We’re All Winners and Losers

Being diagnosed with a health condition, be that short term or long term, can make you re-evaluate your life and what you value as important. If you had asked twenty year old me, before diagnosis, I would have told you that my priorities focused around education, work and being self reliant. At that age, I was just starting my PGCE degree in primary education and I was very much striving to be an outstanding teacher. And I was, but as I became more unwell, being an outstanding teacher was coming at the cost of me constantly fighting infections, being really unhappy and stressed, not having a life outside of university and placements. But ultimately I was left feeling like my best would never be good enough, because my best was slipping because of my health.

After six gruelling months of teaching training, I made the decision to leave my PGCE degree, to focus on my health. At the time, it was a tough decision to make and it came down to how unhappy I was, more than considering my health, but as the months after university progressed, it became more and more apparent that my health wasn’t stable enough to cope with the demands that teaching expects of you. I still miss the idea of teaching, since I can remember, I had wanted to be a teacher so I felt very lost in a world where I was directionless.

Fast-forward a few years and whilst I might miss the idea of teaching, I am so glad that I stopped training before I was forced to stop. Since then, I have left another job because of the demands on my health, much of it due to working shifts and not being able to form a decent routine or get enough sleep. I thought that having official diagnoses would mean that managerial staff would be more understanding over my physical limitations, as well as the other odd things that my body can do as a result of EDS and its friends. I was perhaps naive in that thought: having a piece of paper stating that I have EDS doesn’t automatically ensure that people understand life with a chronic illness, more so when it is invisible.

Earlier in the year, I talked about being offered a job in children’s social services, in the early intervention team. It was my dream job and something that I had been working towards since leaving university. I had to kiss goodbye to that job because of how unwell I’ve been and I’m not going to kid myself into thinking that one day I will be able to go into that line of work. I really do hope that one day I can return to work but realistically, it won’t be in early intervention work because my body won’t cope with the demands, hours and stresses from the job. It’s not just my own health or life that I have consider, I need to think about potential families I would be working with. They need continuity and that’t not something that I can offer.

Similar applies to my inner dream of working in the police force. For all the reasons that I’ve stated about, it’s not a practical line of work and let’s be honest, I wouldn’t even get close to passing the medical tests.

I now spend my days writing, reading, sleeping and sometimes I go a bit wild and sit in the garden. I have to plan my life around when I have medical appointments to try and ensure that I’m as well as possible to attend them, but chronic illness is unpredictable so even the best laid plans go wrong when it comes to attending appointments. I speak to friends every day. But I still feeling lonely, even though I’m not alone.

I’m probably making life with chronic illnesses a bit shit and yes, at times, it is. But there are positives, even if they aren’t glaringly obvious.

I’ve met some really wonderful people who also have chronic illnesses. We are an odd bunch; we don’t do the conventional things like go to the pub or go shopping all day. You’ll probably find us in pyjamas, watching rubbish TV or having a group nap. But that kind of support is invaluable, as is the understanding. We are unshakeable, nothing is too gross to talk about and we can symptom share without sounding like we are losing the plot. Our medical knowledge is extensive: why ring 111 when you can consult a spoonie friend?

I’ve also developed a new gratitude for the days when I’m well enough to do something. Planning things takes a lot more effort and energy. Days when I can spontaneously leave the house and few and far between but when I am able to, it feels amazing and it leaves me feeling like a normal twenty something woman again.

Younger me imagined that I would be a teacher and whilst that hasn’t happened, I do feel happy being able to dedicate more time to writing and raising awareness about chronic illnesses. I’ve been given opportunities to write articles for charities or other blogging platforms and was recently nominated for two WEGO Health Awards, for best in show: blogging and rookie of the year. You can find out more and vote for me here.

awards_blog_(2) Awards_rookie_(2)

I’m getting opportunities which I would not be able to follow up on, if I was working, which is exciting and nerve-wracking at the same time.

That doesn’t take away the uncertainty or the fact that some days are just shit, but I find it is so important to try and focus on the things which are positive and make life easier to contend with. Health anxiety isn’t ever going to go away, scanxiety isn’t ever going to not be there and as much as I wish for it, I’m not never going to be 100% healthy and stable. I can’t go on week long benders but I’m a pro at watching a whole box set in a day. It’s the little things that make up life.

