Fibromyalgia in the Media

The first doctor I saw after my diagnosis told me fibromyalgia didn’t exist. I was in my early teens about seven years ago. Over the years I’ve encountered many sceptics, from those who have denied it’s existence outright to well wishers telling me they know of someone who had a “touch of fibromyalgia” who almost always has been miraculously cured within a few weeks.
Historically, fibromyalgia has been viewed as merely an inconvenient condition or worse, a scammers dream come true. It’s very difficult for fibromyalgia to be proven through tests, a truly invisible illness. A diagnosis is reliant on symptoms dictated to a medical professional, in conjunction with tests ruling out something “more serious.” It’s the type of condition a lot of people associate with an excuse for laziness, or more worryingly an easy way to claim benefits either as disability payments or to subsise the inability to work.
This stereotype is continually perpetuated in the media. Whether it’s an episode of ‘House’ where pain medication is substituted for a placebo which eased the patient’s symptoms. Or the comedy film “Identity Thief,” which depicts Melissa McCarthy, dramatically falling to the floor crying out about her Fibromyalgia. As much as I adore and admire her work, to me, this scene was problematic. As the title suggests, she plays a character who has stolen multiple identities and supports her lifestyle by conning and scamming the people around her. Although not expressly stated in this scene, the background of the character adds to the suggestion that Fibromyalgia is a made up illness or at the very least a convenient condition, used to get out of something or to gain sympathy.
A feature segment on ITV’s popular program ‘This Morning’ where a lady claimed that dressing as a doll helped her deal with Fibromyalgia. The hosts asked questions in depth about her clothes, her shoes, how much she had spent on her collection. The one thing that was missing… proper questions about fibromyalgia. Quite rightly this received a lot of backlash from the Fibromyalgia community as it was seen to trivialise the condition and omit all the relevant factual information or delve into the way fibromyalgia can impact a person’s life. I agree with the interviewee, ‘distractions’ can be a great way of coping with pain, but in a time where the media seems to be against us, I worry how this will impact the fibromyalgia community as a whole.
In the relatively short time since I was diagnosed with fibromyalgia, the condition has gone from extremely obscure, to something people have at least heard of. Not only has it become more widely recognised, funding and research is helping sufferers better deal with the condition and it’s limitations. In many ways 2018 is the year of acceptance. The terms ‘invisable illness’ or ‘hidden disability’ are regularly used and mental health awareness seems to be at an all time high. Maybe one day Fibromyalgia will be taken more seriously, and we won’t have to ‘prove’ our pain. Maybe it will be recognised as the life altering and in many cases devastating condition it can be. I for one certainly hope so.

