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.

 

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.

 

 

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.

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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.

Grieving For My Old Life

The grief cycle, following the death of a loved one is something that we are probably all familiar with. When the chronic illness diagnoses started rolling in and in the years running up to diagnosis, my life changed drastically. As a teenager, I was dancing (ballet and Irish dancing), playing netball and hockey, trampolining and either cycling or walking two miles, to and from school every day. On the surface, I appeared fit and healthy, but was constantly being labeled as clumsy, thanks to a catalogue of weird injuries, resulting in me annoying the school matron and many many trips to minor injuries and the emergency department.

As I progressed through secondary school, I was displaying more and more symptoms of Ehlers-Danlos Syndrome, but because no one was looking for it, I remained undiagnosed until the age of 22.

By the time I reached my GCSE years, I was fighting kidney, throat and ear infections more often than I wasn’t fighting them, I had periods of extended and unexplained dizziness and my joints (in particular my fingers and right knee) started to do their own things, with frequent dislocations and constant pain. Things went downhill further when I was in 6th form, I’ve genuinely “lost” about six months of my life, at the age of 18, because I was in so much pain and the combination of all the medication I was in and battling through A Levels, despite being told to take a year out. I can’t remember taking my final A Level exams, which isn’t a bad thing to be honest but I’ve lost other memories which would have been nice to have.

So because of all of this, getting a diagnosis of EDS and fibromyalgia at the age of 22 should have been a relief. In part it was, I finally had reasons as to why I felt so rubbish at times. I wasn’t imagining my joints popping in and out, it was actually happening. I wasn’t being pathetic when I was ill, I have a weak immune system. The pain wasn’t in my head, it was real. But at the same time as the rush of relief, being told that I have life-long illnesses which are probably going to get worse felt like a door being shut and locked on my past life.

I hadn’t ever considered the fact that I was going through a grieving process for my healthier teenage years. It wasn’t until my physiotherapist pointed out that I was going through a big adjustment in how I lived my life and that I needed to take time to come to terms with that and grieve. I struggled to get my head around that initially, I wasn’t dead and I wasn’t dying but I wasn’t going to get better.

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Personally, I haven’t found the grieving process for my old life linear. Some days I can be rational and logical about things, other days I can sit and cry and mourn, although the latter is becoming rarer.

I still struggle with the concept that I am not the same as my friends. Because of this, I can be reckless and not look after my body, which results in me ending up bed bound to recover. Sometimes, I can’t make sense of what is happening. I try not to go down the “why me?” route, but being the only person in my family with EDS is hard to get my head around. At times, I have pretended that I’m not ill and if I’m honest, that doesn’t tend to end very well. Sometimes I am numb to all feelings surrounding chronic illness, I like to think that it isn’t there. There are days when this thought process makes life possible: it allows me to get from one day to the next with as little fall-out as possible. Denial isn’t always healthy, but I see it as a basic survival method.

I’m not an angry person. It takes a lot for me to feel anger about a situation, partly because I don’t like the sensation of being angry. But, there are times when I could happily go on a rampage, screaming and swearing about how unjust everything is. Again, this links to the “why me?” thought process, something that can’t ever be answered. A sure-fire way of anger surfacing is when someone makes uneducated and insulting comments about illness. You think that I’m lucky having afternoon naps or needing to spend the day in bed?  It is natural to feel deserted and abandoned- the majority of the time, we live in a society that fears anger. Anger is strength and it can be an anchor, giving temporary structure to the nothingness of loss or overwhelming change.

Before being diagnosed, I found myself bargaining with myself, as a way of preventing the earth-shattering news of a label. I was in a very conflicted place, both wanting a diagnosis and fearing it. If I looked after my body better, it would stop me from being unwell: I would swim every day, eat clean, take all the supplements and actually listen to what my body was telling me. I wanted to go back in time and not dance as much or do sports which put unnecessary strain on my body. Finding fault in my actions and choices as a child and teenager were not the reasons that I developed EDS, I can thank gene mutation for that. Maybe things would have been different if I didn’t do ballet or Irish dance, or tap and modern dance as a child, then possibly my joints wouldn’t suffer so much as I got older. But I enjoyed dance so I try not to view it as something that I regret.

