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

my Fentanyl Muse

HAPPY EASTER KIDS!

I woke up on Wednesday morning with this poem in my head and when I put pen to paper the words just flew across the page. This came out of nowhere! Children’s poetry isn’t usually my thing and the only explanation I can come up with is; it must be drug-induced creativity.

I have recently been given Fentanyl patches as a form of pain relief for my severe and soul-crushing Endometriosis pain. This is the 2nd cycle using this patch and both times something freaky has happened. And it’s not even Friday!

After doing some online research, I found out that Fentanyl is 50-100x stronger than Morphine. So it’s no wonder I’m going bat-shit crazy! It’s been a struggle to hit the right keys, to form sentences and to even get out of bed, but I felt compelled to share this ray of sunshine with you! How could I not?

easter bunny poem

Love‌ (n.‌) ‌A deep, tender, ineffable feeling of affection and solicitude toward a person, such as that arising from kinship, recognition of attractive qualities, or a sense of underlying oneness.

Some loves are true and fast; known as love at first sight. The sudden impact of this love can alter a person forever.

A mother’s love should be like a lioness. Tender but forever lasting. She is fiercely protective of her children and grandchildren. God help those who harm or wrong any of them.

 Young love is sweet and all consuming. Unable to stop thinking about each other, powerful but sensitive. A puppy love is endearing, like when a man’s eyes soften as he looks at the person he loves or the way a woman melts in her lover’s embrace.

 We all want a relationship that is full of passion, that brings out the best of both halves of the couple. But passion is like fire, it must be kindled and maintained or it becomes out of control; burning everything that it touches.

 A love can grow old along with you and as it ages, it changes into a love that is strong, familiar and evergreen. Two souls that share a lifetime of memories must surely know each other inside and out; steadfast, accepting of flaws and bracing against the harshness in life.

love-7

Things I wish I’d said Vol.1

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Things I wanted to say but never did:

  1. There are more important things in life than making sure your eyebrows are symmetrical. I’m sure the feller running late for work, or the overworked carer just finished from a night shift, or the mother juggling a lunchbox, book-bag, P.E. kit and a whiney child on the school run- have all failed to notice your wobbly brows. Relax. 
  2. Don’t think I didn’t catch that, you’re not subtle. -Responding to every person and their facial expression after they hear the age difference between my husband and I (FYI, it’s 16 years and IDGAF – he’s a GOD). We neither want nor need your approval.
  3. No I don’t like drinking and if that makes me boring, I’m fine with that. But good for you and your 6th glass of JD- crack on. I’m happy being out, with my Coke- I don’t feel sad and you don’t have to pity me or pressure me into a vodka shot. Thanks though, and good luck with your hangover.
  4. I don’t have my life figured out yet and I don’t have a 5 Year plan. Does this make me anxious? Sometimes, yes. But you’re not making it any easier by mentioning it or looking at me with “poor you” eyes.
  5. Did you forget we all went to the same school? Yes I was there, witnessing your Tango years and seeing you bully others less confident than yourself. Remember that before you look down your nose at me from the top of your ridiculously high heels.
  6. “Have you tried…? What about…? That tablet is crap…” – Yes, please tell me how you’re going to cure my chronic illness, and please list all the things I’ve already tried while I smile and nod with my mouth tight shut (I know you mean well)
  7. I am 26 years old. I know to look both ways before crossing a road, I know not to talk to strangers and I always take care (thank you Grandad, ILY). You don’t need to remind me to drive safe or eat plenty of vegetables, I have managed to live this long without (too much) mishap.
  8. I should not be labelled a hermit, shut-in, shy or introverted just because I spend all day inside, in my room, reading a book. I like spending time by myself. This is not a cue for intervention, I do not need to get out, be forced into social gatherings or be dragged on a brisk walk for fresh air. I’m fine.
  9. And whilst I’m about books- Yes, I am reading a ‘saucy’ book and it’s bloody fantastic. As my husband calls it: “Porn without Pictures.” Allow me to lend you a copy so you can remove that stick from your butt and join the rest of womankind who are also on the Fifty Shades Train (Most of us have been riding for a while, and we shouldn’t be ashamed of it anymore!)
  10. Don’t ask me to explain how I got that bruise. I don’t need a safe word. I am just clumsy. I can laugh at myself, please laugh with me- not at me!
  11. “You don’t want more than 1 baby?” As if it’s an easy thing to do?! It’s basically making a person! Unfortunately, for some women it isn’t as easy as A, B, C. Please be more considerate.
  12. Don’t pass judgement on my diet. Yes, I like chicken nuggets and smiley faces and ketchup. I know this sounds like the diet of a toddler, but I also like spinach and Brussels sprouts too. Just not as much as I loooooove cake.
  13. “It’s been a nightmare, are you sure you want kids?” Of course I’m sure, this decision wasn’t made after hearing that baby-making is super fun and motherhood is a breeze! Neither will it be swayed by an awful afternoon of tantrums and smelly nappies.
  14. “You can have mine!” Don’t say this, because next time I’ll show up at your front door with adoption papers and a bottle of fizz.
  15. It was not my intention to offend with this list. I have to right to Freedom of Speech. A fact I must remember the next time someone offends me with their ignorance, arrogance or lack of consideration.

