April Favourites

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A slightly delayed monthly favourites blog post for April, if you’ve read my recent post about depression, you’ll know what’s been happening in my life and where I’ve been. Anyway, that aside, April has been and gone and it feels like 2019 is flying by, or is that just me?

Over to what I’ve loved in April.

Books

My standout book from April has got to be Internment by Samira Ahmed. I’ve been telling anyone who will listen to me to read this book. Set in a near future United States of America, seventeen year old Layla is forced into an internment camp for Muslim-Americans along with her parents. Layla begins a journey to fight for freedom, leading a revolution against the internment camp’s Director and his guards. This book is chilling and powerful in equal measures, mostly because the plot could become a very real prospect if social divisions escalate. The real terror of Internment is how close it is to the present-day United States, with the narrative making it clear how few additional nudges are needed. In addition, there is a deep-running theme about complicity and about how not standing up to something can be the same as letting it happen. This is not only how non-Muslim people either allowed or actively voted for the laws and internment camp seen in the novel, but also how people can turn on those who rebel.

Another bookish favourite from April is My Sister, The Serial Killer by Oyinkan Braithwaite. The title makes the book pretty self-explanatory. Korede’s dinner is interrupted one night by a distress call from her sister, Ayoola, she knows what’s expected of her: bleach, rubber gloves, nerves of steel and a strong stomach. This’ll be the third boyfriend Ayoola’s dispatched in “self-defence” and the third mess that her lethal little sibling has left Korede to clear away. She should probably go to the police for the good of the menfolk of Nigeria, but she loves her sister and, as they say, family always comes first. This book was addictive, leaving the reader with the question of who is more dangerous? A femme fatale murderess or the quiet, plain woman who cleans up her messes? I never knew what was going to happen and I love that in a book. Highly recommend, although the Nigerian language intertwined throughout the book got a little confusing at times.

Me Mam. Me Dad. Me. by Malcolm Duffy is a humorous and heartbreaking debut novel with the fresh, funny, honest voice of a 14-year-old Geordie lad recounting the trials and tribulations of family life and finding first love. The literacy ward nominations alone for this book speak volumes: Waterstone’s Children’s Prize 2019 Shortlisted, Sheffield Award 2019 Shortlisted and Carnegie Medal 2019 Nominated to name a few. Danny’s mam has a new boyfriend. Initially, all is good – Callum seems nice enough, and Danny can’t deny he’s got a cool set up; big house, fast car, massive TV, and Mam seems to really like him. However, cracks begin to show in Danny and his man’s new life and they cannot be easily repaired. As Danny’s life spirals out of control, Danny does the one thing that he can think of and find his dad. Malcolm Duffy has done an amazing job with his book which will appeal to so many readers on so many different levels.

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Films/TV

Having spent the majority of my time at home (in pyjamas) you would think that I have loads of film and TV recommendations. However, I am a creature of habit and will happily rewatch Happy Valley, Line of Duty and Silent Witness, to the point that I know the plots of by heart. That said, I finally finished watching Broadchurch, which I started watching last year but then never finished. Honestly, by the time I got half way through series three, I was a little bored but it still provided plenty twists and turns that I wasn’t able to predict.

I also sat down and finally watched The Hate U Give, based on the book by Angie Thomas, of the same name. I loved the book more than I can put into words, I very rarely cry at books or films, but both the book and film has me crying in sadness and anger at the unjustness of the situation being played out. Sixteen-year-old Starr lives in two worlds: the poor neighbourhood where she was born and raised and her posh high school in the suburbs. The uneasy balance between them is shattered when Starr is the only witness to the fatal shooting of her unarmed best friend, Khalil, by a police officer. Now what Starr says could destroy her community. It could also get her killed. Inspired by the Black Lives Matter movement, this is a powerful and gripping film about one girl’s struggle of justice and equality.

After a lot of deliberation, I watched The Disappearance of Madeleine McCann, after a number of people recommended it to me. I’m not sure how I feel after watching it, it certainly showed various things in a different light and it gave a balanced account of what happened. That said, it didn’t offer any new facts or insights. Unsurprisingly, The McCann family refused to take part in the series and asked those around them not to either, which leaves me feeling that the documentary itself wasn’t a necessity, more recapping of an awful situation that doesn’t have an end.

Spoonie Favourites

I’ve been really struggling with restless legs/arms/body and muscle spasms, due to some of the medication I’m currently taking. I was given a couple of suggestions of things to try, aside from the midnight baths and diazepam which I had been relying on (not an ideal combination…I don’t advise it!), including a weighted blanket and various prescribed medications. However the suggestion that came up the most was magnesium, specifically magnesium oil spray, which you spray on the soles of your feet. It hasn’t completely cured the spasms but it has made a difference.

