If I’m Going to Die I’m Going To Live

The tough stuff

 

The letter arrived with the diagnosis and my appointment to head to Salford in January 2021 to meet with the specialist team… It felt like a long wait between receiving the letter in the December to getting through the non so festive month.

I should know better, but yep, I went down the rabbit hole and engulfed myself in research and the common thing that kept cropping up is when will I die?
Ok, so this disease obviously had something to do with death as it was a really common occurrence, fear didn’t kick in, it’s something that is often spoke of in our house of “that it happens to us all” but maybe that was just my blasé way of dealing with it..

There was an awful lot of information on males with the disease and very little on females, common age theme – 50″s!!
Now ask me 20 years ago 50 was old, ask me now and I’m like whoa this is the prime of life im not far off it, ok well 8 years but jeez 8 years is not a long time..

 

THE BIG APPOINTMENT

The major event happened, “THE BIG APPOINTMENT” because of Covid I had to attend on my own and expect to be in for a good few hours, more tests await and I will meet with a specialist to talk through everything.

Holy Moly I walked in to a full panelist it was like “Britain’s Got Talent” 4 judges all staring at me with that smile of “I’m sorry” to be fair I couldn’t fault the team one bit I had an audience to talk through everything I had been through for the last 8/9 years and to piece everything together. I couldn’t have felt any more looked after.
I now have a Cardiologist, a Neurologist, a Metabolic Dr & Nurse Practitioner all on first name terms that will be my dedicated team..

 

Do You Have Any Questions For Us?

Yes we got through the meeting with information over load, I wasn’t even sure I had taken everything in, but nurse Janet assured me she would put a pack together and type up all we had discussed so i could go over it and here is an email address and phone line if you need to speak to someone to ask away any questions.
For now though is there anything you want to ask?

It must have been on the forefront of my mind as yes it came straight out “When Will I die?”  a question they couldn’t give an answer to, which I totally understand so then came the counseling number if I needed to talk to anyone.

It was an emotional day, I’m not going to lie, I came away exhausted knowing I had all this to relay to my family and friends. How do you deliver this, when you can’t see people face to face, you just want a great big hug. The tears and snot flowed for the journey back down the m62..

research research research

 

 

Grab Life By The Balls

“You either get bitter or you get better, You either take what has been dealt to you and allow it to make you a better person, or you allow it tear you down.
The choice does not belong to fate, it belongs to you”

 

The Treatment Plan

I wallowed for a day or 2 in self pity, then I spoke up of my fears, my concerns, and how I wanted to change the way I was going to Live, I will not be beaten, I will ensure I do all I can to help myself and I will take the support of others..

I opened up to my colleagues at UKHCA ,I knew I needed to take a functional approach as well as a conventional approach and so my new chapter of health is about to begin!

My treatment plan from Salford was set in place, Fortnightly Intravenous Drip for life, first starting in hospital to be monitored, then a home care team put in place.

A functional approach to nutrition & Supplements, healing from within, getting the best out of my health to hopefully live a fuller richer life of having more energy, easing the pain, the brain fog and regaining that zest for life!
Working with a practitioner in America that came highly recommended to me and alongside Salford and the ERT therapy, plus my own health coaching of myself I have a 3 prong approach. 

 

The Sun is Shining

As I sit here in the sunshine, birds tweeting, door flung open, Yes it’s only 4 degrees but each day is a blessing and I am taking all the wins I can and all the positives – I am totally going to have shit days, those melt down messy days, I wouldn’t be human if I didn’t!

I know one thing though – I’m Going To Live. I am going to to do all I can to change the narrative, I wasn’t born a Leo for nothing! Enthusiastic, Flamboyant, Passionate,Theatrical, Dramatic, Pioneer  🙂

“When we deny the story, it defines us, When we own the story we can write a brave new ending”

Brene Brown

I better dig back out that bucket list I wrote at 40 that went wayside – it’s time to get living!!

Claire xx