What is life like when you have Crohns?

 A Vlogmas day in the life of a crohns person – Day 3 2020

 

In this video you can see what a typical day in the life looks like for me. Part of it shows what I do to take care of my health as someone with Autoimmune disease, and there are some general life bits, like simply heading to the shops. 

 

At the end of this video you can see what I was doing on this vlogmas day in 2015, 2016, 2017, 2019 …

I have changed.

It’s been a long time since I have shared here with you on this blog in this manner.  Tempted to write something about not really knowing why it has taken me so long to type on this blog again (but that would be a lie) let’s just settle in to have a really good heart to heart chat now and see how this progresses for both you and me.

So much has changed; I have changed.  Many curveballs have thrown their way into my life to give me pause for thought. 

Here I sit high in the clouds on a plane to Turkey and I sense now is the perfect time to open up and allow lots to flood out onto this page.  

If you are an original (OG) follower of this blog, you will have seen so many changes over the past ten years since it has been live. Initially brought about through being in total disbelief of the learning around the law of attraction, I thought, “Why doesn’t everyone know this stuff?” And to my surprise I began to learn that many people actually did know! 

There have been many uses for this blog but always coming back to the place of falling into ‘lifestyle’ which sounds lame and wide.  Yet for me, what I love to read about, talk about and share is around lifestyle.  

Within this post I will touch upon a few subjects that I will be bravely expanding on within the next few posts.

Gosh I had no idea how tired I had let myself get but now that I’m on the plane with my work up to date, I am super sleepy but so happy. Happier than I think I have ever known before in my life.  That’s the most incredible thing to say ever.

I shuffle in my seat, hoping to get more comfy on this EasyJet flight but without success.  So in my discomfort I begin to write in my mind and guess I’ll fire up the keyboard and get talking to you guys.

The lack of posts on this blog are due to my stumbling over my words, which is crazy for a writer.  It isn’t the words of course, it’s the subject material.  Sharing such topics sees me open and raw and you will see why as the blog posts unfold.

Let’s begin here, in a place of clarity which has frightened me beyond belief.  Last week I took to the stage with my fellow cohort of post graduate students as we dug deep into our reserves of valour and read our work to an audience of important guests.  Such things seldom make me nervous but emotions were evoked as I realised my potential as an author following the feedback I have gained from the tutors who carefully have us under their wing. During the day, one academic who I trust and respect massively suggested I begin to label my work as memoir.  I gulped visibly and felt myself become mute.  I’ll share the full story with you in a full and open blog post, as I will these other subjects.

There has been the issue of dealing with living with a mother with dementia and I can't even bring myself to talk about it anymore which carries with it huge guilt.  I have tried to bury those selfish feelings but recently I was filmed by a wonderful couple of talented filmmakers and they touched on the story from the point of view of the struggles a career faces rather than, ‘oh this person has dementia and that’s really sad.’ 

A brave move. 

Open to criticism and if I was to really be open and tell you how I feel you’ll likely think of me as a bitch.  Although if you are in that place too, you are likely to understand totally and smile as you realize someone is finally speaking out.  This is a huge topic and I have so much to say around this.

I’ve changed lately.  

After going through the issue of the anxiety as I finished my undergraduate science degree I feel so much happier and less apologetic for who I am. This seems to suit some, not others. But it is what it is and I have had a further health curveball thrown at me which I was going to keep to myself but it’s going to be a long term influence on my life and part of my ‘living’ is going to be involving you guys on my platform with my journey from here on.  So I need to tell you and once again, this will be expanded upon in future blog posts.  

Likely you know I’m dealing with a couple of chronic disease issues, autoimmune related (Crohn's and Ankylosing spondylitis) which need careful attention but are semi-well controlled, well now there is something else.

I had an abnormal smear.

