How I Survived Lockdown

c5912582950c0186a1fc30b74387836cI found out yesterday that I will be returning to work on Monday (15th June), after 13 weeks of isolationa/shielding. I started shielding a week before I was medically told that I needed to and I was incredibly lucky that my employers were understanding – I think being honest about my health from the start helped. But they didn’t complain or make me feel bad, in fact they went out of their way to reassure me that things would be okay and that it wasn’t causing huge issues. Despite that, I felt incredibly guilty for leaving them in the lurch. I was also bloody angry that yet again, my health was dictating what I could and could not do.

Rewind to this time two years ago, I wasn’t working, due to my worsening health. I was very isolated and rarely left the house, unless it was for medical appointments. I can’t deny that part of my anger stemmed from the fact that I had spend over two years effectively in isolation due to being so poorly that I couldn’t properly partake in society, and now I was facing months of yet again being stuck at home, unable to work, unable to see friends and family and losing my independence that I had worked so hard to regain. 

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That said, I have coped remarkably well with isolation. I think that living with chronic and mental illnesses kind of prepare you for not being part of society for long periods of time. When you have a chronic illnesses, the chances are that you spend weeks/months/years at home, often unable to leave your bed. The world carries on, outside your windows, but you aren’t part of it. Whilst I had moments of feeling a bit penned in, lockdown didn’t really bother me that much because it was a lifestyle that I was used to. Having mental illnesses also prepared me, in part, for the madness that is covid-19. I have anxiety and can easily catastrophise about the world ending and going through endless what ifs. On so many occasions, I have convinced myself that the absolute worst was going to happen, so when the world imploded and shut down, it wasn’t actually as bad as I had built it up to be in my mind. Every day I panic about the people I love dying, and suddenly that became a very real threat. But that threat felt normal for me, so whilst other people were panicking about loved ones getting ill and dying, I basically sat back and thought “this is my normal, this is okay.” Having an excuse to be anxious and not being viewed like I was being dramatic or overreacting was quite a nice break. I felt like saying “welcome to my daily life. Exhausting right?” I wasn’t having to constantly explain my irrational thoughts, because suddenly they weren’t irrational. 

That said, I did make a conscious effort to try and look after myself during lockdown. Mentally, things were a bit wobbly towards the beginning (nothing to do with covid) and I quickly realised that it was unlikely that I would get any additional support because, put simply, it wasn’t there any more, as everything had shut down. It was a bit of a sink or swim moment, and I had spent so much time sinking, that I figured that trying to swim was worth a try. 

So how did I survive lockdown without relapsing and becoming very unwell?

Sticking to a routining has been really important. I’m not going to pretend that I was up and dressed by 8am every single morning, like I would if I was at work. That would be a lie. But I have tried to wake up by 10ish (unless I felt ill) and then get up. I could happily live in pyjamas but I made sure that I could dressed every day because I will admit, I mentally feel better if I have made the effort to look presentable. I tend to put aside some time every day to exercise in some form, do some of the endless medical and adult admin that seems to have accumulated over the past few months and I have done a lot of reading. I kept meaning to write down all the books that I have read during lockdown because it’s a pretty impressive selection. Even though I haven’t been able to go out-out, I have spent time in the garden and actually developed a bit of a tan. I know, mad. 

On the days when the weather hasn’t been so good, or when my body has been rebelling, Netflix has been fantastic, as has Amazon Prime. I have had the time to discover so many new series over the past few months, including Dead to Me, The Good Fight, Alex Rider, Chernobyl and Little Fires Everywhere. 

Weirdly, during lockdown, I have felt more connected than I have done in ages. I am so grateful to my friends who have been at the end of a video call a couple of times every week. Even though no one has been doing anything particularly exciting, just spending time in their company has been really nice and it’s left me feeling a lot closer to them. I also have send more letters and happy post to friends, because receiving something other than a bill or medical letter makes a change from the norm.

Being kind to myself has been really important. We are living in unprecedented times so doing little things to try and keep myself happy, sane and healthy has been a priority. This ranges from using a hair mask once a week to try and save my hair when I can’t see my hairdresser, to making a conscious effort to try and eat well. I’ve tried to exercise most days and have also been doing sudoko and other brain training games. I don’t for one moment that it will improve my brain skills or intelligence, but I want to keep mentally active, as well as physically active.