“If you are always trying to be NORMAL you will never know how AMAZING you can be.” -Maya Angelou

 

Delusions of a 14 year old girl

As a teenager, I would fantasise about all the awesome things I was going to be able to do when I grew up. Ideas that I would share with my friends on sleepovers, we would laugh as we came up with fairy tale endings and made plans for our future.

But life never works out the way we want it to, does it?

The delusions of a 14 year old:

  • Buying sexy lingerie and matching sets (and being able to fill them out!). I spent a lot of my adolescence waiting for my breasts to develop, always the last one, they seemed to just appear overnight. But once I had them, I saw them only as a hindrance, unable to fit in the pretty bras from Primark. Girls, let’s be honest, there’s no better feeling than the ‘aahh’ moment when I let them loose on a night time.
  • One of my most vivid memories of my teenage years, is when my friends and I had a sleepover and talked long into the night. The topic? Sex. Until the age of 19, I was a prude, so these conversations were awkward at best but I would offer funny comments and we would laugh together. At this sleepover, we were talking about what music we would do it to – crazy! Laughing, I chose Bon Jovi’s Blaze of Glory and I got huge laughs.
  • Every little girl tries on her mother’s high heels and teeters about the bedroom, like Bambi on the ice. As a teenager, I rarely got the chance to wear high heels, so I believed that once I grew up, this skill would automatically come. As if reaching the age of 18 would grant me endless grace, wisdom and the skills I would need to succeed in life. No, I was an idiot at 14. And now at 25, I am yet to master high heels. I have even opted for flats when I go Out-Out, because I would swap comfort for sass any day of the week- which is probably why I’m sat writing in pyjamas on a Friday night!
  • And the big one- Periods. We all thought periods would bring about our womanhood, our female prowess, the ability to have babies and conquer parenthood, be independent, as well as bring home the bacon. But, for women everywhere, mother nature has conned us. Periods have been a massive let down in my life; heavy, irregular and due to my Endometriosis, severely painful. I remember whining to my mum, that I would never get my period. I can’t count how many times I have laughed about how ironic that is.
  • I imagined leaving school to be a massive milestone in my life. A grand day that I would remember forever. But truth be told, I can’t even remember it. I thought I would be somehow wiser, more grown up after I walked through the gates that last afternoon. I know I was sad to leave secondary school behind and took comfort in the knowledge that some of my friends would be going with me to 6th form.
  • Speaking of nights out, drinking was a huge points on the Pro list of growing up. Images of me, age 20, sitting as a bar, cocktail in hand, looking oh so sophisticated. ERR- NO. Alcohol does not agree with me. I do not enjoy drinking and I take pride in the fact that I can have a great time, without it. I’m not a big partyer. I’m more of a cup of tea, bubble bath and a good book, night in type of girl. I relish the boring, I’ll be a square to the end.
  • I had ambitious ideas of what I expected from my professional life. I fooled myself into thinking I knew what I wanted in a career. I thought I would have a choice of highly-paid, high position jobs when I graduated from uni but unfortunately graduates all over the UK know that this isn’t the case. But when I actually got a job, it made me doubt what career I’d chosen for myself. It is ridiculous that society expects children of 15/16 to choose subjects that will map out their life. How can they know what they want to do when all they have known is education?
  • The responsibility of having my own house was exciting. I would think of how I’d decorate it, relish in the idea of having my own space- my house, my rules. What I neglected to think about was the responsibility of having my own house. Rent, bills, cleaning, food shopping, being a grown up.

