Dear Chronic Illness

exciting stuff has happened!

Sometime last year, I submitted a piece of work for a collaboration with Spoonie Survival Kits. I never expected my piece to be chosen as I expected there to be a lot of entries because the chronic illness community is such a large and diverse group of people, I was sure there would be someone better than myself.

BUT they chose mine! I’ve been over the moon and have tried to keep my trap shut about it until i knew for sure that things were rolling.

Pippa has done an excellent job of putting this amazing project together. It’s a collection of letters written by 16 young people all with chronic illness. The publisher Leesa Wallace has devoted much of her time and energy, along with her resources over at Wallace Publishing, turning this dream into reality.

dear chronic illness cover

Dear Chronic Illness is available in both eBook and paperback format.

All of the royalties from the book are to be donated to Spoonie Survival Kits.

The book contains letters addressed to long-term conditions ranging from POTS to endometriosis, from tumours to Severe M.E. The contributors include…

real and down-to-earth reflections about life with a chronic illness–  it’s lighthearted and often humorous, but it’s honest too.” -Pippa

Honestly, I couldn’t be more chuffed about this and I hope you join me in my excitement. Together, the 16 contributors along with Leesa & everyone helping to make this happen, have created an amazing thing that will shine a light on what it’s really like living with a chronic illness. I’m so proud of you all!

Click to buy your very own copy of Dear Chronic Illness!

xo

Advertisement

A letter to my younger Self

 

Dear 13 year old me,

You’re one of the quiet ones, you prefer books to real life people. You spend a lot of time in your room. This isn’t a bad thing. You still have the friends you grew up with, to them you’re Nerdy Spice. They all shave their legs, have done for a while. They all have boyfriends and stay up till after midnight. Mum won’t even let you near the tweezers and you have an 8 o’clock bedtime.

You’re embarrassed that you have a bed time. When your friends call and Dad tells them you’re in bed, you have to explain it away with a stomach bug the next morning, on the walk to school. But those 8 hours of sleep are a god-send. It gives your body the time to re-boot, time for your hormones to untangle.

Although, now at 25 years old, I crave early nights and those blessed 8 hours are essential. Without them I’m a cranky pants.

Remember when you used to call your friends during that 13th summer, let’s go swimming! No. Why? Because all of your friends had ‘that time of the month’. You were so upset because you didn’t have boobs, or hairy armpits, or a period.

In desperation, you cried to mum, “I’m never going to get my period, I’m going to be the last girl ever to get them!” You felt so left out and mum calmed you down, and said in a quiet voice, “When your periods start, you’ll wish you never got them.”

Listen to mum. She’s like Gandhi. Do not scoff at her rules, jokes, or words of wisdom. Mum knows what she’s talking about & she’s right.

You will hate your periods, boobs get in the way and shaving becomes a full time job but without a pay day.

You will put a lot of pressure on yourself on your journey through secondary school. You will never meet your expectations, but you have to realise that you have already made Mum and Dad so proud. They are proud that your Parents’ Evenings go well, your grades are good and they are grateful they don’t have to worry about you causing trouble on the streets at night. They can trust you to make good choices and to do your best in everything.

Be thankful that Mum and Dad are strict parents and that they love you enough to use rules to mould you into a better person. In another 10 years when you’re living on your own in Northampton, you’ll be glad that Dad taught you about Online Banking and made sure you are street-wise. You’ll be grateful that you spent time babysitting your little brother and sister because it taught you responsibility. Be grateful that Dad taught you about money and that you have to work hard and save for things that you want. Thank Mum for teaching you compassion, for being a shining example of a good-heart.

Over the next few years, you will meet amazing people. Some you will keep with you forever and some you will lose as they go their own way. Life takes everyone in different directions. Learn everything you can from these people, how they influence you and the impact they have on your life. You can learn so much from people.

You will push yourself and set expectation that you are never able to achieve. Learn to love who you are. There are some tough times coming up and you need to be strong.

You will meet bullies, exams, heartbreak, fall-outs with friends and fall-outs with parents. You will move 90miles away from everything you know & everyone you love. Be outgoing, meet people, try new things.

