I’m Doing Okay

I feel really uneasy publicly saying that I’m okay and that things are going well. Not because I need validation around being ill, but because I am a little bit scared that somehow talking about things being okay will jinx the situation and things will start going very wrong. But I can’t live my life in fear and actually, for the first time in a very long time, I am happy, content and enjoying life. Obviously the whole corona-coaster thing is problematic and it throws up issues, but as I said in my post about dealing with lockdown and mental health, I am coping amazingly well.

So what has changed?

A few weeks ago, things were not this good. The exact opposite in fact. As it happened, the referral into the mental health team, that was suggested, was refused and the additional meds that I was put on didn’t work for me, and I think that this is the best thing that could have happened. I decided to take control of my own life and to stop coasting through, depending on other people. It came down to mind over matter, although I want to make things very clear at this point, that I do not think that this is a clearcut “cure”, not for me or for anyone else. My problems haven’t magically disappeared, but I made the choice to start addressing things, instead of self destructing and living in a mindset where I had given up.

I know and accept that I still need help, but I want to be in control of that help and to get support in a way that I find is beneficial for me. My experiences with the community mental health team were poor, I would leave appointments feeling worse than when I entered, I was made to feel like I wasn’t sick enough to receive help, despite being very unwell and I felt that I wasn’t in control of my own life or choices. I’m still engaging with therapy but for the first time ever, I am viewing it very differently. I have been having therapy in varying forms for years and years and had always just accepted that I would have therapy for life and that was that. But now, without setting myself a time limit, there are certain things that I know that I need to work on, and more importantly, I feel ready to work on. It’s not going to be an overnight thing, it is still probably going to take years of work but I’m not going to just tread water and not move forward.

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Olive and Frank

I’ve also learnt what works for me and what doesn’t. My choice has been to engage with services such as Mind and other local charities, and dip in and out when I need support. I’m not pinned in and it isn’t time limited. Plus, the wellbeing workers who I have met before, are all good eggs and genuinely care and want what is best.

Most importantly, I am making plans for the future. I’m using my time off work sensibly and working on continuing professional development, as well as undertaking various online courses to improve my CV in the long run. I’m really excited to say that I have applied for a masters degree in social work and I’m currently going through the agonising wait in hearing back from the university. I am making plans around moving out and setting myself goals in achieving that.

It’s crucial to say, I am not naive. I don’t think that I am magically better. There are still things that I am struggling with, a lot, but I am accepting those things and being honest about them. My physical health is still problematic and causes its own limitations and that is always going to be something that I have to work around. I’m also not kidding myself into thinking that my mood and ability to cope will not, ever, fluctuate again. But I kind of feel more prepared for that. Small steps. That’s all anyone will ever ask for.

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May Favourites – Lockdown Edition

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It’s been a long long time since I last sat down and wrote a blog post, more on why in another post. But as way of easing myself back in, I thought I’d kick off with a monthly favourites post, looking at all the things that I have loved so far in May. Obviously if you’re living in the UK at the moment, we are in lockdown because of COVID-19, so most of the favourites will be based around making life as painless and as interesting as possible, when you’re stuck looking at the same for walls for months on end!

 

Books

My absolute favourite book from this month has to be Q by Christina Dalcher. Long time readers of my blog might remember how much I obsessed over Vox, Dalcher’s first novel (I crowned it my book of the year) so I had high expectations for Q and it did not disappoint. It is powerful, gripping and a little bit shocking: in a world where being perfect is everything, what happens when you are faced with someone you love not making the grade? I think what hit me the most is how this book is actually inspired by historical events. While I knew that eugenics had been embraced by the Nazis, I was completely unaware of the American eugenics movement of the early twentieth century that predated this. This novel looks at eugenics in a 21st century society, leaving the reader wanting more and more. I already cannot wait for Dalcher’s next book. 