Marshmallow

I like to compare myself to a marshmallow. I’m gooey and squidgy on the inside and on the outside – pretty much the same. I don’t have a thick skin, so like a marshmallow my exterior is only slightly more resistant than the inside. Oh and in the sun I go pretty pink.
I’ve always been a sensitive soul, I take things to heart. Even things from people I completely despise cut deep. Being young with an invisible illness, I need to develop a thicker skin, thicker than most people. People are quick to judge others, especially if you don’t ‘look’ disabled.
The truth is, most of us with invisible illnesses become pretty good liars. We hide the pain from the outside world. Like Elsa we “conceal don’t feel” (if only I underwent a glamorous transformation every time I had a flare up.) It’s not easy to hide the pain, it’s for the benefit of others mostly. People don’t like seeing others in pain – understandably so. However not being visably in pain, causes others to doubt my credibility. I’m seen as a hypochondriac “there’s always something wrong.” People get fed up of me cancelling plans or not being able to do everything an able bodied person can. Yes there’s “always something wrong” it’s called Fibromyalgia, it’s always there and will always be there. Also, if my condition is annoying to you, imagine how annoying it is to me.
I’ll be the first to admit I’m pretty accident prone. If there’s an object near me, you can guarantee I’ll walk into it or trip over it. On top of the symptoms of fibromyalgia I’m usually covered in bruises and potentially limping. I’ve always been clumsy, although it’s a symptom of fibro, I think it’s just a symptom of being me.
You can’t argue with a black eye, an arm in cast or a missing limb. You can argue against generalised pain, anxiety, nausea, fatigue, headaches and pretty much all the symptoms of fibromyalgia. Just because you can, doesn’t mean you should.
I recently used a mobility scooter for the first time in a supermarket. My body was fatigued, my feet turned inward and I started waddling like a duck – a tell tale sign that my body has had enough. I thought about using a wheelchair but my body was too fatigue to self-propell. I’m well aware of the stereotype of a mobility scooter user. It’s assumed that you’re either lazy or too fat to walk or both. They think of the people in Wall-E flying around in futuristic vehicles that are reminiscent of a mobility scooter. As someone who is more Michelin man than Barbie girl I knew what people were going to think. Although no one said anything derogatory to me, I could feel their judgements. It seemed to me that people went out of their way to make it difficult to get around. A lot of it was probably paranoia, I felt self conscious using the scooter so I over analysed the body language of other shoppers. But at least some of it wasn’t my anxiety getting the better of me.
I love the phrase “those who mind don’t matter and those that matter don’t mind,” and most of the time I’m surrounded by the people that ‘don’t mind’. But I still find myself caring deeply what the stranger I passed on the street thinks. My marshmallowy mind muses constantly on other people’s thoughts but really, why should I care? Do their doubts make my pain any less legitimate? No, then why do they matter so much to me? It’s very difficult not to take it all to heart, I have tried not to care what others think but I just can’t seem to do it. So I am trying to shed the marshmallowness in favour of another of my favourite foods. Goodbye Miss Marshmallow, hello Tough Cookie!

Sensory overload

Sensory overload is a condition often associated with forms of Autism. In recent years we’ve seen more ‘autism friendly’ movie screenings and shopping hours, as well as more children wearing ear protectors. As a symptom it is becoming more accepted but not necessarily more understood.

Many of us with fibromyalgia also suffer with sensory overload, ranging from a mild dislike of loud noises to be effectively isolated because of it. For me, the biggest issue is sound. It doesn’t affect me in the same way all the time. Some days I could enjoy busy bonfire night celebrations, the bang of fireworks, the smell of bonfire smoke and toasted marshmallows and people rushing around to find the best views. Other days however, I’m stuck in bed with the TV volume and brightness turned right down and hiding under the covers.

Earplugs are a staple in every bag I use. I buy them in big multipacks for when I inevitably lose one. I use them in every situation imaginable. In the cinema, at home, in a restaurant. I could be wearing an elegant ball gown (theoretically – can’t see that happening any time soon) and you’d still see the bright orange sponges sticking out of my ears.

It does embarrass me, having to use them, but I feel worse thinking other people will think I’m being rude. The sound of loud, shrill, crying children, is one of the worst I’ve encountered. It’s like it burrows into my head and consumes my thoughts. It is a sound I cannot ignore or tune out. I’ve tried. It’s like a pneumatic drill, hammering into my brain. Either I remove myself from the situation, which isn’t always possible or I put the earplugs in.

I always worry the child’s guardian will feel bad because they can’t stop their child’s crying and the practically luminous orange earplugs are hardly inconspicuous. They’re like bright traffic cones popping out of my ears, signalling that I am uncomfortable. I understand that the parent can’t always stop their child crying, it’s not their fault, and it’s not their child’s fault either, it’s just what children do. I would hate to think that they feel uncomfortable because I’ve had to put my earplugs in, but the sound is so uncomfortable for me that I have little other option.

My sensory overload symptoms ebb and flow in correlation to my anxiety levels. If I am calm and feel safe, I am much more able to deal with everything. If I’m having a panic attack or if my anxiety is bad, it is like the world has been turned up to 100. Whispers seem like screams, a sepia environment is as bright as children’s TV. Colours are garish and intense. Soft feels rough, cool feels like ice, and warmth is like fire. Sensory overload can be debilitating. Like living in a nightmare where everything is distorted and confusing and just too much.