Effective Treatment Pathways For EDS

original-17147-1406585091-21

 

One of the hardest things that I have found, since being diagnosed with Ehlers-Danlos Syndrome is that there isn’t a clear treatment pathway or anyone overseeing my care. I am speaking as someone living in the south of England, this could well be different in other parts of the world and treatment various depending on where in the UK you live. This means that I don’t have anyone officially overseeing my care and treatment and instead, my treatment is scattered across numerous hospitals and departments and places in the country. I live in Oxfordshire, but receive treatment in London, as well as Oxford and I am under many specialists including physiotherapy, cardiology, infectious diseases and fatigue clinic, gastroenterology (in Oxford and London), rheumatology, urology, genetics and orthopaedics.

Very often, patients with EDS who are over the age of 18 have little or no care within the NHS. Healthcare workers and providers have no access to formal training, resulting in patients needing to self fund private care with the few specialists available, in order to manage their multiple,painful & life threatening disabilities.

I am really fortunate in the respect of being able to afford private treatment, but that cannot be a forever option because I don’t have an endless supply of money. I have to self-fund my physiotherapy treatment and have been for over five years, because on the NHS, I am only entitled to six sessions before being discharged. EDS is a chronic and incurable illness, which will not and can not be made better with six sessions of generic physiotherapy. My physio is amazing and was the first person who picked up on the possibility of me having EDS; I would be lost without her, I need regular and intensive physiotherapy to keep my body moving and to try and reduce pain. Think of it as a car needing a service or MOT to make sure it’s working, only I need physio every two weeks, not once a year.

Likewise with gastroenterology, I have paid to see a private consultant in London because I was receiving such poor treatment in Oxfordshire. My local gastroenterology consultant hadn’t heard of EDS and mis-diagnosed me to that very reason, and it was only because my mum and I pushed for further tests that I was finally diagnosed with gastroparesis. Currently, this is being “managed” through medication and dietary changes, only I am not getting better and the risk is, the longer I am left like this, the harder it will be to access other recognised treatments for gastroparesis because I won’t be well enough.

More recently, I ended up in urinary retention, which was later discovered to be due to a kidney infection. I have suffered for years with kidney infections, the first one being when I was on a French exchange, where I ended up in hospital. Unfortunately, GCSE French doesn’t extent to explaining to a doctor this awful and unexplainable pain, but I could tell them that I lived with my mum and rabbit and that my favourite subject was English and that I did the hoovering at home.

There is a link between EDS and urinary retention, which I tried to explain when I was in hospital, whilst having three nurses peering at me down below, trying to shove a tube into the urethral opening. It really is as fun as it sounds. No-one was particularly bothered about the fact that it was likely that this was happening due to the fact that I have EDS: in simple terms, because I have EDS, I am extra stretchy, which includes organs etc. The bladder expands anyway when it is full, but it had over expanded meaning that it then couldn’t contract and empty. Again, really fun.

I found that having a catheter fitted incredibly traumatic and I was all for yanking it out myself, after consulting Dr Google and Dr YouTube, about self removal of catheters. The trauma aside, I was also very concerned about the risks of having a catheter, as an EDS patients. Because our bodily make-up is different, there is an increase risk that once a catheter is fitted, the bladder ceases to function normally, therefore becoming dependent on a catheter.

There is no continuity of care. I am lucky to have a GP who is on the ball and supportive, but being under over nine hospital departments can become confusing, especially when people have conflicting views and options and more so when professionals don’t know of or believe in EDS. Trust me, it’s a real thing. Each time you meet a new professional, you have to explain everything because there is so much which could be as a result of EDS. Having a designated health care professional overseeing care would make a huge difference to patients like me, but also friends who I have met who also have EDS and other chronic illnesses.

Why am I going on about this? Because, simply, it needs to change. No other disease in the history of modern medicine has been neglected in the way that Ehlers-Danlos Syndrome has been.

A government petition has been set up, to try and improve healthcare for patients with EDS and more importantly, to improve on education of EDS and its different types, so that medical professionals are more aware of it. It is thought that only 5% of EDS suffers are diagnosed, with only 31% of people diagnosed in under ten years from when they first became symptomatic.