The depressive stage feels as though it will last forever and I think that at the moment, this is the stage that I keep revisiting. It’s important to understand that the depression around diagnosis is not a sign of mental illness. It is the appropriate response to a great loss or change and that does not make it any less valid. I’ve found myself withdrawing from life, left in a pit of intense sadness. I’m not dead or dying but a chronic illness can, at times, feel like a life sentence. The uncertainty is scary, I can’t predict from what day to the next how my body is going to feel or how much pain I might be in. It’s hard trying to make plans and then needing to cancel because I’m too unwell. I’m not a flake but sometimes it looks like that, more so because I don’t look sick, so there isn’t any obvious evidence to me feeling horrendous. It takes a very understanding family and friendship group to pull you through the depression.

Acceptance is often confused with the notion of being “fine” or “okay” with what has happened and the new diagnosis. This is not the case. I don’t think that I’ll ever feel fully okay about chronic illnesses. I don’t like my new reality but I’m learning to accept it. I’m learning how to make acceptance easier: having friends who are going through similar helps so much. They understand on a level that no one else does. I’m also learning that not everyone will get it and that’s more of a reflection on them than it is on me. When possible, instead of denying my feelings, I listen to my needs and I change and adapt my lifestyle. I am able to start living as well, with a different set of goals and dreams.

I am not the healthy person that I was ten years old, but slowly, I am adapting to that.

 

This blog post will feature on The Unchargeables

The Problem With “Me Before You”

Warning: this post talks about suicide.

I’m going to hold my hands up right now and apologise for the fact that this is going to be somewhat controversial. Me Before You is, in my opinion, a bit of a marmite book/film: you either love it or hate it. So, to all the fans of Louisa Clark and her bee tights, I’m sorry for my upcoming rant.

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Personally, I’m not a huge fan of the book or film. I read the book purely because there was a massive hype about it and I wanted to see what all the fuss was about. It’s not my usual genre, chick flicks that fail the Bechdel test are normally avoided, but enough said about my inner feminist feelings.

My issue with the book and film starts with the promotion in the run up to the film adaptation being released. The production team came up with the hashtag #LiveBoldly, whilst promoting the life of a previously healthy man, who became disabled (quadriplegic) following a road accident and was therefore considering assisted suicide in Switzerland. That in itself is a bit of an oxymoron: can you really #LiveBoldly when your aim is to die?

At this point, I want to make it really clear that I do not have an issue with assisted suicide or euthanasia.

But was the underlying theme #LiveBoldly or dying quickly? A disability is not a reason to not live a fulfilling life. Being disabled does not automatically mean the taking away of potential, hopes, dreams and aspirations. And leading a fulfilled life is something that is promoted so heavily in the book.

I have a bigger problem with the fact that Louisa was left a substantial amount of money in Will’s will. Will dictated that he wanted Louisa to swap her boring and stagnant life for one full of adventure and possibility, visiting all the places that she only dreamed of visiting.

Can a person only #LiveBoldly if they are able-bodied? So, whilst Louisa does get to go on her great adventure and experience a life full of excitement and opportunity, this is at the cost of another person’s life. The message that is being given here is that an able-bodied person’s life is valued more in society that someone who has a disability.

People with disabilities are not your reason to cry. People with disabilities are not to the pitied or killed off, in order to give a book or film an emotional ending. People with disabilities are not the reason for making a book a page turner.

