Hello beautiful peeps!
It's been a while, but most of you will know that I have been a busy little bee writing my first book!
Yep, I'm still pinching myself. I'm excited and nervous. It's one thing to pour your heart out and hope that everyone that read your words are also moved to laughter, tears and a sense of enjoyment. It's quite another when this becomes very real and soon enough I may have many of you that have turned the pages of my life and simply do not like it!
Oh well, that's life though isn't it?
To catch you all up on my daily excitement these last few months....(my last blog was in June!) I thought I would let you all in on the secret life of stoma's, fatigue, brain fog and of course my delicious sense of fun!
I had celebrated my 45th birthday in June and I think looking back now, it was the starting point of where I was slowly dousing the fires of fear. I was positive, grateful, happy to be alive but that has always been a semblance of the undercurrent of the tiny scared vibes pulsating inside. I had commenced my Crohn's treatment again, and it has taken my body quite a few months to get used to it again. That shit is strong! You really do not realise the potency until a drug is taken away from your body and then you re-start it; shakes, BRAIN FOG and oh so tired so much of the time.
It's getting better each time though and for that I am thankful.
Let me explain about the dreaded Brain Fog.
Now, I admit before all the fun and games from these past eleven months, I had read others experiences with Brain Fog, and it affects many people with auto-immune diseases. Over the past twenty five years of having Crohn's, this was a side effect that rarely reared it's ugly head in me. Today? Well, let me tell you something, this bloody side effect is all too consuming. It is horrible. I'm not sure why it's become more prevalent after cancer, but there you go!
Brain Fog is like having cotton wool instead of a brain inside your head. For myself, it is at it's most potent first thing in the morning. I sometimes find it difficult to string a sentence together and honestly it takes a good hour for the fog to lift. I was very alarmed when I first started to notice that this wasn't just me recovering from all these surgeries.
This was now the new normal. Yikes! It was a horrible revelation to have when I had it, but one that has made the list with all the other contestants!
✨A good night's sleep helps tremendously with this and it is unfortunately something that eludes me now.
✨600 mls of celery juice on an empty stomach, so upon awakening, is really good for this too. (I can't go anywhere though because my stoma bag fills up and needs emptying a number of times over the course of the next few hours)
✨Being still and sitting for an hour before starting your day is also very helpful.
Have you heard of Cancer Fatigue?
Well, neither had I until only recently. Explaining to the people around you that the fatigue you are experiencing is frankly indescribable is not an easy thing to be living with. You sit there and think..'What the f@#k is wrong with me?'. 'How can I be feeling like this?'
Let me try to describe the indescribable......it is like a giant, invisible octopus has wrapped it's tentacles around every muscle in your body, has slithered it's tentacles inside your head, throughout your bloodstream and has sucked your will to inhale another breath. Not pleasant and completely debilitating.
There is a feeling of shame that you are going through this because you feel that others simply do not understand and may think deep down that you are full of shit. Not fun, I can assure you.
The bright side is, at least for me anyway, I am now only having this happen once or twice a week, as opposed to three or four days. My biggest issue was that I wanted to go back to who I used to be pre cancer, pre stoma, pre barbie butt surgery and I've pushed myself to exercise how I used to; only to crash and burn the following day and I would be out of commission for days on end. Stupid of me.
I came to the conclusion, only recently would you believe, after one of my weekly Facebook lives talking about 'How good are we at accepting change?'. It dawned on me that I encourage everyone to love themselves and be gentle and kind to themselves and yet here I was pushing my poor body to beyond it's limits, because I couldn't accept that this is my new normal. Big light bulb moment!
✨A good exercise regime is very helpful for fatigue, as counterintuitive as that may sound. The secret is to push yourself to a maximum level of 70%, instead of going all out. I've now adjusted my workouts to only 3 sets per round, lighter weights and l stretch, stretch, stretch.
✨I finally accepted that I needed to talk to a professional who deals with cancer patients and who is helping me adjust to my new normal. Cancer isn't just about the surgeries, the tests, the chemotherapy and treatments. It changes your life forever.
✨Resting a whole lot more is paramount. My body has undergone so much trauma in this last year and it is still repairing and adjusting to it's new functions.