This has got to change. Please take two minutes out of your day to sign the petition. It might not seem like much to you if you don’t have a diagnosis of EDS or know anyone with a diagnosis, but for EDS patients, this could be life changing.

xtrust.jpg.pagespeed.ic.J-KYg4q5aF

May Favourites

hello-may.png

Welcome to another monthly favourites post, looking at all the things I’ve been loving in May! I can’t believe how quickly this year is going, I feel a bit rubbish that so far, I’m yet to really achieve anything in 2018, but the additional free time that I have had, has allowed me to discover new things, which I guess is a good thing. As you will have seen by the blog posts that I have been posting this month, May is Ehlers-Danlos Awareness Month, so some of my favourites from this month will be continuing with that theme.

Books

Like last month, I’ve mainly stuck to young adult (YA) fiction this month because I’ve been massively struggling with brain fog, which has affected my ability to concentrate and take in anything where I am required to think.

Last month, I received my first “payment” for writing, in the form of an Amazon voucher. In the grand scheme of things, this isn’t massively exciting but I’m pretty proud of myself. After some consideration, I decided to buy myself some books, because you can never have too many books. So, thanks to my Amazon voucher, I discovered Non Pratt, a fab YA author and I have made my way through Second Best Friend, Trouble and Unboxed. Second Best Friend and Unboxed were a pretty easy reads, for me, having only just over 100 pages, so I started and finished them both within the space of one afternoon. Neither of the books were especially stand out, although they were witty in places, but my reason for mentioning them is down to the fact that they are perfect for readers with dyslexia, with yellowed pages and a unique font. Not enough books are published with dyslexia suffers in mind but these books are accessible and age appropriate: struggling with reading does not mean that you should be stuck reading children’s books.

If you’ve read any of my previous monthly favourites blog posts, you’ll know that I am a huge fan of Cat Clarke, so it was a happy coincidence that I stumbled across Non Pratt, as a recommended author for people who love Cat Clarke’s books.

Speaking of Cat Clarke, her latest book We Are Young came out this month resulting in me sending a very excited message to Life of Pippa to inform her. I read the book in one day and I loved it. It’s a close call between We Are Young and Girlhood over my favourite Cat Clarke book. We Are Young was emotional, raw, powerful…I could continue, and I can’t wait until Cat’s next book is out. No pressure Cat!

One of my stand-out books of the year (bold statement, I know) has to be I Am Thunder: And I Won’t Keep Quiet by Muhammad Khan. Put simply: this book was amazing, literally the only fault that I could find with it is that it finished too soon. Despite this book again coming under the YA category of fiction, I honestly feel that everyone needs to read it. Muhammad Khan is a teacher in a British secondary school. He is also Muslim and writes about growing up as a British Muslim in the 21st century, having been inspired by media reports of the three Muslim girls who fled east London to join the so-called Islamic State. I don’t want to go into too much detail over the plot, however I will say that I learnt a great deal from the book and there needs to be more books ASAP by Khan. Go and buy a copy and educate yourselves.

Films/TV

I have finally watched The Greatest Showman, after months and months of wanting to see it. It didn’t disappoint and is now on my mental list of films that I will watch when I’m feeling a bit rubbish.

This month, I feel like I’ve gone back in time to the noughties and am reliving my childhood through films. I’m not ashamed to say that this month I have happily watched The Princess Diaries 1 and 2, Cheaper By The Dozen and Matilda more than once.

Since becoming unwell, I’ve been watching more videos on YouTube to keep me entertained. The Mandeville Sisters are great and I especially like how open they are around disability, mental health and their own body insecurities. The added bonus is that their videos are normally quite short so I don’t lose focus half way through.

Spoonie Favourites

This month, I had been planning on going to my second EDS meet up, held locally to where I live. These groups are run by EDS UK and I honestly cannot recommend them enough. However, my body had other ideas about going to the meeting and I was struck with a bad infection, but I wanted to mention the groups anyway, for people who might be reading this and are unaware of the groups. Living with EDS can be very isolating at times and whilst I’ve “met” plenty of people online with EDS and am very lucky to have my best friend, who also has EDS, the group has allowed me to connect with more people who live close to me. Having EDS is an on-going journey and I think I’ll always be learning about the condition and the best ways of managing it, but ideas and advice are shared in the group meetings and I’ve been given advice and support that I hadn’t considered myself.

