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.

Fatigue

I’ve been trying to balance days out with rest days , one day out and one day in. However I made the stupid mistake of having a day out Monday, then out for food with my boyfriend and a little shopping yesterday. I thought a short bus journey and a very short look in a couple of shops would be offset by a long rest for dinner yesterday. When will I learn to listen to my body? I was exhausted when I got home and still had to wrap my mum’s birthday presents and make her a card!

This morning I felt like I had been velcroed to my bed. My body was so exhausted I could barely move. Once getting up I was like a wooden puppet with my strings cut. I wobbled away to get ready with my joints flopping and giving way. I wobbled and waddled and flopped around and would have given up on a normal day. But it is my mum’s birthday and we had plans to hit the town…and by that I mean go and see Incredibles 2 (for the third time).

I’ve struggled to keep my body upright for most of the day. Even after waking up fully I’m still a bit floppy. Lots of caffeine and sugar have been on the menu whereas I normally try to avoid it. I even ended up dozing during the film, regularly waking with Jackjack’s giggles and gurgles. As much as I love the film there was very little I could do to stop the sleep.

Currently sat in the virgin lounge enjoying more caffeine in the form of a nice cup of tea and ready to continue our day….fingers crossed I can muster the energy to get off this sofa! 🤦🤞

Post from Instagram @thepainprincess

Or look at the hashtags below

#painprincess #lounging #blog
#blogger #fibromyalgia #chronicpainblogger #chronicfatigue #chronicpainbadass #sotired #sleepy #disabledandcute #chronicpain #invisibleillness #fibroproblems #fibromyalgiawarrior

Anxiety – what does it feel like?

Have you ever woken up to find your pet lying asleep on your chest? They’re heavy and uncomfortable. A dead weight reducing your breathing. To wake them and relieve yourself of the discomfort seems rude. So you let them be happy and you deal with the consequences. Anxiety is carrying that weight around all day everyday. Sometimes we wonder if the saying ‘a problem shared is a problem halved,’ rings true. Most of the time though we bottle it up. We hold on to the weight to protect others, to keep them unburdened. Even though the prospect of our problems being ‘halved’ sounds amazing we don’t want spoil the happiness of others.

Living with anxiety can feel like there are two people battling in my head. There’s logic and there’s fear. Logic tells me people I’ve never met aren’t all talking about me. Fear, mangles their words, allowing me to pick up snippets of their conversation. It then creates a story with them in which I play the villain. No matter how hard logic fights back fear always wins.

Anxiety is always hiding in the back, but still wanting to be seen. Being short, it wasn’t an option to go to the back in group photographs, as much as I wanted to. Anytime I was lucky enough to get that opportunity I would obscure myself from view, but leaving just a small hint that I was there. A bodyless arm, a hat with no head seemingly floating in mid air. Just enough of me so I could prove I was there, but also enough that no one else would notice me.

Anxiety is taking out one earphone, for fear your breathing is too loud. It’s holding your breath up a hill so it doesn’t look like you’ve struggled. It’s writing a script for a phone call and panicking when things don’t go as planned. Anxiety influences every single thing that I do.

It feels like a sore, red, bloody thumb because you picked at it too much without noticing. It tastes like the wrong food at the restaurant, because you were too scared to complain. It smells like constantly fresh perfume and deodorant, because you’ve reapplied it ten times, scared incase you smell. It’s walking on tiptoes when shoes squeak. It’s spending your life on tiptoes, being cautious and being afraid.

Anxiety is at least one in ten people you encounter everyday, even if you don’t notice it, it is there.

*Based on my own experiences with anxiety*

Moving on

I used to be a very negative person. I would hold on to grudges like they were the last turkey in the store on Christmas Eve. I wouldn’t let go, I couldn’t let go. I would hold on to the negativity to my detriment. For a while I think I was quite bitter. I was angry at the world. I could play it off as teenage angst, not that I was particularly moody and I wasn’t really badly behaved. I was just angry and confused by the world. I couldn’t accept my life and I took it out on the world in my own way, by being negative, silently hating everything.

My biggest issue was holding on to things, grudges, grievances and insecurities. I defined myself by things that made me unhappy. Somewhere along the line my attitude changed. I started to move on, forgive people and try not to let little dramas ruin my life.

I’m not saying positivity will cure all ills, or will make you feel completely better. It won’t, but it helps. There are still people that have hurt me or betrayed my trust and I won’t ever forget that, but I’ve forgiven them. I’ve let go of the pain, the anger and the self-destruction it caused.

I believe in second chances, but not chance after chance after chance. It’s naïve to think that someone who causes upset repeatedly, will suddenly change. I’m not afraid to cut negative people out of my life, but I’ve forgiven them. Holding on to all that pain isn’t good for anyone. It didn’t make the situation better. It didn’t change what had happened. It didn’t stop the hurt. Letting go and moving on was freeing. I could get on with my life.

Sometimes moving on involves taking action. I recently tried to reconcile with someone that I fell out with years ago. It was something that always bothered me. I would dream about it. My subconscious told me something wasn’t finished. Even if I thought I’d moved on I clearly hadn’t.