After reading Q, I’ve felt like I’m stuck in a bit of a rut when it comes to books, simply because I don’t think I’ll ever read anything as powerful or as good. That said, I really enjoyed Dear Edward by Ann Napolitano. I thought that this book was beautifully written. When a plane suddenly crashes, twelve-year-old Edward Adler is the sole survivor. In the aftermath of the crash, Edward struggles to make sense of his grief, sudden fame of being a sole survivor and find his place in a world without his family. But then Edward and his neighbour Shay make a startling discovery – hidden in his uncle’s garage are letters from the relatives of other passengers and they are all addressed him. Based on true events where a nine year old Dutch boy was a single surviving person of a plane crash, this book looks at what it means not just to survive, but to truly live.

I also really enjoyed Seven Lies by Elizabeth Kay. This dark and gripping story looks at the friendship of Jane and Marnie, inseparable since childhood and how their friendship slowly unravels over the course of seven lies, eventually leading to a death. My only criticism was that it ended too quickly. The book itself was very fast paced but the sudden nature of the ending made it seem like a slight anticlimax.

Films/TV

Having spent all of the past few months stuck in the house due to lockdown and needing to isolate because of health conditions, I have very much made use of my netflix subscription. One of the best series that I have seen in a long time is Unorthodox, based on the book of the same name, by Deborah Feldman. As a member of the strictly religious Satmar sect of Hasidic Judaism, Deborah Feldman grew up under a code of relentlessly enforced customs governing everything from what she could wear and to whom she could speak to what she was allowed to read. In Unorthodox, we follow the story of Esty, a young Jewish woman escaping a strict religious sect in Williamsburg, New York, and building a new life for herself in Berlin. I’m ashamed to say that my knowledge around Judaism is limited so I learnt quite a lot watching this series, although did have to concentrate due to the amount of Yiddish spoken. 

I’m a bit late to the party on my next favourite, but I finally watched After Life, written by and starring Ricky Gervais. I’ll be honest, when I started watching it, I was a little indifferent. I’m not a huge fan of Gervais so I was not in any way prepared for the six hour emotional onslaught that happened when I watched series one and two in one sitting. I have never cried so much at a TV programme. After Life follows Tony, whose life is turned upside down after his wife dies from breast cancer. He contemplates suicide, but instead decides to live long enough to punish the world for his wife’s death by saying and doing whatever he wants. Although he thinks of this as his “superpower”, his plan is undermined when everyone around him tries to make him a better person. If you haven’t watched After Life, stop what you are doing and watch it right now. You’ll laugh, you’ll cry and most of all, you’ll want to give your loved ones a massive hug.

Spoonie Favourites

Being stuck at home has meant that I haven’t been able to have my usual physio appointments and my body is starting to struggle. A friend recommended buying an acupressure mat, which is designed to relieve stress and pain. The cynical part of me isn’t sure if it’s making much difference as I’m still stressed and I’m definitely still in pain, but I will do anything to try and get my body to July when physio appointments will hopefully resume.

 

Lockdown Favourites

It’s seems only right to finish off by looking at some of the things that are making lockdown that little bit easier.

Firstly: jigsaws. I’d like to say that I am a pro at completing jigsaws, however this isn’t the case. I lose my mind after about 10 minutes, but it’s kept my brain busy, especially on wet days when I’ve been hibernating.

I also gave into temptation and ended by buying Sims 4. At the time of buying it was massively reduced (that’s my excuse anyway) and I’m managing to pass many hours building my dream house and then killing off my sims in as many dramatic ways as possible.

I’m not sure if I’d class it as a favourite but I bought myself a cheap pair of blue light blocking glasses for when I’m video calling people, as I seem to end up with a banging headache from increased screen time. Time will tell whether these make any difference, I suspect that I actually need my eyes testing and need new glasses, so my online purchase of blue light blocking glasses are only to bridge the gap until an eye test is possible!

 

I hope this gives you some inspiration of things to do or read with the world being a very strange place. Keep safe and remember to sing happy birthday when you wash your hands.

 

Guest Post: Living with Crohn’s Disease

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Starting a new monthly feature of guest posts, I’m handing this post over to one of my favourite humans, Megan. You can follow Megan on Instagram @megans_healthjourney.