But I cannot regret my childish ideas of what adulthood would be like. I cannot be bitter that my life doesn’t quite match up to those rosy expectations because everybody has dreams, everybody wants shiny things out of life, but life isn’t perfect and it certainly isn’t easy. But anything worth having is never easy, right?  
Life is like a rollercoaster and I’m just along for the ride. I have to experience the highs as well as the lows.

Season: WINTER

Why do I love Winter?

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Layers

We all look like we’ve put on 3 inches around the waistline, but it’s 4 layers of warm clothing. Mum’s “don’t forget your coat, you can always take it off, but you can’t put it on if you don’t have it…” speech plays on repeat, like a mantra in my head once Autumn kicks in. 3 layers, winter coat, hat, scarf & gloves. Check.

Hats

Forget bad hair days in the colder months! A hat is the quick-fix that cures my bed hair anxiety.

Fingerless Gloves

I love that for a few months every year, I get to dress like The Artful Dodger, like I’m one of Fagan’s gang. There’s something a little bit sneaky about fingerless gloves and I love it!

Stew & Dumplings

No, not the stew & dumplings that you buy in the ready-meal aisle at ASDA. I mean the stew that your grandparents used to make in a massive pot. The stew that they start cooking at 9am & is still on the hob at 6pm! Stew that could easily feed a family of 4 for a week.

Christmas

Nothing will ever make me more thankful than Christmas. I cocoon myself in Christmas spirit around mid-November time, much to my husband’s despair. The tree goes up 1st December and doesn’t come down again until January. Christmas songs, trees & tinsel, decorations, presents, FOOD. How can you not love Christmas when you can pig out on chocolate at 7am, open gifts, spend the day with your loved ones? On a day when a onesie is acceptable attire for Christmas Dinner. My annual tradition concists of Michael Buble’s Christmas album on LOUD, Baileys hot chocolate while I’m decorating my tree. Spending Boxing Day afternoon at your Nan’s because she’s put a spread on, desperately searching for emergency chairs, sipping on a Snowball. Finding glitter on everything- everywhere! I even got married 5 days before Christmas & invited Santa to my wedding! What’s not to love?

Snow

My husband has only to whisper “it’s snowed!” at 6am & I’m wide awake, out of bed & at the bedroom window. Nothing has ever gotten me out of bed quicker! Yes, fine, call me a child! I haven’t quite got to the adult stage of hating snow. When it snows, I skip the worry about getting snowed in, I skip the mad dash to the supermarket for bread and milk, and jump straight to – what are we doing first? Snowman? Snowball fight? Snow angel?

I know, I’m 4 years old. And I don’t care.

What do you love about Winter?

Single vs Plural

 

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A writer & her dog

I’m going to say what no feminist, or girl gang member, is supposed to say; I like being in a relationship. I love it, I love being a We, being an Us.

I feel safer around others, don’t get me wrong- I love my own space. I like sitting by myself, reading, writing (sound like such a geek!) and watching the TV I want to watch.

I read a lot of Danielle Steel novels through my adolescence, the trauma of heartbreak and the drama of finding love made a lasting imprint early in my life. I was transformed from a shy girl to a hopeless romantic within a year, as soon as the wave of hormones took me over at 13 years old.

