#thebooksthatshapedme

#thebooksthatshapedme

I’ve always been a book worm, for as long as I can remember I’ve loved reading. Its always been a part of my life, how I’ve learnt things, how I’ve removed myself from daily life and kept my imagination alive. I can’t imagine a life without books in it and there’s very little I won’t at least try reading. In March 2016 I was introduced to Louise Hay’s You Can Heal Your Life and soon after that I stumbled across Gabrielle Bernstein. I’m not really sure how exactly I found it, but the book Spirit Junkie ended up on my kindle. I was going on holiday for a couple of weeks so downloaded a bunch of books, rather than buying more real ones to take with me. I hadn’t actively searched for this one and was pretty sure I hadn’t even pressed the download button, but figured as it was there I’d read it anyway!

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The Fatigue Network

The Fatigue Network

I’m really lucky that I work for a company that prides itself on its diverse workforce and actively works to support disabled employees. We have a number of employee led networks who work to raise awareness and support for a variety of different conditions, including mental health, Inflammatory Bowel Disease, Cancer and many others.

Back in February 2016 I was part of a small group of employees who wanted to do something to help people like us, with conditions where chronic fatigue was a major symptom. We launched The Fatigue Network in March of that year and were overwhelmed with the response.

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The Red Tent

The Red Tent

I’m not completely sure where it was I first read about red tents, but once I’d stumbled across them there seemed to be people talking about them all over the place. So, by the power of google I found one local to me and decided to give it a go.

Historically speaking, red tents were places where women would gather during menstruation and child birth. No men allowed! In some cultures, they’re called moon lodges (the gathering always happened around the time of the new moon) or menstrual huts. They’ve had a return to popularity since the publication of Anita Diamont’s book “The Red Tent” which tells the story of Dinah, Jacob’s daughter based on the biblical story in the book of Genesis.

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The Fear & The Lessons

The Fear & The Lessons

All this talk of redefining my idea of success and analysing the people who inspire me seems to have opened me up in ways I'm not sure I can fully explain yet. I've been doing a lot of work on myself just lately, and it feels like it's starting to click. 

The last few weeks have been incredibly hard. I've struggled with just about everything and have found being around lots of people, putting up a front and being ok hasn't worked, eventually the cracks show and the tiniest thing feels like the end of the world. Queue massive over reaction!

In the last few days I learnt that one of my fears was actually true, so definitely not a small thing. I'd known that for a long time but been in denial about it so when it came to a head it felt brutal and filled with lots of shouting and tears. To me it felt like my whole world was crashing down, like everything I believed and valued wasn't real. It felt like I was somehow separate, like I was removed from everything, watching it unfold in front of me rather than actively participating, even though I was. 

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What inspires you?

What inspires you?

Sunday 9th July was the official start of The Inspire Tribe, a group of women working together to support each other grow their own tribes, their confidence and their future plans, all supported and coached by Lauren from laurenbarber.co

The first week has been all about finding our “why” – what are the reasons we want to do the things we want to do and how do we want to feel, beyond the obvious finding our purpose and feel fulfilled. 

Part of the way we’ve been working that out is thinking about who and what inspires us, as well as what success looks and feels like. I talked about how much my definition of success has changed in a recent blog post and I think my inspiration has changed a bit too over the last few years.

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What's success anyway

What's success anyway

I’ve been thinking a lot about success just lately, about how often I’ve felt like a failure compared to other people, about how different our ideas of success really are and what it means to me.

I didn't get the job I went for a couple of weeks ago, yet another one lately where I've come 2nd or 3rd usually because I’ve been competing with people already doing the job or already in the team rather than because I’m just rubbish and unsuitable. I haven't been too bothered up until this one, this one felt so good for me and my long term plans. I saw it as a way I would be able to focus on the disability support work I do alongside my “day job” but the universe has other ideas for me!

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Gongs?!?!

Gongs?!?!

Back in November last year I went to the Mind, Body, Spirit festival in Birmingham and had my first experience of a sound bath. I'd never heard of it so had no idea what to expect when I went into the little round tent filled with cushions.

Anne Malone from Blue Muse led the session, encouraging everyone to close their eyes and breathe deeply. She played guitar, singing bowls and a gong. It was incredible - it was the first time I could remember my mind really being still. There was nothing but the sound and total relaxation. Afterwards I felt like I'd got totally clear on what I needed to do and how I could solve some problems I was dealing with at the time - it was a sudden absolute knowing and just so incredible. I had my aura photographed afterwards and I was totally zen!

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The emotions of M.E. - a mild account

The emotions of M.E. - a mild account

This lovely lady is Steph (you'll find her on Twitter here), someone I met online several years ago now, when I was first diagnosed with Coeliac Disease. When I first became ill with CFS/ME in 2014 she told me about her own experience with this condition, and she's been a great online support ever since! So when she asked is she could share her story for M.E Awareness week this week I had to agree - Over to you Steph!

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Inspiration - Pippa Stacey

Inspiration - Pippa Stacey

Pippa was one of the first people I found on social media talking about CFS/ME. She was at university when we met (virtually speaking!) and it always amazed me how she managed to juggle everything including setting up a fundraising project. Here’s a little bit about her:

Could you introduce yourself?

