Late Night Musings…

Tonight I want to be Carrie. I pour myself a glass of red wine and light up a cigarette, then make my way out into the cold, starry night. I sit down at the patio table, looking down into the crystal glass; my reflection staring back at me. Tendrils of soft, dark curls fall around my tanned shoulder blades, mixing into the thin gold jewels hanging from neck. Piercing blue eyes, framed by thick, dark lashes, are questioning me… Why did I suddenly feel the need to write? Why did I start this? Maybe I wanted to escape. Maybe I wanted to share my ‘fairy tale’ life with the world. Maybe I want to be a writer. I’m certainly trying to play the part. Dressed head-to-toe in fashionable brands, make up and hair done to perfection. Fresh tan. Fresh nails. I want to share my passion for all things beautiful and all things destructive; nature, dance, fashion, illness, men, beaches, music, women, sex, pain, heartbreak, love… the list goes on. I hope these words will communicate the bliss and misery of my world; the light and darkness I live in everyday. I have a voice that needs to be heard. I’ve watched enough Sex and the City to know how to write. I know what people want to hear. I can do this, I can be Carrie.

I stare hard back into those blue eyes, daring them to challenge me. I blink, and the clear image blurs. Suddenly I realise that the wine tastes horrible, I’ve never liked wine anyway. I cough on the smoke as it curls around my throat. Hell, I’m no Carrie. Lets hope I can live out this writer fantasy better than I can pretend to be her…

x N

Please comment below what you would like to see next on the blog.

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Moving, Road Trip Tips & Life Update

MOVING INTERSTATE

Life update; I made the move to Melbourne! I have wanted to move to the city for years & I’m so excited I finally made the leap. Chris’s family lives in Melbourne, so whilst I am super sad to leave my fam, it’s comforting to know we still have loved ones around us.

I’m excited for a change, a fresh new start, new friendships and all the challenges that will come our way. Melbourne has so many amazing opportunities and I can’t wait to pursue my dreams. I don’t have a concrete plan which excites me because I can make it up as I go. Atm I’ll be continuing makeup artistry & social media and looking for a part-time job. I’m also finally going to finish (hopefully) my Bachelor of Behavioural Science Psychology.

The move to Melbs is super thrilling but it’s also been a lot of work organising a new medical team. As a patient with chronic illness, we’re constantly searching for that ‘dream team’. Whilst everyone else is out making big life choices or deciding what designer handbag to buy or what holiday to book next… we’re trying to decide which specialists are best for us. The worst part: you’ll find 100 shit ones before you find the ones who are a best fit for you. So after finally finding some pretty amazing specialists on the Sunshine Coast, it is pretty scary to start from scratch! My specialists on the coast have referred me to the doctors in Melbourne who they think are the best – fingers crossed it all goes well! I’m super hopeful and also keen to get some new perspectives on my situation.

ROAD TRIPPING

I was pretty worried about this drive because my recent flare up’s have been awful, but it was actually a lot better than I expected and I think thats because of my planning!

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Strategy’s for a long drive:

  • Suck it up and just drive. Sounds harsh but seriously; just rip off the bandaid and do it as fast as you can so the discomfort is minimal.
  • Get a good road trip buddy. Then complain to your road trip buddy to distract yourself (sorry bae & thanks for putting up with me). Chris actually has become pretty great at lightening the mood and making me laugh when I feel shitty. He makes statements like “yeah babe my uterus hurts too, maybe I have endo”.
  • Pain killers, pain spray & pillows. Have pain killers on hand and easily accessible. Use Zen Herbal Spray for natural pain relief; it gives a warming, tingling sensation and helps a lot in place of a heat pack. And pillows – they’re comfy so duh.
  • Stop at information centres to use their toilets – they’re much cleaner than random road side stops. Or go au naturale and wee in the bushes! Watch out for wildlife; you don’t want a snake biting your coochie.
  • Take packed food as most foods you find on open roads is just fast food which makes my symptoms worse. I wasn’t prepared enough to pre-make food before we left so we stopped at a Coles in a bigger town to get carrot sticks, hummus and fruit

  • And of course take regular quick stops to stretch and wee

If you guys have a holiday or road trip coming up, hopefully these tips will be helpful! And anyone who lives in Melbourne hit me up so we can connect.