Don’t try to micro-manage everything. It’s OK not to have a plan. Don’t rush into adulthood and force yourself into a life you’re not ready for. Everything doesn’t have to happen right now. Be patient

(No, I haven’t cracked Patience yet, but I’m trying)

Alas, you will have to kiss a few toads before you marry your prince. Open your heart to love. When you find it, it’ll take your breath away. This love will not be an easy one, and you will face some tough situations, but he’s so worth it. He’s exactly right for you, the man you pictured when you read all mum’s Danielle Steel novels. You have found your best friend. He is the other half of your soul and he loves you irrevocably and completely.

When you take a tumble, be it due to illness or lack of judgement, remember that anything worth having is never easy. Have the conviction to stand back up.

You will experience hurt and pain and defeat and there is no avoiding this, but know that you are a strong. No matter how alone you may feel in those dark days, know that people love you. They will shoulder this hurt with you and it is OK to let them for it is too heavy for you to carry alone. Acknowledge this early, before it breaks you.

Do not let sadness bind your personality and drain you but hold fast to who you are. Do not let pain change you, try and stay soft. Stand strong against the regret and bitterness that will taint your caring nature. Keep striving to be a good person.

Your sensitivity is a gift and it allows you to connect with people on an emotional level. You have empathy and understanding, which people will lean on. Do not be afraid to cry, crying is not a sign of weakness. It shows that you care enough about something and you’re willing to break trying to get it.

Be confident enough to laugh at yourself. It’s OK to be weird.

Never apologise for being who you are. Stay cool.

From your 25 year old Self   xo

baby.jpg

 

 

Endo Gone, You’re Strong! playlist

So the operation went without a hitch. You’ve been mooching around the house in a bed, sofa, bath, bed loop for 2 weeks now. You’ve eaten all the treats, slept for 4000hours straight & finished all the movies on Netflix.

The time for moping & feeling sorry for yourself is over. You might not be ready to greet the world or return to work just yet, but nothing is stopping you giving yourself a shake.

I have put together a Spotify Playlist that makes me feel brighter and motivates me and triggers more positive thinking. It makes me want to be happier, to get up & make things, do things.  So use take your pain & broken body and turn it into something awesome.

Give the playlist a listen & let me know what you think.

Listen here: Endo Gone, You’re Strong. What’s the worst that could happen?

The worst thing?

Your neighbour could catch you dancing freaky to George Michael in a top-knot and a nightie. The nightie has tea stains down the front & your legs have about 2 months worth of growth. Oh! And you also have marmalade on your cheek. SO-WHAT!

Smile, be freaky and OWN IT 🤘🏻

 

A xo

 

 

Summarise your Dog’s life in fewer than four Paragraphs (as if 4 is enough?!)

Noise? What noise? Oh right, there’s a noise. BARK! Head up. My work here is done, time for a nap! 

image

It is no shock to anyone that knows me that I own a dog.  He is an American Bulldog and he sheds. A lot. His fur is short and white with a smattering of dark brindle spots covering his entire body, he also has a spot on his tongue. He’s very big and got a lot of meat, mainly in his head. His name is Harley. He also answers to Harley-Quinn when he’s being a) incredibly cute or b) incredibly naughty. He is very affectionate and will sometimes just plonk! himself down on me.

image

He has three (yes, three!) beds in our house, all in different rooms. But he likes ours the best. Imagine a custard slice, pastry on either side and a huge sliver of calorific custard in the middle. Well, me and my husband are the pasty and Harley is the custard, taking up all the room! (huh, I’ve never made a connection between bed and cake before but I like it!) My husband is the cook in our house, and where there’s a cook, there’s food and where there’s food you’re sure to find a drooling bulldog. And this isn’t contained in the kitchen! He follows and sits looking all starved and sad whilst we’re eating. It’s emotional blackmail!

