fibromyalgia · health

The Trials and Tribulations of Being Diagnosed With an Incurable Illness

Up until 5th April 2017, I was a distinctly average 23 year old. Average height, average weight, slightly below average shoe size and generally nothing to write home about. I was two months into the Salon Manager promotion that I’d been pursuing for the past two years, was working full time as a dog groomer and absolutely loving it, driving everywhere from Farnham to Eastleigh and, broadly speaking, pretty happy.

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This picture was taken about a week before my diagnosis

Then I got bitten by a radioactive spider and it’s all been downhill from there.

 

On that note, I should probably say that anything and everything written here is entirely my experience. I have absolutely no medical knowledge whatsoever, and I can’t speak for others.  There, that’s a disclaimer.

 

I’d been suffering with a numb ache in my left wrist on and off for a good three or four years, but since I started grooming it had been getting progressively worse and bothering me a lot more often than usual. A doctor I’d seen told me it was RSI (repetitive strain injury) and it would go away on it’s own – which would make sense given the physical nature of my job. I’d tried numerous different wrist supports (I have a drawer dedicated to stretchy bandage tubes in varying sizes) but none of them seemed to be working – so I just ignored it and tried to get on with grooming as best I could. In September time, the pain began to spread up my arm to my elbow, then to my shoulder – and in the months between October to March, it made it’s way across my entire body, attacking every bone and every joint from my neck to my toes.

 

Eventually I had to admit that something was very wrong. It was becoming physically difficult to groom, and I was terrified I was accidentally going to cut a dog because of the pain and numbness in my fingers. I went back to a (different) doctor, promptly burst into tears before she’d even asked me what the problem was, and essentially begged her to tell me what was wrong with me. She was very nice, and prescribed me with some painkillers, assured me that she would get me seen by a GP who was particularly interested in joint issues, and booked me in for a blood test.

 

In the weeks before my diagnosis, I couldn’t stand for any longer than about five minutes at a time, and driving was hard because my legs felt so weak that I couldn’t hold my foot on the accelerator. Everything was physically and mentally exhausting – and I don’t mean “tiring”, I mean exhausting. Simple tasks like drying my hair or brushing my teeth would leave my arms and legs feeling heavy and my heart racing, as if gravity had suddenly increased and oxygen had decreased. The motion of using a brush to blend my foundation would leave me feeling dizzy, and my hands were shaking so much that eyeliner and mascara was nearly impossible. I realise that these don’t sound like big problems, but it got to a point where even typing on my phone or laptop would cause the joints in the very tips of my fingers to ache. I had to go downstairs sideways, and I had to admit defeat and sign off from work until I improved. Not only was it stressful physically, but going from being moderately active (although a little unfit), to unable to walk five metres without sitting down halfway was extremely hard to deal with emotionally. It was like being a rabbit in a hutch that’s too small. Everything became a military operation – I couldn’t just “pop” to Sainsbury’s or into town, because it would take me so long to walk from A to B, and then I would have to spend the rest of the day and most of the next day recovering because it used up every single tiny bit of energy that I had. I can’t even begin to explain to you how it feels to have your whole body throbbing with pain because you stirred a cup of tea too quickly, and I spent a lot of time wondering what awful thing I could possibly have done to deserve this.

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The exhaustion was debilitating. I’d either sleep too much or not at all – but no matter how long I was asleep for, I would always wake up feeling exactly the same as I did before. I can think of so many occasions where I’d get home from work at six o’ clock in the evening, fall asleep within the hour and wake up the following morning, often not even waking up to eat – but even though these occasions meant I was getting anywhere between 12 and 16 hours of sleep a day, but within minutes of waking up, I already felt like I’d pulled an all nighter. I’ve thought for quite a few years that something was up with regards to tiredness, because I always seemed to wear out before others did, but I’d always just put it down to being unfit. I did go to the gym for a couple of months in an attempt to get in shape – but ironically I stopped going when the pain in my wrist started to worsen because I didn’t want to damage it further.