The problem could be lessened, if not solved, by the presence of just one disabled character to provide some contrast and show that suicide isn’t the only option. Will is deemed to be a strong and determined man: if a strong and determined man can’t cope with a disability than how are mere-mortals meant to cope? In both the film and the book, Will is portrayed as isolated and as someone who is encased in negativity with very little hope. No wonder his only solution was suicide: this simply is not the reality of all people with disabilities and it’s giving a very one-sided view on being disabled. There are a disproportionate number of stories which relate to the “problem” of disability being “solved” by death. Books, TV and films seem to love the idea of people dying and gaining freedom,

The recent death of Stephen Hawking has showed how this view point has been carried into the real world. When he died, people were saying that he was now free from his wheelchair. The reality, however, is that Professor Hawking saw his wheelchair as something that gave him freedom, not something that restricted it. It allowed him movement, speech, the ability to teach, develop world famous theories, to be a father, husband, son and scholar.

Suicide is still a taboo subject. When able-bodied people talk about suicide, they are discouraged and offered preventative support. If an able-bodied person commits suicide, without the assistance of another person it is legal. When a disabled person has the consideration, the issue becomes more focused on autonomy and being of sane mind but very rarely is a person offered the same level of psychiatric support. Are disabled people less worthy?

On a more personal note, I have struggled with suicidal ideation off and on for a number of years. If I was to say that the reason behind those thoughts and feelings was because of X Y and Z from my past, I would be offered interventions, a crisis plan would be written and there would be a discussion about how I could be helped. However, and this is the important bit, if I was to say that I was feeling suicidal because of disability or chronic illness, suddenly, that isn’t as concerning. I have said that and I was genuinely told that it was “understandable”.

So yet again, we are faced with the question of are disabled people valued less? According to Me Before You, it suggests that and that is not a message that should be given through popular culture.

 

 

Universal Credit = Universal Failure

I don’t even know where to start with this. Grab yourself a cup of tea or a gin and get comfy because I’m going to talk about universal credit. Again.

Yesterday I had my second “commitment meeting” at the job centre. This is part of my application for universal credit, something that I opted in applying for after being put on long term sick leave due to my health. You can read about my first appointment in my open letter to Theresa May.

I had already uploaded my CV to my universal credit account, but I still had to sit through a lengthy explanation of how to write a CV. At this point, I was still fairly calm and wasn’t on the verge of killing anyone, so I politely reminded my work coach that not only do I have a CV, it is a robust CV and a CV that has resulted in me being invited to interviews, more often than not being invited for interviews. But this is a box ticking exercise, so I sat there as I was told about how to write a generic CV and upload it in job search websites. I pointed out to my work coach that actually, I tend to tailor my CV for each application and was unlikely to to uploading my CV onto job search websites, due to the nature of work I am hoping to do, health permitting and instead would be applying directly through charities or the county council. But what do I know?

On this note, my work coach then asked me what work I would like to do. I stated that I was offered a job in children’s social services but had to turn it down due to being sick numerous times a day, malnourishment and exhaustion. I’m getting bored of saying it, but it doesn’t seem it be sinking in. I said that I would like to work in children’s social services and explained what my previous jobs have been. I also said that I’m interesting in writing but I’ve been told that I can’t do that because I won’t earn any money. Okay then.

And then we moved onto to how I can prepare to go back to work. You guessed it, I reminded him about being sick numerous times a day, malnourishment and exhaustion. Like in my first commitment meeting, I was asked when I am going to be better. I. Do. Not. Know. But being ill is not an excuse to not be working, so despite the fact that I am medically signed off, we had to discuss all the ways that I can ensure that I’m work ready. I sarcastically said that maybe someone should find a cure for the various chronic illnesses that I have, but that was ignored.

So, I have to ensure that my CV is kept up to date. I mean, I am gaining so much experience which must be added to my CV when my head is hanging over the toilet and I’m getting nose bleeds due to the amount that I’m vomiting. But being ill is not an excuse to not be working. I also need to make sure that I am regularly looking at job websites. I started to lose it a little bit at this point. With a shaky voice, I asked why I would do that when I am medically signed off work. I so desperately want to be at work. I want to be earning a wage, like all my friends. But right now, that isn’t possible. Why would I essentially torment myself by looking at all the jobs that I want to do but am not well enough to do?