At the start of this month, I was officially diagnosed with Gastroparesis. As my list of medical conditions grows and grows, I decided that the time had come for me to purchase some awareness cards, which I can carry around with me, in the event that I should fall ill away from home.

IMG_5394

These  cards are on top of a new medical ID bracelet that I purchased a few weeks ago. Funny story, I was a bit off my face on morphine at the time of buying my ID bracelet,

I didn’t realise that 1) it was an American site and that I was paying in dollars, not pounds, 2) it cost over $80 3) there would be a hefty customs  charge when the bloody thing  arrived in England. Don’t go shopping after taking morphine, kids. Although, as my friend pointed out, I managed to spell everything correctly and write the correct name for myself, so that’s one positive.

Whilst there is still a level of anxiety over leaving the house alone or being with people who don’t have a good understanding over my health, but the combination of the Stickman Communications cards and my ID bracelet has made me feel more at ease, should something ever happen to me.

Odds and Sods

Along with buying books with my Amazon voucher, I also bought a CD. Retro I know, but I prefer to listen to music in the car, as opposed to radio. Since seeing Pitch Perfect 3 in the cinema at the beginning of the year, I have re-discovered my love of The Cranberries, so I bought their greatest hits CD. The result of this is I will drive out of my way on journeys so that I can listen to more of the CD.

Towards the end of last month, I went to stay with my best friend for a few days. She had already introduced me to the wonderful pyjamas at Matalan, so when she suggested that we went on a trip to Matalan, I was not going to refuse. A girl can never have too many pairs of pyjamas. Sadly their pyjama range wasn’t that great but I fell in love with their home wear section and could have bought half the shop, had it not been for my small suitcase and needing to cross London to get back home. The quality of their products is so good and are fairly inexpensive. A quick Google later and I discovered that there’s a Matalan fairly close to me, which I have now visited a couple of times. A definite convert.

It’s been a while since I talked about how much I love The Body Shop, so I should probably rectify that. The Body Shop have recently brought out a new body lotion, which they are calling a body yogurt. I bought the almond flavour, as I’m finding that I’m struggling with sensory overload a bit and the almond scent is very mild and doesn’t invade my nostrils too much. Would definitely recommend.

My final favourite for this month is the general blogging community over on Facebook. Through this community, I have met so many like-minded people, learnt how to develop my blog and writing for an audience and had the space to talk about content and what people want to read about. Big thanks to the people who give up their time to facilitate the groups which allow this to happen.

 

Universal Credit Saga – Part Four

The issues regarding universal credit have been continuing behind the scenes, over the past few weeks.

At the beginning of May, I had another commitment meeting, with my work coach. During this meeting, I handed in my latest copy of my fit note (also known as a sick note), now stating that I officially have gastroparesis. My work coach asked me if I was feeling better, I explained that things were much the same, hence the fit note. He looked a bit confused at the fact that I wasn’t getting any better: chronic illnesses are clearly a complex thing for people to get their heads around. There isn’t any “soon” in terms of me getting well. He asked me again if I could predict when I would be better and able to start work, so yet again, I explained very simply that I have long term chronic illnesses for which there is not a cure. I can not pick a random date and hope to be better by then, because that is not my reality.

So, yet again we went round in circles, with my work coach saying that he needed to in-put a date about when I would be better and he reminded me that on the system, I am available to attend interviews immediately and I am available to start work immediately. The computer did not randomly select these dates, my work coach in-putted into the system that I am available immediately, despite the medical evidence from three different medical professionals stating otherwise and me arguing that. He wasn’t very impressed when I informed him that not only have I not been job searching, but I have not attended any interviews and have not made any process in terms of getting a job.

You guessed it: I explained, for what feels like the billionth time, that I am very unwell. I am being sick every day, I am malnourished, I am exhausted, emotionally I am really struggling and actually, in no way am I fit to be in work. Despite all of this, I still desperately want to be working, to the point that I am now having literal dreams where I have a job. I still feel like a failure and a burden on people around me. I feel like I don’t have a purpose in life and I don’t know why I bother getting out of bed from one day to the next.

