The Great Unease

One thing I have learnt over the past 10 years since being diagnosed with a life-altering illness, is that I am yet to feel at ease with my life. There comes a time in your life, when you hit the big THREE-O and you’re supposed to have your shit together. Well, I thought I had my shit together; turns out, I haven’t.

You see, I’ve always been an old soul. I’ve always known I wanted to settle down, get married and have pets (never children) and while it seems I am on track with my life goals, I am still feeling the great unease surrounding who I am and what I bring to the world.

Since I was a young teenager, I’ve always wanted to be famous somehow. I wanted to sing, but stagefright put paid to that dream – likewise with acting (for which I was awarded an ‘exceptional’ from my year 8 Drama teacher) and performance anxiety has shrouded my life in many ways.

I’ve always had the fear of being like everyone else. When I was at school I made it my plan to stick out like a sore thumb – and was bullied because of it. But I was stoic in that I didn’t want to fit in and be like everyone else, so I took it and it made me strong.

Yet here I am at the age of thirty, wanting, in part, to be like everyone else. Not, in the sense of I want to be in a job I dislike, pay rent to a greedy landlord and have children drive me round the bend, but in the sense that I want to be a productive member of society. (You have no idea how much I hate myself for saying that!)

Living with an incurable, oftentimes debilitating illness means I am not a ‘productive’ member of society. I am unable to follow my career goals (of which I have had many, shot down in a blaze of smoke) and now I’m left with a sense of ‘now what?’

I felt so compelled by these feelings of unease that last year I enrolled onto a distance learning Degree in History and surprisingly to me, I’m doing very well on my first module (If I was studying at a brick uni, I would be at distinction level!) and I’m really enjoying spending time wisely, studying. I no longer felt like I was wasting away in my bedroom waiting for the weekend when I get to spend time with my partner of nearly 3 years.

However, I’m now nearing the end of my first module (of which there are 6 – one per year) and I’m finding myself twiddling my thumbs again. I’ve started the audiobook of the set book for my next module yet it doesn’t start until October.

People think being at home and ‘off work’ is a dream lifestyle. I won’t argue that it has its benefits – I can stay up as late as I want and wake up as late as I want, for example, but I’m also trapped inside 4 walls for 90% of my day and two thirds of the week. As an unworking woman, I do not have the funds to be galavanting around in a car (I can’t drive manual and cannot afford an automatic car) nor do I have the energy to do so.

I spend my days lying on my bed in various positions (shifting when the pain becomes too much to bear) and it’s demoralising. Seeing all those people on Instagram going places in life makes me feel uneasy. In the pit of my stomach I feel the longing to have a ‘normal life’ like all these people I watch every day.

But then, I have to remind myself, yet again, that I’m not normal. I do have an incurable illness and I will have it for the rest of my life. It’s really really hard to balance this unending feeling of disquiet in my soul, with the knowledge that I’m doing the best I can. I have an enquiring mind and I want to see the world – this is in complete competition with the fact that my body was not built the same way as my mind. My body is broken, but my mind is sharp.

How does one reconcile a life wanted, with the life given? How does one overcome the odds when they are all stacked against you? This is something my mind continues to wonder, while I lie here, in pain, day after day.


Paris, Prague and Budapest

As I’ve posted before, my partner and I are keen travellers. We’re both extremely inquisitive people and we both share a love of seeing what the world has to offer.

In March this year, we went on a 6 day jaunt across Europe. We decided to visit three countries and spend 2 days in each country. 

First, we got the Eurostar from London to Paris. We stayed right by the Gare Du Nord as I needed to walk as little as possible. We visited the Eiffel Tower, Notre Dame cathedral on Easter Sunday and queued for HOURS to see the Paris Catacombs…

Here are the Paris Catacombs

Notre Dame Cathedral

We then flew from Charles de Gaulle airport to Prague airport. We stayed at the 4 star Hotel Yasmin in Prague. It was beautiful and the best breakfast I have ever had! We booked a taxi into the old town and had a mooch around. I found this amazing little bric-a-brac shop and if I had more space in our suitcase I would’ve easily spent a small fortune in there! It absolutely threw it out with rain while we were in the old town so we jumped into a doorway to find it was the entrance to a museum of medieval tortue, so of course we had to go in!