Stella my Stoma- she's a bag of laughs, pardon the pun 😀
I know you all want an update on missy and I shall provide all the fun adventures I am having with miss Stella. If you've read my previous blogs and follow me on my socials, you know I am not a stranger to showing off my stoma. It is such a massive life change that honestly I don't think I was ever going to be fully prepared to understand the enormity of living out the rest of days with a bag attached to my stomach. It is a huge statement because it is a huge deal.
To be clear, I am super grateful to have her, she's a good girl most of the time. What is difficult to digest is the uncertainty of every day. I awoke from surgery on the 13th January 2020, too drugged up to even look at my stomach. The next day however when I looked down at my tummy at this swollen, pink nub with a clear bag that was attached, I was indifferent. I had done so much research leading up to this operation that the look of it didn't shock nor frighten me. That was a relief.
I carried this feeling and accepted my new state of being with graciousness and a true determination to overcome any obstacles that would show up along the way.
I got through the second surgery, (by the skin of my teeth), and once again re learnt how to care for Stella, as she was readjusted and repositioned on my tummy. I needed to change the style of bags as suddenly I started leaking all the time. This was my worst fear!
I got through all that too.
And here I am today. It's not easy living with a stoma. I thought the sleepless nights would only be temporary, but no, they are my new normal. Stella wakens me in the darkest hours of the night, with a sharp painful jab, she lets me know that she is full and needs to be changed. Oh how I crave one night of sleeping through 'til morning! The silver lining to this though? She wakes me! I would hate to wake up to a blow out and the contents of my bag all over my bed sheets, my pyjamas and my body.
And so I stumble out of bed, shuffle to the bathroom, empty my bag, clean it up, fold it back up, wash my hands, keep my eyes half closed to try to trick them into believing that this is all an illusion and I am only dreaming. (Doesn't work, there's no brain fog at 2 am! Darn it!)
I climb back into bed, try and get into a comfortable position to lull myself back to sleep. Again, doesn't work! It takes hours to fall back asleep, I usually dose off at about 5am ish.
I have a silver lining for this also....I now spend this time performing a self healing. I utilise the silence and connect with my inner self whilst clearing my chakras. I call it physio for the soul.😍
O.k, back to Stella. Another issue that is ongoing is the rawness of the peristomal skin (the skin surrounding the stome site). It is insanely itchy and so irritating. There are so many products to try but honestly you cannot put a lotion as the bag then wont stick. The stoma powder is a good barrier for where the bag is stuck to the skin, but my rash sits below the bottom of the base plate and it is as red as rooster! Constant itching is so tiresome!
I have had about three incidents in the last month that have disturbed me. Stella had been working just fine and suddenly I began to have waves of severe discomfort in my tummy, wash over me. I had sweat inducing paralysis overcome me as I am reminded of this same feeling when I was rushed into emergency in February. Each time, it has been that I have had an obstruction that has unblocked itself over a good many hours. The pain was excruciating but Stella was working, albeit a lot slower, but working which means it was a partial block that needed to resolve itself. The pain is equal to the worst contractions in childbirth! It's that bad!
✨A heat pack is a must when this happens. Unfortunately this is common for many from our community of ostomates.
✨Keep your fluids up! It allows the more fibrous foods to breakdown properly
✨Do not, I repeat, do not eat potato crisps an hour after you have eaten broccoli for dinner. Your output, from the broccoli is thick as it is, eating crisps makes it like cement! You will be in a mountain of pain trying to push all that through! (Sorry, not sorry)
This is my new normal. Where is the woman that used to race to meetings, work in a corporate finance role, jump on a plane every second week for work, be at the gym at 4.30am in the mornings so she could be sitting at her desk in the city office by 8am, catch up with colleagues over drinks on a week night before racing home to get dinner started with lots of laughs with her family, reminiscing about our days?
She's still here. I'm here. I'm alive. My life has changed but the important stuff is enhanced. I am surrounded by my beautiful family. We get to reminisce so much more about our days, almost instantly because we are all at home! I found my love for writing again. I have become more authentic and aligned to my true purpose in this world. My new normal has allowed me to rediscover and enhance my gifts as an accredited Master Energy Healer. I have been able to dedicate the precious time I do have to my future goals.
My days are not the 9-5 because I simply cannot function like that anymore. I come alive in the afternoons when my body allows me, and I grab those magical hours and purposefully create, learn and apply myself to my dreams.
My New Normal? I like it!
Love and Light
P.S. If you haven't grabbed a copy of my book yet, here is the link. It's at the special price of AUD $19.95 plus $5 postage for a limited time.🎈🎈
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