Guest Post: Gracie’s Gladiators

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This month’s guest post is written by Nattie. Nattie lives in the Midlands with her husband and two children, Grace and Amelie and her family is the perfect example of the wonder of blended families. Nattie works in with a PR company, specialising in event management. Life for Nattie’s family was turned upside down a few months ago, following Gracie being diagnosed with leukaemia.

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What can I say about Gracie? She’s 10 years old, absolutely gorgeous, funny, kind, intelligent, an animal lover, a fantastic big sister and a lover of hugs and cuddles. Gracie is also a cancer patient.

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Grace at the age of seven, blowing out candles.

Earlier this year, Grace was diagnosed with leukaemia. She had been poorly off and on since the winter and we, along with doctors, thought that it was a lingering viral infection. She was very tired, often coming home from school and falling asleep on the sofa until tea time. On top of this, she was also having a difficult time at school with friendships and she is starting to get anxious about moving to high school in September 2019. Nothing major but Gracie is sensitive and we know from past experiences that she doesn’t deal well with conflict or change, it emotionally drains her.

We were’t too worried. That is until her energy levels dropped further. Her teacher rang us to raise concerns: Grace was falling asleep in school and she wasn’t managing to take part in PE lessons, a lesson that she loved. In general, she was very wobbly and her balance was getting worse. She was sad, something very unlike Grace.

When Grace contracted her fifth cold since January, we felt that enough was enough: our previously healthy little girl was struggling and our instincts knew that something else was going on. We decided to keep her off school for a week. On day three of Grace’s week off school, she had a nose bleed, which would not stop. After the 15 minute marker, I ended up calling paramedics. Gracie was dizzy and faint and as the nose bleed continued, the colour was literally draining out of her. Deep down, I think I knew that I wasn’t calling paramedics just for a nose bleed, there was something bigger going on here.

This view was echoed by the paramedics, who told me, very kindly, that they felt that Grace needed to be in hospital now. Upon arriving, Grace had numerous blood tests and her obs and sats caused the doctors some concern.

After what can only be described as the longest wait I’ve ever endured, a paediatrition told me that I might want to consider calling my husband. I explained that he was due to pick up my younger daughter from school but would be here later. My world shattered a bit when I was told that David needed to be here now. Gracie was also asking for her daddy, in between sleeping and being confused. I rang David and told him to get to the hospital right now and then called on my fantastic friend, Essie, to ask her to collect Amelie from school and look after her until I knew more.

David arrived at the hospital and we were taken into a private room. This was the point where we were told that our beautiful little girl had cancer.

The prognosis was “good” we were told. If a child is going to get cancer, the cancer that Grace was suspected of having was the most easily treated, with high chances of going into remission.

In the space of a day, our lives went from talking about phonics and the girls’ homework, arguing over who was going to clean the guinea pig’s cages, telling the girls to eat their carrots, CBBC programmes and ballet classes to talking about chemotherapy, Hickman lines, Picc lines, steroids, bone marrow, blood transfusions and side effects.

Grace was very muddled when we told her. She understood that she was extremely poorly and would need to stay in hospital to get better. The extreme nature of her treatment plan was lost on her and we made the choice to only tell her what was completely necessary. She asked if her hair would fall out and we told her that it probably would. Grace new about the Little Princess Trust, thanks to Laura cutting her long locks a few years ago and she decided that she wanted to shave her hair ASAP and donate it. Her next question broke us, she asked in a tiny voice if she was going to die.

A ten year old child should not be having to think about their own mortality. David and I explained that all of the doctors and nurses were going to do everything possible to make her better and all she had to think about was fighting as hard as she could.

In the weeks since Grace’s diagnosis, she has had six blood transfusions and two platelet transfusions. She’s had three lots of bone marrow taken, four general anaesthetics, one of which was to place a line into her chest. She’s had more blood tests than I can count. She’s had different sorts of chemo, including having it injected into her spine, which made her very unwell. She’s been on steroids and is on a cocktail of medicines to try and fight this beast. She’s spent time in ICU  with suspected sepsis and has been so so sick. She has spent most of her time in hospital, only having half days at home here and there.

Side effects have included sickness and fevers. Her month and throat have been covered in large ulcers, making eating almost impossible. Grace has had headaches which have made her scream with pain. The combination of treatment and being bed bound has caused serious muscle wastage so now our once energetic and sporty little girl is confined to a wheelchair, on the rare occasions when she manages to get out of bed. The steroids made her angry and emotional, on top of making her sleep deprived and exhausted.

Then there was the hair loss. Nothing prepared us for that, even though we knew it would happen and had talked about it. Grace dealt with it better than us, simply rolling up the hair which had come out during the night and then saying “I think we should shave it because I don’t need my hair right now.” So that’s what we did. Grace has been rocking hats since then.

Amelie is struggling. At the age of seven, it’s a huge change to get used to and due to infection risk, she’s only been able to see Grace a handful of times. Our friends and family have been taking turns to move into the house, to look after Ame, to try and maintain some normality.

