranting, swearing, anxiety attacks and all the negativity associated with universal credit. The system is a bastard and has made the last few months of my life utter hell. But this fight isn’t over completely. Yes, I am truly thankful that I have won against the most broken system possible but that is not going to stop me speaking out at how unjust the system is and how it’s failing the many, not the few.

Discrimination against invisible illness has got to stop.

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The Problem With Love Island

I love Love Island. I love the drama, the stupid comments, the recouplings, the challenges full of innuendos. I love almost everything about it. But this has got me thinking. As someone who identifies as being a feminist, does watching Love Island make me any less of a feminist or a bad feminist?

As with all reality television programmes, there has been criticism and controversy over Love Island and we are only four weeks in. Perhaps the biggest or most talked about controversy this year has been the behaviour of Adam, which has sparked warnings from domestic abuse and women’s charities about abusive behaviour and the signs of emotional abuse. Women’s Aid wants viewers to recognise unhealthy behaviour in relationships and to “speak out” against “domestic abuse”.

For people who don’t follow Love Island as avidly as I do, I’ll briefly explain: Adam entered the villa after the main coupling up show at the beginning of the series. He was initially coupled up with Kendall, but dumped Kendall for Rosie, who he then dumped for Zara. Both Kendall and Rosie have now been dumped from the villa due to Adam ditching them at recoupling. Adam also had a brief dalliance with Megan. So, in the space of roughly two and a half weeks, Adam has made his way through four women. Rosie literally slayed Adam over his behaviour towards her, stating that he didn’t like being ignored or like how he was behaving towards her. Adam responded by telling Rosie that she was childish and that he didn’t need to reassure her. It’s hard to portray why his behaviour was wrong, in words, but he actively laughed in her face when she talked about her insecurities and has manipulated situations after betraying the trust of various women in the villa.

But is Adam’s behaviour really a sign of emotional abuse or is he just behaving like a lad? Some people have spoken out, saying exactly that: that he is a lad in a villa/reality show with loads of girls in bikinis and can do what he wants and who he wants. Other people have called Rosie out, saying that she is an embarrassment to women and needs to grow a backbone.

emotional-abuse

The simple fact is though, that if you are in a relationship and your partner starts to question your memory of events, trivialising your thoughts or feelings, or turns things around to blame you, it can be part of pattern of gaslighting and emotional abuse.

The level of control that Adam has over women in the villa is concerning and if he was to behave this way outside of an artificially maintained environment, then my personal view is that he needs to take a look at himself and his attitude towards women. Whilst Love Island is, ultimately, a game show, messing with people’s feelings in such an extreme way is not okay and gives a worrying message to viewers. It isn’t okay to gaslight someone, it isn’t okay to manipulate someone’s thoughts or feelings and it isn’t okay to belittle someone’s thoughts of feelings.

But my criticism of Love Island doesn’t end at Adam’s behaviour towards women in the villa. Something that was apparent even before the series started, when the line up was released was the lack of body diversity amongst the contestants. The men are all ripped and full of muscular six packs, clearly having spent hours and hours down the gym. The exception to this has been Alex, who works as an A&E doctor, and therefore doesn’t have the time to spend hours in the gym every day. Don’t get me wrong, he is still muscular but not to the same extent as the other men in the villa and he didn’t enter already sporting a glowing tan. Maybe this is why his coupling up process has been slower compared to other men in the villa or maybe it’s because he can withstand a conversation about Brexit, without worrying that we will lose all the trees and he doesn’t need to ask what an ear lobe is.

The lack of body diversity is apparent in the women as well. They entered the villa bronzed and toned, with no love handles when wearing bikinis and no obvious body “flaws”. If we are going to talk about stereotypical perfection, those women come pretty close. As someone who has struggled with body dismophia for years and years, watching Love Island can make me feel pretty crap about myself. I’m not tall with long legs, I don’t feel comfortable strutting around in minimal clothing and my body has more scars and flaws than I really want to think about and acknowledge. The women are all so very slim and have very few curves between them. In fact, the words of quippy contestant Niall, the girls look “like Instagram”, with criticism lamenting the distinct lack of body fat between them.