By the time that I had finished explaining this to my work coach, I had lost my shit a little bit, although somehow I managed to hold back the tears. I am so fed up of constantly needing to explain myself and being open to judgement by a man who does not know me and patronises me by telling me that he understands. Unless you have actually gone through this living hell, please don’t tell me that you understand because you don’t. Until everything that you have worked towards and aimed for in life has been taken away from you and you don’t know from one day to the next how sick you’re going to be, or whether you’re going to need medical treatment, don’t tell me that you understand.

After saying all of this to my work coach, he promptly turned around and told me that he didn’t feel that he needs to see me again. Naturally, this news delighted me but I was a little bit hurt when he said that he “couldn’t help me”. Maybe start listening and offer some support, instead of making me feel like crap? Just an idea.

So, things were left, I wasn’t sure what was happening but due to picking up an infection, I wasn’t well enough to start chasing a system which is more broken than me. I had received a form, in the post, which I had to fill in to tell people about my disability. Thankfully, it was a similar form to the PIP form so it didn’t hurt my somewhat foggy brain too much. I filled it in and then received an “invitation” to attend a work capability assessment.

And then, on the 23rd May, everything changed with one single phone call. I had contacted my local MP the previous day, so let her know that I was still awaiting a reply from the DWP, regarding the letter that I sent to Theresa May and she replied, letting me know that she would chase it again.

I received a phone call from the Department of Work and Pensions, attached to parliament. I was given a formal apology for how I have been treated in regards to my universal credit application and for any “undue and additional stress” that my treatment has caused. All of my work commitments have been stopped: I no longer have to be spending two hours a day job hunting, I don’t have to keep updating my CV, I don’t have to attend interviews and it has been agreed that I am currently too unwell to be working.

anigif_sub-buzz-19841-1500486409-2

 

At last, someone with some common sense! I want to cry with sheer relief that finally, someone has listened to me. I’m also incredibly grateful that Layla Moran MP has given her time to fight on my behalf because I’m 99.9% sure that the common sense has prevailed due to her involvement.

think that I still need to go through the formality of the work capability assessment, but I’m not totally sure. Either way, I’m not too worried about it now. Prior to the phone call, I knew that I would be attending the assessment with my work coach having said that I should be working and I knew that it would have been a tough job to get the assessor to think otherwise. But now that it’s been recognised that not only am I genuinely ill but also too unwell to work, my understanding is that the assessment is more of a box ticking exercise, a bit like PIP assessments.

This doesn’t mean that I’m going to stop fighting. There is still so many things wrong with a system which is [in theory] designed to help people. But instead, it’s failing people. It’s making people feel worthless and that is what needs to change. A work coach’s opinion should not outweigh medical evidence. Medical fact. If you are presenting with three different types of medical evidence, all stating that you are unfit for work, it is not down to someone without a medical degree to decide otherwise. I’m not sure what training you need to adhere to, in order to become a work coach, but I am fairly certain that it is not five plus years in medical school. Maybe it’s time that the knowledge and expertise of medical professionals is trusted, in the cases of people presenting with chronic, long term medical conditions.

Universal credit still has three major flaws, and until they are addressed, my experiences will be mirrored in other people, which is not okay. People are waiting up to 12 weeks for their first payment. That is three months without any income, potentially risking rent arrears, debt, financial insecurity, missing mortgage repayments and not being able to buy essential daily living items such as food, gas, electricity and water. Universal credit is also bloody complicated. People don’t understand it. I don’t understand it and the majority of the time, I have not had a clue what is happening and if I have been entitled to money. Because of this, people are not getting the help that they need and deserve because the system is failing them. It is failing the most vulnerable people in society, the people how don’t have a voice.

That is why I’m using my voice because I refuse to be silenced by a broken system.

 

 

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.

17796403_624062341116354_3366928577308367279_n

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.