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Grace’s hair, ready to be sent off to The Little Princess Trust. Bye bye blonde locks. 

Ame and Grace’s school have been wonderful, fundraising to help us out as a family. Grace’s class write a letter to Grace every week to talk about what they’ve been doing. Even though she’s not at school at the moment, they still want her to feel included. Ame’s teacher, along with teaching assistants are giving her 1-2-1 time every day, to give her the time and space to talk. The nurses at the children’s hospital, where Grace is being treated, are also helping us to support Amelie and are helping her to understand what is happening to her big sister.

I’ll be honest, my reason for writing this is to ask for help. If you can give blood, please give blood. It takes less than an hour and will literally save a life. Prior to Grace becoming ill, I hadn’t ever stopped and considered how important blood donation is. The simple fact is, Grace would not be alive right now if it wasn’t for the wonderful people how have already donated blood and I wish that I could thank every one in person for saving my little girl’s life.

If you can’t donate blood, please consider donating to Rainbow Trust or the Children’s Cancer and Leukaemia Group – two charities which have hugely helped our family.

As a family, we are scared right now. It physically hurts seeing Grace so unwell and it hurts seeing Amelie so sad and confused about what’s happening to her sister. Forcing your child to go through procedures which you know are going to cause pain goes against everything you believe in, as a mother. But the alternative is so much worse. I hate seeing Grace in pain and scared. I hate hearing her cries but I hope that one day, she will understand that it was all necessary to make her better. We know that we have a long journey ahead of us but our unconventional little family will only get stronger during this fight. We are Gracie’s Gladiators and we will not give up the fight.

 

Universal Credit Saga – Part Five

Welcome to your latest round-up on all things universal credit. Grab yourself a cup of tea or something stronger and get ready to find out more on the mind-fuck that is applying for universal credit.

Last week, I had my work capability assessment. I had a bit of an anxiety meltdown the morning of the assessment, basically crying because if the assessment doesn’t go my way, I am royally screwed. I think a lot of my fear stemmed back to validation and the fact that essentially, my future financial security, sanity and hopes were pinned on the decision of a stranger, who had never met me and that decision would overrule any made my medical professions, who are involved in my on-going care. As a result of my meltdown, my mum offered to come with me to the assessment, but would stay in the waiting room. This eased my fears slightly and off we trekked to the assessment centre, in the pouring rain, with me feeling like I was going to vomit. Plastic bags were packed just in case, although vomiting everywhere would only have strengthened my case.

The waiting room was typically British, only with more mobility aids and a smell of damp because we all resembled drowned rats. Everyone was moaning because the assessors were running late: two people lost the will to live and rearranged their appointments and the children belonging to the family who (I can only assume) thought that a trip to a health assessment centre was akin to a day out at the zoo, tried to pretend that their lives hadn’t ended during the hours waiting for their dad to finish in his assessment.

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Anyway. I was eventually seen and was in and out within half an hour. I was asked how my disability impacts on my day to day life, was told that I looked tired (no really?!) and was then asked if I could perform various movements: reaching up, making fists and then touching the floor. Hypermobile me excelled at this – my shoulders popped in and out as I reached up and I freaked the assessor out with how easily I could touch the floor, with my palms flat.

And that was it. I went home, got into bed and slept a solid 14 hours before rolling out of bed and going to a GP appointment.

Fast forward to today and I had the unenviably fun task of going to the job centre and handing in my latest fit note. I thought that it was going to be a simple case of handing it in and then leaving, but oh no, today I had the added fun of not only meeting a new work coach (I think my last one binned me off, can’t think why…) and then going through all my work commitments. Now, at this point, I would like to remind you of the phone call I received a few weeks ago, whereby I was told that all my work commitments had been switched off because I’m not fit to be working or searching for jobs. It would seem that my joy over someone having some common sense was short-lived: my work commitments haven’t been switched off and actually, I am still meant to be spending at least two hours a day job searching and keeping my CV up to date.

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I am so bloody confused.

Things got even better when my new work coach asked me if it was “just sickness” that was stopping me from working. Oh how I laughed, because that is properly funny. I explained in very simple terms, that even a halfwit could understand, that gastroparesis means paralysis of the digestive system and symptoms include but are not restricted to sickness and nausea, extreme bloating, pain and heartburn. The consequences of gastroparesis include being malnourished, which I am. Due to malnourishment, I am so exhausted that I frequently cannot stand up without my legs giving way, I’m constantly freezing cold, my skin is an attractive creamy-grey, my eyes have bigger bags that I knew was possible and I have bald patches where my hair as fallen out. Not to mention how much this is impacting on my already fragile mental health.

Apparently, I should find out within four weeks what the outcome is from my work assessment. I’m really apprehensive about it and it shows how broken the system is when the opinion of someone who has had a twenty minute conversation with me and then asked me to show off some of my EDS party tricks outweighs the opinions of my GP who has known me ten plus years, my physio who is specialised in chronic conditions, my gastro consultant who is the top consultant at the hospital and my therapist who has known me for three years. How is that right? Or fair?