 

Upon my return to the doctor, he told me that my blood test had come back completely normal. In a way, this was good news, because it meant that we could rule out conditions such as Hypothyroidism and Rheumatoid Arthritis – but it also confirmed the one thing I had been desperately hoping I didn’t. He diagnosed me with Fibromyalgia – which doesn’t show up on any laboratory tests or MRI scans – and gave me some amitriptyline, an anti-depressant that is commonly used to treat conditions like fibro, as well as insomnia. It’s incurable, and it’s something I’m going to have to learn how to manage and maintain for the rest of my natural life. It’s not degenerative or fatal, but it’s not going to get better.

 

Receiving a diagnosis has been an extremely difficult thing to get my head around. On the one hand, I finally found answers to certain aspects of my health that have been troubling me for years – for example, my constant tiredness, chronically dodgy sleeping pattern and terrible memory. Hindsight is 20/20, and looking back now it’s entirely feasible that I’ve had this condition for at leave five years, potentially more. I went to see a doctor on more than one occasion as a child for “growth related” pain in my knees and hips, so perhaps these were early warning signs.

 

On the other hand, it’s caused me to fall out of love with my job. It’s made my already already erratic thoughts even more difficult to fathom. It causes me to forget things mid sentence and lose my train of thought entirely. It’s made me put so much weight on and, as much as I hate to admit it, it’s completely destroyed my confidence, both in terms of how I feel about my body physically and how I appear to other people because I don’t look sick. During my time off work, I was terrified that someone would see me out and about and think that I was skiving or worse, “faking it”. I was so worried that people would question the legitimacy of how I was feeling, that to begin with it was extremely hard to build the courage to leave the house, or to socialise with people as I normally would. I’d read horror stories where people had been screamed at for parking in disabled bays (with or without a blue badge) because there was no immediate physical problem with them – and I was so convinced that it would happen to me in one way or another. I had to learn that I had to prioritise living and functioning normally, and that returning to work would follow that. Even if I’d spent the entire day feeling relatively okay, if I couldn’t survive sitting in a chair at a friend’s house for three hours one evening, how was I going to cope with spending eight hours a day standing behind a table, trying to get an overweight spaniel to stand up? Just because I was well enough to pop into town for an hour to buy eyeliner and shampoo didn’t mean that I was ready to bath a Newfoundland. Then there was the aftermath – the part that people didn’t see. That when I got home from that hour in town, shampoo in hand, I’d have no energy left to even get in the shower and use it, and I’d have to sleep for three hours to get anywhere close. When I stumble over words and forget what I’m talking about, I can’t explain that it’s not because I’m stupid or inarticulate, it’s because I have “brain fog” as the result of an illness. It’s going to shadow every memory I make from here on in. Everything from birthday parties and nights out, right up to buying my first home, getting married and having children. Even my relationship with Clark, because I never got to experience it before I got ill, and he never got to experience the person I was before. It’s been really hard to process that one day I woke up with an illness that I would never recover from.

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I don’t know why it suddenly got so bad so quickly, as these things are often triggered by some kind of trauma such as a serious illness or injury, or extreme emotional stress – but (luckily) I have yet to experience either. There is no known cause of fibromyalgia in general, but several theories suggest that it’s things such as a chemical imbalance – abnormally low levels of serotonin, noradrenaline and dopamine in the brain, that disrupt the pain signals sent by the nerves. There’s also research that suggests it could be genetic, and a recent study showed that it could be caused by dysfunctional mitochondria which, as we all know, is the power plant of the cell. It could also be linked to a mismanaged blood flow in the hands and feet, due to a higher concentration of a certain type of nerve fibre that regulates blood flow through specialised shunts in blood vessels found solely in these areas. I don’t really understand the science behind why it hurts – although the vein thing was particularly interesting to me, because that is a particularly good explanation of how it feels – just imagine that your veins ache and you’ve pretty much got it.