It would have been an perfect moment to show that love isn’t just about looks and that being beautiful doesn’t mean a body packed with muscles, being toned and having no space. However, now on series three and the casting remains an encouragement of a one-dimensional view on beauty and body types. Some people are slim. Some people are tall. Some people who have naturally flawless skin, but that isn’t a accurate representation of society and is teaching a poor message to more easily influenced younger viewers, who are being taught that beauty means tall, slim, legs up to their ears and hair down to their waist.

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The average woman in the UK in 2017 was a size 16 with a 34 inch waist and 36DD breasts. Whist the girls in the Love Island villa might have the latter of magazine perfect breasts, why is there not more representation when it comes to the former? Why, when the average body size is a 16, are the five women picked to enter the villa at the start of the series, all four dress sizes smaller than this and not representative of the average woman in the UK?

Don’t get me wrong, the women in Love Island are beautiful, each in their own ways. That I don’t dispute, but so are the hundreds of thousands of other body types that aren’t being represented on the show.

 

 

If you want more information about the warning signs of emotional abuse, you can contact the National Domestic Violence Helpline or Women’s Aid. Man Kind is a service for men, experiencing domestic abuse.

June Favourites

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Photo from spoonievillage calendar

 

Welcome to another monthly favourites post, looking at all the things I’ve been loving in June! At the time of writing this, it is exactly six months until Christmas and I’m not sorry to admit that I am somewhat pining for cold weather, fluffy jumpers and evenings with the fire lit. Hot weather doesn’t agree too well with my body. Anyway, on with my favourites for this month…

Books

Last month, I talked about I Am Thunder: And I Won’t Keep Quiet by Muhammad Khan and how much I loved it. It made me realise, however, how little I know about Islamic culture and a lot of what I did know, was based on new reports, which can give a very one-sided viewpoint. So, with that in mind, I decided to educate myself a little bit and find out more about Islamic culture, through the medium of books. After searching on Amazon, I came across Randa Abdel-Fattah, a litigation lawyer and human rights activist, living in Sydney. Her first book, Does My Head Look Big in This, follows the story of Amal, a sixteen year old living in Melbourne, who also happens to be a Muslim, struggling to honour the Islamic faith in a society that doesn’t understand it, following her decision to start wearing this hijab. The book is insightful, laugh out loud funny and at times, a bit of a tear jerker, and I’m not known for crying at books.

The second book by Abdel-Fattah that I read this month is The Lines We Cross. The book has a similar set up to Does My Head Look Big in This: it is set in an Australian secondary school and looks at how society perceives different cultures and religions, with anti-immigration rallies fighting against the raise of immigration into Australia. The flip side of this books looks at the story of an Afghani asylum seeker, who came to Australia on a boat, following besiegement of her home country and faces a negative reception from native Australians. Again, I would really recommend this book, despite it being a YA book, its themes are applicable to adults and teenagers alike.

A Quiet Kind of Thunder by Sara Barnard was another favourite this month. Steffi has been a selective mute for most of her life – she’s been silent for so long that she feels completely invisible. But Rhys, the new boy at school, sees her. He’s deaf, and her knowledge of basic sign language means that she’s assigned to look after him. Put simply, this book was beautiful and I loved the perspective from Rhys, looking at how deaf people feel and deal with the hearing world, as well as how Steffi manages her social anxiety and the assumptions made by people around her.

My final book favourite for this month is Because We Are Bad by Lily Bailey. Anyone who wants to know about OCD, and how to fight back, should read this book – it is an emotional, challenging read. Lily takes the reader deep into the heart of the illness but she is also a deft writer, and even the darkest moments are peppered with wit and wry observations. Having a diagnosis of OCD meant that, at times, this book was a little hard hitting but I appreciate Lily’s honesty and could really relate to aspects of the book.

Films/TV

 

Okay so I only have one favourite from film and TV this month which is…dun dun duuuunnnn…

LOVE ISLAND.

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I am obsessed with this series and the first thing that I do when I wake up in the morning is watch the previous night’s episode on catch up. My life simply would not be complete without the daily debriefs with friends. My standout moments so far are Hayley on Brexit (and trees) and Rosie’s sass towards Adam. I still haven’t got over Kendall being dumped from the villa and I don’t think I ever will.