American Bulldogs have a bad reputation which is mostly undeserved. I stand firmly by the “blame the owner, not the breed” notion- it is how a dog is raised which determines his character and behaviour.  Harley is the gentlest dog, his face has been within an inch of a budgie, a baby and a sausage dog and I have no worries. When we’ve been out on walks, I’ve had mixed reactions from people. Most of them are looks of horror as they grab their child/chihuahua and run past us, hoping he doesn’t eat them. When off the lead, he’ll try and play, bounding (like a lamb, he wasn’t built for grace or speed!) over to say hello and they scream and demand to know why this vicious beast isn’t muzzled and on a lead. This upsets me when this happens, he’s completely prejudged and misunderstood. Yes, he’s big and his face is going to cause some questions- so ask them! I’m more than happy for him to sit so you can meet him. Yes, he can be stubborn and greedy, but he’s so soft. And doesn’t deserve the negative reaction he so often receives.
image

I have babied my dog, it’s no secret. But with no children and my acute broodiness and with him being raised from a puppy it was inevitable. He is a huge part of my life, and I’m not just talking about his size! Harley has only been with us for a little over 2 years, but I can’t imagine life without him. He offers unconditional love and endless sloppy cuddles and he always knows when I’m not feeling well.
image

image

I don’t know what I’d do without him!

A xo

Describe a person you see everyday

On my way to work in the early morning, before all the shops open and there are only the bus riders and tired looking people; clutching their coffee cups with intense enthusiasm. I see a man, everyday, in a hurry.
I know what you’re thinking; ‘he’s probably on his way to work or hurrying for the bus’. Which is clearly a likely possibility. Like a little busy turtle, he carries a stuffed-to-bursting backpack, all his treasures inside. What’s he got in there? Being a little odd and on autopilot my imagination runs wild. He’s a spy, he has all his gadgets and “lasers” in the backpack. He’s homeless and that’s where his sleeping bag is- wait… he looks too tidy. It’s full of stationary, he works an office job. Maybe he’s still in school? And on and on…
This man is smartly dressed, middle-aged and always looks cheerful. There’s sort of a skip in his step, like he’s excited for the day ahead.
I tried to be like that, Monday morning, 7.30am and failed.
Maybe he’s not going to work?

Remember when we were little, our mums would pack us up with lunch and a rain coat and extra drinks, snacks for the bus? We’d skip on our way in the morning, faces full of smiles. Where were we going? SCHOOL TRIP. Maybe this happy fellow is off on a trip? I mean, someone’s got to write reviews. He’s got the best job ever! He visits all these exciting places so he can write a review. This guy works for Trip Advisor!

I know what I want to be when I grow up…

 

A xo

A Tale of Two Cities. Part 1: Cambridge

When you hear the words road trip, you automatically think route 66, exciting places, camper van, awesome people.

When you hear the words bus tour, you automatically think old people, England, drizzly weather, service stops, boring get-away.

NOT TRUE.

I have just returned home from a fab weekend away on a bus tour. I went with my cousin who is the same age as me and my grandparents who are over 70. It was great value for money and we all had a great time. Plus! because it was a bus trip, meaning we had a chauffeur the entire weekend, that meant we could nurse a hangover Sunday morning whilst still managing to see all the sights!

Saturday, we stopped off at Cambridge for a few hours; city number one. As we arrived at the outskirts of Cambridge on the coach, the houses were awesome, great mansions. The kind only rockstars can afford! There wasn’t that much traffic, i think when you start to go down south, your initial thought is it’s going to be manic. It wasn’t. But there were lots of bicycles. Lots. Whizzing through the streets like Harry Potter on his broomstick!

I have never been to Cambridge and expected a bunch of snotty nose snobby students, looking down their noses at our slightly northern accents and common tongue. It was lovely. King’s college looked amazing in the sunshine as we got off the bus and set off on our first adventure. The architecture, distinctly Gothic and I had no trouble romanticizing it at all!

20150530_111103[1]

King’s College

The streets were crawling with tourists and there were people busking and selling punting excursions. It was great to get away from the hum-drum of everyday familiarity and meet the bustling streets with eyes wide open. Exciting! There was a great market on, offering fresh foot and vegetables, pashminas, scarves, handbags, antiques, and butchered meats! Making my way through the crowds it was obvious that the weather was only going to get warmer too!