Much love,

N x

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Tips and Tricks

There’s a few holistic remedies I incorporate into my life to help manage my symptoms and I’d love to share these with you guys. These things are useful for a range of chronic illnesses – I suffer from ankylosing spondylitis (an auto-immune disease), adenomyosis & endometriosis (diseases related to the reproductive organs), irritable bowel syndrome and anxiety & depression.

If you’re interested in some of my fave management tips and tricks, keep reading!

  • ZEN PAIN RELIEF & HEAT BAGS

These are my LIFE. I have a back wrap heat pack from Wili Heat Bags, which is so convenient because it stays in place as you do things or sleep. Zen Herbal Spray is my favourite type of natural pain relief; it heats up and tingles on the skin. I spray it on my lower back and abdomen.

  • EXERCISE – getting through the pain and exhaustion

I’ve always hated exercise (with the exception of dancing) as it aggravated my pain, gave me headaches and made me feel like shit. But I have recently started training with a PT and pushing through the tough stuff as I know how important it is for my health. Yes, it still aggravates my pain (after a session the other day I could barely move and I had to take oxycodone), and I still feel exhausted and overall shitty afterwards (generally needing to nap because its taken up so many spoons).

But to combat this I prefer to train at night so that I can just go to bed soon after a session, and I take panadol and ibuprofen before a session. Stretching afterwards helps a lot too.

Since being on an immune suppressant, I’ve been getting sick really easily. I’ve noticed that exercise actually helps to clear congestion and I feel better afterwards. (Don’t exercise if you’re super sick though!)

  • RESOURCES

Books are an amazing way to learn and understand your diseases. Some of my favourite’s;

Brain on Fire – My Month of Madness by Susannah Cahalan

Endometriosis and Pelvic Pain by Dr Susan Evans

Blogs are also a great way to learn from first hand experiences (just remember these are personal experiences and opinions, always chat to your doctor to confirm information). Some of my favourite blogs;

https://allaboutannieblog.com/ – All About Annie Blog

https://alexandraellen.com/ – Breaking Stigma

http://www.emlwy.com/ – Endometriosis: My Life With You

  • DIFFUSER & ESSENTIAL OILS

These calm me. I really like the smell of lavender plus any citrus scents. I’ve also just used a bottle of Frankincense. I’m not sure what actual benefits these have but they help me to sleep at night and calm me when I’m in a flare or upset.

I’ve been using DoTerra Essential Oils, and I also use their roll on blends including Clary Calm.

  • GREENS POWDER

I use Morlife Greens Power because you can get it in convenient serving size sachets. Pineapple coconut or acai raspberry are my favourite flavours; I just mix with 150 mls of water and shot it.

I like knowing I’m getting in these extra nutrients especially on days when I feel really nauseous and don’t have an appetite. 

  • PROBIOTICS

I take a daily tablet, but it also comes in lots of other forms and foods & drinks e.g. fermented foods, kombucha, kimchi, yoghurt etc

I always used to take a probiotic to prevent & treat reoccurring thrush, and after a recent course of antibiotics, I’ve started again. Gut health is so important!

  • SLEEP

Let your body sleep when it needs to. Battling illnesses means your body is constantly fighting and you need more sleep than the regular person. Take a nap if you’re tired. Sleep in if you need to. Don’t feel guilty for sleeping. Your health should always come first, and you need sleep to heal. Struggle to sleep at night? Download an app to help you – I personally love Rain Rain which makes nature noises.

I’d love to hear what tools you use to manage your conditions; drop a comment below!

N. xo

I’m Back!

Hey Beauties!

Long time, no talk (well me write, you read hehe). I have missed you all, and I want to say a huge thank you to all the amazing women (and men) who have reached out to me in the last few months. I have been overwhelmed, surprised and humbled to receive so many messages checking in on me whilst I have a tad MIA. You guys make my heart happy (sappy but true). And your messages and encouragement to resume blogging is the reason I’m writing again!

