Everything changed for me after 2012. I would have described myself as a healthy, active woman who loved to socialise and travel. That summer, I climbed Ben Lomond, cycled from Glasgow to Edinburgh, and completed Tough Mudder® all to raise funds for charities. Throughout my twenties, I had worked in various jobs and was fortunate enough to have lived in several countries. I had career and life plans and they were big!

When I turned thirty, I developed fibromyalgia which causes pain throughout my body. I was in the middle of a gap year after quitting a job I hated and had so many plans for my future. When my health began to change, it impacted every aspect of my life. Suddenly, it felt like I'd lost my entire identity, career, social life, friends, and my confidence and strength.

For the next few years, I was dealing with misdiagnosis, trial and error with medication, vitamin deficiencies, low energy, mood swings, and so many symptoms and side effects. Well-meaning folks suggested I quit working altogether and go on benefits. Instead, I launched a business and I’m now a full-time book editor and published author. I’ll have six books published by autumn and one of them is aimed at people just like me with invisible conditions who still want to work and feel they can contribute to society.

Family, friends, and doctors have often told me I have a really positive attitude even before I became ill. So, unless I choose to tell someone, no one ever guesses that I have this invisible health condition – which Lady Gaga also has – and it’s a “medically determinable impairment” which affects every area of my life.

The truth is, I was scared to show the real me, the hardships, and the behind-the-scenes stuff but I’ve realised that it’s healthier to be honest and share. Nowadays, I try to share the good and the bad when it’s appropriate and I feel comfortable doing so. It hasn’t been easy and I’ve had setbacks and other difficulties in my life. In the last two years, I lost my dad to cancer, was in a car accident, found a lump in my breast which thankfully wasn’t anything scary, and more recently, my mother took ill and had to go through surgery.
I’m a contributor on Medium.com where I’ve just started writing about some of these struggles - writing is my therapy! I recently wrote about dealing with loss and grief on there and shared how it felt.

I wouldn't recognise myself now if I saw me a few years ago, but I wouldn't go back to the girl I used to be. Even having gone through everything, I know I'm a fighter and feeling more confident about the future than ever. While my initial career change was out of necessity because of my health, now I have purpose.

I now work with clients who've lived through trauma, mental health issues, life-altering health changes, grief, and also losses in business and personal life. We meet or arrange a call to talk. Then I help them break through emotional walls to be able to publish a book and move forward. My aim is to empower people to write their stories!

Words are so important. Even in the way I speak to and about myself. I mentioned earlier that my health changed, but I used to say it declined. I used the word can’t a LOT in the beginning, as in ‘I can’t mountain climb, go boxing, or party in high heels anymore’. Instead, I look forward to the new hobbies I’ve discovered and my incredible friends I’ve made through these new interests. I once thought my career was over but now, I know it was simply redirected. The silver lining is that if I hadn’t developed a health condition I once found devastating, I would probably be working in a job I hated. My body changed and my mindset changed because of that but now I see it was for the better and I’m just chasing different dreams now.

I had to figure out who I am all over again. Taking up new hobbies like salsa dancing helped me feel like my body was capable again, I also spent two-hundred hours as a volunteer Teen Mentor which made me feel needed, and I made new friends who completely support me in my health issues and uplift me in every area of my life.

I’m aware of my health all the time but it’s no longer an overwhelming shadow. I’ve got a pretty intensive self-care routine which I developed over the last few years. I have a box in my desk drawer with a mixture of sensible and lovely things like ibuprofen gel, my wrist straps, photos and motivational quotes gifted to me. There’s another one under my bed with the same things and also magnesium spray, pillow spray, face masks, epsom salts, bubble bath, a sleep mask, etc. Sometimes I postpone plans and pace myself, or switch off my WiFi and read a book, or put on my favourite dress and red lipstick!

I’ve also thought about my mental health too. As I was finding self-employment quite isolating, I set up a group of women in business and we meet one day a week to work together, brainstorm, and have lunch. The group has now been running for six months and I've had so many share with me that it's the highlight of their week. All of this combined (and lots of other things) have helped me lead a more ‘normal’ life.

At the start of this year, I created a 2019 vision board with twenty-one goals for this year. One of them is to get to the top of a mountain again after six years of telling myself I can’t. I’m now saying Yes, I can. I even did a shark swim last August which was the one-year anniversary of losing my dad. I’m focusing on turning negative into positive and always looking for the silver lining! I feel strong again but it's not just a physical thing, I have strength for whatever is ahead!

All artwork copyright of Brian Tyrrell @dungeonsonadime 

Thank you to Julie for inviting me to share this story about my life (so far) with chronic illness.

I’ve been chronically ill all my life, with a diagnosis only relieving me of the ‘hypochondriac’ label a few years ago. It was not for want of caring – my mum did take me to the Drs when I complained about painful legs as a child (tests showed it was not juvenile arthritis), and when I blacked out as a teenager (tests showed it was not epilepsy), and when I had unexplained fevers. She’d pick me up from school when I was crying about painful ears, and she took me to casualty when I broke my arm. But when test results found there was nothing wrong, over the years life just went on. I was a bit sickly, accident-prone, broke bones, turned my ankle over, had sore throats and earache, and I fainted, but I wasn’t always at the Drs. I’d complain of an issue, mum would take me, they would investigate and find no cause, so I wouldn’t mention it again. How did I know everyone didn’t feel the same way? Things were explained as growing pains, clumsiness, and as being ‘normal for a teenage girl’. I know now that these are familiar tales - there will be plenty of people nodding along!

