21 Jun 2019

Working with Chronic Illness


New Article Published

I have just published Working with Chronic Illness by wedding planner Beckie Melvin. She was diagnosed with M.E. and Fibromyalgia in 2017:

"As I sit writing this, my body is in pain. I've actually dictated the majority of this story because the pain in my joints is preventing me from typing much. It feels like I have bee stings or electric shocks running through most my joints, and even in my tongue and my eyes. Now admittedly, I've been off my feet for two weeks with Post-Exertional Malaise (a posh way of saying you worked too hard so now have some payback) but the zapping pains are still hard to handle! I'm dizzy and my brain is foggy, I'm struggling to find the right words – although looking back at how much I've written, maybe I'm not doing too badly? Above all, I'm exhausted. Bone-deep exhaustion – and I'm doing a good impression of a panda with the black rings around my eyes.

So how does this affect my day-to-day living, and my work? Well, it's a slow process now! Every day I wake up and it takes me around 30 to 45 minutes to get up, as my body is so stiff. Once I'm up, it's time for a quiet cup of tea with my feet up, then a warm shower (but only when there's someone in the house, just in case I have a fainting spell), then I dress in whatever clothes don't make my skin feel like it's being rubbed raw.

I spend a lot of my time writing to-do lists and notes to myself – my head is so fuzzy, and my memory is TERRIBLE! I have to pace myself, something that – even now, after four years – I still struggle with! I want to do everything, and book meetings, and answer emails and book more work… but it's not feasible. One hour of work then at least one hour of resting. I struggle with verbal communication – if I have to think on my feet, oh my goodness! Ahhh and ummm and errr… I used to be quite quick-witted and able to think fast, but these days I'm more of a slow processor of information.

I have a bit of a "boom or bust" approach and when I throw myself into work, the payback is awful. I can end up on bed rest for over a week if I'm not careful – something that I'm in the middle of now, as I had a busy week at work which knocked me flat.

The brain fog! Oh, the fog. You know when you've had a few too many late nights, and the world seems off kilter, and your words come out scrambled, or you can't find the words in the first place? That's my brain most of the time! If I've done a wedding show, or a wedding, then that's it. Three or four days (if not more) after and I'm literally speechless. I've lost my confidence and independence somewhat as a result. I'm not confident taking the train into London for example: I can't understand the timetables very easily, and I don't like people shoving me about when I'm walking slowly.

All of this combined has slowed me down in my business. I want to take it further, reach more couples, help more venues… but my energy levels just won't allow it. I never thought I'd have to put a cap on my limits, I really envisaged myself running this amazing, well-known, well-respected national (maybe even international) wedding company, with employees and everything. But for now, I just don't have the health."

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