What did you love over April, I love hearing your recommendations!

 

Universal Credit Saga – A Year On

So it’s been one whole year since I was signed off work and started the sole destroying task of applying for Universal Credit. If you’re a long term reader, you might remember my Open Letter to Theresa May, I was really reluctant to apply. I never thought that I would be in the position where I needed to apply for benefits and honestly, I felt a level of shame over applying. My usually proud front was shattered by admitting that I needed this financial help, but my health comes first. That was what I told myself.

And my God, was my front shattered. I had opened up about my health in a way that I never had before. I was begging strangers to take pity on me, in the hope that the application process might be made a little bit easier. Only, they didn’t take pity on me. Honestly, I felt a bit like a criminal. I was warned about sanctions if I couldn’t attend appointments if I was ill. Let’s remember at this point, that the whole reason that I was applying was because of how unwell I was and still am. I was asked when I was going to get better, because the government doesn’t seem to understand the concept of chronic or life long conditions.

I felt and still feel like a failure because I can’t work. I feel ashamed that I am ill, even though now, a year one, I am able to accept that life’s a bitch and doesn’t always go the way you want it to.

Anyway, after the initial stress of the first few months of the application, things calmed down a little. I had my work capability assessment and thankfully, the person leading the assessment had an ounce of common sense and agreed that I wasn’t fit to work. That was until. October, when my payments were stopped for no reason. I have real anxiety issues about going into the job centre because of the bad experiences that I’ve had there, but nonetheless, in I went to find out what had happened. I explained, very calmly, to the work coach that my payment hadn’t gone in and as a result, I was overdrawn. I kid you not, the work coach shrugged in reply and told me that “these things happen”. There have been admin issues over the past few weeks, which has meant that not all payments have gone out on time. Admin errors happen, what I am more frustrated about has been the sheer lack of communication, so I had no idea that this was the case.

I told the work coach, again, that I was overdrawn as a result of the payment not going on and was told that I would benefit from seeking advice from the Money Advice Service. The Money Advice Service is an organisation established with cross Government party support, that provides free and impartial advice on money and financial decisions to people in the United Kingdom. It is a really useful service, but not a service that I required at this time, because when my payments go in, I am very able at managing my own money. It’s very hard, however, to manage your money when you’re not receiving the money in the first place.

This leads me to now. I think maybe that I had become a little bit complacent when it came to Universal Credit: nothing has happened to offend me in a few months and I thought that things would remain that way. I went into the job centre to hand in my latest fit note and was told that my payments had been stopped and that I was being sanctioned.

 

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I cried. A lot. The past month has been awful, I’ve been really unwell (more than normal) and the last thing I needed was finding out that my financial security was at risk. The person I saw at the job centre wasn’t able to reinstate my payments and was only able to tell me that it looked like I’d missed a phone call. I rang the Performance Centre and was told that my payments had been stopped because I’d missed a review phone call. Yes, I had missed a phone call, but I had also notified them that I was in hospital at the time of the phone call and therefore unable to take the call, and please could it be rearranged.

I then had to wait a week for the actual review phone call. There was me thinking that it would be to ask me if there had been any changes to my health etc but no, they wanted to know if I was still single (as a pringle, for what it’s worth) and if I had any savings or investments. My favourite part was when they asked me if I was receiving a World War Two pension. Dude, I wasn’t even alive then…

Whilst none of this is especially dramatic, it really knocked me. There isn’t one single aspect of Universal Credit that is easy to understand or logical. It baffles me that they have such poor customer service skills, when they are dealing with some of the most vulnerable people in society. There have been so many occasions over the past year when the process of Universal Credit has made me more unwell than I was already. It really seems like the government will jump upon the smallest thing as a reason to stop payments.

Until that changes, people will still be failed. They will still be struggling to pay rent and afford food. They will still feel penalised for being unwell and genuinely unable to work and I’m ashamed to live in a country whereby the government think that is okay.

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Things I’ve Learnt: 2018 Edition

I’m not exaggerating when I say that 2018 has been really tough year. I went into the year high on the news that I have been offered my dream job and my main aim for the year was to buy my own house and live independently. The reality has been very different. By the end of January it was becoming clear that I was very unwell, meaning that I had to turn down my dream job because I simply was not well enough to even get out of bed, let alone work in social services. With my sudden unemployment, I was forced to take on the benefits system, which was utterly soul destroying. My dreams were shattered further when I realised that not only was I too unwell to move out, I also couldn’t afford it.

