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.

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.

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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

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!

“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

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

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