Spoonie Favourites

 

The Body Shop has come up on top again this month, with their spoonie friendly makeup and cosmetic products. A lot of the time, I don’t have the energy to spend ages and ages doing my makeup of having a long beauty regime, but at the same time, I don’t want to get into a downward spiral of not making any effort. A complete life saver in hot weather has been their mandarin face mist, which hydrates skin and is makeup friendly. Great if you need a quick refresh without any effort.

Another life saver has been their aloe soothing moisture lotion, with SPF 15. If you’re anything like me, putting sun cream on your face will result in claggy and blocked pores and all the spots, so this is brilliant at protecting your skin without breaking out in twenty million spots. It’s designed for sensitive skin and is paraben and alcohol free.

Continuing on the theme of quick and easy makeup products, Soap and Glory Fake Awake has been a recent discovery and is brilliant at covering up my ever growing dark circles, with minimal effort and time.

 

What have your favourites been this month? I love finding out what other people have been loving and would recommend.

 

Let’s Talk: Mental Health

May is a busy month when it comes to spreading awareness. On top of it being Ehlers-Danlos Syndrome awareness month, it is also mental health awareness month. May 2018 marks a decade of me suddenly plummeting into a world whereby I am all to aware about mental health and mental illness. and I’ll be honest, I have been dreading it.

In May 2008, a very close friend committed suicide. I’ve spoken about the suicide of Nicola and another friend in another blog post, but given that it’s mental health awareness month and a decade on from Nicola’s death, I wanted to touch on it again.

Nicola and I met at nursery, she was confident, sassy and clever. She took me under her wing and made me feel better about being forced to learn French and German and having to eat quiche for lunch. Her sassiness only grew as she got older, she stood up for what she believed was right and was fiercely loyal and caring to everyone in her life.

I found out that Nicola had died shortly before leaving for school, when I was in year 10. It didn’t seem real, I can remember telling my friend, who I was walking to school with, and there was a level of disbelief from both of us: considering the news that I had just received, I was incredibly calm, stating that Nicola had died as though I was announcing that the sky was blue. My day carried on as normal for a few hours, before I crumpled and the news really hit. It seemed impossible that my sassy and fiery friend was no longer alive.

Nicola hadn’t said anything to anyone in her life which would have given us a clue of how low she was feeling. This remains that hardest thing for me, ten years one, I maintain that I should have seen something, I should have picked up that she wasn’t happy.  I spent weeks and months analysing our saved conversations on instant messenger to see if there was something I had missed. It reached the point where I made myself ill analysing these messages and I convinced myself that I was an awful person for not picking up on subtle changes on Nicola’s behaviour in the weeks leading up to her death.

Prior to Nicola’s death, I am not ashamed to say that I was fairly oblivious to mental illnesses. Yet, all of a sudden, I was thrown into a world where suicide, depression, anxiety and self harm became every day language.

This is where I am going to be really honest. I’m struggling at the moment and in the interests of transparency, I’m admitting that, although I find it hard to. I am open and honest about my mental health: I talk to my GP, therapist and physiotherapist about it and I talk to friends and family. But I normally do the talking after the blip/crisis has passed, not during the moments of feeling rubbish.

A lot of this is probably circumstantial. On top of the on-going issues relating to EDS, gastroparesis etc, I am normal person sick. It’s not the end of world, but it has made things considerably harder and physically, I have felt crap.  Lying in bed with all the time in the world has given more too much time to think. Turns out that being malnourished adds a lot of time to the whole recovery from illness thing. Who knew?

I just feel sad. And it’s okay that I feel sad. I am allowed to feel sad. Three years post-EDS diagnosis and I have more or less got my head around the genetic monster that has invaded my body. It’s still hard, sometimes it’s really hard but I’m used to it. It’s my normal and I am used to dealing with that normal. Throw in gastroparesis to the mix and yet again I am feeling like I have been chewed up by life, vomited back up, chucked around a bit and chewed up again.

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Illness has changed me as a person. I don’t mean that in a philosophical way, I mean it in a literal way. Before I became ill, I was punctual, social, confident and fairly carefree. Now that I am ill the best way that I can describe myself is flaky. I cancel plans more often than following them through, leaving the house alone makes me so anxious because I don’t trust my body and it feels like a military operation if I do manage to walk out of the front door.