My cervix was biopsied in colposcopy and it turns out I have cell changes they are not happy with.  This has given me a myriad of feelings and I’m currently processing everything while trying to take the best care of myself I ever have.  I decided to bring this into my blog posts and likely will make a YouTube video about it as it's not so uncommon and I think taking out the fear might be helpful in some way, to someone.  Simply sharing how I feel might give someone else some feeling that might be a positive reflection and so I decided to take my head out of the sand and I’m going to write about it.

Signing off this blog post half written, I hope you will all be with me on this rollercoaster journey that I have decided to embrace with white knuckles.  It’s not been an easy decision to start blogging again but I have missed it, I love it and I hope to help spread the love between us.  I promise to give better updates soon....but please know I am ok and things are ok, and we will be okay.

Nathan and I in Turkey

He took me on this jet ski! Living life!

Reach out if you feel you want to and maybe are feeling lonesome....

Love always

Louise xoxo 

Halloween - Evil. Horror. Fear.

Halloween

I'm not a fan, I must be honest.

The thought of fear being instilled into people...

As a creative, my mind is easily spiked to include manifestations of the most horrific kind that purely and surely couldn’t be true.

I’m much more an “I believe in angels and magic” type of person.  Thinking of Halloween as something evil and inviting bad spirits around isn’t a welcome thing at my door!

Last year, a simple drive to collect my daughter saw me drive past some child size teddy bear thing on the pavement. Strange. As I drove closer I couldn’t help but take my eyes off the road and stare.  The head of this creature seemed to stare straight into my soul and cocked his head to one side with increasing intensity of weirdness.  Freaked out, I began to wonder if I had imagined this. I’d never seen anything like it before.

Yesterday, a parcel arrived for me. It was ‘prep’ for an upcoming biopsy I have to have. UGH.  31^st October.  More horror to add to this day.  So where is the light in this shade?

2 years ago my mother came to live with us.  People love her.  She laughs at everything. Which is wearing, you can imagine.  She and I are chalk and cheese.  She has dementia and the laughter and chatty side of her is magnified. 

Her old house was in an area of town where they used to put  up signs saying “No trick or treaters” as it was constant knock knock knock at the door to the point of driving everyone crazy.

Yet in my road, there are rules. If you have a pumpkin out, it means you can knock.  Despite my surgery that day, we will be well stocked with ‘treats’ and I will leave mum in charge! Opening the door to well dressed children while parents stand back looking on.  No doubt mum will love the banter and if it puts a smile on her face for a few hours, there is nothing evil about Halloween at all.

Being a spoonie

Late summer sun cast long shadows over the greenest of grass.

Today was going to be a good day, I had promised myself this. After recent events taking me into distraction, Harley would be my most faithful companion as we headed off into nature for some grounding.

Sadly, it was not to be so chilled as I was hoping as fellow dog walkers decided not to follow the rules and keep their dogs on a lead. Nothing was an issue really. But my anxieties took me to a place of worry and knowing I would need to rise early and get out

before too many people came into our space.  

Today is better. 

Piano chill music selected on my phone, playing through my ears like melted butter...writing...my furry friend at my feet.  Today was going to be a good day.  
A good day with curly hair.

Why not.

Camp NaNoWriMo starts tomorrow - this is how I'm feeling

The last day of June means July 1st Tomorrow and the start of Camp NaNoWriMo! I'm excited to give myself a target to reach and also a little nervous as I do have some trips booked and an entire host of video editing to do for my Youtube channel before that.  I promised myself this would be done before I was shooting off to the airport.  So what is stopping me from being on top of my game?  Shall I tell you?  This is quite a vunerable thing to share...