Around Christmas, I took a little unplanned time away from social media – well not completely inactive obviously but not as active as I was and definitely not blogging. I’ve been in-and-out of hospital and feeling a bit overwhelmed to share what I was going through. I was a bit embarrassed to be honest – I didn’t want to sound like I was whinging, looking for sympathy or harping on about my illnesses.

Here’s a quick summary of my procedures for those who have asked;

DECEMBER

  • PRF (Pulsed Radio Frequency) of my cluneal nerves (in-patient under General Anaesthetic)
    This basically involves burning of the nerves to help with chronic pain, however the nerves eventually grow back. I had post op pain and found it painful to put pressure on my back for about a week but I noticed improvement of my chronic lower back pain. However I did notice a transfer of pain to my lower abdomen (constant ache, throbbing)
  • 3 week in-hospital treatment of TMS (Transcranial Magnetic Stimulation)
    This treatment was to help with chronic pain and also anxiety & depression. At first I didn’t notice any improvements (and I spent Christmas in hospital which sucked) but now I feel so much better, and I think I’ve made lots of progress thanks to TMS

JANUARY

I went to Melbourne for a little get-away!

FEBRUARY

  • Remicade (infliximab) Infusions
    I have been diagnosed with the auto-immune disease ankylosing spondylitis. My rheumatologist also suspects I have fibromyalgia. Remicade (infliximab) is a antibody biologic drug that is used to treat auto-immune diseases. I have these infusions every few weeks as an in-patient in hospital. I haven’t noticed any changes yet as I’ve only just had my second infusion
  • PRF sacroiliac joint and cluneal nerve (In-patient under General Anaesthetic)
    This was a repeat procedure of my cluneal nerve, to maximise the benefit. My pain specialist also did a PRF on my sacroiliac joint (as bone scans and MRI’s show inflammation here). I had post op pain and bruising; it wasn’t cute to look at my bootay around this time. I haven’t noticed any benefits just yet (it’s a bit soon to tell)
  • Hysteroscopy & insertion of 1 Mirena IUD – ouch the major cramps of the Mirena settling in remind me why I got the double Mirena’s removed! My gynae is adamant that I treat the adenomyosis (if untreated it can likely lead to infertility) and I prefer giving the Mirena a 6th (yeah I’ve had a lot of tries) attempt over other option; Zoladex

I’m more than happy to help you babes out if you have any questions about my experiences with all of this – I’d love to chat, no matter what it’s about. Message me on instagram https://www.instagram.com/nikkolaadams/

Much love to you all & thank you for sticking around. I’ll be back with a blog post soon!

Nikki x

SELF LOVE + Quotes From Fellow Sufferers & Bloggers

Battling a chronic illness can suck big time. That’s why it is so important to find a way to pull yourself out of that spoonie slump. What do you do to make yourself feel better? How do you show self love & self care? I’ve found a few different ways to make myself feel more confident, more beautiful and happier – these include things such as family time, getting my nails done, eyelash extensions, massages, time outdoors etc. Whilst these are great, I wanted to share a different perspective with you all, so I’ve chatted to a few fellow sufferers and asked them to share their coping methods with me. I’ve learnt a lot from these wonderful ladies & I’ve started implementing some of their happy hobbies into my own life – and I’m loving it. Sometime’s it’s great to hear what other women use as tools to cope with chronic illness – you may find exactly what you’ve been looking for… 

The beautiful Jess @endometriosis_australia, is lucky to have parents who help out with her gorgeous daughter. She’s all about watching movies, drinking cups of tea and sitting on the couch with her hot water bottle to rest. Jess has been through a lot, and she is a very strong, brave woman – if you haven’t checked out her page you definitely should. Her story is inspiring. We both wish that there was a magical cure to help us feel ‘normal’.

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Kelsey @endostrong loves doing girly things like painting her nails, which always cheers her up. She also loves the outdoors & going for small hikes. She told me “I spend a lot of time at the beach too which a a great pain day activity because literally you can just sit”. Amen sister! I need to go to the beach more often – staying indoors when I’m in pain is bad for my state of mind, so it’s great to get outside in the fresh air.