I cancel plans because I’m sick, not because I don’t care or value my friends. I hope that my friends understand this, cancelling plans isn’t easy and I will often need to psych myself up to send that text because I hate letting my friends down or making them sad, annoyed or whatever. We are currently half way through May and this year I have missed birthdays, theatre shows, meet ups, planned days out, events and meetings all because I am too sick to leave the house, or I am exhausted, overly anxious or simply without the mental willpower to actual deal with adulting.

I have had enough. I have had enough of this life. I didn’t ask for this. No one asks to be ill but right now, I am struggling with huge and unexpected lifestyle changes that I’m having to go through. I feel so so isolated, more than I can put into words. Which is obviously going to impact on how I’m feeling.

I’m an anxious, sad, tired mess and I want to run away and escape for a while. Although the irony of that is that I’m not well enough to do that. Eye roll. I think the fact that the weather is improving is another factor which makes things harder.   I want to be outside, drinking gin in a pub garden, going for walks by the river, having day trips to the beach or enjoying the countryside around where I live. None of that is possible.

Much like chronic illnesses, you can’t see mental illnesses but it is something becoming more and more prevalent in society, however that isn’t something which is reflected by the government’s mental health strategy.

When given the choice between being right or being kind: choose kind.

R.J. Palacio, Wonder

My message here is simple: be kind to people because not being able to see their suffering does not mean that they are okay. Give your friends a hug because they might really need it. Ask your friends and family how they are and give them the time and space to talk. Text a friend who you haven’t heard from, for a while. Reach out, care and be kind.

 

 

EDS Awareness Month: A Week in the Life

EDS awareness

 

As part of Ehlers-Danlos Syndrome Awareness month, I thought I was share a snippet of what my life is like, in the form of a week in the life. This week is pretty average in terms of appointments and I’m not having a flare-up of symptoms, which has allowed me to carry in as normally as possible.

 

Monday

Today is mostly being spent recovering, following a weekend staying with my best friend. It wasn’t a wild weekend, of any sort, but unfortunately, I need a few days to recover after doing something. The travelling, in particular, has taken it out of me a bit and as a result, I am in more pain that normal. My right knee is very swollen, due to a mild dislocation from walking too much. My back is also more painful than usual: coach seating and underground seating isn’t ideal when you have back problems!

A while ago, I got myself a “Please Offer Me A Seat” badge, which is issued from Transport for London. This means that I’m able to ask people for a seat on underground trains when it’s really busy. The badge isn’t always well received: on the surface, I look like a healthy young adult, meaning that I have to tell people that I have a hidden disability. Sometimes, I can’t face having this conversation, so I stand. This makes me feel very dizzy and I am unsteady on my feet as it is. Throwing a moving tube train into the mix means that I resemble Bambi on ice. Eye roll.

Overall, today hasn’t been too bad in terms of dislocations. My fingers have been a bit free-spirited, as has my wrist but nothing too alarming.

Dislocation Count: Two

What: Right wrist and fingers

How: Cleaning my cat’s litter tray and making my bed

 

Tuesday

I have been dreading today. This morning I forced myself to go swimming, following advice from my physiotherapist to try and slowly introduce exercise back into my life, to see if it helps with my motility and general mood. Having endorphins zipping around my body has definitely made me feel a little bit more positive about life. Exercise is also allowing me to reconnect with my body and feel in control, at a time when I feel very out of control. My physio has given me some hydro-therapy exercises to do in the pool as well. with the aim of building my my core muscles and strength – my muscle mass as greatly reduced over the past few months, which has had a knock-on effect on how well I control my EDS symptoms.

This afternoon I had an appointment with gastroenterology. When I last saw my gastroenterologist, I took my Vomit Queen status to a whole new level, so I was aiming low in terms of this appointment: as long as I managed not to be sick, it would be a success.

In terms of managing not to be sick, the appointment was a complete success. In less positive news, I was officially diagnosed with gastroparesis this afternoon. I feel a bit emotionally numb about the diagnosis, it’s basically confirmed something which had been suspected since the beginning of the year but my consultant told me, very simply, that I will never have a normally digestive system again and aiming to live without vomiting is something that is incredibly unlikely. That sucks a bit, but I’m trying to focus on the fact that now I have a formal diagnosis, my medical team can start to formulate a clearer plan in how best to treat me.