I watch re-runs. I can watch episodes over and over until I find new bits to laugh at. I watch shows like Sex and the City, Friends and Downton Abbey. As I nervously giggle at Samantha’s sexcapades or cheer Carrie on in her fight to win Mr Big, or cringe at Chandler’s bad luck in early relationships and frown at Mary’s stand-offish, stubborn attitude – I am thankful that I am not alone, that I have found my other half, and that I’m NOT single.

I know, sacrilege! An independent woman, declaring that she needs to be in a relationship, needs to have a man next to her, am I mad?

But, now I live with a chronic illness, I have begun seeing myself as somewhat unreliable, with a fragility that I cannot control and an insecurity that sometimes gets the better of me, despite how hard I try to get a hold of myself.

 

The thing is, I can’t even remember what I used to be like before I was plagued by chronic pain and worrying if I would be ill again next month, or trying to describe and explain every single pain I feel, desperately waiting for my next Dr’s appointment.

And to imagine dating, or trying to explain why I am the way I am, to a stranger, doesn’t bear thinking about. My illness has turned me into a needy, insecure, reassurance-seeking, crying, stressy mess. A mess which my husband is legally obligated to clean up. I feel incredibly guilty that I wasn’t like this when we first met, it’s almost like I’ve lured him into false pretences, like the don’t worry I’m on the pill trap, only with less sex and more late night chemist runs. Nick is incredibly patient and understanding, and I know I married a great man.

So, while it’s awesome having ‘me time’, and that I’m irrevocably in love with my husband, I’m also close to him, like best friend close. And the fact that I can tell him everything, makes life with this bag of shit illness easier to live with. He gets it. He gets me.

If I didn’t have this best friend, I wouldn’t be living it up with my single girlfriends like the girls in Sex & the City. I’d be living at home with my parents, sharing a room with my little sister, spotty and an emotional wreck.

After just 7 words; I’ve leap-frogged back to 2004. I’m a prude, a bof & socially anxious. I have the same school friend that I have now with the same senses of humour but without the worldly knowledge we possess now.

In the words of Ace Ventura: “No, spank you very much.” My life may not be perfect right now, but it’s a damn sight better than it was back then. That’s good, right?

Progress.

 

Too beautiful not to share

I need someone

who knows struggle

as well as I do

someone

willing to hold my feet in their lap

on days it is too difficult to stand

the type of person who gives

exactly what I need

before I even know I need it

the type of lover who hears me

even when I do not speak

is the type of understanding

I demand

 

-the type of lover I need

By Rupi Kaur, milk & honey

Notebook Haul

There is nothing a writer loves more than a new notebook – except maybe, caffeine?

I am a huge stationary fiend. During my years at 6th form, I worked in Partners (now known as Rymans!) where I got a pretty decent staff discount. Nightmare! But what I will say is- at the start of a new term, my pencil case was choc-a-block and bursting with shiny new pens. September very quickly became my favourite month, pre-school prep would commence!

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Now though, I still can’t resist a  new notebook, a new capsule for my thoughts, memories in binding. And so, here are what I’ve treated myself to over the last couple of months.

(Now I’m officially a grown-up, I don’t have wait till the end of term to splurge on stationary!) eek.

  1. Home Bargains (89p) – Lined B5 with 64 pages and plastic cover
  2. Sainsburys (gift) – A5 hardback, spiral bound, lined
  3. Paperchase (£7) – Lined A5 notebook with plastic cover with ribbon page-marker
  4. Paperchse (£6) – Tall, spiral bound, hardback with lined paper
  5. The Works (£1) – Plain, paperback, lightweight

 

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It’s like Thumbelina’s Diary!

Wilko (£2.50) – One Thought a Day diary,covers 5 years, tiny with ribbon page-marker

 

I am currently abusing #1 (Home Bargains) for my blog scribbles  as it’s a great size and the paper has a silky feel which helps my pen temporarily forget it’s left-handed awkwardness.

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5 stars!