Prague was sensationally beautiful. We most definitely want to go back and stay nearer the old town as there was so much to look at and so little time to do so. I watched a documentary years ago about an ossuary in Prague and ever since then, it has been on my bucket list. Knowing this, my partner took us on the train out of Prague and towards a town called Kostnice to visit Sedlec Ossuary.

After 2 days in Prague we packed up and flew to Budapest. We stayed in a rather grand looking Novotel Centrum. 

We found the most amazingly hipster restaurant in the Jewish quarter in Budapest. It had a library! And served the most beautiful Hungarian wine called Bull’s Blood. Divine. 

I feel I need to describe how difficult it was for me, physically. I’ve written before about having Ehlers-Danlos Syndrome so I hope by now you’re not surprised when I say this holiday really took it out of me! We stayed two days I each country so I could sleep and rest on the second day. The pain rehab would call this ‘boom and bust’ but I call this ‘real life’. 

There is no real way you can pace yourself on holiday like this. We made sure I had a box full of painkillers and heat pads and I travelled with all my splints and walking stick. I sat down on anything and everything I could put my butt on and went to bed early every night. I took a nearly an entire week of rest to recover from the travelling (well, as much as I recover anyway!). 

This is the only way I’ve found works. Others may pace themselves or go on beach holidays but I refuse to. Firstly, I hate the sun (don’t like being tanned) and it makes my POTS worse. European breaks are ideal in terms of short flights and semi-decent weather. 

Our next trip is in December when we fly to Basel in Switzerland then two days later we fly to Freiburg in Germany. It will be snowy, wintry and Christmas markets galore! I cannot wait! 

Back in the saddle

It’s been weeks since my last post and I feel like I’ve been really neglectful of this place recently! It’s time to change that. I WILL start writing regularly again, I promise.

Anyway, a lot has happened since I wrote last – I was accepted onto the residential Pain Management Course at Stanmore for three weeks, starting later this month. I’m hugely relieved to have been accepted but now I’m absolutely bricking it too! I’ll be blogging about my time at Stanmore because I know when I was applying for it, I could’ve done with as many people’s experiences as possible, so hopefully this will shed some light for others yet to attend the course (or who are applying!). Watch this space.

I’ve written before about my love of travel and I’ve just returned from a 6 day European City trip – my partner and I visited Paris, Prague and Budapest and spent 2 days in each city. I’m still feeling shattered since coming home nearly a week ago, so I shan’t be going off on any more jaunts for a while. I’ll write a separate post about our European adventure another day when my hands aren’t seizing up; I got some great photos to show you all.

If you’re into vintage fashion, have a look at Vintage Life Magazine this month – you’ll see a rather large picture of my face!


Feeling tired, so I shall bid you adieu for now!

Winter Break; Iceland. Part Two

It’s been 4 weeks since we came back to Earth with a bump from our winter break to Iceland and I can say hand on heart, I really do miss being there – so does my partner who said only the other day that we will be going back, for sure.

In part one, I talked about the Blue Lagoon and how to pack for a winter trip if you have a chronic illness. In this part I’m going to be describing Reykjavik, The Golden Circle Tour and the Northern Lights.

Firstly, Reykjavik.

The bus journey from the airport took us around 45 minutes. Our hotel was in the centre of Reykjavik (on Laugavegur which is the main shopping street in the town) so we got to see a lot of the outskirts on the way and it wasn’t too pretty. But once we got into town, we saw how pretty it was! The hotel was placed in the middle of Laugavegur so we were within walking distance of the Harpa (the concert hall) and the world famous Phallological Museum. Of course, we had to go to the Penis museum – it was hilarious.

Our first night’s meal was stunning at Laekjarbrekka – one of the oldest buildings in downtown Reykjavik. I had a traditional Icelandic lamb meal and my partner had a vegetarian Barley based meal. We both loved this little romantic restaurant.