Dislocation count: One (I think)

What: Rib(s)

How: Being sick

 

Wednesday

I had an appointment with my therapist over lunch today so we took advantage of the timing and did a supported meal. Well, she had a meal, I had a supplement drink, but that still remained a challenge, as I have hit a bit of a wall in terms of managing my intake through liquid nutrition drinks.

We also talked through my appointment from yesterday and how I’m feeling about what was said. I’m still feeling pretty numb about things, although the overarching feeling is relief more than anything. I suspect that in time, once the reality of the situation has hit home, there will be some tears and swearing. In general though, I’m feeling calm about things.

I went swimming again this morning. Whilst exercise is helping me mentally, I think that I might have overdone it slightly: my shoulder is very painful. I’m trying not to move my arm too much as movement makes the pain worse.

Dislocation count: Two

What: Thumb and toe

How: Picking up a box and walking

 

Thursday

Blood test this morning, to check my inflammation markers, as my last blood tests, run by my GP, showed that my C-reactive protein (CRP) was raised. I think a full blood count will also be checked; I normally have a full blood test every three to four months. As usual, there was a slight issue in finding a vein, I’m 99.9% sure my veins know when they’re able to be stabbed and go into hiding. I’m grateful that the nurses at my GP surgery know me well and remember that I’m a bit of a bleeder.

My aim had been to have a rest day today but that ended up not happening.

Dislocation count: One full and one partial

What: Shoulder and jaw

How: Taking a jumper off and yawning

 

Friday

Back again at my GP surgery, this time for an appointment with my GP. We talked through the medical side of my gastroparesis diagnosis – my consultant wants me to try some different medication, so my GP prescribed that today.

I feel really really tired today, partly because it is so warm at the moment. Not working does have a few benefits though and one of them is being able to sit in the garden and enjoy the rarity that is the sun in Great Britain. Lots of people have asked me how I keep myself entertained as I’m not working. The answer is simple: reading! When I don’t have the concentration levels of read an actual physical book, I listen to audiobooks.

Dislocation count: One

What: Shoulder

How: Taking a jumper off

 

Saturday and Sunday

Very hot again over the weekend. Hot weather is a blessing and a curse when it comes to having a chronic illness, my joints much prefer warmer weather to cold weather but POTS, vasovagal syncope and asthma are not huge fans and I need to be careful that I don’t become dehydrated. Having POTS and vasovagal syncope means that my blood vessels are a bit rubbish when it comes to doing what they should be doing. In simple terms, they are too relaxed and slow at contradicting and dilating, so blood pools in my frets and hands, meaning that my brain doesn’t get enough blood, which makes me feel dizzy and unwell.

On the EDS side of things, whilst my joints are less stiff and painful in warmer weather, I end up swelling up and this causes pressure on joints around my body. I have no idea why this happens, or if this is a common EDS thing…but basically whatever the weather and my body isn’t happy. Eye roll.

The hot weather has also played havoc with my sleep, so I’ll probably be spending next week catching up on my missed sleep over this weekend. People with EDS are likely to have adrenaline issues and that makes it really hard for us to fall asleep and stay asleep. And when we do fall asleep, we are prone to having crazy vivid dreams which feel like reality to us, combine that with being on medication which can cause vivid dreams and nighttime can be an odd time for me! I’ve also struggled with painsomnia over the past few nights. This is insomnia but with added extreme pain, meaning that I am in too much pain to sleep. Great fun.

Dislocation count: Three

What: Jaw (x2) and ribs

Doing what: Being sick

 

I hope this has given you an insight into what life is like with EDS. As I said, this has been a fairly average week for me, if you’ve seen out out and about, I won’t have looked sick, but lots of stuff has been happening that isn’t necessarily visible or obvious unless you know me well. Remember: you don’t have to look a certain way to be unwell!

 

 

An Open Letter to Theresa May

Dear Theresa May,

I’m going to start by explaining a little bit about myself. My name is Laura, I’m 25 and I live in South England. I have a degree in English Language and Education Studies; university was the best three years of my life, I worked hard and played hard. As a reward for all my hard work, I am now saddled with a hefty debt with Student Finance, which I’ll probably never fully repay. I like singing loudly in my car to S Club 7, reading, travelling, spending time with friends and I watch a little bit too much Four in a Bed. Much like any other 25 year old woman.