 

 

Universal Credit Saga: Part Three

It’s approaching three months since I first started the universal credit process, after being medically signed off work, on long term sick leave. In that time, I have had two commitment meetings with my work coach, which destroyed my confidence and made me feel like a failure and a burden on society. I have been told that despite medical evidence, written from my GP, who has known me 10+ years, stating that I am unwell, with suspected gastroparesis, I am available to have interviews immediately and I am available to start working immediately.  According to the NHS MUST Tool which measures malnourishment, I am at high risk of malnourishment, increasing my risk of sudden death. I’m sure that you can understand that hearing this information has been, in itself, traumatic.

Unknown-2

Despite all of this, I have been told that I have to think about how I’m planning to get back into work. Being off work is not a lifestyle choice, however it would appear that being unwell isn’t a valid reason to not be in work. I’m meant to be job searching every day. I’ve tried to do this, but the reality is that I am not well enough to be trailing through websites to find work and I also find it an incredibly demoralising experience, looking at all the jobs that healthy me could do, but are an impossible task for me when I am this unwell.

I’ve also been told that I need to be prepared to travel up to 90 minutes, when job hunting. When I was informed of this, I questioned it, due to the fact that I cannot travel for three additional hours in total. I have a car and I can drive, however, due to EDS, I experience joint dislocations daily. Driving long distances puts more pressure on my joints and I refuse to put myself or other road users at risk, by driving for longer and potentially experiencing joint dislocations. Can you imagine the potential danger if I was driving on the M40 to London and my knee or hip dislocated?

When I saw my work coach last week, to hand in my latest sick note, I had made the effort to look a little but more presentable, as in, I was wearing something other than tracksuit bottoms and had washed my hair. My work coach told me that I “looked better”. That’s the beauty of invisible, chronic illnesses: you can’t see them. It’s like being an idiot, you can’t always tell that someone is an idiot by sight, but that doesn’t change the fact that they are an idiot.

When I first started the Universal Credit application, I have no idea how difficult the process would me. It still makes me so sad and angry that disabled and vulnerable people are being failed by a system which is meant to be helping them. As I have said in previous posts, the whole application has had the affect of making me more unwell and dealing with the feeling of being such a failure has been hard to adjust to. The support that I have received from people has, honestly, been overwhelming. The Mighty have published my original open letter to Theresa May and I have been approached by other agencies and I am still deciding the best way of moving things forward in that respect. I know that I am just one person, except what I have experienced are not experiences that are isolated to just me. The system is broken and I am determined to fight the unjust nature of a system which should be helping, not penalising people. I’m not just fighting for me, I’m fighting for the people who are unable to fight themselves.

But I accept that I am just one person and I don’t have the power to make the changes that I desperately want to make.

So, where do I go from here?

As well as sending Theresa May a copy of my letter, I also sent a copy to Layla Moran, my local MP. I received a reply from the prime minister’s communications offer, telling me that Theresa May appreciated my letter (I think not), it had been passed onto the DWP and that I could expect a reply from them. As of the 24th April, I am yet to have a reply from them.

I had a more positive response from Layla Moran and would go as far as saying that her support and overall kindness made me a little emotional. She was very honest and fair in her responses to me: it is incredibly unlikely that the Universal Credit system will be abolished due to the fact that the Conservative government have invested millions and millions of pounds in the implementation and the rolling out of universal credit, as well as investing further large sums of money into “fixing” the problems that arose as a result of the system. However, oppositional parties have succeeded in managing to secure changes to the Universal Credit scheme, to hopefully make it fairer and less traumatic for genuinely disabled and vulnerable people who are in the process of applying. As well as this, I have been assured that all Universal Credit problems are noted. Stephen Lloyd MP leads on social securty benefits for the Liberal Democrats in Parliament and he routinely questions Government ministers about Universal Credit implementation. Layla is also in the process of chasing up my reply from the DWP.

Layla Moran also validated the fact that I’m unwell. I hadn’t actually realised that the demoralisation from the commitment meetings had resulted in me feeling like a fraud and not sick enough to not be in work. My work coach does not have a medical degree and has next to no medical knowledge, but his attitude, combined with the system in general, has made me question on more than occasion if I had the right to be trying to claim benefits, to financially support myself at a period of time when I am too unwell to work.

I am unwell. In fact, I am really unwell. I did not ask to be in this situation and more than anything I want to be working.