As life slowly begins to return back to normal, spare a thought for those people whose life won’t be drastically changing and will instead be remaining at home and isolated from their friends, family and society. Millions and millions or people are silently missing, please don’t forget them.

Dear 18 Year Old Self

Dear Laura,

You are eighteen and it should be the most exciting time of your life. Unfortunately, right now, you are finding life hard. You are in chronic pain and you don’t know why and you’re spending a lot of time in and out of hospital. But you’re going to get through it and it will make you even stronger (we love a cliche). You think that your A Levels are going to destroy you. Spoiler: they don’t. You won’t enjoy them, you might even cry during them but you’re going to get through them and you’re going to go to university and start the best three years of your life.

Don’t take life for granted and don’t waste time on the wrong people. You will meet the wrong people and part of life is learning lessons from the bad times. Don’t hold on to anger, resentment or jealousy because it will take over. Try not to put your self last, even though doing the opposite seems completely unnatural to you. The things that bother you now will not bother you in the future, trust me on that one!

Hold your good friends tight. The friends you value now won’t necessarily be in your life in the future, but know your self worth and know that it is okay to move on. Laugh and cry with your friends, stay up late and drink bottles of wine. Don’t pressure yourself into going clubbing because it really isn’t as great as people make out.

Believe in yourself! Know your own worth and what you can offer. Don’t be silenced by people who are louder and more confident than you. Try not to compared yourself to other people, everyone is walking their own path and there’s no point comparing your step one to their step five. You’ll get there, in your own way.

Learn how to be independent. Don’t rely on other people for your survival, be happy on your own and be happy with other people.

Dating the wrong people is not a mistake, but staying with them, because you feel that you have to, is. Be your own person and don’t change because a man wants you to. You will make mistakes, in relationships, in life, with decisions but you will learn from those mistakes. Mistakes are okay. Self talk, problem solve and don’t regret what went wrong. It went wrong for a reason.

Asking for help is okay. There will always be people there who are willing to help you. This is your time to learn, but that doesn’t have to be done alone. There isn’t an age limit on success, now is the time to explore, live your life, make decisions (good and bad) and don’t beat yourself up if it goes wrong.

Make memories. Take photos.

Stand up for yourself.

Risk it.

Find and enjoy whatever it is that makes you happy.

Respect yourself and respect others.

Save money and don’t spend all your student loan in one go when you get to university. You’ll be thankful for this when you’re not poor and hungry.

Your mum is [nearly always] right. She will tell you things that you don’t want to hear and she will nag you until the point that you want to explode but she does it because she loves you and cares for you. Never forget that and try and listen to what she says, she is the person that loves you the most and will not turn her back on you.

Also, always drink some water before bed after a night out. You’ll thank yourself in the morning.

You’ve got this,

Laura x

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Emily McDowell

 

 

Volunteers’ Week 2020

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The first week of June marks Volunteers’ Week across the UK, a week to say thank you to volunteers for giving up their time and celebrating work which is done by volunteers. I have been volunteering off and since since I was 15 and I personally think that it is one of the most rewarding things that you can do. You’re able to contribute time and skills to help people, often who are vulnerable, as well as gaining new experiences and opportunities, whilst making a huge difference. Not only that, but at some of the toughest times in my life, I have been able to hold on to the fact that I volunteer: it has given me a purpose and something to focus on when everything seemed impossible hard and has also forced me to think about something other than my wonky body or spiralling mental health. Put simply, I genuinely think that volunteering has saved my life.

As a teenager, I volunteered with Barnardo’s, a children’s charity, before being offered a paid position as a play and support worker. It gave me an escape from the reality of exams, applying to university and instead gave me confidence, new friendships and an escape. It was really tough at times, I was working with disabled children and young people, frequently people who were the same age as me and I was having to do intimate personal care, amongst other things. I very quickly learnt the importance of dignity and putting aside disability and treating service users like “normal” people. Most of my friends worked in retail, but I knew that retail wasn’t the job that I wanted to do. I would go to work and be having to restrain children for their own safety, if they became violent, I would have handfuls of my hair pulled out, I was urinated on and had sperm wiped in my hair (I wish I was joking) and I was dealing with medications and tube feeding and complex health conditions like it was nothing. I wasn’t really sure what I wanted to do with my life, other than being really interested in working with people and this job was my first paddling into the world of supporting young people with additional needs and I loved it.