Today I was told that the job centre would have a supportive role, regardless of the outcome. Thus far, their input has not been supportive, it has made me more unwell, stressed, anxious, depressed and I have been so close to giving up.

I mean, should the result be that I need to be in work, I could appeal but I’m now getting to the point where I’m really losing my fight. I know that, deep down, I have to keep fighting this, for me and everyone else caught out by a completely unjust system, but right now, I feel so defeated. I don’t even feel angry regarding my appointment today, just sad and exhausted.

Forcing someone into work, against the advice of professionals, isn’t supportive. This system is not supportive. This system is failing.

Gastro-what?!

Over the past few months, I’ve talked quite a bit about my latest diagnosis of gastroparesis. A lot of the time, I forget that for most people, medical jargon and understanding over medical conditions isn’t common knowledge, so with that in mind, I thought that I would explain a little bit more about what gastroparesis is and how it affects me in day to day life.

Gastroparesis is a long-term (chronic) condition where the stomach can’t empty itself in the normal way. Food passes through the stomach more slowly than usual: essentially, the digestive system becomes paralysed and in my case, food doesn’t pass through the digestive system at all. It’s thought to be the result of a problem with the nerves and muscles controlling the emptying of the stomach.

Whilst my diagnosis of gastroparesis has come very recently, I have been symptomatic for a number of years but put the symptoms down to EDS or food allergies/intolerances. Symptoms of gastroparesis can vary but include feeling full very quickly when eating, nausea and vomiting, loss of appetite, weight loss or weight gain, bloating, pain and discomfort and heartburn. People can experience weight loss or weight gain, although weight loss is more common. These symptoms can be mild or severe, and tend to come and go.

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On top of the symptoms, there can be some pretty nasty complications as a result of gastroparesis. Dehydration can occur due to repeated vomiting, which can cause hospitalisation, stomach acid can leak out of your stomach and into your gullet, known as gastro-oesophageal reflux disease (GORD), malnutrition can occur as not enough nutrients are being absorbed and people can experience problems with their blood sugar levels.

There isn’t an obvious cause for gastroparesis, although it can be linked to diabetes, complications from gastric surgeries and links to conditions such as Ehlers-Danlos Syndrome.

There are various ways in which gastroparesis can be diagnosed. I was diagnosed following an urgent referral to gastroenterology and having a gastric emptying scan using scintigraphy. Put simply, during this test, you eat food containing a small amount of a radioactive substance which can be detected during scans. Gastroparesis is diagnosed if more than 10% of the food is still in your stomach four hours after eating it. Other diagnostic tests can include bariumX-ray and endoscopies.

Gastroparesis can’t usually be cured, but dietary changes and medical treatment can help you control the condition.. I have been advised to follow a FODMAP diet, combined with a diet which is designed for people with gastroparesis. Since February, I have predominantly been on a liquid diet, drinking supplement drinks and eating very bland and simple foods when I’ve felt able to. It’s boring but I don’t miss eating. I miss the idea of food and have, at times, had some weird cravings but when faced with a plate of food, I feel incredibly anxious which in turn, makes the nausea and sickness worse. Catch-22.

Day to day, my symptoms can vary. I can had days where I am sick numerous times and can’t move off the bathroom floor because I feel so ill and exhausted. Equally, I can go two to three days at a time without being sick. However, during those three days, anything that I try to eat, will remain in my stomach undigested, and I will then be very very sick. It’s unpredictable and can make planning anything really difficult. I don’t like leaving the house because I’m scared that I will be sick.

I’m also really really tired, likely to be down to the fact that I am malnourished and I’m not absorbing the necessary nutrients. My hair has been falling out and whilst this has slowed down a bit now, I have been left with bald patches, which I’m self conscious about.

And then there’s the bloating. I have lost a lot of weight since February but I look like I’ve piled weight on because of how bloated I am. Again, this makes me so self conscious. I hate seeing my reflection and do whatever I can to avoid mirrors or reflective surfaces. As much as possible, I live in jeans and baggy jumpers, although now that the weather is getting warmer, this is getting harder.

My treatment at the moment consists of dietary changes and medication. However, there’s no indication that either of these things are working; I’m not seeing my gastro consultant again for a few months and I’m worried that by the time I see him again, things will have deteriorated further. My biggest fear is that I end up in hospital, needing a feeding tube. Unfortunately, this is a likely out-come, and I feel like I’m just waiting for things to get worse in order to get a clearer treatment plan.

Like other invisible conditions, gastroparesis can be really isolating. You don’t realise how much society revolves around food. I’ve missed out of so many social events because they have been food-based activities. My friends get it, but at the moment, the idea of explaining to restaurant staff why I’m not eating is a huddle that I’m not quite ready to face. People also tend to feel awkward if they are eating a meal and I’m not. Nutrition is a chore and scary, knowing that there isn’t a cure makes this hard to deal with. It’s slowly becoming my new normal though and I’m sure I’ll get my fight back soon.

 

 

May Favourites

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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.

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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.

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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.

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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.