I Am Depressed

This isn’t going to be a particularly cheerful blog post, I will be talking about mental illness. If you’re feeling vulnerable, please read with caution.

I am depressed. By that, I don’t mean being a little bit sad, I mean full blown life altering depression, resulting in me being in hospital. People are using the term “breakdown” and to be fair, that’s quite an accurate description. I don’t feel ashamed about the fact that I am depressed.

Depression is ugly At times, it has felt like there’s been no way out. There aren’t any clear cut answers and it’s been more than a little bit chaotic. It is so much more than just being sad. It’s a feeling of endless hopelessness, combined with a fear that in unexplainable. It’s nothingness. It’s not knowing how to and not wanting to carry on.

Having said all of that, I consider myself as pretty lucky. When things started going wrong, my GP very quickly referred me back to mental health services, someone from the team rang me that same afternoon and the following Monday I had an assessment with the mental health team. I wasn’t expecting much, my previous experiences with the mental health team haven’t been positive, I’ve always been “functioning” meaning that despite any mental health battles, I’ve held down a job and coped (for the most part) without any intervention being needed.

This time, things were different. I was so depressed during the assessment, I could hardly speak. I couldn’t cry because I was too depressed to cry. Within ten minutes, a decision had been made that I needed to be referred to the day patient service at the local psychiatric hospital. I was shocked, scared but ultimately, numb, to this news because I honestly felt in a place whereby I was beyond help. I wanted to die. It’s a hard thing to admit, but I’m not going to shy away from it. By the end of the week, I had been assessed by the day service and then started the following week.

I’m now nearing the end of my two weeks as a day patient and will be transferring to a step-down service, run by the mental health team and Mind. Honestly? I am terrified. The walls of the hospital have been my safety and security. I’ve been under constant supervision and I’m scared about how I’m going to cope without that. But I’ll never know unless I try. I have got to try, for myself but also for the people who have had my back over the past few weeks and supported me when I have felt unsupportable. I’ll still have support from staff, albeit less intensively – I’m not expected to go out into the world alone just yet, thankfully. I could fall, I could fly, but I will not fail, whatever happens.

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There has been progress. Despite being physically unwell over the past few days (yay gastroparesis), mentally I’ve been okay. Last weekend I was counting the hours until I was back in hospital, I resorted to behaviours that I haven’t engaged in for years, and I mean years and the thought of getting to Monday morning and being back in hospital felt impossible. This weekend hasn’t been completely struggle-free but I’ve managed. I’ve used the advice and things that I had learnt in psycho-education sessions to keep myself safe.

Why am I writing all of this? Because I’m angry. I’m so bloody angry. I’ve struggled with mental illness for years and years, so maybe this was inevitable. But maybe not. The biggest trigger to this breakdown, or whatever you want to call it, has been my physical health. In the past 18 months, my life has changed drastically. I’ve gone from holding down a full-time job, saving to buy my own home and being a fairly independent adult to being on longterm sick leave, frequenting hospital more than I frequent pubs, with no real hope of moving out, being heavily reliant on my mum. Don’t get me wrong, I was still ill when I was working, but the diagnosis of gastroparesis and then Addison’s Disease has turned my life upside down. And I have had no support in dealing with that. There is a huge correlation between mental and physical health: you have a cold for a few days and mentally you feel like shit. Now imagine feeling shit, but more, every single day. With no escape.

Chronic illness, or any form, is life changing. But you don’t get the support in dealing with that. You’re expected to cope. Expected to just get on with it. That is not okay. I know of too many people from the chronic illness community who are now in hospital because of their physical health. I’m angry because I’ve been failed and I’m angry because so many other people are also being failed.

So yes, I’m feeling mentally stronger having been a day patient, but none of the underlying issues have been addressed. The trauma of my life changing so much in such a short space of time has not been addressed. No one has acknowledged the trauma of having to fight with medical professionals just to be believed. The medical traumas that I am unable to even begin to speak about are still being brushed aside.

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We have got to connect the dots between mental and physical health. One cannot exist without the other. I don’t know how to make the changes that need to happen. But I do know that this has got to be talked about more, to prevent more people from being failed.