I stayed in this, now paid, role for six years, working around university and living 200 miles away and gave as many hours as was possible in holidays. It’s only now that I look back, ten years on, do I realise how vital this volunteering position was. When I started, I was deep in the grief process, after losing a friend to suicide. I was struggling with my own health and being bumped around different hospital departments to try and figure out what was happening and I was unhappy at school due to the pressure of exams. My confidence was low but I was welcomed with open arms by a fantastic team of people: little did I know that my initial enquiry about volunteering would see the dark clouds above me start to fade away and bring new light into my life. Not only had I made a difference to people’s lives, I had also made lots of new friends and built my own confidence as well.

Fast forward to September 2018 and I started volunteering with Girl Guiding. In January 2018 I had been offered my dream job, working in children’s social care, but my declining physical health meant that I had to turn it down and instead forge a life on universal credit because I was too ill to work. I sent an enquiry to Girl Guiding to see if there was any volunteering that I could do. Initially this was purely because I was thinking about my CV and was forward planning for when I would be returning to work. The atmosphere in Girl Guiding has made it one of the best places I’ve worked. Everyone is awesome, and I don’t say that lightly.  Everybody goes into Girl Guiding with their own story and reasons for volunteering but one thing is certain, you cannot beat the passion and positivity from everyone you meet. The two hours when I was helping to run a Rainbow group (five to seven year old girls) quickly became the highlight of my week. It gave me my smile back when I felt very lost and without a purpose.

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Girl Guiding Killamarsh

My health deteriorated further over 2019 and I had a few months away from volunteering when I was in hospital. I remember being so anxious about returning and potentially having to face difficult questions. But yet again, I was welcomed with open arms and unwavering support. I didn’t face any stigma or discrimination, maybe because the other leaders had their own stuff to contend with too, I don’t know. It makes such a difference working with people who have a shared understanding, there was a mutual respect that we all had stuff going on in our private lives and sometimes we talked about it whilst always focusing on making the sessions as fun as possible for the girls. The diversity of the role means that even if you’re having a bad week, there is still a role for you. You can be sat dealing with the admin side of running a group or be actively playing with the girls and having fun with them.

Without a doubt, choosing to start volunteering as a teenager was one of the best decisions that I could have made. Continuing to volunteer throughout my twenties proved to me such a strong protective factor in my life that I now can’t imagine my life without volunteering in some respect. So whilst volunteers’ week is about saying thank you to volunteers, it seems only right to say “thank you” to all the people who saw the potential in me and allowed me to volunteer in the first place. You’ve made my life better because of it.

30 before 30 – An Update!

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A few years ago, in 2016 to be exact, I wrote a blog post about 30 things I wanted to do before the age of 30. I am now two and a half years away from the big three-oh (OHMYGOD) so I decided to look back on those goals and do an update.

1) Complete a masters degree.

I have applied for a masters degree and if all goes to plan, I should have finished by the age of 31, so I’m counting that as in process.

2) Work in a role which supports young people with mental illnesses.

Done, since leaving university, all my jobs have been supporting young people with social and emotional needs in some capacity and it continues to be my plan for the future.

3) Travel the world.

This hasn’t been so successful. I have traveled in the past four years but nowhere near as much as I was hoping. As I became more unwell, my priorities changed and I realised that as much as I want to explore new places, I also like being near an English speaking hospital or somewhere with a good healthcare system. I’ve realised that owning my own house is also higher up on the list of priorities so when I’m able to save money, it goes towards that.

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Copenhagen, Denmark 2016

4) See the Northern Lights.

See above. Although I do plan on going to Iceland one day because I think it is a beautiful country. Maybe when Rona has stopped ruining everyone’s lives.

5) Marry.

I am literally the most single person you could find. I am happily a cat lady and not sure how my cat would cope if I started sharing a bed with someone else. That said, I would like to marry and probably have children, just right now that’s not something I’m focusing on. If it happens, that’s great but equally, I’m not actively looking for Mr Right.