But I need to be work ready. Because according to my work coach, I am available for interviews immediately. I am available to start work immediately. Being ill is not an excuse to not be working. I explained yet again that I am being sick numerous times a day, that I haven’t eaten a proper meal since the 1st February and that I am malnourished.

And my work coach uttered the fatal words “I understand.” No. No you do not. I asked him if he was in chronic pain, every single day. I asked him if his joints dislocate when he takes his jumper off. I asked him if he was being sick so violently that he was passing out on the bathroom floor. I asked him if he was crying over a small packet of baby food because he was so terrified about consuming something, knowing that it would make him sick. I asked him if he had lost all of his dreams and aspirations.

By this point, I was crying. I was crying because I am so angry at the system. I was crying because I’m sick of every single day being a fight. I was crying because life is bloody unfair. Then I was crying because I was angry about the fact that I was crying, because it made me look weak.

I think the worst part of the meeting was when I asked him if people diagnosed with cancer would be asked when they will be work ready. He told me that cancer patients would be asked when their treatment was expected to finish. That makes me feel utterly utterly sick.

Even after going through the ordeal of these commitment meetings, I have to go through a work capability assessment, where someone who has never met me and is unlikely to have heard of anything that I’m diagnosed with will decide if being ill is a valid reason to not be in work.

Part of me wants to give up and spiral into debt. After my meeting yesterday, I got home and had to go to bed because I felt so ill. I’m already ill, but the system is making me more unwell. I should not be facing being in debt because the system which is meant to help me is making me more unwell. But that’s the reality.

Following the completely overwhelming response to my open letter to Theresa May, I posted the letter to her, along with a copy to my local MP, Layla Moran. I highly doubt I will get a reply from Theresa May; she simply doesn’t care enough to respond but I really hope that I will get a response from Layla Moran. I’m in the process of arranging to meet Layla at a constituency meeting to discuss this in person. I’ve been approached my a few organisations about having the open letter published, which I never ever expected, but it’s happening. A number of people have said that I should contact the media about this. I’m still deciding about whether I want to do that.

Fundamentally, I feel that I have to fight this. I have the ability and determination to fight this messed up system. Not everyone does and I feel that I have to stand up and fight for those people. This isn’t just about me anymore, it is for every single person who has been faced with such horrendous discrimination.

I don’t know how I’m going to fight this, it’s overwhelming and scary and I need your help. Please share this post on your social media platforms and if you feel able to, please speak up.

Illness will not silence me.

 

 

 

A-Z of mental health

A – Acceptance. Until you can accept that you are unwell, progress will be slow.

B- Belief. Not necessarily religious belief, although that helps some people. Believe in yourself. You will get there and you are worth the time, effort and energy which needs to be invested in you.

Today you are You, that is truer than true. There is no one alive who is Youer than You.

 

C – Coping. Find ways to manage your mental health and focus on the things that make you feel better. A cup of tea is the go to solution for the crisis team, although I’m more likely to curl up in bed with my cat, watching Waterloo Road.

D – Discrimination. Having a mental health diagnosis, can leave you open to discrimination, either through your workforce or through social harassment. You are within your legal rights to challenge this, should it happen and you are protected under the Equality Act 2010 (as long as your can prove that your mental health condition is a disability. The Equality Act protects you if you are discriminated against by employers, organisations that provide services and public functions, education providers (like universities and colleges), organisations that sell or manage property and private clubs and associations (Mind January 2015).

E – Equality. See above: never be sorry for something that is out of your control

F – Friends. Not everyone gets mental health, despite the fact that we all have it. The people who understand are the people who matter. Some people will stand by you, during the good and bad days and it’s a harsh learning experience that not everyone will be there at the other side of a bad patch.

G – Grief. Life changes with mental illnesses: it’s normal to grieve over how things used to be.

H – Happiness. You are allowed to have moments of happiness. That doesn’t make your illness any less valid or real.