September Favourites

Okay, so I know that I say this pretty much every single month, but how are we almost at the end of September?! I feel like I’ve blinked and nine months have passed without me realising. I could have had a child in this time. Obviously no children are planned any time soon.

Onto the things that I have been loving this month!

Books

For various reasons, I haven’t been able to do a lot of reading this month. I have just started reading the forth book in the Cormoran Strike series, Lethal White by Robert Galbraith. Crime thrillers are one of my favourite genres to read so I was really excited when I found out that this had been published. The books are complex and engaging and Galbraith (pseudonym of J.K. Rowling) has succeeded in making the characters real and believable. As much as I loved the Cuckoo’s Calling, the first book in the series, I think that Lethal White could very quickly become my new most loved book in the series. I can’t wait to sit down and read more!

TV/Film

People who know me well (actually not even well) will know that I love September for one big reason. Strictly Come Dancing is back!

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I am SCD obsessed and rarely miss an episode. If I miss an episode, it has to be for a very good reason and when possible, I will avoid all social interaction on Saturday evenings until the series ends. I’ve already got various opinions on the contestants, along with the professionals and Stacey Dooley and Faye Tozer are already my favourites.

I can’t write a September favourites blog post without mentioning The Bodyguard. Just wow. Being a huge fan of Line of Duty, also written by Jed Mercurio, I had high expectations of this series and I was not disappointed. It. Was. So. Good. Although not to be watched in the middle of the night when you’re home alone. The twist in the final episode was outstanding…is Julia alive or not?! Roll on series two.

Spoonie Favourites

I am not ashamed to say that with the more autumnal weather, my electric blanket has made an appearance. Autumn and winter are my preferred seasons, I love fluffy jumpers, scarves, Ugg boots and cosy evenings in front of the fire but my joints aren’t so keen on the colder weather, especially if there are any sudden temperature drops. My electric blanket is an essential piece of equipment not only to keep me roasty toasty but also to help save my joints from seizing up. My cat loves the electric blanket too!

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Since being diagnosed with gastroparesis, I have struggled more with musculoskeletal issues in my shoulders and neck, or as my phyiso refers to the matter “sick muscle problems.’ I mean, she’s right, if a little blunt. During a recent physio appointment, I was told that my neck felt like it had a concrete rod down my neck and it felt very similar to me. I already had a V-shaped pillow but it wasn’t very supportive, so I have invested in a slightly more expensive one, which gives more support. It hasn’t completely resolved the issues, but being able to sleep with my neck and shoulders getting more support has made a difference.

On the same theme, this month I also invested in a memory foam pillow. Where has this been all of my life? Because of above reasons, I need a firm pillow and the memory foam pillow has done the job. I love my bed anyway, but the new combination of a memory foam pillow, new V-shaped pillow and my electric blanket and I might just set up home in my bed.

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Odds and Sods

Since I was a teenager, I have struggled to varying degrees with stretch marks. Oh I know, the glamour, but I’m nothing if not honest. Skin issues go hand in hand with EDS, so I’m always going to be more prone to the little buggers and I know that so many people also have stretch marks. But that doesn’t change how they make me feel and how much they knock my confidence. After using a combination of bio oil and Palmer’s Cocoa  Butter and not noticing any difference, I did some research and came across Udderly Gorgeous Stretch Mark Oil by Cowshed. Whilst it was developed with pregnancy in mind, it has also had a good write up in improving stretch marks in general. Time will tell, but it smells so much better than bio-oil, is less greasy and is absorbed more quickly.

Knowing When To Take A Break

When I first started blogging, way back when, around 2011, my main focus was mental health and living with various mental health conditions. My blogging was very much anonymous; I was so scared about sharing with people who I knew in real life what I was going through out of fear that I would be judged or that they would think differently. University completely changed my perspective about mental health. I realised that it wasn’t a battle that I needed to fight alone and, more importantly, that other people also struggled with mental illnesses.

Talking about mental health is still something that I am passionate about. The mental health system in the UK is very broken and it is failing so many people. I can’t change that, but I can advocate for people and remind them that they aren’t alone. I’ve seen both sides of the mental health system: I’ve been a patient and I’ve also been the professional, supporting service users and fighting to get them the help that they need and deserve. The number of people being failed really worries me. It worries me personally, as I have been failed by the system and it worries me as an ex-professional who had to fight on behalf of vulnerable young adults, to simply access a referral into mental health services.