Today I received a questionnaire asking me about my health conditions and my answers on this will depend on whether I need a full work capability assessment. It’s a similar form to the PIP form, which my life slightly easier and I’m hoping that a combination or my answers and medical proof will be enough to evidence to show that right now, I can’t work.

It remains a slow and somewhat painful process but people are fighting to make the system more just. I’m still fighting and dare I say it, members of parliament are fighting too. It might not be front page news, but it is happening and I’m not giving up.

Guest Post: Deaf and Proud

Guest-post-for-Ranking-improvement

This month’s guest post is written by Nikki. Nikki is 60% deaf and relies on hearing aids and lip reading, she’s also uses sign language and her skills helped me through a sign language module at university! I’ll be honest, the majority of the time I forget that Nikki is deaf but she has taught me vast amounts about communication and what it’s like being part of the deaf community. You can follow Nikki on Instagram @knickers92.

 

If you would like to find out more about the deaf community, head over to the National Deaf Children’s Society, a charity which Nikki volunteers with, or the British Deaf Association and Action on Hearing Loss.

______________________________________________________

My name is Nikki or as Laura calls me the “Little Irish One”. I’m 25 years young and live in little Northern Ireland. This guest blog post is about growing up deaf in the world of hearing. I was the tiny age of two when my family were told that I had glue ear. For those who don’t know what glue ear is: it is where air cannot enter the middle ear. When this happens, the cells lining the middle ear begin to produce fluid. This is a runny liquid which can get thicker as it fills the middle ear making it difficult for sound to pass through the inner ear (National Deaf Children’s Society website).

From then on, I was getting ear infections and had many issues with my ears. I was in and out of hospital due to numerous appointments and surgery on my ears. They kept putting grommets in my ears to help with the fluid but unfortunately they kept falling out into my hair. They were only noticeable when my hair got brushed, and we realised that they had came out. In the space of six months, I received three sets of these but they didn’t do anything except making my ears worse so we gave up.

When I was eight, I kept coming home exhausted from school and all I wanted to do was sleep. I had no energy for anything. This only kept getting worse and we could not understand why. At the age of ten, I went into hospital for a skin graph to take place on my right ear drum,due to the fact that I had a hole the size of a malteser, on the skin of my ear drum. This involved cutting the back of my ear open. So you can only imagine my face when I was told that part of my hair would have to be shaved off to allow for access in the operation: no ten year old wants that to happen! This took place during my final year of primary school meaning that I missed three months of school, to allow me to recover from it.

I was told the operation can work for a long or a short period of time. My main worry about getting my surgery was that I couldn’t fly for three months afterwards and I was due to go on a big trip with my school to Amsterdam during that period of time. Thankfully it worked out that I was allowed to fly again, literally the day before I was travelling. I had been looking forward to this trip for a whole year.

After the school trip, I had finally moved to secondary school. I was nervous as I was moving away from all my primary school friends to a new school, where I knew no one else. I settled in well within my first day and had a lovely class. I was still getting exhausted after school and didn’t have energy for any homework. I went through my first two years of secondary school wondering why I was starting to struggle to hear the teachers even though I was sitting at the front in all my classes. I was missing the instructions and asking my friends what we had to do or copying from their books.

When I went into year 10 (England’s year 9) I was preparing myself to do exams to proceed into a grammar school. I was still only 13 and in March 2006, I had an appointment with the hospital to test my hearing whilst going through important exams to determine my new school. I was finally told I needed to wear hearing aids as my hearing wasn’t at a level whereby I could manage without them. We then realised this is why I was so tired all the time: I was relying on lip-reading to understand what was going on in conversations. Meanwhile I was a teenager, who within the previous four months, had been given braces and told I had to wear glasses. The hearing aids made me realise just how much sound I was missing out on but being a stubborn teenager, I refused to wear them and was embarrassed that I had them. I kept going through life missing information given out, during my GCSE years I was relying on friends to copy work from. I didn’t have any deaf friends or know of anyone my age that was deaf. I received no help from my school whatsoever throughout the four years of attending it.

I had just finished my GCSE exams when my social worker was trying to get me to join a charity where deaf teenagers got together and took part in loads of activities whilst socialising with one another. I kept saying no as I wasn’t interested in doing so. No one knew I had hearing aids, apart from my family, as I was able to hide it with having developed my speech before I lost my hearing and relying lip-reading all the time when socialising. I finally gave in when an interesting event came up which involved working with the BBC to make a movie with them. I had always loved acting and thought it would be a good opportunity.