Sometimes I have to wait it out. Sometimes I have to hide in a corner or under a duvet until it’s all okay. Sometimes I have to fight against the people telling me “it’s just a noise.” At that moment it is not just a noise. Not to me, not to millions of other people who deal with the symptom. It’s a sharp pain, it’s a gunshot, it’s a fire alarm, it’s an explosion in the ear – it’s only a creaky floorboard.

Fibromyalgia Fashionista

As I’ve mentioned in other posts I’m a bit of a fashion fanatic. To quote Carrie Bradshaw “I like my money right where I can see it.. hanging in my closet.” I always had a bit of a ‘no pain no gain’ attitude to fashion, high heeled boots, tight skinny jeans, glittery mesh fabric that was beautiful but didn’t half itch, that sort of thing. Although I tried to keep up-to-date with current fashion fads to an extent, I maintained my own sense of fashion. A sort of classic and vintage style. Think Audrey Hepburn but a bit more casual and a lot heavier.
A lot of people don’t understand how much fibro can effect your life. Symptoms have a knock on effect on life, family, work, confidence and less obviously style. Comfort becomes key, which can in turn mean boring clothes, but I’m not prepared to join the beige brigade just yet. So for all my fellow fibro fashionistas I have compiled a few tips that help me stay feeling like me, whilst being (mostly) pain free.

I know a few people that swear by FitFlop shoes, but as a self proclaimed bargain hunter, I just couldn’t justify the cost. With many of the shoes upwards of £80 I was reluctant to part with that much money. Luckily for me a wonderful thing called a ‘sale’ was invented! With my first purchase still over £40 it was still fairly pricey but based on the reviews I thought I’d give them a go. They were comfortable, stylish and well worth the money I’d say. A few years ago, when first investigating the option of FitFlops they all seemed a bit dowdy, they looked ‘comfortable’, not appealing to a teenager. Now they are as attractive as they are comfortable, with different styles to suit all tastes.
Like many chronic pain sufferers I’ve put on a fair amount of weight, mostly from the cocktail of medications I take and a little because I have an insatiable addiction to chocolate. It can be very difficult for plus sized people to find flattering and affordable clothing, but when you add in the fibro restrictions it can seem near impossible. For me, M&S or Next provide the most comfortable, affordable and fashionable plus sized clothing. I tend to buy clothes a size up nowadays, and soft fabrics are a must. Trousers I always buy a size up to allow room to move, and stops buttons, zips or elastics digging into my skin. Stretch fabric is also essential, it’s much less restrictive, comfortable and allows me to move as ‘freely’ as my body allows.
Leggings and long comfortable tops or jeans and a cosy jumper are my go to outfits.

When occasionally I decide to dress up, I choose ‘Snag’ tights. At Snag they have made it their mission to cater to all body types, tall or short, big or small, they make tights to comfortably fit everyone. They make tights with different sized waistbands rather than just changing the length, making them better fitting for a cornucopia of shapes and sizes. Personally, I like my tights to be big, the bigger the better. If I can pull them up to my shoulders I consider that a win. I bought the biggest size, and they reached just above my waist, so when they started to fall down a little (as all tights do) I was able to avoid the webbed effect turning me into a penguin. They slipped to just above my hips and rested there for the remainder of the day. Comfortable, well fitting and affordable – certainly gets a thumbs up from me.