We had a lovely afternoon tea in Marks & Spencers (my nan’s favourite) we had chocolate fudge cake and lattes, giving us just enough energy to continue our expedition. We decided to pay the extra cost to go on a punting tour; the young lad who was selling the tickets was clearly unprepared for my nan’s brazen ways. We all laughed as she made him write ‘Paid in full’ on the receipt. He shrewd perception and wit making it impossible for her to take this fellow on face value. The very popular punting tour would give us an opportunity to see all the colleges in their splendor without having to walk there! My feet were starting to hurt! Our punter guide was extremely knowledgeable and made the tour fun by adding in his little jokes about the feud between Cambridge and Oxford and how the architects were mostly drunk when designing the buildings years ago. My nan only made the journey more humorous by answering every question our guide asked, directly. Ha! The lovely young couple seated next to us taken aback by our northern charm! The sun was shining and the heat was amazing, it was like being on an excursion abroad! It was lovely and well worth booking!

20150530_140723

King’s Chapel

20150530_140852

Punting outside the College dorms

20150530_142646

St John’s College

20150530_141250

Mathematical bridge, Queen’s college – built 1902. Students have dismantled this bridge a number of times in a prank!

St John’s College was supposed to have a clock on the tower so that the students would always be on time for lectures, however the architect didn’t want to interrupt the symmetry of the building- it is also believed that he ran out of money! Whether that is a joke, I don’t know! However, when trinity college started doing very well, the architect decided he wouldn’t have the eagle facing the rival college and he turned its head left – breaking the symmetry!

20150530_143336

St John’s

20150530_142952

The Bridge of Sigh

The Bridge of Sigh

After the punt jaunt we had another walk around the city, stopped to get our bearing just outside a lovely Arts and Crafts market. Whilst i was wandering aimlessly, I started to hear drums and chanting. Confused I made my way back to where my little group were perched. I then witnessed a perfectly amicable protest, people chanting about getting the ‘tories out and ‘get rid of the scum!’ waving banners and flags. It was great to see that people are able to express their opinions and fight for what they believe in -without violence.

By this time, our feet were hurting but the sun was shining. The only thing that was difficult about Cambridge, was finding the high street shops. Everything was spread out. But we found a great shopping center with a massive New Look with lots of sales- so I can’t complain too much! I managed to get some lovely cut-out sandals for, black leather ones for £10! Anyway, I’m digressing…

We then fought through a sea of tourists, large groups of ethnic varieties; all angling their cameras at the Gothic splendor, and made our way back to the coach. As we began our short journey to our lodgings for the night; The Hilton Hotel at Milton Keynes, there were a few things that stuck in my mind about Cambridge. I could see why directors wanted to film Harry Potter there, I was never posh (or clever) enough to go to Cambridge university and I have never seen so many bicycles!

Please keep your eyes open for A Tale of Two Cities. Part 2: Oxford – where I’ll be telling you all about our night at the Hilton and our adventure in Oxford!

TTFN.

A xo

Small taster…

The road was quiet. It was the quietest she’d ever known it. As the clouds rolled in casting a dark shadow across the asphalt surface, the wind began to pick up. Fall leaves whirled in the wind, her hair wild around her face and in her eyes. She stood alone at the end of the street, waiting. But she knew not what for.

Carla was alone. She was always alone now. Carla’s family had moved on without her, she only being a far off thought in their busy lives. She stood gazing up at the darkened sky. She hadn’t felt this way in a long time. Dread, the feeling beating at her like the waves crashing on the rocks, wearing away the stone bit by bit. Carla hadn’t felt dread since that night in the dark, that night after the arguments with her parents. She’d walked out of their lives, forever.

Carla was a normal teenage girl. She was clever, popular in school, the apple of her parents’ eye, the oldest sibling. She had a plan for her life and her parents made sure she stuck to it. That Monday morning she dressed for school as usual. Her uniform laid out on her bed by her mother, pressed and ready. Carla showered thinking of the mundane drivel which would be the highlight of her friends’ day; who’s dating who? Who was seen with whom at the cinema? Who was in detention for smoking behind the bicycle shed? She knew she would have to listen to all of this and pretend to care, all day long, passing comments and faking a smile. She lathered her thick brunette mane and rinsed as she considered her essays due in that day. Carla knew absolutely that they were all perfect. She’d spent weeks on them, re-reading them over and over, spell-checking and editing every day. Her school work was her prize. All her friends didn’t believe that she did it alone, without help; she was destined for greatness her teachers said. Carla knew she was. It was all in the plan.