I – Information. There were nearly 1.6 million (1,590,332) people in contact with specialist mental health services in 2012/13, the Office for National Statistics estimates that one in ten children and young people between the ages of 5 and 16 has a clinically diagnosed mental health disorder. Children and adolescents with poor mental health have relatively worse prospects throughout their adult life. For example, young people with a diagnosed mental health condition in adolescence are twice as likely to have no educational qualifications in early adulthood (Mental Health Network 2014)

J – Jokes. If, like me, you have a tendency to use dark humour to get through day to day life, so what? Although it’s best to work out when it’s appropriate to make jokes about your own death, it can freak people out.

K – Kindness. Be kind to yourself. Not everyday will be plain sailing and you will have days when you feel rubbish. Don’t beat yourself up. Getting to a place of longterm stability takes time, hard work and there will be slip ups. Allow for that. Put things in place which help you. Nothing beats a lazy day in your onesie watching back to back episodes of something on Netflix. Self care is such a buzz word, but until you learn to care for yourself, letting other people in to care for you is so much harder.

L – Little people.  They are young, easily influenced and need people to look out of them. One of my biggest fears is letting down the little people in my life. I don’t want them to know the heartbreak of mental illness and whilst I can’t prevent that from happening, I can show them the meaning of true love.

M- Medication. Little magic tablets which have literally saved my life. I’m not ashamed of taking psychiatric medication. It’s not a case of one tablet is suited to all: it’s taken a good number of years to right the right combination of medication and what works for me won’t necessarily work for someone else.

N- No. It is okay to say no if you aren’t up to something. There’s no shame in having a bed day. Self care is not selfish.

Grumpy Cat No - Imgur

O – Opportunities. If you had told 15 year old me that I would get some of the opportunities that I have experienced because of mental health, I wouldn’t have believed you. I was young, scared and had no idea how I was ever going to feel okay again. Having the chance to speak out about the stigma attached to mental illness is something I will always remain grateful for. Looking back, it’s pretty incredible that I have taken part in a debate in Westminster about the cuts to youth services, I have written articles for Sane and carried out research for other charities. People are interested in what I have to say and that is still somewhat surreal. I have been able to mentor young people and help them to gain a better understanding of mental health and most importantly, through blogging, I have given people, real people, who I mix with in day to day life, the space to talk about their experiences.

P- Pride. I’ve come a long way from the 15 year old who felt crippled by depression and anxiety. Aged 15, I knew very little about mental health, so I hadn’t twigged that I was struggling with mental illness. It hasn’t been an easy ride and I still have my struggles, but I’ve come on leaps and bounds in the last ten years.

Q – Questions. Ask questions about your mental health. You’re not going to know it all and professionals supporting you are there to (hopefully) provide answers.

R – Rest. Know when it’s time to stop and take a breather from the real world. It’s okay to need time away from the non-stop 21st century life. Turn your phone off, shut your bedroom door and allow yourself to just be.

S – Stigma. One day, I truly hope that the stigma around mental illness will lessen. I don’t think it will ever fully go, purely because it’s always going to be something that isn’t understood by everyone. Don’t be afraid to be honest and open, the world won’t change unless we make a change.

T- Talking. Fairly self-explanatory but by being open and talking about my mental health, I have helped myself and I think and hope that I have helped others. Mental health is not a conversation that should only be had on World Mental Health Day…Talk about it whenever you want to.

U – Understanding. Not everyone is going to get it. That’s a hard lesson to learn. But the people who do get it and understand are some of the most valuable people in your life.

V – Victories. Celebrate the small victories. And the big ones. You got dressed today? You’re fab! You left the house today? You’re winning.

W – Work life balance. The pressure of an increasingly demanding work culture is perhaps the biggest and most pressing challenge to the mental health of the general population. Make sure that you have downtime and do things for you, not for work.

X – Xeniatrophobic. Don’t like going to the doctor? There’s a word for that.

Y – You. No one knows you better than you do. Trust your instincts.

Z- zzzzzzz. Listen to your body and sleep if you need to sleep. We sometimes take good sleep for granted; lack of sleep can hugely impact on mental health. We all have our own ways of managing sleep, know what’s right for you.

stop-trying-to-make-sleep-happen