The Good The Bad & The Ugly:

 

The Good Stuff

Life, Living, the everyday things that you just take for granted when you are feeling well. Life was always pretty damn good. A great family, good friends, a career I loved, a social life I lived for and could everyday be a Friday Night feeling.. I lived for good times!!

The Good The Bad & The Ugly

The Good Stuff

Many of you know my story, the story of hitting my 30s and thinking I had burnout of feeling like death daily and blaming my hectic life for how I felt. For those that don’t or wish for a little recap well here goes…

 

The Bad Stuff

A dirty glass, A German bar & an anaphylactic shock.. Boom Boom
January 2013 one of my favorite times on the work calendar heading to Cologne to meet with clients and new buyers. What was a fantastic evening out ended in well, a work colleague mortified making me take a cold shower and having to watch to make sure I didn’t die, wondering if i was taking the piss with the amount of alcohol consumed, is that rash an allergic reaction? and is your head really twice the size it was when we got in the room? oh man the room is spinning and well let’s sleep on it and see what tomorrow brings..

Yeah a German hospital and an Epi pen to boot!! No rhyme or Reason as to why I had the anaphylactic other than I drank gin – oh my god I’m allergic to alcohol. 8 years later and still not touched it.

From that day forward came the downward spiral, the spiral of fatigue. Fatigue so bad I was crippled from it, unable to shake off the feeling of being tired, of feeling achy of feeling like death each day.
I pushed and I pushed until June 2013 and boom, a Mini stroke whilst about to get on the M1 – result, a visit to A&E by ambulance and so the rollercoaster began.

I was too tired to try and fight anything anymore, nothing left in the tank to try, so my career came to an end.
Pretty much bed bound and that exhausted I couldn’t care what was going on in the outside world. I would spend 16-18 hours in bed sleeping and never feeling rested. Some days I’d need help to just get up and go to the bathroom my body was just saying no.

 

How the hell did this happen to a young healthy woman?

So so many questions with very few answers. Numerous trips to the doctors followed that year and long after, along with numerous trips to A&E.
I could tell people had also started to think I was depressed, maybe there is nothing wrong with her? the Doctor can’t find anything, A&E are not doing anything.
People who I thought were friends started to disappear and not bother texting anymore, that was a hard pill to swallow but hey through tough times you live and learn who is there for you.

2015 and a confirmed case of ME/ Chronic Fatigue Syndrome this took over a year to even be mentioned after all the diagnosis of Depression and take time out came bashing on the door more than once from the Doctors Surgery.
Yes a woman feeling tired & no mojo = Depressed, pack her off with anti depressants and a sick note.

 

What Came Next Was Hell

An appointment with Seacroft Hospital, The Newsam Centre. The Mental Health hospital and where the CFS/ME department fit’s in.
I do not say this lightly nor to disregard any mental health issues at all, I am all too aware the seriousness of mental wellbeing / mental health – Imagine walking in to a place that patients had all been sectioned, drugged up to the eyeballs wandering around almost zombielike, you have little left in your tank, your GP already thinks you are depressed and here is where you are sent to supposedly get better.

That was probably one of the scariest days of my life – would they keep me in? why am I here?  – the very little energy I have, I have to walk out now and take matters into my own hands.
The tears that day just wouldn’t stop. How could this be happening. I am not depressed I know my body.

I needed to take personal responsibility, I needed to find the root cause and get to the bottom of what was happening to me. Armed with my previous training as a Health Coach I took to the books I struggled to focus most of the times with the brain fog, often I had to listen to audio books for ease on healing your body
I researched and researched on Chronic Fatigue.
The diet changed, I was juicing, I was meditating, I was into crystals and essential Oils and popping whole food supplements like there was no tomorrow. I had to fight this corner to get myself well. My family & Close friends rallied around to help, they could see I was on a mission and soon I was starting to have good hours.. Yes hours not days but, I would take that over feeling like I normally did.

 

2018 Starting to turn a corner

The summer months I always felt better there was something about the heat on my body that made the aches disappear and made me feel alive – I was breathing let’s put it that way. I was doing a bit of work for the gym on the days I could and managing to go out for a few hours fresh air to catch up with friends.
Life was starting to feel good, although frustration often kicked in, I needed to remember how far I had come since 2013. Life would never be normal so I always had to stick to the routine I had put in place for myself – the good hours 11-3pm I was hopefully dressed by then and those hours were the energy hours.
I could finally start to look forward to things like a normal woman in her last year of her 30s!