I also have Ehlers-Danlos Syndrome, Fibromyalgia, Reactive Arthritis, Asthma, various mental health conditions and suspected cyclical vomiting and gastroparesis. The past few months have been tough. I don’t want your sympathy but I have been very unwell. Because of this, my medical team and I decided that I needed to be on long term sick leave. This meant that I needed to turn down my dream job, in January, and drop out of my part time college course. I have been working since I was 16 years old; said dream job was working in children’s social services. I’m amazed that I got the job, not because I doubted my ability but because of all the cuts made to children and youth services. Going on long term sick leave is not a decision that was taken lightly. However, due to my illnesses, I am being sick numerous times a day. I haven’t eaten a proper meal since 1st February. I am malnourished, losing weight rapidly, exhausted, scared and my hair is falling out. Losing my hair has hit me hard, it’s part of my identity and it takes clever styling everyday to disguise the balding and thinning areas. This is on top of daily dislocations of my joints, widespread pain, low blood pressure and having a low immune system.

You won’t like this but I haven’t been earning since mid-November. So that means that I’m not paying tax or national insurance or my student finance debt. Sorry about that. Like I said, I’m very unwell. I don’t like it either.

After much discussion with people involved in my treatment and care, I made the decision to apply for employment support allowance (ESA). Only, where I live, this has been changed and now everything is under the umbrella of universal credit. I’ll be honest, I was reluctant to apply. I never thought that I would be in the position where I needed to apply for benefits but my health comes first. That was what I told myself. Media coverage of universal credit hasn’t been great, that also concerned me. My previous job meant that I had to help vulnerable young adults apply for benefits, through the universal credit scheme, so I was prepared for the hoop jumping and being on hold for hours to DWP. What I wasn’t prepared for was the feeling like an utter failure.

Today I had my first “commitment meeting”. I handed over my fit note, so there was no doubt that I wasn’t playing a game and pretending to be ill. The letter from my GP clearly explains my current situation. On the application, I stated my numerous health conditions and treatments.

It was explained to me that next week, I would have to attend the job centre again and I would be looking at how to write a CV with my new work coach. As I’ve already said, I have been working since I was 16 and this was alongside studying until I graduated from university. I have a CV. I don’t need help in writing one. But still, I’m going to have to do this to tick the box. We will then be doing interview skills. Interviews don’t concern me and I am proud of the fact that every interview that I have attended has resulted in me being offered the job. But I will listen as I am told about interview skills, so that the box can be ticked and I can be “helped back into work”. Apparently sickness isn’t a reason to be off work and instead it is down to my skill set.

I asked my work coach what would happen if I was ill and was therefore unable to attend appointments. He paused and then told me that if I didn’t give them enough notice, I was at risk of being sanctioned. I explained again that I am being sick numerous times a day, am malnourished and in a lot of pain. Sometimes, I can’t leave my bed because I am so sick. I can’t even make it to the toilet to be sick, so I have to use a bowel. It’s not dignified but that’s my reality. I’ve been in and out of hospital, needing to be given fluids and intravenous anti sickness medication to try and combat how dehydrated I’ve become. I’m genuinely very unwell, but I could be sanctioned for that. Hearing that has made me feel really anxious, which is likely to exacerbate my symptoms.

In reply to this, my work coach asked me “right. And when are you going to be better because we need a timeframe for getting you back into work.”

I’m going to put this very simply: I do not know when I’m going to be better. I don’t know if I’m going to get better. This could be my new normal. That’s a terrifying thought, but there’s not much I can do about it.

And instead of thinking that I should apply for universal credit, so that I have a bit of financial security, I am now questioning why I started the process in the first place. I feel like a failure because I can’t work. I feel ashamed that I am ill. You have made me feel like this. Your government has made me feel like this. I have been made to feel like a burden to society.

I want to be at work. I do not want to be on benefits, it was a hard decision to make. I want to be doing what my friends are doing and working 9-5 every day and then going out at the weekend. But I can’t and that is something that I have to learn to accept. But I can’t accept it because you and your government are discriminating against me because I am ill. I’m not lazy, work-shy or using avoidance tactics and all the other stereotypes that you seem to hold about people who need to be on benefits.