6) Have children (hopefully).

As above. I wrote a blog post recently, about frequently asked questioned that people with EDS get asked and I touched on the baby and child thing in that. In short, yes, I would like children, but I have to consider the risks to myself, but more importantly my child. EDS complicates things a bit. I’ve said more about the whole thing here.

7) Have my own house.

Twenty-three year old me was very naive about the cost of Adult Life. I’m in the process of saving and am considering selling a kidney to fund a deposit. Joking, joking. I like to torment myself by looking at Right Move and to admire all the houses that I can’t afford (aka so all the houses) but I really hope that by thirty, I will be in a better financial position to be able to afford my own little abode.

8) Be financially stable.

To be fair, I would say that I am fairly financially stable. I was on universal credit for two years and it really taught me about the importance of budgeting, although even before that, I was pretty good with money. I don’t take money for granted and I love the feeling of satisfaction when I’m able to buy something that I have saved a long time for. Right now, I’d much rather save money than spend it, however that doesn’t include buying books or anything from the Body Shop.

9) Sing on a West-End stage.

As if I’d ever really have the confidence!

10) Sky dive.

I plan on doing this, as soon as it is possible! As I’ve said in other posts, I spent over six months as a psychiatric day patient in 2019 and I really want to give back to the day hospital to say thank you. The building is old and the interiors are more than a little run down and I would love to be able to contribute to a more cosy atmosphere, making it feel even more like a safe place. Watch this space!

11) Bungee jump.

I think I was being a bit over-optimistic here. This would probably break me.

12) Complete a half marathon

Really, Laura?! I have no desire to do this.

13) Complete a triathlon.

I haven’t completely ruled this one out. I found out that there is a Superhero Triathlon which is specifically for people with disabilities and I think I’d to complete it.

14) Raise £1000 for Blue Skye Thinking.

I raised just over £500, so I’m happy with that.

15) Write a book.

Ahhh I don’t know about this one. So many people have said that I should write a book and there’s part of me that would like to, but the thought of it also fills me with so much anxiety.

16) Publish an article for Huffington Post.

Done! And I have also had articles published on The Mighty.

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17) Meet some of the people who I have met online and thank them in person for all they have done for me.

This list is ever growing but I have been able to meet so many people, who I originally met online, including trekking up to Scotland and meeting friends there.

18) Cuddle an orangutan.

I’d love to do this, but I’m more aware about conservation and actually, cuddling orangutans isn’t good for them.

19) Complete the North Wales zip wire.

I’m still desperate to do this.

20) Teach young people to not be ashamed of who they are.

I’d like to say that I try and do this in day to day life, it’s something I’m really passionate about and I will forever be people’s biggest cheerleader.

21) Become and MP and fight for what I believe in.

No and right now this is not part of any plans. I am interested in politics but I’m more comfortable contacting my current local MP and having a rant on twitter.

22) Learn basic Polish.

This hasn’t happened, but I have self taught myself British Sign Language and Makaton/Sign Supported English.

23) Thank every single person who has made a difference to my life.

I probably haven’t thanked every single person, but I do make a point of thanking people regularly.

24) Go to a festival and not spend the entire time grossed out by the toilets.

Let’s be realistic here, I can’t think of anything worse than festival toilets. I’ve gone to festivals on a day ticket and that’s enough for me.

25) Visit all of the the seven wonders of the world.

See above for why travel is complicated.

26) Live for a week without internet, TV, phones etc

I haven’t done a week, but I have spent a long weekend away from social media/TV/my phone, when I was visiting a therapeutic farm and living in a therapeutic community. I was not a fan.

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Kent, England

27) Go to Wimbledon men’s final

Maybe one day.

28) Leave a note for a stranger in a public place.

I’m not sure if I’ve done this or not, but if I have, I’d like to do it again.

29) Learn how to take a compliment 

I’m getting there, slowly. It still makes me feel uncomfortable and like I want to hide under a stone but there has been progress.

30) Fall in love, deeply, properly and unequivocally.

I have fallen in love but not romantically. There’s plenty of time.

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.