 

  1. I know my body better than anyone. The NHS is fantastic and I wouldn’t be alive without it, but the nature of living with rare conditions and being medically complex means that I need to advocate for myself and education medical professionals, because very often, they aren’t taught about the conditions I have.
  2. I have got to fight, even on the days when I’ve lost all hope. Don’t get me wrong, there have been days when all I’ve wanted to do is hide in bed and that is okay. But things won’t ever move forward if I don’t speak up and demand the treatment that I need.
  3. Friendship is a two way thing. Toxic friendships aren’t helpful and I’m better off without some people, as painful as that is.
  4. Not everyone will understand. The nature of invisible illness is that you can’t see it. A lot of the time, I look pretty healthy but that doesn’t mean I am well. People often say that I look well and therefore assume that I’m better or cured. Unfortunately, I’m never going to be cured and just because you can’t see what’s going on inside my body or the amount of pain I’m in, it doesn’t mean that I’m well. Over the years I’ve been given well-meaning, but quite frankly stupid advice about how to make myself better, ranging from eating quinoa, to drinking beer, to following a clean and plant based diet. It takes a lot of effort to not roll my eyes to these suggestions.
  5. My hopes and dreams will change. Unlike most healthy twenty-somethings, I don’t dream of traveling the world or getting a promotion or having an amazing holiday. My hopes are simple: to stay out of hospital and for my other sick friends to be as okay as possible.
  6. I can never have too many books. At the beginning of the year, I set myself the challenge of reading 52 books over 2018. This is one thing that I succeeded with and my book collection is slightly growing out of control.
  7. It’s okay not to be okay
  8. I’m allowed to be terrified. This year has thrown many new things at me, that I never expected. My new normal has taken a lot of adjusting to and I’m still not fully there. Having numerous illnesses that can’t be cured and are likely to worsen is scary.
  9. There will still be good days.
  10. I can’t face things alone. I need people to support me, whether they are family, friends or medical professionals. I can’t fight the shit stuff alone.
  11. I have got to pace myself.
  12. I’m allowed to miss being healthy and I’m allowed to be resentful.
  13. As much as I hate it, medication keeps me alive.
  14. Never underestimate the power of a pair of comfy pyjamas.
  15. My body will change and I won’t always be in control of that.
  16. Being as healthy as possible requires work.
  17. Medical professionals who get it are incredible and I need to appreciate them.
  18. I’m a lot stronger than I give myself credit for.

I’m hoping more than anything that 2019 is a little bit kinder to me and doesn’t throw any more illnesses at me.

Happy New Year to all, keep fighting and know that you’re not alone.

October Favourites

Ah it’s now officially autumn, my favourite season! This month has been pretty busy, by my spoonie standards, but I’ve still found plenty of time to curl up on the sofa, with my duvet and the fire burning, being a proper little hermit.

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Keep reading to find out what I’ve been loving this month.

Books

Only one book recommendation this month, as I’ve been slacking a bit with reading. I also haven’t had as much spare income, so I’m having a bit of a break from buying books. Sob. I went back to my childhood by reading My Mum, Tracy Beaker by the one and only Jacqueline Wilson.  As a child, I loved Jacqueline Wilson books, although unfortunately, as an adult, I loved this book a little less. I enjoyed the idea of Tracy Beaker returning, with a child, but Tracy is yet to grow up and behave like you would expect an adult to behave. I can’t comment on other books by Wilson as it’s been so long since I have read them, but it took a long time to fully get into the plot. That said, there are strong messages around happiness, money and family values and I love that the book explores relationships outside of the traditional hetro-sexual ones normally seen in children’s books.

Film/TV

The arrival of autumn means that all the good TV series are back and this year has not disappointed. Strictly Come Dancing continues to sparkle on Saturday evenings, with the added controversy of Seann and Katya and That Kiss.

Outside of the world of glitter and sequins, October saw the start of series 14 of The Apprentice. I’ve only been a hardcore fan of The Apprentice for the past few years and always worry that the series will burn out and become repetitive but thus far, this series seems to be pretty strong, with the usual mix of good business ideas and crazy levels of arrogance.

The BBC is excelling itself in new dramas at the moment, including Killing Eve and The Informer. Killing Eve has been a real wow of a series, with a strong female cast, seeing Jodie Comer take on the role of a sociopathic serial assassin, being hunted and investigated by Sandra Oh. In a series full of twists, these two fierce women, both equally obsessed with each other, go head to head in an epic game of cat and mouse, toppling the typical spy-action thriller, which we are used to seeing on our screens.

Spoonie Favourites

Over the past few months, I have been struggling more and more with pain. I am reluctant to increase any of my opiate medication anymore than I already have done, which has led to me exploring other pain relief options. So, today I had my second acupuncture session, to see if this can help with some of the pain and/or symptoms of gastroparesis. I’m yet to feel any benefits from it and if I’m honest, the sessions have left me feeling a little odd, thanks to a combination of losing sensation in my hands and feeling very spaced out, which I’m told is normal and should lessen as the sessions continue. But I am finding the overall experience relaxing which I guess is half the idea.