The garment I have had the most problems with have to be bras. Underwires are a complete no no for me. My ribs are so sensitive that the wires would be agony for me. After disbanding with wired bras I first tried so called comfort bras. Whilst they are comfortable they’re unsupportive and quite often a rather unattractive shade of beige. Then I moved on to non wired sports bras. These were better I must admit. I found Matalan a good source of sports bras. The issue I found with them, was that they were often so obvious. You would either see the Racer back or the chunky straps poke out of my clothes. Whilst this isn’t a major issue, it can detract from an outfit when you want to look special. The answer? Bralettes!!! An amazing invention by the comfort fairies, and they are often so pretty. I struggled to find one in my size, but recently Primark have begun to stock non-wired bralettes in large bra sizes, making it more accessible to more people. They come in a variety of colours, with pretty lace and other embellishments. Finding these just helped me feel a bit more normal again. I didn’t have to stick to boring plain underwear, which was often expensive and ugly. These bralettes cost me £6 each and they were far from ugly. Having such a wide choice took me back to days before fibro.
As I am fairly lucky and don’t have too many problems with my clothes, I called in the cavalry. My Fibromyalgia Facebook family – Fibromyalgia Warriors Cymru (FWC) who have very kindly let me share their stories and suggestions.

“I can’t be doing with buttons and zips. I suffer with my wrists and arms so trying to pull up a zip or doing buttons on a shirt is a toughie for me. Have a dress on today and funnily enough there’s 2 buttons at the back of my neck, I’ve been walking around with the buttons undone all day, but the lovely girls in the chemist decided to do them for me when I went to collect my tablets!!!!” – Sara Preece FWC

“I think fastenings like buttons and bra hooks can be a struggle and getting shoes on and off. I can only wear cotton as I find anything else makes me sweat like Lee Evans! Plus of course they have to be low care, I’m not going to iron or hand wash things! I pretty much live in leggings, t-shirt bra, big granny knickers and loose fitting pull on tops with no buttons or anything and my all time fave.. pjs!!” – Tesni Rivers FWC

“Shoes are a problem, I only wear orthotic flip flops or ugg type boots. Leggings and loose tunic tops in cotton from Seasalt or Joules (On mailing list so sales and special offers) and pjs. Comfort over style anyday!” – Jo Jones FWC

“If you can’t cope with wired bras, buy maternity, feeding or post surgery bras. These are soft and supportive, whilst being pretty!” – Louise Jane FWC

“Can’t wear heels anymore now , so wear them when I’m in my (wheel)chair” – Sammi Delphia FWC

“I was born with a club foot so I’ve always struggled with pain when walking. I’ve had multiple operations to try and help the problem but it hasn’t done a lot. No matter what type of shoes I wore, none reduced the level of pain. I’ve recently bought a pair of Fit Flop trainers and they’re probably the best ones I’ve tried. They’re really comfortable and help reduce pain. They offer a good level of support and adapt to the shape of your foot to add extra comfort.” – Jacob Morris*

Here are a few links that might help you.
http://www.fitflop.com
snagtights.com
http://www.primark.com

Some retailers of plus sized clothes
http://www.next.co.uk
http://www.marksandspencer.com
http://www.jacamo.co.uk
http://www.simplybe.co.uk
evans.co.uk

If you want some money back from shopping sprees, check out Quidco and Topcashback using the links below. They offer cashback for a multitude of websites for a multitude of things. **

https://www.quidco.com/user/8048227/

https://www.topcashback.co.uk/ref/Member220582316324

Big thank you to everyone that shared their stories and advice. Please feel free to comment with your own suggestions or problems ☺️


*Not all contributers have fibromyalgia but share similar clothing requirements
**Sign ups from cashback links may provide me with additional cashback, however I only recommend products and services that I think are beneficial.

Happy birthday and Thank You

Just over 70 years ago on the 5th of July 1948, the National Health Service was launched by Aneurin Bevan, the health secretary at the time. His aim was to provide everyone with access to proper health care regardless of wealth and background. Those ideals help millions of people every single day.

The NHS is often subject to a lot of negativity, and it’s easy to see why. Waiting lists can delay care by several months, maybe even years. Staff are stretched to the limit and funding is constantly lacking. Often leading to patients not getting adequate care. However I couldn’t imagine life without it.

