Category / Life

by ChronicWriter

Endometriosis & Relationships

In support of the Infinity Heart Necklace by Spoonie Survival Kits

Being in a relationship can be hard work. Being in a relationship with a chronic illness can be harder work.

When I met my husband, I was (relatively) healthy. I was working part time at a hotel, on my feet 16 hours a day, studying at university. I was just like any other 19-year-old girl. I knew the moment I met him that there was a spark between us. For me, there could be no one else. Very quickly, our friendship seemed to bloom into something more, something deeper. He understood me and really got me – he was unlike anyone I’d ever met before.

I fell, hard. I couldn’t imagine being with anyone else.

3 years in, we were engaged. I was lost in the craziness that is ‘planning a wedding’ when I was first rushed to hospital. The pain was so bad, I can’t describe it, even now. When all the tests came back normal, I was sent home. This was the start of a love/hate relationship with my local Accident & Emergency Department, one that lasted over 6 months. In and out, in and out; discharged without answers every month. But despite all my drama, all my issues, Nick was there, by my side through it all.

4 years and 3 surgeries later, I am still dealing with the flares of Endometriosis. I have lost jobs, friends, an ovary and some parts of myself. But what remains is Nick, and the relationships that matter the most. The people I am closest to, who have all seen me at my very worst. They have seen me balled up in pain, they have seen me cry out in despair and sob at the unfairness of it all. The relationships I have now, and I don’t just mean the one I share with my husband, have held me together in my darkest hours; they have helped me fix my broken heart when I thought I’d always feel shattered.

But It is difficult to watch someone you love go through something so awful, to be in such pain and it’s easy to forget the impact that chronic pain has on the ‘bystander’. My husband is the love of my life, but he is also my carer and it has not been easy to see him upset or see myself, broken, through his eyes.

I am so thankful that despite the Endometriosis, he loves me unconditionally. The relationships I have with my husband, my parents and siblings, family and friends and my colleagues, are all so important to me.

My heart
Siblings
Family

Each time I look at this necklace, their faces fill my head. There is a piece of them all in that delicate item of jewellery; the heart to signify my love for them and the life they share with their loved ones, the infinity symbol which shows that you will be there for them as they are for you and how it is all tied together. A neverending bond; a perfect knot in an imperfect moment.

Every single person that has helped me through the pain of Endometriosis deserves this beautiful necklace; not only my family and friends but also the online community of fellow ‘Spoonies’ – it’s easy for people to empathise, to say, “I know what you mean, I know what you’re going through…” But few people actually know. So to my Endosisters and Spoonie friends, I know you know and I thank you from the bottom of my heart.

You’re all incredible and you inspire me every day.

Advertisement
by ChronicWriter

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

by ChronicWriter

If only I ran on batteries

 


My first look at the Sea is just magic. I stand gazing out, gulping in lungfuls of sea air, knowing it’s all doing me good. The air feels fresher, cleaner, at the coast. My hair whipping my face in the breeze and the wind taking my breath away.
I love the feel of sand between my toes. I love feeling the calm wash over me as I walk along the beach, the waves lapping at my feet and ankles.

 

It’s always quiet here, during the night and in the early morning light. I can hear the whine of the seagull crisp and clear. I’ve already noticed that people are friendlier when they are on their holidays. Full of smiles and happy greetings.

 

These days are to recharge- like a human battery. If only! It was a wonderful idea; a short

trip to the seaside that I knew would do me the world of good.

The only disappointment was the knowledge that all the stress, pain and worry would be waiting back at home. Like an estranged relative that only comes to visit for free food and wine and even then, rarely.

I have a MRI scan on Sunday, waiting for a date for a sigmoidoscopy, worry over results, planning another op with my gynae and surgeon. It’s all piled on top of me, like an avalanche, suffocating.
I have spent a lot of these 2 days outside, in the fresh air, with my husband and my dog. Balanced. Calm. I began to feel the benefits of sunshine and open space really quickly. I have been more relaxed (although not enough to have slept any better!) and have laughed more than I have in ages.


I have had a wonderfully chilled out time at the seaside. Huge thank you to hubs for being so patient with me over the last couple of months, he’s been awesome.

Just a quick note, also so so proud of my Big Lad, he was so well behaved at the coast and even made a few new friends! So good!

by ChronicWriter

“But you’re ‘just a receptionist’ what do you know?”