 

2019 Whoop Whoop a Year of Celebration

My girlfriends my close knit circle are my school friends, my lifers, my tribe the woman I love to death.. I could not be anymore excited to start the year off with a bang and celebrating the Besties 40th.
You know the excitement of a party, the big build up of finding a new frock, getting the hair and makeup done, I was “Taxi” so picking up my tribe ready for a night of fun, not to mention pushing the boat out and planning on staying out past my 9pm bedtime curfew.. I knew I would suffer the next day / week with the fatigue and pain but man this was going to be worth it.

Oh you can see it now – MESSY!! The music was pumping back to the 90s reminiscing of how we could all bust some moves, sing so loudly and badly on karaoke and then BOOM! SH!T…..
What the hell, I was clammy, I was clutching my chest, My arm was going numb and I couldn’t get my breath. I managed to clamber off the dance floor and out for some fresh air and within minutes I felt normal again..
That was some weird feeling.

I managed to have an awesome 40th Year 2019, let’s just say summer was amaaaaaazzzzing. Croatia, Helmsley, Party after Party..
I felt me, I felt alive! I’d go as far as to say the best I’d felt in years.

Then came winter and the heart pain and breathlessness appeared again – OMG had years spent bed bound really made me this unfit?

 

Christmas Day 2019 Barnsley A&E

Boy do those folk in Barnsley know how to party.. I mean I only nipped in with a minor heart attack to find a full on vocal welcome in a&e a few dad’s dressed as Santa that had over indulged not sure if heart attack or heart burn.. But I have to say, that night changed everything and would go on to write my new chapter of my health journey.

The Good The Bad & The Ugly

The Bad Stuff

The Ugly

Ah, the ugly – the ugly wasn’t overly ugly to start with, I attended Barnsley Hospital for a follow up appointment to have a chat with the cardiology team and to start to run some testing on my heart. I was a little nervous but Mark made me feel at ease and even at some points just laughed and joked at me being here amongst all the nana’s for their angina check up’s. Yep here I was turned 40 and potentially did I have angina? I was classically showing all the symptoms with the heart pain, breathlessness..

January 2020 past and along came Feb – I was told I had an enlarged heart a murmur and a few other things going on so needed further checks and then possibly medication.

 

C = COVID

Covid – the C word of 2020 everything started to slow down as we where about to be hit with a lockdown.

Fast Forward to June and a full on MRI & bloods at the LGI and an amazing cardiologist at Barnsley Dr Tahir, what was about to come next was so unexpected.

The bloods picked up a few issues and the MRI had indicated I had had numerous silent heart attacks that had badly scarred the heart but also the blood flow was struggling.
I needed to have a specific blood test run as Dr Tahir suspected I had a rare disease that had never been picked up.

Man it was a long long wait, the hospital at Salford was using the labs for covid testing so normal bloods where on hold.. October 2020 and the confirmation came I had in-fact got a Rare Genetic disease.

THE LIFE CHANGING RESULT!

Relief hit me I had something wrong with me, I hadn’t made it all up for 8 years of how I felt – I was in fact Ill.

But then Realty hit me, what did this all mean? I was left feeling scared and left looking at Dr Google to see what this all meant.

My new chapter is about to begin a mix of Conventional Medicine and Functional Medicine my very own experiment of living a full life:

 

2021 The New Healing Journey

I share my story not for a pity party although I do love a party! Because,I feel I am in a blessed situation to be armed with health tools to have access to Health Coaches, Functional Med Practitioners my Own health Coaching background to look at different tests & alternative ways to support my body – I want others to know you may be banging your head against a brick wall, you may not feel heard, do not give up hope and that other modalities are also available to support you and help you alongside conventional medicine.

The blow I got dealt was shitty and comes with life altering and threatening issues but the body is an amazing vessel I now have to treat this vessel extra carefully and do all I can to support it.

“Your genetics load the gun. Your lifestyle pulls the trigger.”

Mehmet Oz

 

Claire xx

For those with Chronic Fatigue I highly recommend the Yorkshire fatigue Clinic they really did give me some valuable information and resources when I first started doing my research.

Big shoutout to Barnsley Hospital for being amazing too, for hearing me as a patient was one of the biggest things in my fight for help as a patient – to be heard!

#RAREDISEASEDAY2021