Many of us chronic conditions can often end up feeling resentful towards medical professionals. It can take years of going back and forth and back and forth before a diagnosis is achieved. It’s human nature to be negative. We recall negative memories much more easily. We can all remember the doctor. The one doctor that made us feel worthless, or ridiculous or told us it was in our head. Our negative bias brings up that memory every time we go to the GP or has a hospital appointment. The truth is for most people the doctor was just one person. Just one in the hundreds of NHS staff that have gone above and beyond for our care.

In my early teens I had a mystery illness. It still doesn’t make sense to me or my family. I look back and remember all the tests, all the times I was told there was nothing wrong. It was a horrific experience. That’s the first thing I remember. Then I remember the people. The nurses from the paediatric wards that took my blood. I was scared of needles, petrified at first, but they calmed me down. They explained the process and made it so much easier for me. I was old enough to have my bloods taken at the GP or at adult wards, but my veins would collapse and I was so so scared. The paediatric nurses used small needles, ones used on premature babies. They took blood from my hand rather than in the crook of my elbow because it was less uncomfortable for me. They chatted to me and joked and giggled until I was no longer scared. The next time I had my blood taken I didn’t shake, I didn’t cry, I just laughed and joked with the nurses and relaxed.

I can remember being in a hospital gown. The ones that are open at the back. I had to walk around with just that and my underwear on and I was embarrassed. I was 13 or 14 and it was horrible. That is until a nurse came and realised how uncomfortable and gave me another gown to put on backwards, and a blanket to keep warm.

My GP is incredible. She is the best doctor I’ve had. The first time I saw her I was so nervous. A seemingly endless string of doctors before her that didn’t understand had made me scared of doctors but she understood. She is friendly, softly spoken and put me at ease. I remember nearly crying after that first appointment, I had finally found a doctor that cared, that understood. She was like a breath of fresh air. I fully trust her. I know she will make the best choices for my health care. She listens to me, and that means everything. She understands that I know my body and I know my pain, and we decided on the best course of treatment together. It is a partnership, and I’ve never felt more comfortable with a doctor before.

I am so grateful for the NHS and everything it stands for. I don’t have to worry about how much my treatment will cost. Whether I can afford a test I desperately need. I’m so fortunate to live in the UK and especially to live in Wales where I don’t have to pay for my prescription medications. With so many stresses and difficulties people that are ill face, it’s a relief to know our health is being taken care of.

Thank you. All of you. The doctors, nurses, porters, cleaners, chefs, IT technicians, pharmacists, receptionists, caretakers and all the other people that work together to make our NHS. You do an amazing job, every single day. You change people’s lives, and I am so grateful.

So thank you for everything you do, and happy birthday to our dear NHS.

Butlins – is this British all inclusive style holiday, inclusive to all?

When looking for a relaxing couples break, Butlins isn’t exactly first on one’s list. You imagine spending days on golden beaches with your partner, where the sand has been warmed by the sun. Crystal clear oceans, small waves lapping at your toes. An exotic cocktail in one hand and a fan in the other. The smell of suncream and the salty sea fills the air. Butlins on the other hand (for those that have never been there) conjures images of knobbly knee competitions, floral swimming caps and happy campers.

Jake and I had been looking to go away for about a week. We wanted ideally an all inclusive holiday, one where we could really relax without a care in the world. We searched numerous package holiday websites with very little luck, everywhere was too expensive, or the dates weren’t great or it was just too far. My parents were also concerned about distance, they wanted to be able to reach me with ease and speed should something happen and with my condition deteriorating that was a very real possibility.

I love a bargain, and it was from one of my hundreds of discount emails that I came to think of Butlins. I thought there was no harm in looking but didn’t expect it to be the place for us. I found the website far from user friendly, although my mother didn’t share my difficulties. I don’t know whether it was because I was using it on my phone or my tendancy to be a bit of a luddite, but I couldn’t work it out so well. What I did manage to find out was there were to be a number of musicians as evening entertainment and plenty to do during the day. Jake and I decided to give it a go as it seemed ideal not only for us but to allay my parent’s fears.