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Autumn @theendotwins is big on make up (and she’s damn good at it). I can totally relate to that! I’m a professional makeup artist, so I love painting my own face & my clients. Fela mentioned that she’s “really big on self care like face masks and bubble baths! Lighting candles and pampering” – sounds like a pretty amazing way to uplift your spirits to me! Sometimes, I find that in the middle of a pain flare, I take one look at the bath and think it’s too much effort – I need to take Fela’s advice and force myself to run that bath and pamper myself… my body & mind will thank me for it afterwards – and yours will too!

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Amee Leigh @ameeleighatkins sum’s up self care perfectly – “definitely retail therapy ‘treat yo’self”. YAS GURL. Amee also mentioned something that I do myself (as I work part-time in childcare); “I try to surround myself with my friends babies and soak up all their inhibited joy as they’re so oblivious to life, I can’t not smile around them and be happy around them.”

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Bec @becsjourney_ has her methods sorted. Her “me days” or “me afternoons”, as she calls them, involve; heading into the city for a day of shopping, walking and exploring in the fresh air, going to the movies, going out for lunch. She said she really takes the time to appreciate these good health days, as it reminds her that she is ‘normal’. Bec also said “I love to put on some good music and dance around my house, I think it’s the feeling of being able to move and not be curled up in bed that’s really encouraging for my body”. 

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Annie @allaboutannieblog emphasises the importance of staying positive throughout her health journey. If you haven’t checked out her blog already, you definitely should (it’s one of my favourite’s). A few of the way’s Annie makes herself feel better include; “giving myself pep talks, binge watching t.v. series, getting my nails done by my bestie – she is SO talented (@darlingbeautyco), going to the gym (releasing those endorphins yo!), spending quality time with my family (my nephew Quincy is a quick fire way to cheer me up), putting on a nice outfit and doing my hair, talking to my partner Kodi (he always knows what to say).   

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Lisa-Maria @findloveyourbody said “I jump into my black bathing costume (because I like to show self love) and enjoy some “me time” in the form of yoga”.

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I just LOVED her response. As most of you have probably noticed by now – I’m all about loving yourself and being confident. If there’s anything you girls take away from this blog post, please take some self love! Right now, muster up all the strength you have and do something that makes you feel beautiful. Take a selfie. Go for a walk. Have a bath. Tell yourself how amazing you are. Keep saying it until you believe it. Self love takes time & practice, but it is so important, especially when battling a disease that makes you feel so crappy on the inside. You need to love yourself – because you are worthy, valuable, beautiful and strong. It takes a strong person to battle a chronic illness everyday, so give yourself the credit you deserve.

Let me know what you do for self care; what do you do to help yourself feel better when battling a chronic illness? Leave a comment below, I’d love to hear from you guys.

Much love,

Nikkola x.

P.S. If you have read to the end; firstly, thank you. Secondly, I want you to actually take a selfie, send it to me via private message and tell me at least one thing you love about yourself and a little about yourself as well (if you feel comfortable sharing). Self love starts now ladies! If you take the time to do this, I will send back a list of some things I see in you that I find beautiful – sometime’s it’s great to have a new perspective on yourself. And hopefully this little self love exercise will brighten up your heart. If you would like to take part, my Instagram is @nikkolaadams and Facebook is Nikkola Adams – Chronically Glam: Life With An Invisible Illness (@NikkolaAdamsBlog)

Images (of myself): Krystal Atkins Photography

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FYI: I don’t ever get my period.

It’s 10pm at night and I’m back in the shower. Curled over, with the water aimed on my lower back. So boiling hot it’ll probably leave a mark but I don’t care. The hot, drumming sensation is the only thing that’s distracting me from pain. 

This scenario isn’t unfamiliar to me. There’s been countless occasions I’ve laid on the tiles, letting the water fall onto my back while I wait for heavy pain killers to kick in. And tonight’s no different. It had been a pretty good week pain wise until this flare kicked in. It came out of no where, and it hit hard. 

Let’s get one thing cleared up first – I don’t have my period. I haven’t had a proper period in years. I’ve had bleeding after surgeries (yes plural, because there’s been way too many of them). But I have not had a period in a very long time. So there’s a common myth debunked straight away – pain doesn’t always equal period. In my case, the two don’t correlate at all because my doctors have hormonally stopped my menstrual cycle. So here I am, in the middle of a massive pain flare and I have absolutely no idea why. 