Hello! *waves*. My name's Pippa and I'm 22 years old. I'm originally from Sheffield and now live in York. I recently completed my undergraduate degree in Psychology in Education and I'm now studying Health Psychology. I'm a chronic illness fighter and in 2015 founded Spoonie Survival Kits, my little non-profit fundraising project. When I'm not working I love to read and write, and I recently started my own blog about all my favourite things!

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Dr Myhill is campaigning for CFS/ME patients

Dr Myhill is campaigning for CFS/ME patients

Dr Myhill is a well known name amongst the CFS/ME community thanks to her book "It's mitochondria not hypochondria" which talks about some of the physical causes of the condition. She presents the science behind the theory that those with CFS don't have properly functioning mitochondria, which leads to us being unable to produce energy properly. 

Personally, I never had mine measured as it was too expensive and Dr Myhill can only take on a certain number of patients at any one time. But, I did follow a lot of the advice she recommends - changes to diet and taking a number of different supplements which my body needs in order to produce energy. This made a big difference to my health, it was a turning point in my recovery combined with the hydrotherapy I was offered. I'm very much of the opinion that what works for one person may not work for everyone, but this was something I could try without fearing I'd do further damage. I don't follow it strictly anymore although if I'm crashing I do to help me recover faster.

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If the label fits

If the label fits

I run a support network at work for employees with conditions where chronic fatigue is a major symptom. We've got 93 members now, mostly with CFS/ME, some with MS, some with EDS and about 15 other conditions. Every month we get together (virtually speaking - we're spread out all over the country!) and talk about what we're working on as a group, and chat about issues that affect us, share advice and generally support one another. It's the absolute best bit of my job, I love it, and love how we make a difference to each other's lives.

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What personality type are you?

What personality type are you?

There’s always loads of quizzes going round social media to tell you important stuff like which character from a TV programme you’re most like, or which country you’re destined to live in or even what your coffee choice says about you. But there’s also a few around which are based on more serious psychological theories.

Take Myers-Briggs for example – in my experience that’s the one that is most commonly done in work places, helping managers understand the makeup of their team and how to relate to them.

This week a colleague sent me a link to a free Myers-Briggs type test – you can find it here: https://www.16personalities.com/articles/our-theory Its based on a combination of Myers-Briggs Type Indicators and trait-based theories. This test says there are 16 different personality types, broadly described as analysts, diplomats, sentinels and explorers. I expected to come out as one of the analyst types – that’s been my job for most of the past 15 years so it’s a logical conclusion to draw!

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Hydrotherapy and me

Hydrotherapy and me

One of the treatments I had the chance to try was hydrotherapy. I’d been referred to rheumatology following a positive ANA blood test, and the consultant I saw was brilliant and wanted to do whatever she could to help me. She referred me to the physiotherapy team based in the rheumatology department and I met up with the head therapist to talk through my symptoms and the problems I was having with movement. She recommended hydrotherapy and talked about graded exercise therapy.

Now, I know that’s a pretty controversial treatment for a whole variety of reasons. I’ve read many stories about people becoming more ill as a result of trying it. But the things the physio was saying made a lot of sense. She didn’t just talk about walking and very slowly increasing the distance or time spent leaving no energy for anything else - she included all the different activities you might want or need to do. She told me to always listen to my body and only increase when I was stable with a level of activity. The activity wasn’t just walking, it was normal things like washing your hair or cooking. It was all about getting the balance right and prioritising important daily tasks over walking or other exercise.

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My CFS/ME diagnosis story

My CFS/ME diagnosis story

I first started getting sick in May 2014. I thought it was IBS, some new food intolerance or something like that. But it didn’t let up, so I went to see my GP. I’d learnt from my coeliac disease experience that pretending I was ok when I wasn’t was a really bad idea. And I’d also learnt not to let doctors palm me off!

I was going through a really stressful time at work, there were big restructures underway and people were losing their jobs everywhere. I was on a secondment which I’d lost my passion for, but dreaded the prospect of going back to my substantive post. That environment was seriously bad for my mental health!

The doctors tried to tell me that maybe it was IBS brought on by the stress. That’s not unusual after all. But months later nothing had changed

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My Coeliac Disease Story

My Coeliac Disease Story

People always ask how long it took to get diagnosed- officially it took me 5 or 6 years, but looking back the signs were there a long time before that. I don’t have any family with Coeliac Disease, but my mum’s side of the family has a lot of allergies (including peanuts), intolerances and auto immune diseases (diabetes and thyroid problems).

When I was a baby I had soya milk as I was allergic to cow’s milk. I was also allergic to eggs. I grew out of that eventually but always had stomach problems if I overdid it on the cheese.

I was a vegetarian as a teenager (after an incident with corned beef hash, a painful memory to this day!), and very pale, tired and emotional. I had incredibly heavy periods, until eventually, age 16 and the day of our year 11 prom, I collapsed at school. I went on holiday to Spain with my family that summer and by the time I came home I was struggling to eat. Every time I ate more than a few mouthfuls I felt sick. I virtually gave up food, only eating when I didn’t have any choice in the matter. I couldn’t see the point of eating something that made me sick. I lost weight.

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