Since finishing university my body has been over run with different infections and the fatigue has been so consuming that to plan a journey past a half hour drive has at times felt impossible. These grumbles also seem to go hand in hand with terrible mental health issues for me which is something I would gladly wave a magic wand at and get over it.  If you have even remotely suffered depression or anxiety you will understand this feeling. You can't control it no matter how you try.  For me, I have learnt through my science degree that 90% of the serotonin we make comes from the gut and with my issues of inflammatory bowel disease I am pretty sure my gut could be in better shape than currently.  Sure I'm taking my probiotics and they definitely do help.  So I'm giving in and sleeping lots and I suspect right now it would be a good time to try as best I can to surround myself with those people I love and trust to be sweet and lovely to me. Petting my furry baby Harley always helps and you know how they just love you so unconditionally in a way we all know humans could learn from. 
Trying to eat as little as possible to give my digestive system a break is something that's recommended when you have crohns. So I'm trying that.  But when you are a true 'foodie' it's hard.  Another reason to feel blue.  Sugar is the enemy when you have gut issues and bacteria love to thrive on the white stuff so I'm trying to cut that out as best I can...sigh....anyhow I have really digressed there.

Sometimes these issues with the brain definitely help to keep me on track.  Let me try and explain. You see I have started to converse over on twitter with many writer types and often you will find people who love to write may sometimes love being on their own typing away with their own words.  Sometimes with a mind rather like mine.  Anxious or over thinkers. Some days 'we' have no choice but to be at home with our words.  Yet I can't tell you how long I have given myself a hard time for trying to live the dream.  Strange really that my playlist has just played 'A million Dreams' from The Greatest Showman!

A dilemma i have is this: I've been offered a wonderful (but likely very stressful) research project.  There is money attached and a wonderful chance to make a difference in the world of diabetes.  I'm tempted and it will be a great challenge.  Yet am I up to it?  Can I do it without crumbling?  You see I sense being stuck between a rock and hard place is something that I must recognise where I am.  While loving the life of trying to get back to more writing/editing and working on my health at the gym, including walking the dog and all these other things that see me smiling it doesn't feel like work.

Which leaves me doubting the acceptability of doing it as a job....which is exactly what I teach others they must do....to follow those dreams.

NaNoWriMo will see me committing to 30,000 words which is 1000 a day and I'm going to start working back on the book I have left alone for about 4 years now. It's called Happiness in vitro and I'm super excited to get this one published but I want to get that first draught under my belt and work super hard on perfecting it.  By the end of July we hope I have achieved what I need to achieve in my writing.  I do love it.  I promise I will aim to keep posting on this blog too as I simply love blogging. I have more blogs than is normal for a person!  Without sounding too crazy, I simply feel like 'me' when I'm writing.  

Something I can't deny.

My writer dream is coming true

Still I write from my bed.  Feeling sore.  More than sore, the pain is intense at times.

Juggling taking care of mother is unpleasant. Those feelings of guilt.  As I wince at the pain one more time, I hear Harley snore at my feet.  He hasn't left my side.  
Crohns is unpleasant and deserves a  lot of respect. I know this.  Nothing new here to see.  Yet this time feels different, rather like how i felt when i was first diagnosed.  Stunned and vulnerable.  

Knowing that feeling of being reminded so very strongly that I must listen.  I must.  


Before today, I was feeling I was being pulled in a direction where there was no choice but to listen to the powers that be.  i was being taken to the place of dreams, yet fighting and screaming at every corner as this simply wasn't what I was raised to believe.  Dreams don't come true.  Not for the likes of me.  You can't possibly live your passions and that be enough. No way. It was all about misery and sweat and toil.  This is precisely what I was taught.  Could I seriously think for a minute that I might be able to do exactly what I'm doing now for my job?  I'm sitting here, totally concentrating on my words which I might add are flowing beautifully as i write my next piece in the novel I have neglected for at least two years - respecting my chronic illness while still being an achiever.

Always i have wanted to write.  Always I have written. Either letters to the grandparents, love letters to less deserving other half or simply in the journal. Of course now we have this digital world and what was once a skill of typing is now a necessity we all must learn for this online society we now enjoy.  Could my writing be improved upon? Probably.  Yet I have stories which simply must be told.  Living with zero regret is an aim in my life.  An aim I currently have achieved.  Yet if I were to pass into the next life with these books still inside me, there is the regret.  As Wayne Dyer said, "Don't die with the music still in you."