It didn’t go well, she blocked my message without responding, which I felt was a shame. But by reaching out even though it got rejected, helped me move on. I did my bit to sort it out. I forgive her for all she did to me, I forgive myself for not trying harder and now that chapter of my life is complete. I can move on now knowing that I tried. I gave the olive branch and if she didn’t want to take it, that’s her prerogative. I thought I’d feel angry and upset that things hadn’t gone how I’d hoped or planned and a couple of years ago that’s exactly how I would have felt. Now I feel at peace with it. I tried, I did my bit and it’s time to move on. The past is the past, so it’s time for me to get past it.

🎵Oh I do like to be beside the seaside 🎵

I had spent all of the day before preparing for the beach. Usual things like preparing my lunch and deciding what clothes to wear. I dug out the biggest backpack I could find and filled the front pocket with all things medical. A job I routinely undertake when changing bags. A purse full of medications, tens machine, headache stick, heat pads, a cream for the pain. Despite it being a a large front pocket I found myself struggling to zip it up. I knew it was unlikely that I would need all of it, but based on previous experiences I knew to always keep these things close at hand.
Most of the day I had been sat on the sofa, in pyjamas chopping salad veg for my lunch. I’ve been on the rabbit food for a week now hoping to shed a few pounds. I found this surprisingly exhausting, by the end I could hardly move. I crawled upstairs and flopped on my bed where I stayed for the rest of the evening.
I woke up a while before I was due to be picked up. Dressing can be one of the most difficult tasks for me, especially in this heat. I try to pace myself but inevitably my face ends up dripping with sweat, I’m breathless and in pain. Thank goodness for setting spray, without it my mascara would trickle down my cheeks like a murky stream. After dressing and joyously finding out my friend was running late, I rested and composed myself. I had half an hour to calm my heart rate and slow my breathing back to normal.
I’m always a little nervous when going out with my friends. When you’re completely able bodied you don’t notice the little things that would make life difficult to someone like me. I never used to, like most people I took things like that for granted. Even after my diagnosis I was still quite mobile. It’s only in the last two years that I have really found it difficult. I now look upon the world with different eyes. Things that were invisible to me before now are glaringly obvious. I was afraid that my friends wouldn’t consider my abilities (more like my lack of ability!) I never for one moment thought they would do that to spite me, I just feared they wouldn’t realise the small things that make my life difficult.
I was mistaken. The first thing Ella* did after I opened the door was take my camping chair off me, to lighten my load. She then asked whether I would be more comfortable in the front or the back of the car. As designated driver, it was her choice of destination and she made sure to find a beach with easy access. The only problem with that was, the tide was in. I could get down the beach with ease with the ramp but unless I wanted to bob up and down in the sea in my camping chair, that particular beach was a no go.
So we went in search for another. After a while we found one, which had at least some sand for us to sink our feet into, and joy of joys it had a ramp! It was steep but with Annemarie carrying my chair and Zoe helping me balance I managed. That is until we reached some steps, or should I say mini cliffs. They were huge! Even an Olympic hurdler would do a double take at the size of these steps. Zoe and Annemarie went down them first and alternately held out their hands to help support me as I jumped down.
When we were nearly at beach level we came across a ramp that was practically at a 45° angle. If by some miracle someone in a wheelchair had managed to conquer the White cliffs of Swansea this ramp would have struck fear into their souls. Due to the angle, it suggested any person in a wheelchair that dared to undertake it, would be jet propelled down and launched off the edge. Undoubtedly the chair would get stuck in the pebbles causing it’s user to be flung into the ocean. Not exactly wheelchair friendly.
I had brought a big umbrella as a makeshift parasol. However it came in handy as an additional walking stick. I waddled across the pebbles with my arms outstretched, gripping onto my stick and umbrella for stability. I’ve no doubt I looked like a chubby ginger praying mantis as I tried to reach the sand. When at last we reached the sandy shore, we set up camp to relax.
Sitting in my chair with the warm sand between my toes and a gentle breeze felt like heaven. The smell of the sea was refreshing and the sound of the waves lapping against the shore was soothing. After about an hour of resting I decided to have a little paddle in the clear blue sea. My chair had buried itself into the sand a bit but I was able launch myself into a standing position with the aid of my stick. I decided not to use my walking stick to tackle the sand as it just dug itself deeper into the ground with every step. I chose instead to rely on Annemarie’s support… That was a mistake. I realised after saving her tripping over a pebble that she was just as clumsy as myself, if not clumsier. But it wasn’t far to the sea. We giggled and screamed as the freezing water touched our toes. The others were braver than I and went right in to swim. I had ‘forgotten’ my swimsuit so I just walked in until the water just touched the bottom of my jeans.
The next issue that arose was my camping chair breaking. I ended up getting stuck in the mangled mess. In the end I was essentially sat on the sand whilst squished between the frame. Once the girls returned from the water, they helped pull me up off the ground then Ella* found a huge smooth rock where I could sit. The girls then moved to this area so I was included. The rock turned out to be more comfortable that the chair, even before it was broken.

Although I was experiencing moderate pain at this point, the warmth of the rock helped a little. We spent the rest of the evening chatting and sunbathing. Well the others sunbathed I furiously applied more factor 50 ever 15 minutes for fear I would burn.
Going to the beach is something I’ve not really done a lot since being ill. I was scared I would be left alone and miss out because I can’t run or play. I told my friends I was happy not to go with them, because I didn’t want to stop them having fun, but they insisted I went along too. They were so helpful and considerate of my limitations. They helped me feel normal again and that meant more to me than I think they realised.

*Name has been changed