When the week came I was nervous about meeting other deaf teenagers as I had never met another young deaf person prior to this. I was worried about communicating with others as I didn’t have much sign language knowledge and didn’t know how many signed or used speech. I kept thinking “how am I going to communicate with only knowing the alphabet and spell my name?” When I arrived everyone was so friendly and made me feel welcome. At this point, I was still refusing to wear my hearing aids even though I carried them with me. I made friends very quickly and realised how normal being deaf was to them. I learnt so much sign language that week, meaning that I could have a small conversation asking how are you as wellas learning random signs.

5cba6b5ed72193b5947c7a82deb66e9a

I kept in contact with everyone I met and they helped me, along with NDCS, to come to terms with my deafness. I returned to school, slowly wearing my hearing aids more and more. I always wore my hair down so no one asked me any questions about them. By this point, I was now in 6th form and we had to take up an enrichment period each week as an extra lesson to our studies. None of them appealed to me so I decided to ask the vice principle if we could offer sign language as part of our enrichment choices. Thankfully it was a popular request and the vice principle allowed us to go ahead with it and found someone to come and teach it. It has now been going for 10 years and getting more popular every year.

My confidence started to build and I kept attending NDCS events and meeting up with my deaf friends when we were free. I had a part time job working in a cafe and I had a badge for people to know I used lip-reading as communication.

The time came to move for university and I decided to attend York St John University. I couldn’t believe my luck when I was given so much help to make university easier and get everything out of my education. I was so lucky to have been given the best notetaker ever, Lyndsey, and to this day we are still great friends (sharing the love of disney). I was nervous about having a notetaker as I didn’t want them to make me stand out on my first day or have to explain why I had one. Thankfully Lyndsey was close to my age and I was so happy to have made a friend and the nerves of walking into lectures were made a bit easier.

Moving away from home I was not nervous about because I had met my house mates on a group chat before moving. We got to talk a lot before the big day of moving in came. I don’t think I could’ve asked for a better housemate than Laura. She understood my deafness and if any fire alarms went off she came to my room, making sure that I got out safe. We had the best three years of university looking after each other even when we had new houses and different housemates. We are now reaching the seventh year of friendship so she is stuck with me forever!

I was so lucky with the friends I made in university as we all looked after each other and still chat even though an ocean is between us. It never got old having to ask lecturers to ensure that subtitles were on during film or television screenings: we were like a big choir in the back shouting at them.

My course was Film & TV and in my second year I wanted to make a documentary about living as a deaf person in a world of hearing. I got talking to my group that I was in and they were interesting in helping me make it. Then, I spoke to another deaf student, who agreed to be the face of my documentary. It was to prove the stereotype wrong that people had about being deaf.

It took a lot of hard work and I was able to put my sign language to the test. I entered my film into a film festival, held in York and it got through to the 3rd round – I was happy that it got so far!

I am now living life with a degree and have brought sign language into my old college. I have lived independently, with friends in different country and I am now working as a Classroom Assistant helping other students. I love to travel but I have to keep flying time to a minimum of 3 hours to protect my ears. My hearing has, thankfully, not got any worse but it is sitting at 60% loss in each ear. I still worry about not hearing noises at night so like having company, so I know if anything was to happen, I can be woken up. I have been diagnosed with vertigo meaning I can get dizzy and light headed very quickly. I have major balance issues, I always joke about having a daily trip even if it is over air. I still struggle constantly with ear infections making it hard to wear hearing aids and unfortunately I keep getting allergic reactions to my hearing aid moulds. I have been waiting after a year and a half, with a lot of fighting, to try new moulds to see if they help. I am already on anti-hypoallergenic hearing aids so I’m hoping  that I can get sorted soon to ease infections and irritation to my ears.

There are still barriers between the deaf and hearing worlds but we are determined to break them down bit by bit. My biggest tip, when talking to deaf people is if they ask you to repeat something just do it instead of saying that it doesn’t matter. It can make us very angry!

To watch Nikki’s documentary, click here!