It’s no secret that I love pyjamas, I probably have more pyjamas than I do real clothes and I am totally okay with that. One of the best things about the change in season is new pyjamas and I am loving the pyjamas in White Stuff. They are so soft and cosy the the Midnight Bloom bottoms are my new favourite pyjamas.

Odds and Sods

At the very beginning of the month, I stayed with a close friend, who lives in London and went to the theatre to see Everybody’s Talking About Jamie, It was outstanding and possibly one of the best shows I’ve ever seen on stage. Based on the BBC3 documentary, Everybody’s Talking About Jamie follows teenagers Jamie New achieve his dream of becoming a drag queen and going to his school prom dressed as a drag queen. With themes such as prejudice, bullying, family relationships, race and culture, this musical could not be any more relevant for a 21st century audience. It is funny, raw, a little bit fabulous and very sassy. I walked out at the end wanting to see it all over again.

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Universal Credit Saga – Part Seven

It’s been a while since I had anything to say about universal credit. Mostly this is because I haven’t felt well enough to battle the broken system and for the most part, it hadn’t been causing me any issues, personally, so my feelings and views on it have been forced to take a back seat.

That was, until this past month. I check my bank account regularly because I don’t trust the benefits system to continuously pay me without any issues. When I checked my bank account a few weeks ago, I realised that I wasn’t paid my last universal credit payment, meaning that I was very overdrawn. It’s been an expensive few weeks with birthdays and various other things so my outgoings were higher than normal but that still didn’t explain how I was so massively overdrawn.

I’ve always been very careful with my money and budgeting was a skill that was instilled into me as a teenager. Finding out that I was overdrawn caused a whole new level of anxiety but I pulled myself together and went to the job centre to ask where the hell my money was at.

If you’ve been a regular follower of the universal credit sage, you’ll know that my experiences at the job centre have been less than positive: I’d like to say that this time things were different but that was not the case. I explained, very calmly, to the work coach that my payment hadn’t gone in and as a result, I was overdrawn. I kid you not, the work coach shrugged in reply and told me that “these things happen”. There have been admin issues over the past few weeks, which has meant that not all payments have gone out on time. Admin errors happen, what I am more frustrated about has been the sheer lack of communication, so I had no idea that this was the case.

I told the work coach, again, that I was overdrawn as a result of the payment not going on and was told that I would benefit from seeking advice from the Money Advice Service. The Money Advice Service is an organisation established with cross Government party support, that provides free and impartial advice on money and financial decisions to people in the United Kingdom. It is a really useful service, but not a service that I require at this time, because when my payments go in, I am very able at managing my own money. It’s very hard, however, to manage you’re money when you’re not receiving the money in the first place.

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I thought that things were taking a more positive turn when the work coach asked me if I needed vouchers so that I could access the food bank. The situation that I’m in means that actually, I don’t need them, because I eat very little due to gastroparesis, and the supplement drinks that I have are on prescription. This is where it gets interesting: the average person will spend between £15 and £20 per week on food shopping. The job centre were offering me a £5 voucher, to last me a month. That is not enough to cover even the very basic amounts of food that I am able to eat.

 

This left me in a somewhat desperate situation. By the time I got home, I was in tears because of anxiety and felt pretty ill, in general. With my mum’s help, the situation was de-escalated and we agreed that she would lend me some money to help me until my next payment date.

The end result has been that I had a double payment on my most recent payment date, so financially, I’m back to where I should be.

Universal Credit makes people vulnerable. You’re constantly at the mercy of an admin system that may or may not work. And when it doesn’t work, things can go really wrong. People can so easily end up in rent arrears, which can put their housing at risk. Mortgage repayments can be missed. Bills don’t get paid. So many people expected that Universal Credit would be a Universal Failure, however the scale of the failure really is shocking. It has cost four times as much to run per person as predict, at approximately £700 per claim. A fifth of claimants’ payments have been delayed and it is pushing unsustainable burdens onto local authorities to pick up the pieces when it does go wrong. Food banks, churches and charities are having to support increasing numbers of people, yet despite all of this, we are told that we are too far along with the process now, for it to be reversed. Universal credit hasn’t been rolled out across the whole country yet, so all these failures are set to increase further by 2023, when the rollout is set to be completed.

All these reasons are why I want to be working and not living off the state. Ten months on from the start of my experiences with universal credit and I still feel like a failure.

 

 

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.

We’re All Winners and Losers

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

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

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

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

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

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

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

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

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

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

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

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