Carla dressed making sure her striped tie was knotted exactly right and her blazer had all her favourite pens in the inside pocket, ready for when she needs them. She buckled her shoes and straightened her socks, heading for the stairs. She met her mum, dad and young sister eating breakfast in the kitchen, her dad was hidden behind a large newspaper, her mum bustling around the coffee machine and her sister doodling in her school book. None of them much noticed that Carla had entered the room. She sat at the breakfast bar and studied them inquisitively over her mug of steaming black coffee, savouring its addictive aroma, she laughed inwardly.

Susan and her husband, David, were the typical husband and wife. He went out to work whilst the housewife stayed home ensuring all was ready for the breadwinner’s return. Susan was a member of the PTA and women’s church group and always wore pearls. David was quiet and liked to play golf on the weekends with his corporate team; he was a banker, or an investor, or something; Carla wasn’t really sure, only it was to do with money, lots of money. They didn’t really talk about his work. At the dining table her mum would tell them about her day, grocery shopping, the ladies’ lunch and all that, they would ask Carla about school and her classes, they would chat with her little sister about her music lessons and how she liked school; things of no consequence, nothing intimate. Susan and David had no idea what was happening in Carla’s life and Carla liked it that way. After all, she was 16, she was allowed to have some secrets.

My first time- Acupuncture

When I was told that I’d have this illness for the rest of my life, I had the naive ideation that I would just take some pills, some Feminax and everything would go on as normal. Oh, how wrong I was. Chronic pain has seeped into all the cracks of my life, bringing with it- its entourage; fatigue, depression and an unhealthy reliance on pain killers. I am not addicted to pain killers, not yet, but I do rely on them most days. I have had to search all over the web, looking for natural methods to ease the pain, alternative medicines that don’t make me look like a zombie, so I don’t lose days at a time during my ‘pain storms’. For this I have put together a survival kit: heat pads, hot water bottle, Tens Machine and a long soak in a hot bath.

Within a month of my diagnosis, I had visited my GP several times and was given different prescriptions over and over. I changed my diet, reduced my caffeine, dairy intake and cut out red meat entirely, hoping that all the online forums were right. In April, I decided enough was enough and it was probably time to think outside of the box. Acupuncture?

Acupuncture is:

  • “a system of complementary medicine in which fine needles are inserted in the skin at specific points along what are considered to be lines of energy (meridians), used in the treatment of various physical and mental conditions.”

I had my doubts. But, in desperation, I picked up the phone and stated my interest in having a session ASAP- to help with the pain. Within a few hours, I was contacted by the acupuncturist. A lovely man that seemed to understand my illness and empathise completely- which helped in itself as I was used to receiving a lot of blank faces when I disclosed my endometriosis. He seemed eager to help and sounded so sure that he could help; brimming with complete confidence in his craft. I was given an appointment the very next day.

I travelled the few miles to the therapy centre, my anxieties growing, starting to feel uneasy. The idea of having needles all over my body was not comforting. My worries grew and soon I had the image of Pinhead from Clive Barker’s ‘Hellraiser’ answering the door, beckoning me into the treatment room, to my torture. I have included a picture, just to show you how quickly my imagination escalated! Oh dear.

Pinhead

Pinhead

The therapy centre is off the beaten track in a village just outside of my town, I had never really seen the area very well or visited it much. It was a lovely, uncharacteristic spring day as we drove down a lane adjacent to fields with spring lambs bouncing through the grass. My spirits lifted even more when I saw the building. New and shiny, it stands in what appears to be the grounds of an old school. With the sun bouncing from the round window and a light breeze through the trees, I walked the paved path and spied an overgrown tennis court with weeds covering the court lines and growing through the net. It truly is a lovely place and if you have the chance to look around, please do. You can find the website here.

Anyway, enough of the location and my wild imagination. Next- bring on the actual experience! A short young man welcomed me into building. It is light and airy, full of windows and has a minimalist style. I started to feel better already. I turned to my husband to seek reassurance; we had suggested him waiting around or accompanying me but decided against it in the end what with the session possibly taking over an hour. I was a big girl and didn’t need him to hold my hand- much.