A lot has changed since 2011. I am (for the most part) open and honest about my mental health. But, saying that, my own mental health has been forced to take a bit of a back seat, especially over the last year, as my physically health deteriorated to the point that it took over my life. Things as I knew them suddenly became very different and it was something totally out of my control.

I have been having therapy for just over three years. For about two years of that time, I found it a really useful process and I was getting a lot out of the sessions and was learning new coping strategies that I could implement into my daily life. As my physical health worsened, this changed the way that I worked with my therapist. I would frequently turn up to sessions so exhausted that I couldn’t function, a large chunk of the session would be a debrief on the week’s hospital appointments, whether I’d stayed out of hospital, if anything drastic had changed. Without realising it, my therapy sessions (which I am paying privately for) have become a space for me to talk about my physical health, completely ignoring my mental health. My physical health is important, it impacts my life daily and at the moment, it is very unpredictable. But my mental health is also important and I have been neglecting that and the reasons why I am in therapy in the first place.

So, I guess you could say that I’m going round in circles. Therapy can’t cure my physical illnesses and I am doubtful that it can fully “cure” my mental illnesses. It can, however, give me the skills to cope, manage, survive and pick myself up again when things go wrong.

During one sleepless night (painsomnia is fun) I ended up thinking about what I am getting out of therapy. The answer was not much. Because I have been so focused on trying to stabilise my physical health and was fixated on trying to avoid hospital, I hadn’t realised that I had slowly and silently slipped backwards in terms of my mental health. I have been anxious, really anxious, probably 90% of the time. This has manifested in an increased number of anxiety attacks, nightmares, my heart feeling like it’s going to explode and so much sweat. Gross but factual. My safe haven of my bed has been where I have wanted to hide much of the time and it has taken a lot of effort to go against that instinct. I guess I can be thankful for the many hospital appointments that forced me out of my bed, my pyjamas and my house.

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For me, anxiety goes hand in hand with OCD rituals and again, without realising, they have also worsened and I am more dependent on them, in order to feel safe and less anxious.

Relapses happen. They are part of life and I know that being able to recognise this slippery slope is positive.

This week I made the decision to take a break from therapy. Not ideal, you might be thinking, given what I have said above, but I think and hope that this is also a positive step. I was honest with my therapist and said that I felt that the sessions were becoming too focused on EDS, gastroparesis, Addison’s and all the other fun things that my body does. I am not addressing the reasons that I am in therapy and that has been the case for too long. Those reasons aren’t ever going to diminish or become less problematic if I continue to ignore them, either consciously or subconsciously. I am a pro at changing the subject and I think my therapist needs to be stricter at forcing the difficult conversations because I can’t do it for myself. It won’t be a long break and it was agreed on the condition that I made contact with my therapist if I needed to.

I’ve been here before and I know the feeling of “stop the world, I want to get off” will pass. As anyone with a mental illness will confirm, sometimes you will have days when you feel on top of the world and able to take anything on. Other days aren’t quite so great and you end up feeling frustrated and demoralised about life. And moments when I feel like that are when I need to take a break and re-evaluate things, without piling hideous amounts of pressure on myself.

For much of 2018 I have felt like a massive failure. I haven’t achieved my goal of moving out and as the year has progressed, it has become more and more unlikely that I will be able to fly the nest any time soon. I am crazy jealous of people who are living independently. Rationally I know that I need to be at home, financially I can’t afford to move out and I also need too much help with regards to my health to live alone.  I’m not working and the whole universal credit process destroyed my soul a little bit, so much so that when I get an email or text from them, I want to be (and often am) sick. Classy. But I know that I can’t work, even the pleb who met me once for my fitness to work assessment agreed with that. I’m not well enough, but I am taking tiny steps forward to engage in the workplace again.

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I used to hate it when people told me to be kind to myself. My counsellor at university ended every session by saying “go well out there” and looking back, that was possibly the best thing anyone could have said to me. I’m not going to succeed in everything I do, life doesn’t work like that. All I can do is try my best and “go well.” And yes, I need to be kind to myself, particularly when the world doesn’t feel like it’s being very kind.

Effective Treatment Pathways For EDS

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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.

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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.