For once, the strongest feeling is within me. A feeling that I am going to write and write some more. Allowing myself the indulgence of putting fingers to keys in bed, in the coffee shop, at my desk. All while taking care of mum and the twins, walking Harley when the mood takes me and being able to spend a day nursing my poorly gut.  I could do this. It's the thing.

Tomorrow I see myself getting up and out early. Taking a drive somewhere like the sea front and setting up the tripod.  Filming my story of this transition into a writer.  The story of how miserable I have been while trying to fit in with the world which I find way too hard to deal with.  The people who are so nasty and negative, the clothes you have to wear to look corporate, the schedules of commuting which costs a pretty penny to watch others looking miserably into their coffee cups while rocking their head against the beat of the music within their headphones yet in synch with the rocking of the train. 

It's not me.  

Me is the girl with curly hair.  T shirt and shorts.  Maybe a fleece or hoodie. The girl who wants a tan and make up but when she wants it.  Being a little bit of a hippy.  Living within the trees or taking time out to put my feet in the sand while letting the energy of grounding in nature help me with the flow.  Could this happy life be possible?  The life that sees me able to love my day writing, wherever and whatever.  Enough that people sense the passion and want to know more, buying into my stories, my books, my online videos telling the life story of what is going on.  Could this be that i might possibly earn a little money to pay the bills?

For the first time ever I sense a shift. It's different to before when I wanted to believe it.  This is almost like there is simply no choice but to make things work.  Without giving everything I've got to my writing I will have failed at my own life, my own path, my own blessings and talents.

It's time to step into my truth and my hearts desire and see what happens. Are you with me?

Nestle gluten free corn flakes

I was thrilled to find these cornflakes randomly on the shelf! Well done Nestle - they are delicious too.  Loving that - if you like to eat cereals and corn, you can as these had no added barley malt extract and many add it in for flavour.



Go see the video and I tell you more about the nutritional stuff in there you need to know :)

Ps subscribe to the channel as there is more and more going up over there to help you into your Lusher Life.



Have a wonderful Monday everyone.



Louise xoxo

Out of my hands.

Out of my hands.

It’s been decided for me.

Plenty of times I have suspected there are moments of ‘oh, I should be doing this.’ or, ‘ah I think they are leading me here.’

Often, I don’t listen.

Tiny voices echo in my head, “write! Write!” and I feel it in my gut too.  I begin to write. I am filled with joy. I love it.

From deeper within another voice begins to whisper.

“You aren’t good enough.”

“You need to earn money.”

“You like stress.”

“You like rushing around.”

“You like routine.”

“You love doing your make up and rushing out the door.”

“You need a proper job.”

“You need a normal job.”

Driving my friends crazy, I look for reassurance.

“I love writing, what do you think I should do? Could I work online? Do you think it could be a success?”

They tell me, “YES!” Every time.

So I write.  

Something takes over and I read back what I have written, feeling as if it has generated a little magic.  My words; somehow with a twist of soul.  

Downstream with ease.  

The dream, this is the dream.

A whirlwind of practicalities and childhood programming interrupts my passions.  Imagine, as a child, growing up with no internet, jeez not even a mobile phone in sight.  A cordless phone was for the privileged few.  

Working online was something not even invented.

Being a writer meant getting a book deal from a publishing house (and they would be taking a huge chunk of your earnings).  No wonder this little voice of doubt hops in to throw me off my tracks.

Getting to it.  Working hard on the job that, yes, is the dream but still somehow is only explored mostly in the industry - working for others - towing the line and not questioning what the boss might say.

Being told you can only have time to yourself for 4 weeks of the year. After that, your life is theirs.

Don’t expect to put your healthy eating, exercise, taking care of your family first.  All of that comes after…

Dreams of taking my laptop to write (to some fireplace within the woods, looking out through windows filled with nature views) take a back seat.