Once in the session, I told my story of confusion, worry and pain. I told the acupuncturist of all my hospital visits, my surgery, my medications. He asked about my diet and lifestyle. I explained that since all of this started I’d not really had much of a lifestyle. When he urged me to discuss my diet, I faltered. I was embarrassed. At that point, I pretty much survived on a diet of what I ‘fancied’. My appetite was poor, but I had to eat as I was taking medication so it was mainly things that I liked; junk food. As I reeled off my list of food stuffs, I became increasingly aware of how it sounded like a child’s menu without adult supervision; chicken nuggets, noodles, chips, chicken/tuna pasta, pie, smiley faces and broccoli. I’m pretty sure if Turkey Twizzlers were still in production, they’d have been on the list as well! He laughed and wasn’t too hard on me about it.

It came time for pins. Pinhead’s ugly, cruel features flashed in my mind instantly and then was forgotten as my acupuncturist talked me through the procedure. He is extremely well trained and qualified. He had learned in China, had a university degree, but most of all, it was his absolute assurance that it would be beneficial to me. And after months of medical professionals “trying this” and “giving this a go” – it was about time! He told me that he could feel how different parts of my body were poorly based on the different areas he could take my pulse. For example, on that day, through close monitoring of my pulse, he could tell that my lower abdomen and intestine were extremely enflamed. Woah. Even CT and Ultrasounds scans, X-rays and blood tests couldn’t tell that in my 5 hospital admissions.

Bring on the pins. The first few were a little cause for concern; going in my feet and toes! Ugh. This was hell for me, the idea of having a needle in my bony feet, is harrowing. I felt them go in, but as I wasn’t looking, it didn’t hurt, and they were quickly forgotten. I had a total of 7-9 needles in my legs, feet and wrists. He continued to check my pulse through the procedure and after the pins were in for 20 minutes confirmed that my pulse showed that the aggravated body parts and eased and settled down a little. He stated that I may need ‘top-up’ sessions (it looked like I would be seeing more of Pinhead) and that he would contact me to see how I was feeling.

On leaving the session and building, the sun was shining. I don’t know whether it was a psychological thing as I expected to feel better, whether the pins had actually eased my raw organs or whether my painkillers had kicked in, but I felt like running. I felt more upbeat, laughing as I retold my experience to my husband, including all the Pinhead bits! My body felt alive, tingly almost, I felt ready to run a marathon; that sensation when all your muscles tighten in expectation of adrenaline. Everything felt slower, I felt ready, better able to cope with the day. It was £40 well spent.

I was under the impression this would last a week. It didn’t. Within a few hours I started to feel very tired, my muscles ached and it was hard to keep my eyes open. I collapsed into bed for an early night. The next few days I had pain but it was more manageable. I was able live close to normal, doing things I would normally do; work, eat, walk. And just for that, I would recommend, wholeheartedly, the Acupuncture experience.

A xo

I said I don’t write poetry…I lied

My mind ripples.

Like a mirror pool.

It’s the best way to explain it.

One small thing makes a lasting impact on my thoughts that expand and encompass everything until it is the only thing remaining.

Twisting it, corrupting it. Until I hardly recognise it as my thought at all.

Only it’s not just one ripple.

There are hundreds, starting at the same time or different times, by different things that will inevitably connect in time.

When they do, my mirror will shatter.

Shards of glass will lay discarded, unwanted in a pile. Like the thought never mattered at all.

And where’s the sense in that?

But my mind continues to ripple.

A xo

Cut the cuts

I have recently found out that the University of Northampton have cut their Philosophy course. This is a damn shame!!
First of all, the university is well known for it’s social sciences and philosophy departments, what has it got to gain from cutting the course? Money. It has left staff that are involved in this course out of work, the current students frustrated by this solution and future students; left with no other option than to apply to a different university.Have we been told why higher authorities have come to this decision? I think not.
This blogger has heard that there may be further cuts through out the uni, including in the social sciences department.
It has been known that the Media course has been flitted out, only after investing on tons of new facilities that will now be useless (facilities including the brand new 3-D room!) Why??
There is now a new society at the university of Northampton. It’s sole aim?? To get the Philosophy courses back in the prospectus!

Sign the petition today & get involved.
http://www.facebook.com/pages/Keep-the-Philosophy-Department-at-Northampton-U…

A xo