Image borrowed from

Before we went to Iceland, people warned us that it was expensive and yes, it is! We didn’t buy anything other than food and excursions and I came home with £20 worth of Krona left. My partner had a little bit more because all his meals were vegetarian and therefore slightly cheaper than my meaty meals! We both took around £300 worth of Krona with us for the 5 days we were there and it was enough. If you wanted to buy a (very itchy) wooly Icelandic jumper, you’d need around another £100 worth of Krona.

Here’s Hallgrimskirkja – the Church we went to for New Year’s Eve fireworks.


Another thing we decided before we went to Iceland was that we wanted to TRY and see the Northern Lights. My partner was adamant that we’d see them, but I tried to keep an open mind so I didn’t get too disappointed if luck wasn’t on our side.

We booked our Northern Lights tour with Grayline (we did all our excursions through them) and I have to say a huge thank you to the guys running this excursion. Normally, the tour runs for around 3-5 hours depending on the weather and how far they take us to find the lights but for us, they went above and beyond because they realised that this was the only night during this week anyone was likely to see the Northern Lights and I am so thankful they did, because WOW. You cannot describe the feeling you get when you see the cloud suddenly part, and the light show dances before you like you were the only people worthy of seeing this natural phenomenon.

Sadly, my blasted iphone wasn’t good enough to take any images (and we both decided beforehand that we wanted to experience the phenomenon of the Northern Lights without seeing it through a camera) so you have to take my word for it, but holy murphy, it was sensational. It felt spiritual. It felt mystical. Other worldly.

If there’s one thing you should do in your life, it is see the Northern Lights in person.

Because the weather didn’t look great for the rest of the week, the guys running the tour decided to take us further north than they normally do on the Northern Lights mystery tour. We didn’t get back to our hotel until 3am, but it was so worth the tiredness!

As we were only in Iceland for 5 days we booked as many excursions as possible so the next day (after 5 hours sleep) we were up and out for the Golden Circle tour.

On the Golden Circle Classic Tour we first visited Þingvellir National Park. Breathtaking.



Gullfoss Waterfall: The first waterfall I’ve ever seen and wow, it was stupendous!



Then onto an erupting hot spring at Geysir geothermal area


Thank you Iceland. We will be back ❤

The 10 year old taxidermy lover


My family have been holidaying in Cornwall every year since I was around 6 months old. We’d stay in Port Mellon and then when me and my sister got older, as a family we would walk into Mevagissey (Meva) for a look round the shops, for some chips on the harbour or a carvery at The Ship Inn on a Sunday.

As a young girl, I was obsessed with the idea of having a Victorian dolls house and there was a shop in Meva called Curio Corner that had a whole back room dedicated to dolls houses. It had miniature everything and several pre-built houses all decorated in the Victorian style. The hobby of creating a doll’s house was and still is, an expensive one, and we weren’t very well off at all back then, so owning a doll’s house just wasn’t an option, sadly.

As I got older, I grew out of the Doll’s House ‘phase’ and I took a fancy to staring at the animals on the wall. There was a tiger head (or it may have been a leopard), a crocodile (which is still there today), several types of deer and in a little case was a tiny little pet dog. I think there were others too, but it’s been years so I can’t remember exactly what was hanging up there.

At the time, I had no idea what taxidermy was, but I was fascinated with it. Every year I’d go in there just to visit the big wall of taxidermy at the back of the shop and stare in awe at these dusty old creatures that looked like they needed a loving home. It was incredible to a young girl of 9 or 10 – if a little macabre! But clearly I’ve always been into strangely macabre things, even as a young girl.

Thankfully, as an adult, it doesn’t seem quite so strange to enjoy collecting taxidermy. In fact, it’s having something of a resurgence in popularity, which means fewer people seem quite so surprised when I tell them I collect it. I can’t quite put my finger on why I like taxidermy, though I do think that the Victorian’s obsession with death is part of it. I too think these animals look beautiful, even in death – somehow suspended in life and death at the same time.