Just as my pen and journal couldn’t consider visiting Bali for a couple of months, my Nikon will sit and gather dust rather than accompany my muse I write while touring California.  

Simplistic holidays in Mykonos creating videos for all to see on my vlog channel will all have to wait.

The dream might be on hold.

Synchronicity of my friends and my health shake me. 

No!

Take the dream off hold and listen!

“Louise you are a natural leader.”

“So many people find you inspiring.”

“You talk from the heart, raw and real.”

That’s the friends.

The health says nothing but does lots.  Crohns sees me unable to dash out of the door.  The make up does not cover my dark circles.  Fatigue puts me into bed.  Malabsorption contributes to mental health issues. 

Arthritis. Infection. Inflammation. Degenerative discs…the list is a long one.  

Refusing to give this focus, I continue with my stress filled life. Convincing myself it’s a buzz.

Convincing myself the dream life is plan B.  Only to be used in an emergency.  As this cannot possibly be the sensible option.

Today sees me back in hospital.  What looms next made me afraid.  From that fear the dream is once again born.  If life was shorter than I had hoped what would be my absolute must do?

Finish that book.  That IVF story I’m loving to write.  The one folks have been waiting to pre-order in, like, forever.

Spending time chatting to two very close friends tonight on Facebook messenger (while mis-typing through the drugs I have had to take) we figured out a few things.

Why do I doubt it when I have sold books already though my amazon page?

When over 9000 people visit my blog every month?

When 482,981 people have watched my Youtube channel? And it makes me money every month.

Why Stylehaul signed me up as a creator and pay me to create.

Collectively around 12,000 people follow me on social media channels…not a bad number and definitely a few good platforms.

Companies like Giorgio Armani, Musclefood, Abel and Cole sponsor me to experience their products. 

What am I questioning? 

Today, I fall in love with my Crohns.  Another curveball.  More clarity than ever.  Now there is no choice.  I must work from home.  I’m trying to be well. Hoping to be well.  Yet damage was done as young as I can remember and I can still live a healthy life and help myself as best I can.  However, I must refuse my gut the torture of those little  voices telling me to shy away from an amazing life that is clearly grabbing a hold of my chubby cheeks and telling me to do what I love. 

If you laugh at me that’s fine.  I have not followed my dream in case of that.  Yet my life deserves to be the best I can give it.   Those who don’t support my journey can stop following, reading, clicking.  Yet I am determined to live my best life and to give my best shot to working.  This work needs to respect my disease and fit in with my loving family, my wonderful life and the fabulous plans I have.

Who’s with me?

Don't stop believing

Hospital radio plays in my ears through the earphones.

An acoustic version of Don't stop believing.  

About what?  That life is good?  That we are all here to experience the joy of life.  Well I know that one and have been preaching to you guys for some years now. Although let's face it, we have our ups and downs, we are human beings.  It's what we do.

As another trolley and its squeaky wheels enters the ward right on time to take the patients blood tests I find myself feeling grateful.  Thankful for these amazing staff who not only have such tremendous patience but for the science of medicine and what it can do.  By medicine of course I mean health and the science that goes with it.  

Hospital radio produces a magazine. Immediately my entrepreneur thoughts see my advertising my nutritional services within there.  Gosh, like I don't have enough to do.  Just then I spot in the magazine that there is a need for radio presenters.  I should do that.  Entertain the patients.  I could help.  Then I remember my dream.  My dream of slowing down a little, enough to respect my health, this body, this vehicle for my spirit.  

The accompanying guitars ring beautifully in my ear.  I feel a love for this music once again. Something that has been slipping away.  Just like my thoughts.  Those positive thoughts seem to be escaping from me.  I know just as you do that the law of attraction needs working on. It's not like we forget, we just slip into the rhythm of life.  Get carried along in the negativity and the processes that often distract us from our meditation, our health kicks and our positive thinking.  

