Working with Chronic Illness
In 2012 I was made redundant from my day job at Tesco headquarters. While there, I'd been a senior administrator and while I enjoyed it, I'd never felt fulfilled. By chance, the previous spring I started my own events company – teaching people UK wide how to run crafters in their local area. I had reps all over the country, and by the time my redundancy happened I was too busy for two jobs, so took the chance to go full-time self-employed. I was ecstatic! However, dark times were ahead. In the space of three months, I'd lost my job, started my self-employment journey, lost my beloved grandfather to cancer (a disgusting painful experience for all around him), seen my nan stolen by Alzheimer’s, and moved house. It was all a shock to the system, and coupled with having a young son, I decided to escape my grief by working; I literally couldn't see straight. By the narrowest margin, I avoided a full-blown breakdown, but I was seriously stressed and exhausted.
Fast forward to April 2015, and my business was in a different place. By now I was running wedding shows with a friend across three counties, putting together 20 to 30 suppliers per show, at around 15 to 20 shows a year. Basically, every other weekend I was getting stressed wondering if today would be the day that no visitors came out and I got a rollicking from suppliers (luckily that only happened once and was through no fault of my own!).
Anyway, late April 2015 I had a particularly difficult time in the lead up to this wedding show. For some reason it was very hard to get a decent number of supplies on board and I spent a ridiculous amount of time searching my database, making calls and emails, and coercing people into attending. By the day of the show I was well and truly worn out. The whole day, I was sitting by the door of the marquee, and it was a chilly day. By the end, I was frozen and the following week I couldn't get warm; no matter how many hot showers I had, or warm clothes I put on, I was constantly shivering.
The next weekend was my 35th birthday and I had plans of visiting a local garden show with my husband, son and parents. We had a lovely wander around for a few hours and I felt okay-ish. A bit sick, still cold, but nothing of note. We got back to the cars and that's when it happened. Everything went black and I passed out. Apparently, I went an interesting white-green colour too, which for someone with my pale complexion says something! My family got me in the car and my husband drove us home. I remember feeling really sick and dizzy the whole way back (a 20 to 30-minute journey). When we got home, I went straight to bed and for the next two weeks, I slept constantly. Any time I was up and about, I felt dizzy, confused and exhausted, frequently having blackouts and generally feeling unwell.
By the end of the year, I was no better – in fact, more symptoms had surfaced. I now had numb hands and feet, a constant tingling like pins and needles down my left side, and weeks on end of cluster headaches and migraines. Several trips to the GP proved fruitless, with the exception of strong painkillers to tackle the headaches and migraines; they couldn't work out why I was so exhausted and off balance. Bear in mind, while all this was going on, I was still running my business and working every other weekend. It was a very worrying time for everyone!
My GP finally agreed to refer me to hospital, to have CT scans to see if my symptoms were caused by MS. In early 2016 I had my scan and it was confirmed – I didn't have MS, which was both a relief and a frustration! I then had further blood tests and two or three MRI scans, all resulting in nothing particularly concerning. I kept on visiting the doctor, and by the end of 2016 (yes, a full year and a half after I first got sick) I got an appointment to see the Neurology consultant at the hospital.
We met in February 2017 and on our first appointment, she read through all my results and noted my symptoms, ran some small tests of her own and said, "It's Fibromyalgia with CFS (Chronic Fatigue Syndrome) aka M.E.” FINALLY, after two years of being sick and confused, I had a diagnosis, meaning I could now do some research, gather my support network and find a way to manage my ever-increasing symptoms.
The first lot of medication she prescribed was strong painkillers. The problem with Fibro is that it's a neurological condition, meaning it's your nerves causing the trouble, rather than your muscles or joints. The painkillers didn't do much for the pain or weird sensations, no matter how high the dosage was that the doctor put me on. After a year of increasing the numbers, I was a zombie. I sounded drunk, I was a bit of a liability as my grasp on reality was very squiffy, so once again, I headed to the doctor's surgery, where I was prescribed anti-epileptic medication. These worked to a certain extent; however, unbeknown to me they were causing problems with my liver. In December 2018 I ended up in horrendous pain at A&E where tests showed my liver function to be off and I knew I had to stop the drugs. They also made me pile on weight, so now I'm even curvier than before, although maybe that's not such a bad thing! I've now swapped to another anti-epileptic medication, back on the lowest dosage, so we'll try again at getting everything under control.
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.
Obviously, my family life has been affected too. My husband has to look after me more often than not, coming home from work early because I feel so poorly, covering school runs, running me back and forth to hospital and the like. And our free time excursions are now very few and far between. I work up to them by resting as much as I can, trying to bank the energy I need to go on a day out. They're worth it, every time I do get to go out, but it's a shame so much prep work has to go in. My son is so understanding: at nine and a half, he's a HUGE help, making me drinks and helping me stand up if I'm a bit wobbly, tucking me into bed when I can't be up any more. My gorgeous Christmas Day miracle boy.
The future: looking forward, I'm certain I'll find medication that can help. One day, research will pinpoint what causes these conditions: as a result, all of us who suffer will find ways to help us regain who we used to be. Before we walked with a walking stick or crutches (although mine are a lovely teal colour; I couldn't handle boring grey!), before the stumbling of words, before the exhaustion and fainting… we will come back.
Until then, I'm eternally grateful to my family and friends who help me every single day and who remind me that I'm still me. Under the painful joints, the foggy head, the exhaustion, there's a driven girl who wants to create amazing weddings and make a difference in the world. She just might take a while to get there.
You might also like to read Working from Home with Myalgic Encephalomyelitis by Frances Pallett.
Beckie Melvin is a qualified, professional wedding planner based in Bedfordshire, and covering surrounding counties.
Please see beckiemelvinevents.co.uk for further information on services provided.