I still get the ‘marmite’ reaction when I talk to people about my growing collection of taxidermy; they either love it or hate it.  I rarely come across anyone who doesn’t have an opinion about taxidermy either way!

I’ll be writing another blog post about my growing taxidermy collection and I’ll be talking about Crystal Curios – My favourite shop in Milton Keynes.

If anyone is still interested, Curio Corner in Mevagissey is still there 20 something years later, but sadly there isn’t quite the same display of taxidermy and they no longer sell dolls houses, but I still have to walk round it when I go back, just for nostalgia’s sake.

The loves of my life; The Mediaeval Baebes

As I’ve said many times before, I was a strange child. I was strange in that I absolutely adored listening to folk music (thank you, again, Mum!) and remember seeing the original Steeleye Span at The Stables in Wavendon back when it was just a shed – I must’ve been around 12 years old.

I first heard the Mediaeval Baebes on VH1 singing Gaudete, a song I already knew because Steeleye Span did a version at The Stables. As soon as I heard the Baebes’ arrangement, I knew I’d found something rather special.

The Mediaeval Baebes are an all female choral group who write their own arrangements to traditional medieval songs and poetry. They have a backing group of very talented musicians playing traditional medieval instruments.

As soon as I saw that their 2nd album Worldes Blysse had been released, I knew I had to have it. I can remember opening it at Christmas as playing the album on repeat, with the lyrics in the album cover. I just had to know all the lyrics and I can now recite Mediaeval Baebes songs in Italian, Medieval English, French and Latin (I’m sure I’ve missed some!) and I can’t be prouder of that fact. There is something about the Baebes music that appeals to the deeper parts of my soul. It’s like I was born to hear this music.


I first saw the Baebes perform live at The Stables when I was around 15 and a few times at Berkeley Castle Joust where I managed to get the courage to have a poster signed by them, which of course, I still have (and will be proudly displayed when I have my own place!) and I’ve also seen them at Birmingham Cathedral for a wonderfully festive Christmas concert and last year at Loxwood Joust .

I’m also happy to report that the (other!) love of my life, my partner loves the Baebes too, so now instead of dragging my Mum along, I get to take my man instead!
(Cue me wanting the Baebes to perform at our forest wedding one day!)

In 2010 the Mediaeval Baebes put together an opportunity for us ‘normal’ folk to learn a couple of their songs and sing alongside them in a mini concert in front of our friends and family. Of course, I had to do it! It was a fantastic (if, very nerve wracking!) day and I got to sing with two of my favourite Baebes – Katharine Blake and Bev Lee Harling. Sadly Bev is no longer singing with the current Baebes lineup.


My love for the Baebes has never waned, although they did lose me a bit when they released Undrentide, which was a bit too new-age and modern for my tastes and I’m pleased to report that the Baebes are sounding more like their original selves than ever before!

One of the many things I love about the Baebes is their professionality when they perform. They are always so tight, their timings are beautiful and you can see how much work Katharine puts into writing and arranging the songs. I am a huge admirer of Katharine Blake as a musician, a true artist. Anyway, enough blowing smoke up their ass!

Here are a few pictures I took at the 2015 Loxwood Joust…


So, if you’re into medieval music, folk music, acapella or classical music, I cannot recommend the Mediaeval Baebes enough. The Mediaeval Baebes have played such a huge part in my life and I can say I am a forever fan.

From the young geeky bespectacled girl singing along at the top of her voice at Berkeley to the twenty something woman at the front singing along at the top of her voice, a fan for life x

Winter Break; Iceland. Part One


Since my diagnosis of Ehlers-Danlos syndrome at the age of 19 (shortly after returning from a birthday trip to Paris with a severely sprained ankle!) I’ve made the decision to see as much of the world as I can before I’m in a wheelchair. The likelihood of needing a wheelchair is increasing, as I get older, more things seem to be going wrong with my body.

BUT, for now, I’m not letting it stop me and I have vowed to travel as much as I can, within my limitations. Thankfully I have an incredibly supportive partner who is as passionate about travel as I am but he also forces me to be realistic and look after my health. He really is better at it than I am!