I found the booking process a bit confusing but doable. We wanted desperately to have a ‘silver room’ which is a very basic room with a shower. Unfortunately they had sold out by the time of our booking, and we had to settle for a ‘standard room’ which instead had a bath. The differences between the rooms were minimal, but due to my troublesome knees I cannot get in and out of a bath. At least without great fear that my joints will lock which causes excruciating pain and strongly restricts my movements for the following few weeks.

Despite my unwavering anxiety the journey to Taunton railway station went without a hitch. Luckily we managed to find a table in a quiet area of the train. It was even more fortunate that the table we had found was a specially adapted for disabled people, a feature I had not come across before. We’ve all seen the priority seating on buses, trains and tubes. They are normally by a door way and have slightly more space. This table had a hinge in the middle of it. This meant I could lift my half of the table to a vertical position allowing much more space to move in and out of the seat. It was a wonderful feature that I hope to see on more trains in the years to come.

Once at Taunton we had to wait for a service bus to Minehead. We, like many others assumed that once the bus had picked up at the train station, it would take us straight to Butlins. Oh how we were wrong. The bus arrived half full already, and by the time the cases had been loaded and all the Butlin’s passengers had got on there was hardly room to breathe. Okay that’s a bit of an exaggeration but it was as full as it possibly could have been. It even meant the driver had to turn down passengers from the next stop because it was just so full.

The bus was so warm. So, so warm. We were packed in like sardines in a tin. It was painfully clear the air we were breathing was made up entirely of other people’s breath. Secondhand CO2…. lovely. luckily as we moved faster and the passengers emptied out, the air felt fresher and the rain coming through the now open window was cooling and refreshing. It definitely wasn’t the worst journey I’ve experienced but there is a considerable amount of improvement needed.

As the bus pulled up to the stop outside Butlins I was delighted and pleasantly overwhelmed by the vibrant colours and happy environment. People smiled and chatted as we made our way up the the check-in desk. There were *redcoats interacting with the children, laughing with the parents and one was even juggling. The children clapped with glee as the parents queued up to collect their welcome pack. Similarly to Disney land, you could just feel the happiness as soon as you stepped into that environment. It put everyone at ease, from tired children to stressed out parents, everyone seemed to just relax a little bit.

We weren’t allowed to enter our room for a couple of hours and we were a bit apprehensive about lugging our luggage around as we tried to find something to kill time. Luckily we were pointed in the direction of a luggage storage room. It was free and right next to the check-in desk, which was perfect.

We decided to have a little explore around the resort while we waited to get into our room. The fairground rides were simple, pretty and old-fashioned, but in a good way. It was hardly a theme park but instead there was an air of nostalgia. Wooden Waltzers and a golden carousel and a glorious helter-skelter were intermingled with more modern style rides. From the moment I arrived I had my eye on one ride in particular. Loads of swings that were swirled around then lifted high into the sky. I desperately wanted to go on it but I was concerned that I wouldn’t fit. The rides are marketed for children and adults, but neither Jake nor I were convinced I would fit.

Like many people with chronic conditions, my medication has made me pile on weight. It’s not due to an unhealthy diet (although I do enjoy a chocolate or ten) and it’s not due to laziness. I cannot exercise weight off in the same way able bodied people can and no matter how much I diet, everything stays the same. It’s frustrating and annoying but apart from ditching my desperately needed medication, there isn’t an awful lot I can do about it.

For many people if they couldn’t fit in the seat they would laugh it off, and it wouldn’t phase them. Unfortunately I am not one of those people. I would have been embarrassed and depressed and it would have put a dampener on the holiday. My desperation to go on the ride clouded my judgement but Jake convinced me to leave it, and I did….until the last day. After assessing all of the adult’s sizes that went on the ride every time I passed, I concluded I would fit…just. so I braved it. I waited anxiously in line, until it was time to test my theory. My anxiety got the better of me and I squeezed myself into the seat a bit hastily. I ended up cutting my finger slightly on the metal bar but I didn’t mind because I was in and that was all that mattered and it was time to enjoy my ride.