I’m not exactly sure where to start this but I guess I should start by introducing myself. I am Megan, a girl in her twenties, who has more pyjamas and dressing gowns than clothes, as well as a slightly unhealthy addiction to handbags. Which I guess could (possibly) be considered an economical purchase as a handbag will always fit me regardless of whether I’m in a flare or on the dreaded steroids. Well at least that’s how I justify the occasional one when I’m going through really rough patches health wise. Something I also collect, without any choice in the matter I may add, is chronic illnesses, because I mean why have just the one when you can have several? Hey, life would be too simple! For this blog post, however I am only going to focus on one of those illnesses and that illness is Crohn’s Disease.

My official diagnose of Crohn’s disease was on September 18th 2014, a day that unfortunately I will never forget. But whilst I left that consultation room speechless and in a daze, it finally gave me answers I had been looking for to explain how I was feeling. I had been getting symptoms for more than a year or two before hand with fevers, severe vitamin deficiencies, frequent toilet use, overwhelming fatigue etc but things got much worse in December 2013 leading to various hospital admissions to bring in the new year in 2014. I saw various doctors during my early admissions, but they couldn’t figure out what was the cause of my symptoms and I was left being promised gastroenterology input and medical investigations, but nothing materialised. In fact the referral didn’t even appear to have been made.  At the same time as the roller-coaster with my health, I was in the final year of my psychology degree, which in itself was a very stressful period and I ended missing some of my final year exams as I was hooked up to drips and IV antibiotics. I had barely been making it to lectures even though I was only due in twice a week, but the more people told me to postpone my course, the more I wanted to defy them and prove that I could do it and that my body no matter how hard it may try- would not beat me.

It got to a point in May that year, however, when I was verging on a breakdown and I could barely move from my bed or the couch and had a fair bit of lost weight on top of feeling so weak. I truly didn’t think I could go on much longer. I phoned up the hospital and said to them that I physically couldn’t wait any longer, and if I didn’t see a doctor within the next few days, and doctor was someone who would actually listen and follow through on their actions for once, then I felt I truly might die. I had no fight left so this felt like my last option. Fortunately, the week after, 6 months from the initial admission, I met my gastroenterologist and I felt for the first time maybe I was finally on the road to some answers. After various invasive tests, including endoscopy, capsule endoscopy and colonoscopy, she told me I had Crohn’s disease- a type of Inflammatory Bowel Disease. Although I knew in myself there was something wrong I couldn’t and still can’t quite believe I finally had an answer.

So, what is Crohn’s disease? It is a long -term condition that causes inflammation anywhere in the digestive system from the mouth to the back passage. It is so much more than a ‘toilet issue’, although that is a big part of the condition: sufferers can have anaemia, joint problems, fevers, a lowered immune system, depression as well as lots of other symptoms. I am grateful to have my diagnosis in the sense that I know what is wrong however knowing hasn’t meant that my journey is over- rather it has just been the beginning. I have had countless flare ups, some requiring hospital admission, as well as sepsis which is likely to be a result of the immunosuppressants I am on to try and control my Crohn’s disease.

Ultimately, I have and still do often feel very alone and ‘labelled’ with my conditions and though it’s easier to say, ‘you’re fine’ then say how you’re truly feeling? How can you really explain it to someone when on the surface you do look fine. But becoming chronically ill has also allowed me to make lifelong friends and for that I am truly grateful as the obstacles would be even harder to try and face alone. Finding out you have any condition at all gives you a new dimension to your identity, it’s made me change my life completely. I’ve learnt who and what really matters and just how precious health is.  If I could end with one ‘spoonie tip’ it would be to always listen to your body and fight to be heard as no one knows your body better than you. So, if you instinctively feel something is not right and you are met with resistance by the professionals you initially meet, it doesn’t mean your problems don’t exist.

Don’t give up fighting because you’re worth it and there will be other professionals who are willing listen and help.

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If you would like more information about Crohn’s Disease or IBD you click here and there’s lots more information over on Crohn’s and Colitis UK. Hannah Witton  vlogs about life with IBD, having recently had major surgery, resulting in a stoma.