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That’s the thing with adenomyosis & endometriosis; a lot of the time, you go from fine to agony in a heartbeat and have no idea why. These diseases are unpredictable, unknown and often hard to treat. The pain I feel daily is a throbbing, achy feeling in my lower back. That pain never ever goes away, I feel it everyday. Pain flares are horrific and a completely hopeless experience. My doctor quoted that during an adenomyosis/endometriosis flare, my uterus contracts. Many women who suffer from adenomyosis and/or endometriosis, say that the pain is worse than labour pains. So to sum it up – it’s not a whole lot of fun. 

The aim of my blog has always been to educate, empower and give a voice to those suffering. I think it’s so important to continue the conversation about chronic illnesses – endometriosis, adenomyosis and so so many more. There are so many people out there suffering & I want you to know that it is okay to speak up, it’s okay to say ‘I’m not okay’. It doesn’t make you weak. It doesn’t make you a whinger. Yes, it does make you vulnerable… but that’s what makes you human. And it is also what makes you a part of the chronic illness community, where spoonies come together to share stories, connect, support and encourage one another, and feel a sense of belonging. You are not alone. And you are so, so brave; keep fighting. 

There are so many more conditions out there that you probably haven’t ever heard about. So the more people who speak up, and the more people who listen; will lead to awareness, support and a world that understands imperfection, chronic illness & mental health. 

Love to you all,

Nikkola 

x

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An open letter…

There are so many people who all play a different role in my life, and most of them do know about my health struggles. There have been so many ups and downs. And there are so many things I don’t know how to say aloud. So this is an open letter to my friends, my family, my acquaintances – basically everyone I know…

Firstly, and most importantly, I’m not faking it. It’s not ‘all in my head’. I am not making this up. I am not over exaggerating. I have a disease.

I am trying so hard to get better – please don’t ever doubt that. I am fighting so hard everyday and I wish this would all just go away – I want to be healthy and I want to feel ‘normal’.

I’m sorry for all the times we have made plans and I’ve had to cancel – I feel so bad for letting people down, but pain flares come and go suddenly and sometimes even just sitting and talking isn’t even something I can handle. Literally everything feels too hard when I am in the middle of a pain flare.

Yes, I want to have a baby. No, I don’t know whether or not I can. Having a baby is not a cure for adenomyosis or endometriosis – there is no cure.

Please stop trying to give me advice when I don’t ask for it. I know you have good intentions – and I am so appreciative of you trying to help – but if I don’t ask for advice, it means I’m too overwhelmed to take on any new information. I have tried pretty much everything. I have done endless amounts of research. At the moment I am working with a group of doctors and I need to trust in the treatment plan I am on right now. 

Yes, I have tried an incredible amount of natural healing methods.

I have a disease and I need to take medication. At the moment I have to be on medication – I take a lot and I know it isn’t ‘good for me’, but I feel a thousand times worse without it.

Please stop being so optimistic and just accept the fact that I am sick. Sometimes too much positivity and optimism is a bad thing – it leads to false hope and never ending disappointment. We can’t wish away my illness. The power of positivity doesn’t always cure diseases. Please just accept that I am sick, agree with me that it f*cking sucks and we can work around my illness and still be happy.

Please stop saying ‘it could be worse’. You have no idea how much that hurts.

Please don’t compare my situation to anyone else’s, or your own. If you know someone who has had Endo or Adeno and they are now better, I am sooo happy for them – but that doesn’t mean that our stories are the same.

I know I don’t look sick. I know I don’t always act sick. I dress up, put on makeup, go out and socialise, go to work, smile, have sex, drink alcohol – but that doesn’t mean I’m not sick. I don’t want to let this illness control my life so I still try to do everything I can.

Please understand that you are so important to me – I value every single relationship in my life, but I’m not perfect – sometimes I suck at being a friend, a daughter, a girlfriend, a big sister, an employee… but trust me, I am trying.

And lastly, thank you. Thank you for your support, your kindness, your encouraging words, your forgiveness and your love. Thank you to everyone who has stood by me through the good times and the bad. I will always be grateful for the people who are sitting on this rollercoaster next to me, knowing that it might go off track, but they stay regardless – you know who you are.