Being at the hospital so much just now, I remember just how far I have come in fixing my health - remembering the permanent underlying issues.  Yet able to ignore them if only we eat right, exercise right, sleep right.  The canteen shows a poor show of options for those with gut issues.  Pie and chips,  soup with wheat base,  sandwiches galore, if you are lucky a jacket potato, large enough to spike your blood sugar into space which of course gives us an insulin issue - then of course there is Mrs Crimbles, the promise of a gluten free coconut macaroon, seen often within the shelves.

My stomach has reminded me.  Take care.  

My eyes watering with allergies, my heart heavy with sadness.  

Thankfully, keeping within the now seems to be amazing for my mental health.  There is no time to think  - no time to be glum.  

Life is still good, still meant to be good.  

I won't stop believing.  Are you with me?

So the time has come to go public...

The time has come to go public...

After asking the question on my Facebook group A Lusher Life, I have listened to the responses with anxious happiness and decided that I need to stand proud of the fact that I am in fact a BLOGGER!
As well as all this, I am forever creating movies to share with the world on my Youtube Channels, both personal VLOGGING and my nutrition channel.

Why?

And why didn't I share this sooner?

Let's answer the last question first. I didn't share it for fear of unfriendly judgement. Yet I should know better at my age, with my life experience, as friends tell me to ignore those.
"You'll never please all of the people all of the time."
True.  If those people all knew my reason why, surely they would be kinder.  I'll tell you my Why in a sec.

Why have I chosen to share so much so publicly?  Great question.  It began back in 2009 with me hearing about the Law of Attraction, The Secret, Abraham Hicks and postivity.  To me, this was all new news. 
"Why doesn't everyone know life is meant to be amazing?" I asked myself.  
Turns out, lots of people Do know this stuff.  Yet, I still continue to remind others as I continue my learning around the subject too.

Bring this all forward to the here and now, today.

You may know, you may not, there is a list of health issues I often find a struggle.  Thinking about listing these as bullet points here may induce disbelief and possibly an air of sympathy which is definitely not what this post is about.  This post is about having these 'issues' and carrying on regardless.  So for me, a regular job is difficult, near on impossible.  Asking too much these days for employers to be sympathetic and patient when results are achieved or not.  
So in a passionate mindset of positivity, I am determined to honour the work ethic I have been raised to carry.  Despite illness, disease and hearing impairment (let's not go too far down the route of what's wrong although it's the biggest WHY) I want to continue to work. Should the health stuff become an issue and I can't hear anymore, leave the house or simply need to take to my bed randomly, I have this dream and notion that I can do all this from home.
Possible right? Many folks are doing this! Why not me?

Spending the past 7 years researching, learning and finding a craft which I love and adore, I am now ready.  Judgements be gone.  I'm ready to embrace life and work in the field I love (helping others) from home using both blogs like this and my love for creating films to add to Youtube.  My aim and my dream is to share my knowledge and a bit about life too as I pop health tips and even some meditation links as I find them.

Unsure if this makes any sense,  I ask you to support me.

My aim is to share these writings and videos as far and wide as I can.  In the hope they will help others as well as the hope that the tiny affiliate links I share help create an income from the blogs.  Should you find you wish to subscribe for more or share my links, please do. I would be eternally grateful.

Below, is a chance to leave comments.  Let me know what you would like to see here.  We can do some regular Q and A sessions too.  Ask away.  My door is open.

Much love, as always, 

Louise xoxo
Become a super fan https://www.patreon.com/louiseusher

Me. Opening up to you. 

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Warning! Sad video about health, Crohns and liver issues.

Please be warned this is a pretty low video.  Not very positive but it's all leading somewhere as I talk about Crohns disease, raised blood sugars and liver issues.

As I got this news about my health I was shocked and hence I stopped to think about making the video there and then.

I KNOW I can turn my health around with lifestyle changes and I WILL.  I would love your support!

This is what makes me want to be a nutritionist.  To help others as I know what it feels like!

https://youtu.be/iBVS64JgZXk

Much love

Louise xoxo