When we could finally get to our room, we were rather underwhelmed. It was functional, but that was about it. There was nothing wrong with it, it was just basic and maybe in need of a lick of paint. It reminded me a bit of my camping days with Girl Guiding – just without the bunk beds. The most surprising thing about the room was the bed. As I’ve mentioned in my earlier post **”Princess and the Pea” I have terrible trouble sleeping. I struggle on almost every bed I sleep in, even my own, but there is nothing worse than sleeping in an unfamiliar hotel bed. Or at least I thought that. The bed in our room was perfect for me! I slept like a log every night, which is unheard of for me. Jake can sleep pretty much anywhere, but for me to get good quality sleep, in a strange and budget looking bed was a miracle. Being able to get a good night sleep at the end of each day did wonders for my pain levels.

We opted for the ‘premium dining plan’ to make it as close to an ‘all exclusive’ experience as we could on a budget and in the UK. Our dinner on the first night however, left much to be desired. I couldn’t fault the food, more the environment. It was our first time in Butlins and we didn’t have a clue what to do. There was no one there to explain what was happening, we didn’t know if we had to wait to be seated, or how to get drinks or what to do. We didn’t know if we helped ourselves, or we were brought food. It was very confusing and very overwhelming. My trusty earplugs came in use as my rising anxiety levels increased the sensory overload. It was busy and noisy and a stressful experience. Luckily, this only happened on the first night. After that there were people who scanned our room key and welcomed us to the restaurant, we knew it was all you could eat and there were plenty of staff around to help. The first night was definitely a blip, and maybe my already fairly high anxiety levels augmented the situation for me, as Jake wasn’t too phased by it. I’m just glad everything seemed to go to plan more after that first night.

All in all the food was lovely. All you can eat suited us perfectly as Jake has a big appetite and I can never decide. This meant I was able to try a little bit of everything, and when it came to the desserts, I definitely got my money’s worth. Out of the two restaurants available on premium dining, we preferred ‘The Deck’ it was busier and bigger, but they had live cooking stations where they created made to order dishes fresh. We didn’t visit the other restaurant ‘The Yacht Club’ for dinner but didn’t appear to have the live cooking stations when we went there for breakfast one day. The freshly made pancakes with various toppings were definitely a highlight of the breakfast menu, but there was truly something for everyone. A full English breakfast, cereals, boiled eggs, smoked kippers, pastries, cheeses, meats…the list was endless. All the cooked options were hot, fresh and delicious. We began the day with very happy stomachs and that is how we ended each day too.

The dinner times were a bit restrictive for us. As a place targeted for families 4-7:30 pm would be ideal for younger children, but for us, we could have done with it continuing to be served until much later. It was a minor inconvenience at most and down to personal preference I guess.

The entertainment was the highlight by far. There are several venues with different things on each night. The only problem with that was, we just wanted to see everything! And it’s impossible to be in three places at once, as much as I wish it wasn’t. Each venue had plenty of seating and all were wheelchair accessible. However they could do with investing in a larger lift. At a push, Jake and myself could squeeze into it with a pram, but there could probably only be one wheelchair and one other person at a time. For a busy place with lots of prams, wheelchairs and mobility scooters, this wasn’t really acceptable.

Although all of the entertainment (except the ***circus) is included in the price of the holiday package, many of the activities are at an additional cost, so be prepared to bring a fair bit of cash with you. We paid to do archery and shooting and we thoroughly enjoyed both. Shooting was my favourite, I’d never done it before and enjoyed it because I was better than Jake…by a lot. Although this activity seemed to be stair access only. We couldn’t find any sign of a lift to get up to the activity venue. We may well have missed one so I’d advise people to enquire about access when booking. The archery was on the ground level so that should be fine for people of all abilities.