There’s still no guarantees that I will be accepted and given universal credit. I need to go through the work assessment and I could be declared fit to work.

So, please explain to me what I am meant to do? Please explain to me how you think I am meant to survive in this given situation? Do I sound like I am fit to work? This isn’t just an issue affecting me but I’ve had enough and I’m speaking up for all the people you are failing. Enough to enough, stop penalising us for being ill. This is not a lifestyle choice. You’ll probably never be in a situation whereby you need to apply for universal credit and all I can say to that is lucky you. But I really hope that you’re never placed in a situation whereby you are unwell and therefore unfit to work. Because it’s a living hell, made worse but intense feeling of failure and shame.

You’ve let too many people down.

Yours sincerely,

Laura

20 things I want to do when I’m better

It is fast approaching two months since my body decided to throw an epic wobbly. Two months of pretty much being bed bound, unable to eat, a lot of vomit and watching an unhealthy amount of Four in a Bed. I don’t know when I’m going to get better. I don’t know if I’m going to get better, or if this is my new reality. I still don’t know what’s actually wrong with me, although recent tests are pointing to a likely diagnosis: a diagnosis that scares me shitless. More on that if/when I get a formal diagnosis.

Anyway. Being bed or sofa bound has given me a lot of time to think, which is both a blessing and a curse. So these are 20 things that I would like to do when I’m feeling a bit more healthy.

  1. Drive. Whilst I can still drive, due to malnutrition and lack of energy, I have been relying on taxi-of-mum most of the time. I can just about manage driving myself to GP and physio appointments, but anything more than that requires too much energy. I miss my freedom.
  2. See my friends. My friends are dotted all over the county. And they are wonderful wonderful people who have made sure that I still feel part of society, even if I’m physically unable to take part. But I would like to be able to go and visit them, instead of relying on them coming to me.
  3. Go  to York. I went to uni in York and it was hands down, the best three years of my life. Four years on from me graduating and I still pine for my student days. York is probably one of my favourite cities and holds many happy memories.
  4. Have a spa day. My lovely friend Claire has also been going through a pretty rough time recently. Tough times have definitely made our friendship tighter but my God, we more than deserve a day of pampering!
  5. Eat a meal. I don’t think if this will actually be possible but I can dream! It’s weird, I don’t miss food, the thought of eating makes me feel incredibly anxious because I know it will result in me being sick, but I miss the idea of food.
  6. Start studying again. I was at college doing a part time counselling course but have had to defer until September. I’ve been looking at various online courses and I think I’m going to enrol in a child psychology course. Online learning will give me the flexibility to study when I feel well enough, hence reducing pressure and stress.
  7. Go back to work. In January I was offered my dream job and was over the moon. I have worked really hard to get to were I am now, in terms of work and realising that I had to turn down my dream job to focus on my health was devastating.
  8. Go shopping. Self explanatory really. I love shopping.
  9. Exercise. I can’t wait to go swimming and go to the gym and rebuild my fitness back up.
  10. Go to the theatre. Going to the theatre is one of my favourite things to do, especially going to see musicals. The to-see list includes: Everyone is Talking About Jamie, Les Mis, The King and I, Kinky Boots, Hamilton and The Lion King (again).
  11. Have a holiday [not counting York]. Realistically, I won’t be well enough to go abroad this year and I’m not sure if it’s something I’d want to risk, but a short UK break somewhere will do. Ideas welcome.
  12. Properly wash my hair. At the moment, all I can really do is a quick shampoo because anything else exhausts me. RIP my hair.
  13. Meet people. You learn who your real friends are during crap times and the support I’ve received from people on Instagram has honestly moved me to tears. I want to be able to thank them in person and give them a huge hug.
  14. Join a choir. This had been one of my new years resolutions and that hasn’t happened, for obvious reasons.
  15. Drink alcohol. Man, I want a gin and tonic so badly.
  16. Go for a walk by the river.
  17. Move out. This is perhaps a slightly ambitious hope, but I had been planning on moving out this year.
  18. Have a belated pancake day. I still haven’t got over the fact that I couldn’t eat pancakes on pancake day because of my vomit comet status.
  19. Get through a whole day without saying “I’m tired.” I’m a funny one…
  20. Take my mum out to say thank you for effectively becoming my full time carer. She’s a good’un.