We’ve talked a lot about where we’ve always wanted to go as individuals and Iceland was on both our bucket lists, so we thought ‘fuck it, let’s do it’ and the next day we were sat in front of a travel agent booking a winter break to Iceland.

I did a lot of research into the weather, as other EDSers may know, cold, wet, damp weather plays havoc with our condition, so I was nervous about spending time in a snowy country. But, I also researched the appropriate clothing and as Billy Connolly rightfully said…

“There’s no such thing as bad weather, only bad clothing”

So I stocked up on base layers, mid layers, salopettes, snow boots and a ski jacket. I went straight to my GP and asked for a strong painkiller to take with me and stocked up on heat pads.

As soon as I knew we were going to Iceland I knew we had to visit the Blue Lagoon geothermal spa I’ve heard so much about. Hydrotherapy is a wonderful tool for EDSers so I knew it would be stupid for me not to do something holistic on our winter break. It was a nightmare trying to book in as you HAVE to buy your ticket before you get there because it sells out so quickly – our travel agent Thomas Cook failed to tell us this so we had a mini crisis that Gray Line Iceland managed to sort for us, thankfully.


Unfortunately the pictures came out pretty terrible as I was trialling a really cheap underwater camera, but you get the gist!

It was around 1 degree outside, throwing down sleet like nobodies business, dark until 11:30am and we booked a 9am slot… Hilarious wasn’t the word!

We booked ourselves Premium tickets which included the use of a robe, towel, flip flops (which were ours to keep), a complimentary drink at the lagoon bar, a lunch reservation at the restaurant and a complimentary drink with our meal.

My partner is a vegetarian (bless him!) and didn’t really fare too well when it came to eating in Iceland, especially at the Blue Lagoon, whose idea of a main meal was carrots on a bed of salad – shame on you Blue Lagoon. My meal however, was beautiful – I had the fish of the day and it was stunning. I went for a dessert rather than a starter and it was an orange Crème brûlée nearly as big as my head! It was sensational.



Before our trip I did a lot of reading about the Blue Lagoon and how the silica can make your hair really dry and frizzy, so I decided to be sneaky and shower before entering the Blue Lagoon without getting my hair wet. I piled all my hair up and hoped it didn’t get wet. They recommend putting conditioner on your hair, but I went without. Luckily, my hair stayed pretty dry throughout the day and blow dried normally afterwards.

Here’s a selfie I took whilst swimming. Notice how I managed to keep my eyeliner on for the whole thing – I saw LOTS of panda eyes that day! Ladies take note; don’t go to the Blue Lagoon in a full face of makeup… it will succumb to the hot, salty, silica infused geothermal water and you will look silly!


My partner being the wonderful man he is! 😉


Stay tuned for Part Two where I’ll be describing the Northern Lights, Reykjavik and the Golden Circle Tour.

Book Review: The Kingkiller Chronicle by Patrick Rothfuss


So, my partner is a massive Tolkien fan and whilst I’m not a fan of Lord of The Rings in any capacity, I do trust his recommendations for books. Before we met, I’d already devoured the entire A Song of Ice and Fire series by George RR Martin, so after my partner finished reading The Kingkiller Chronicle by Patrick Rothfuss, I decided to give it a go based on his recommendation.

Let me start by introducing the mysterious Kote, the protagonist. He’s a rather good looking, fiery haired young man who runs an inn in a small town called Newarre. Things aren’t quite what they seem, when a travelling scribe known as Chronicler comes sniffing around asking questions about the legend of a man called Kvothe and strange things start to happen.

We sit down with Kote and Chronicler and hear Kote relive his fascinating past as Kvothe (the man, not the legend). Stories of travelling actors in wagons, magic spells and forces of evil that eviscerate his entire family.cover-paperback-wise-man_277 The Kingkiller Chronicle is a trilogy, but only two books have been published so far, so I am yet to read the third, but after I demolished the second book The Wise Man’s Fear I felt bereft – I needed more Kvothe in my life.

You know you’ve read a great book when you miss having a fictional character in your life!