Although we had to pay for the circus tickets it was well worth the price. If you book online with your holiday package it is just £5 each. It was incredible! I spent half the time with my mouth wide open in awe and the other half wincing fearing something would go wrong. Note to all clown haters, there is a clown – Chico Rico and he was hilarious. There wasn’t a thing about him that was scary (except the possibility of audience participation.) What I especially liked about him was that he didn’t cover his face with garish paint. There was no creepy red smile from ear to ear. No Ronald-Mcdonald-esque crazy bright wig. His clothes were plain and he wore a small cap. His makeup consisted of a small dot of red on his upturned nose and he wore comically large black shoes. There didn’t seem to be a single person in the audience that felt anything but joy as he entertained.

Chico Rico spinning plates

The resort site is large, and can be daunting if you struggle with mobility. There are plenty of benches around for a rest and you can request accommodation close to the entertainment, but this does depend on what accommodation option you have chosen as the site is divided into sections. If like me your condition fluctuates, there is a hire shop where you can hire wheelchairs and mobility scooters, which many people did. For me the mobility scooter hire was a bit too expensive, I’ve also never used one before, and knowing my coordination I’d probably drive it straight into a tree. Instead I took regular breaks and kept my pain killers handy.

Overall, Butlins is perfect for people that are disabled. Almost everywhere I looked there was someone using a mobility aid. It made me feel more normal. Usually I’m the only person under 60 with a walking stick, occasionally I’ll see someone younger, but I still stick out like a sore thumb. At Butlins I didn’t look weird, I blended into the background with everyone else. My walking stick didn’t make me unusual like it usually does.

Butlins seems to attract people with all kinds of disabilities which is a truly great achievement. It welcomes everyone and the staff were brilliant. There were people with all kinds of disabilities or special requirements. There were plenty of adults with learning difficulties as well and the redcoats in particular really helped them be involved. The redcoats didn’t shy away from anyone. One particular instance comes to mind where a man who had downs syndrome was dancing to the music. At the time he was the only adult there apart from the redcoats and the children dancing stayed clear. The redcoats danced with the man, joining in with his dance moves and helped the children understand that they shouldn’t be confused by him or scared of him. He just wanted to have fun and dance. Seeing him beam when they joined in with his dancing was a wonderful and heartwarming experience.

The resort is almost completely wheelchair accessible. There are a couple of places where there is some room for improvement, but overall this is one of the most inclusive places I’ve visited. We enjoyed it so much, that Jake and I extended our stay for an extra weekend. It is a truly wonderful place for everyone and I can’t wait to book my next visit.

*Redcoats are Butlin’s resident entertainers

** https://painprincess.com/2018/06/01/the-princess-and-the-pea/

***Gandey’s Circus – Greatest Showman Tour

Pill shaming

Millions of people around the world have to take some form of daily medication. Almost everyone in their life has, at some point taken doctor prescribed medications. From antibiotics to morphine drips or even a simple over the counter paracetamol, and that’s okay.

There’s hardly a week that goes by that I don’t face some sort of negative reaction to taking prescription drugs. It might be from someone who has said a change in diet will cure me for life. Or someone asking do I really need to take a full dose of co-codimol, or if I could manage with half. People tell me I shouldn’t be taking this, or shouldn’t take that. They tell me to stop accepting new prescriptions from the doctor. They tell me what I take is ‘enough, no more’ or its too much. You’re entitled to your opinion, I respect that, but it’s not really your business.

All the medications I take are legal and recommended to me by doctors or are herbal remedies such as Turmeric capsules. The decision to begin any medications have been carefully thought out and researched. So why do people with no knowledge of my condition, no medical qualifications and have never heard of the medications I take, think it’s okay to tell me to stop taking them?

Some people with chronic conditions can cope without medication and I think that’s wonderful for them. I’ve tried with and without and I am better with medication, and that’s okay too.

My health is my business, the only other person that should have a say is my doctor. Even then, in questions about my health I am the priority. I have a right to refuse treatments or say when something isn’t working, and the only person I need to explain myself to is my doctor.

We all have very different bodies. Our pain is unique to us. Each of us experience pain differently, even if we have the same condition. This means we all need a unique combination of treatments to combat our pain.