16 gems from the life of a Receptionist…

  1. I eye-roll 3,496 times a day and Facepalm 1,569 times also. facepalm
  2. I make frequent use of the ‘hold’ button.
  3. I get excited over new stationery.                   LOL
  4. When you’re shouting down the phone at me, it doesn’t make me want to help you more.
  5. I’m an all-day grazer. My desk is covered in snacks. cream-cake.jpg
  6. I’m more embarrassed by your ‘embarrassing story’ than you are. smiley
  7. We’re not all 1 person. As much as I’d love to I can’t physically, emotionally, willingly- answer the phone, sit at the front desk, be the Dr’s secretary, filing and do admin.
  8. There are times when I release a string of profanity as soon as you hang up.
  9. I don’t have a magic wand, and no one is more gutted about that than I am. I can’t magic appointments out of thin air.    IMG_0209
  10. It’s exhausting being smiley and upbeat all day long. Most days I manage to leave my shit at the door. Most days…
  11. This is my job, my career. I am a professional receptionist. This isn’t a stop-gap while I’m home at uni.
  12. Saying the words: “Just-a-receptionist” is a sure-fire way of pissing me off and it will earn you either an eye-roll or “WTF” face.
  13. A sense of humour is VITAL in this job. bow
  14. It will be very tense prior to the annual CQC visit. IMG_0291
  15. Nothing makes me feel more like I’m exactly in the right place more than hearing a “Thank-you for you help” or seeing someone’s bad day ease just by providing a caring, compassionate response to a person’s bad time. IMG_0150
  16. TGIF                                              img_0218.jpg
by ChronicWriter

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

by ChronicWriter

20s & Lost?

So you’ve graduated university with great grades and even greater prospects.

Five years later, you find out it’s not all as simple as your younger self thought.

If life’s not happening for you and you’re feeling a lil’ lost, you’re not alone.

You NEED this…

“All experiences add texture to being; sometimes a career path (and life) isn’t linear, but the wisdom you gain along the way is always invaluable.”

-Bianca Venerayan

Read the full article HERE at Girlboss.com –  Massive THANKS to Bianca at Girlboss, you have made me feel so much happier/calmer about my life in my 20’s!

 

breakfast club

 

life WILL happen, in time

by ChronicWriter

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

by ChronicWriter

Food Widow

At 17 years old, I remember describing my ideal man at a sleepover with my girlfriends. Dark, mysterious, face fur, perhaps a bit older than myself. I rounded up this description by adding: “He’ll cook too! Or a chef! I love food!” My friends responded with enthusiastic nods and approval.

Two years later, I met my (now) husband. 15 years my senior, he was mysterious, mature and I think I fell for him pretty much straight away. After becoming friends, I then found out he was a qualified chef. He ticked every box.

Now, 2 years into our marriage, 7 years into our relationship, I know my husband very well. I have come to terms with the late nights, unsociable hours, his absence on Christmas Day and New Year’s Eve. I understand what comes with being a chef.

Even now, when I meet people who don’t know my husband, and I let slip that he’s a chef. I get looks of approval, that twinkle in a woman’s eye, the silent (and sometimes not) look that says it all; “I bet you get some good meals, I bet it’s lovely being married to a chef!”

Of course it is, I love my husband.

chef

Chef by day, Pirate by night

 

But his job has its moments!

  • I always make alternative plans for Christmas Dinner or I’d be spending the day alone.
  • “like ships in the night” the hours are long and days off are few
  • When he says, he’s leaving in the next 10 minutes, he really means after an hour
  • Meals will go cold, so I don’t bother cooking a meal for him until he’s 20 minutes away.
  • Eating out is a whole new experience – “I coulda made that better myself” I hear this a lot.
  • Cooking at home isn’t as fun. I used to enjoy cooking but when I cook for my husband (and he’s at home) he stands near me watching, or asking me questions. It’s better for my state of mind and his physical wellbeing for him to just do the cooking.
  • He buys meat no one would normally buy! Pig’s heart. I felt like I’d walked in Dr Lecter’s kitchen.
heart

Pig’s Heart – Cianti anyone?

  • Twice a week there is a mountain of aprons that need to go on a boil wash and always end up knotted together by their ties! It’s like when you get a necklace knotted, only more infuriating!
  • My husband smells like food, all the time. Which sounds great; you’re thinking pies, pizza, cake. No- more like onions, garlic, salmon, steak/smokehouse.

 

But….

  • He feeds me.
  • I realised food is exciting, like foreplay.
  • He knows all the good places to eat.
  • I have learned to try new things! Since being with him I have tried: Sushi, black pudding, scallops, saffron, steak cooked blue.
  • Steak, sausage and stilton wraps – I questioned it too, but it’s a taste sensation!
  • There are perks – I have played Taste Tester for items on new menus
  • I have been able to order (slightly) off menu, when he’s cooking
  • When he tells me about his day, I can drool on cue.
  • I know how to make a Roux and a Béchamel sauce.
  • Our dog eats really well.

 

Now I think about it… I’m thankful I’m a Chef’s wife.

 

 

Hubs works incredibly hard, and makes some amazing food. He’s currently running the kitchen at a Steakhouse in Caistor. Here, binge on some Food Porn…

32oz Ribeye
Trio of Burgers (venison, beef&chorizo, breaded chicken)
10oz Steak Philly Burger
Smoked Haddock Chowder
Trio of Fish (tempura prawn, smoked haddock fishcake, smoked salmon pate)
Braised Pork with crackling & Black Pudding Bon Bons
Mulled Wine poached Pear

 

 

 

 

by ChronicWriter

Things I wish I’d said Vol.1

safety-pin-lips-things-i-nver-said

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