 

Aside from the constant pain and fatigue, fibromyalgia has a shed load of other symptoms. As if being knackered and achy all the time wasn’t enough, I also suffer from something not dissimilar to Restless Leg Syndrome, which manifests itself in uncontrollable twitching in my legs, usually as I’m about to fall asleep. Allodynia, which is “skin pain”, and an extreme sensitivity to touch (it feels a lot like a minor sunburn when touched and is more annoying than anything); sensitivity to light, temperature and noise. Headaches. Bloating. Nausea. Difficulty swallowing and, my personal favourite, Irritable Bowel Syndrome (IBS). Some of you may also remember that I went to A&E due to chest pains around a year and a half ago, which turned out to be something called “costochrondritis”, and is an agonising chest pain that made me genuinely think I was having a heart attack. Twice. NOPE, not a heart attack – just a really fun symptom of Fibro.

 

Those are just the physical symptoms! As if dealing with all of that isn’t enough of a shit storm, I also get the pleasure of the emotional and/or mental symptoms which include, but are not limited to: dizziness, disorientation and crap balance; “brain fog” – problems with memory, concentration and cognition; anxiety, mood swings, tendency to cry easily (which I didn’t even know was a symptom until I started writing this, but it makes SO much sense to me that it is) and unaccountable irritability (which will probably make a lot of sense to Clark). Is that it? Well, that’s it for the symptoms – but then there’s side effects too!

 

To begin with, I was put on a drug called amitriptyline, which is used to relieve long term pain of conditions such as fibromyalgia and arthritis. It also relaxes muscles and improves sleep, as well as (supposedly) helping with anxiety and depression. I started out with 10mg, and the option to increase to 20mg after a week and 30mg after another week if I needed to. The first night I took it, I was out like a light and woke up the next morning feeling groggy as heck, with no idea what was going on. I know it’s cliche, but it felt as though someone had filled my brain with wool. After a couple of days, the wooly feeling subsided – but so did the pain relief. I upped it to 20mg and again, felt like an absolute wooly mammoth for a couple of days. I still felt like it wasn’t quite cutting it, so after a week I took 30mg. To cut a long story short, I continued upping the amount (under the advice of my doctor of course) and I am now on 75mg a day. I also recently began taking Tramadol as a painkiller when I need it – which, I discovered, is pretty heavy stuff if you’re not used to it. I made the mistake of taking two straight away. It definitely meant I didn’t feel pain – but I also couldn’t feel my face. Then I was very, very sick. The side effects have mostly worn off – although they’ve made me gain a stone and a half at least (to be honest I don’t think I want to know) and I constantly have a dry mouth – but they’re doing wonders considering how bad I felt before, and it’s good to have a glimmer of hope that the right combination of drugs and dosages could mean that I live normally for as long as possible.

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I’ve also been taking CBD Oil capsules, derived from the stalk and seed of the hemp plant and mixed with coconut oil. To those with fibromyalgia (or similar conditions) who haven’t tried it – give it a go. It can be a little pricey – I think I pay about £27 for 50 capsules of 100mg > 25%, and I’ve noticed the world of difference. It gives me horrendous heartburn (but to be honest, most things do) but aside from that, it’s been borderline miraculous and I highly recommend it. You can get it in oil form, capsule form and I believe vapour form too, if you’re that way inclined. I get mine from here, if anyone fancies checking it out.

 

I’m sorry that this post hasn’t been nearly as lighthearted as others. It’s been quite a difficult few months coming to terms with all that’s happened, and as you have probably gathered by the length of this post, there is an awful lot of ground to cover. While I want to provide entertainment for you, my lovely readers, I don’t want to trivialise the effects of a long term illness. I’ve done endless research in these last few months to try and come to terms with my diagnosis, and if there’s one thing I’ve learnt, it’s don’t ignore the messages your body is sending you. If you think there’s something wrong, get it checked, and push until you have answers.

