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.

July Favourites

Welcome to another monthly favourites post, looking at all the things I’ve been loving in July! The hot weather continues, my cat has given up tormenting the wildlife (mostly) and I have gassed myself out using Deep Freeze spray a few too many times. My health has been a bit up and down this month: I am so thankful that I was well enough to spend just under a week in York, reliving my university days and pretending, badly, that I am still a student. However, there has also been some real low moments, involving a lot of vomit, infections, catheters and paramedics, meaning that I’ve lost quite a bit of this month to sleep and being a bit out of it on medication. Something exciting that has happened this month is that I have been nominated for a WEGO Health Award, under the best in show blogging category. This has shocked me so much and it would mean the world to me if you would endorse me (vote) by clicking HERE!

So, onto the favourites!

Books

Last month, Dear Chronic Illness, compiled by Pippa Stacey of Life of Pippa was released. This book features a collection of letters, written by people who have been diagnosed or affected by chronic illnesses, in their varying forms. I laughed and cried, sometimes at the same time, reading this. Often it can be really hard to explain what life is like living with a chronic condition and there are times when it feels like it has taken over your life: Dear Chronic Illness gives an insight into what life can be like and makes you feel less alone.

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I have possibly talked about Holly Bourne in previous monthly favourites posts; her first adult fiction book, How Do You Like Me Now? was recently released. I’ll be honest, I was a bit indifferent at the thought of reading this book, for the most part I have loved Holly’s young adult fiction, but felt that her last YA book, It Only Happens In The Movies was slightly rushed, and didn’t compare so well to the Spinster Trilogy. I had concerns that How Do You Like Me Now? would follow the same path and be rushed and forced. It has been dubbed the new Bridget Jones, for this generation and whilst it’s good, I wouldn’t go as far as that. In my opinion, nothing beats Bridget’s big knickers, vodka and Chaka Khan.

Films/TV

Much like last month, I am still obsessed over Love Island. With only a week and a bit left, I’m not sure how I’m going to cope in life without it. In case you missed it, I wrote a blog post recently about The Problems With Love Island, where I talked about being a feminist and if watching Love Island makes me a bad feminist. I don’t necessarily agree with the behaviours shown by some of the people in the villa, but Love Island is a winner for some summer evening TV viewing and I will be remaining loyal, babe to it.

Over July we were flooded with all the talk about football and whether England will produce a less shameful performance this time round. I’m not a fan of football, put simply, I don’t understand the appeal of watching grown men chase a ball and roll around on the floor a bit and receive thousands of pounds for doing so. Not being funny, but a dog can do that and it would be a lot cuter and more entertaining, so why aren’t we watching that on television? Anyway, personal feelings aside, I ended up watching two of the England matches, one very much not out of choice (cheers, Nikki…) and then I watched the semi final, because, you know, if could have happened. I’m not going to say that I’m a convert, but the matches passed some time and England getting to the semi finals was a nice change from our usual, shameful displays.

Thanks to being unwell, I have rekindled my love of Netflix and have been watching Good Girls. The series follows three suburban mothers, who suddenly find themselves in desperate circumstances and decide to stop playing it safe and risk everything to take their power back, buy committing armed robbery. As American comedies go, I have been impressed by this, it has just the right level of wit, balanced with drama and the actors are pretty good too.

To pass the poorly days away, I ended up purchasing the full box set of Nurse Jackie and made my way through series one within one day. I have no regrets. If you like Scrubs, Grey’s Anatomy or The Night Shift then this is for you. With a few more illicit drugs.

Spoonie Favourites

At the beginning of the month, I had an appointment with Dr Hakim, a consultant in Rheumatology, who has a specialism in Ehlers-Danlos Syndrome. The appointment itself was helpful and I’ll probably talk about it in another blog post, but one thing he recommended was Nuun Tablets, to help with remaining hydrated and to potentially help with steadying my slightly wacky pulse. They are packed with electrolytes, as well as being low in calories and sugar and they have been brilliant at helping to prevent dehydration in this hot weather. Plus, if you purchase through the hyperlink that I’ve included, you get a sample of NipEAZE, which protects your nipples from abrasion while running, working, surfing or body boarding. Don’t say that I don’t spoil you with information and treats…what more could you want in life? 

Odds and Sods 

So, as I said at the beginning of this post, I went to York for a few days to catch up with university friends and some of my lecturers who I’m still in touch with. York is possibly one of my favourite places to visit and not just because of the memories it holds.

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Evil Eye Lounge, Stonegate, York

York itself is a beautiful city, with individual and unique shops that I could happily spend way too much money in. I can’t write a monthly favourites post without mentioning Give The Dog A Bone. People who know me from my uni days will know who much I love this shop and how much money I spent in there on a weekly basis. I can’t really do the shop justice in a blog post: if you like stationary, cards, homeware and rude humour then have a look at their website. It’s free delivery on orders over £40, you know you want to.

What have your favourites been this month? I love finding out what other people have been loving and would recommend.