A week of loss

After having to take a bit of time away from social media I have returned with less of me than before. I am struggling to find words……these seem to have disappeared too.


Because this week has been by far the hardest hurdle I have met in the last 12 weeks. It’s not even a hurdle, it’s a stinking great Everest.

On 25th of August at about 5am the house phone rang. That is never good. After what felt like a lifetime of frustration with not being able to get up the stairs, Mumma L finally came down. We had just lost someone very close in a tragic accident. My Grandad.

Everything stopped.

My dear one in a million Grandad.

Somehow we made it through the day with my brother Chris and boyfriend Ash.

That evening I suffered horrific muscle spasms all over my body, including my jaw and tongue leaving me unable to speak. This still didn’t amount to the emotional pain I was in.

The ambulance took me straight to hospital and I was admitted. That night all alone plagued me with nightmares. In our hast to get into the ambulance Grace was left behind….. I really was alone.

Eventually the sun appeared with the consultants. Thankfully with my pain under control and very understanding consultant Mumma L was allowed to come and take me home.

The next week was a blur of emotions so it’s not surprising when it came to weigh in on Saturday that I had lost 1lb.

I need to keep going on this bumpy road to recovery because I know Grandad is behind me all the way. Since my struggle to maintain weight 2 years ago, I can’t remember a time when I saw him where he didn’t have something special for me to eat. And, as my dietary requirements became more and more restrictive, it only made him more determined to find tasty, organic treats that I could eat.

I remember last year taking him to Duxford to see all the war planes. I was having a flare and in a lot of pain so was confined to a wheelchair. My fit as a fiddle Grandad pushed me all day. Even when everyone was struggling to walk from one hanger to the next against the gale force winds, my Grandad pushed me undeterred. We went zooming off on our own to explore, whizzing up and down the slopes. We had the best day. A day I will treasure forever.


My beautiful friends have been incredible and bought me a white rose plant to nurture over the winter and plant outside when the spring comes in memory.

Thank you to everyone for all your support in reading my blogs. I had no idea that it would make me feel like I have a whole army behind me on this journey.

I know I promised I would remain humorous and a little crazy, but life is full of the unexpected. One thing Grandad has taught me (and was always saying) is that you just never know what is round the corner.

I can see him now, nodding his head with that laidback, reassuring smile of his………”Sometimes in life you just gotta get on with it as best you can.”


11 thoughts on “A week of loss

  1. Think of you all the time. And your family. I do not know anyone stronger than you Charlottle. Your an inspiration. You keep going through everything. I promise the sun will come out soon and this storm will pass. Lots of love stay strong. I never met your grandad but I know he’s looking down on you and your making him proud xxxxxx

    Liked by 1 person

  2. Jo

    So sorry to read this. Its hard, but I know that someone you love and who loves you never leaves you, they are always there and pop up in your thoughts to remind you of their love and how proud they are of you. You are one of the strongest people I know, keep battling on. Lots of love xxxx

    Liked by 1 person

  3. Gemma Andrea

    This struck a mighty chord with me. I lost my Nan before I was diagnosed with Addison’s, but the two things seem somehow linked to me. We were very close and I was with her the day she was diagnosed with pancreatic cancer. Two days later she was gone. It’s a very special relationship we can have with Grandparents. I feel for you *hugs*

    Liked by 1 person

  4. Alex

    You really make it seem really easy together with your presentation however I find this matter to be really one thing that I feel I would never understand. It kind of feels too complex and extremely large for me. I’m looking forward to your next submit, I’ll try to get the hold of it!

    Liked by 1 person

    1. To be honest I don’t fully understand the disease and my professor is quite honest in saying that even they don’t really understand it as it is just so rare! I just hope people with other rare diseases can relate and not feel so alone


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