 

If there has been one good thing to come out of this whole experience, it’s that I’ve realised how lucky I am. I was lucky to be diagnosed as quickly as I was – my first appointment was on March 21st, and I was diagnosed on April 5th – that’s fifteen days. Some people take months or years before they find out what’s wrong, and longer still to find medication that works for them. I’m lucky that I’ve had such an understanding work environment – my manager and colleagues at Barkers who bent over backwards to accommodate me when I was still working there, and further still when I had to take time off, despite being so short staffed and up to their eyeballs with appointments. My area manager, who two months previous had looked me in the eyes as I told him “don’t worry, I’m not going to get pregnant or go off sick”, and then promptly took three months off. The amazing teams from Andover, Farnham, Farnborough and more who spared us their stylists to come and cover. The amazing ladies in my new salon who have looked after me and made sure that my stubborn ass doesn’t overdo it, and graciously helped me with dogs when I’ve been struggling. I feel incredibly guilty because I know I’ve probably caused a domino effect across a few salons – but not once has anybody complained and nobody has fired me yet. I’ve had wonderful supportive clients too, and I’ve genuinely never been so happy that I work with dogs. There is nothing that a wagging tail and a wet nose can’t fix.

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Alfie, quite possibly my favourite ever customer. Angel of a dog with the kindest owner.

And Clark. Wonderful Clark, who waited so long for me to agree to go on a date with him, only to be presented with a hobbling gremlin instead of an Instagram filter. He didn’t run for the hills when I told him what was wrong with me on our first date, a few day after my diagnosis.  He supported me from literally the very beginning – of both my illness and our relationship, and has held my hand every day since. He stuck with me despite the inevitable limitations that my condition will place upon our relationship – not just in the here and now, but our future as well. He is endlessly patient and understanding, and just five minutes in his company makes the bad days brighter. That makes me the luckiest person of all.

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So what’s next for me? Well, I’m back, as Stylist in Winchester on a part time basis until my body gets used to working full time again. I’m taking it slow and building back up to it – so far I’ve gone from 20 hours to 30 hours, then back down again, so I wouldn’t exactly call it progress. Of course I do still enjoy grooming, but I don’t know how possible it’s going to be for me in the long term, so I’m keeping my options open and I’m applying to study Stage and Production Management at Winchester University in September. I’m trying to view it as a new beginning, not an unhappy ending.

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Plot twist: I cut off all my hair and dyed it orange

If you have made it to the bottom of this absolutely gargantuan post, I sincerely thank you. You probably deserve a medal for managing to read nearly 3,000 words worth of brain crumbs. I was going to end with something like “if anyone has any questions then do feel free to approach me and ask them, because of course I’m all up for raising awareness for various chronic health conditions”, but I feel like that sounds a bit too much like the end of an interview, so instead I put it in quotation marks and continued to justify myself. Does this count as a fourth wall break? Am I meta yet?

 

Also, on behalf of the spider community, I am duty bound to inform you that there is no correlation between spiders and fibromyalgia.

 

Thanks for reading folks, and I’ll see you on the flip side.

 

Peace out (stop)

 

Morgan

 

xoxoxox

 

6 thoughts on “The Trials and Tribulations of Being Diagnosed With an Incurable Illness

  1. Wow, you really have been put through the ringer. I admire you willingness to still continue working even with your pain. I can’t even imagine what you have gone through and what you are still going through. Prayers for you ❤️

  2. Thank you for writing this! It’s brilliantly written and even humorous for such a serious subject. My mum was diagnosed with fibromyalgia early last year and suffers so much. This year I’ve started experiencing IBS/fatigue/various but after reading that it could be genetic I think I might go to the doctors to get checked out myself, actually. I’m going to forward it to my mumma right now! Keep fighting princess! X

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