When I was 16 my dad died, and I got glandular fever. I went to the GP feeling terrible, with significant weight loss, and was told I was depressed. It took months for anybody to test my blood to find that I had a virus and treat it. This ‘depression’ label stuck, I think, and forever more blinded my GPs.

It took a while, but I eventually recovered from the long-untreated glandular fever, and again life went on. I had an inkling I wasn’t quite like everyone else - I couldn’t keep up when I went bike riding with friends, I seemed to hurt myself a lot (Sarah’s at A&E again!), I often had some limb or other strapped up. But I was energetic, I never stood still, I loved to dance, I had ambition, and I was doing well. I moved in with my first boyfriend, we got married, we worked hard and saved up, bought a house (I found out I was a dab hand at DIY), and eventually we had a beautiful son. Nobody would think for a moment that I was carrying around a hidden illness, trying not to complain about aches and pains.

After my son was born I snapped back into my size 8s, took him on long walks in his pushchair and felt as healthy as I had ever been, now in my mid-30s. I wasn’t bothered by the night-time feeds – he was a good baby and waking up to feed him was a complete pleasure. I loved being a mum, and looking back, I felt quite well – and happy.

Sadly, our long relationship broke down and life turned on its head. Soon afterwards, I started to become unwell again, with constant strep throat, fevers, and exhaustion like I had never known. I didn’t know that the Drs had decided I had post-natal depression (I saw it on my notes years later and refute this wholeheartedly) and while I was returning to my GP trying to explain how unwell I felt, they were so certain I was just sad that I was given antidepressants and asked to complete suicide-risk surveys. The fainting was ‘panic attacks’, they said. But after my 11th bout of strep throat in a year, they decided to take my tonsils out.

I’ll never know whether it was the recurrent strep, or the year of taking antibiotics, or if it was the falls that put me in plaster, or the contrast MRI I was given when a couple of breaks didn’t heal well, or the anaesthetic for the tonsillectomy, or the stress and upset of starting life all over again after my marriage broke down, but the decline in my health that year was significant. I went from having niggling symptoms to being really quite unwell. I was passing out so often that I was eventually sent for tests, having had to surrender my driving licence, and was diagnosed with Postural Tachycardia Syndrome (POTS) – an explanation which came as a relief, rather than a worry, but came with no treatment.

I tried to settle down with that diagnosis, but after a few more years I was sure that there was something else going on – POTs just didn’t seem to explain everything. I was getting nowhere with the GP who had decided I was just sad, so I saw a private Rheumatologist who diagnosed Fibromyalgia. These two diagnoses combined were enough to give me some understanding – that following the perfect storm some years before, life had changed, and I had to change with it.

Some years later, struggling to live anywhere near a normal life, I found myself in front of a new GP, who with fresh eyes came up with a new theory. I was referred to a specialist who diagnosed Ehlers-Danlos Syndrome. It was also discovered that I had a small ADS (hole in the heart).

Finally, now in my mid-40s, I had the truth. That year of sickness had triggered the hidden genetic illness to reveal itself in its newer, more aggressive form.

So, to today. What IS it like to live with chronic illness? You know what – it’s OK. It’s still a life! I’ve had the relief of a diagnosis for a few years now so I know what I am dealing with. There’s not a whole lot you can do about it – I have medication for the POTs now, but other than that there is no cure. I take pain relief, I take things to help with the common comorbidities (digestion issues, deficiencies, anaemia, allergies etc). But I know now that my pain and fatigue are real.

I work part time, term time only in a lovely little job. I work 8:30am until 3pm three days a week, and by 3:45pm I am back in bed. My alarm wakes me at 5:30pm when I get up and make us food - something that I can just pop in the oven with a timer on. On the two days a week that I don’t work, while my son is at school, I go back to bed for the day. My week follows a pacing plan which just about works – it’s a struggle and fatigue is crippling, and pain is debilitating, but I’m still here. I see a physio for back, hip and shoulder pain thanks to subluxating joints, but there isn’t much they can do. I use braces to steady whichever joints are causing the most bother at any particular time.

Not many people at work know – I prefer it that way – so I can just be me, and not sickly Sarah…

I remain single, and that is largely out of choice. It means that I don’t have to apologise for my bad days, and I don’t have to feel ‘cajoled’ into doing things I can’t really manage. I don’t go out-out any more, we stay at home at the weekend. I don’t go shopping, we don’t eat out – many might think we live a bit of a pointless existence because these things are out of reach, but you don’t miss what you don’t enjoy. Fatigue, pain and fear (anxiety after fainting in public and being scooped up by ambulance several times) all take the enjoyment out of what other people do without a thought. Sometimes, in the school holidays, we might manage a gentle walk. Last summer we went out for a stroll around a nearby fishing lake and we talked, and enjoyed the fresh air, but that was in the knowledge that I had recovery time available for the week or so afterwards. There is always pay-back, and I knew I would be overwhelmingly fatigued and that I would be in pain. I can only deviate from my pacing routine a little before it fails me. I don’t qualify for health-related benefits (I didn’t score high enough on my PIP assessment) so I have to maintain enough energy for my job, lurching from school holiday to school holiday when I can up my rest, ready for the next half term.  

But there are still many brilliant things in life – my friends, who are always available on messenger if I fancy a chat, and my family, along with my handsome, kind, clever and funny son… and I have found ways to seek pleasure in simple things. Sitting in the garden (albeit in the shade thanks to my sun allergy – Mast-Cell Activation Syndrome is common for EDS patients!) is a lovely way to spend some time. I read a lot, when I can focus, and there is a whole other world in the pages of those books. I like to watch TV, and films – always lying down on my sofa as I only ‘sit’ upright when I am at work.

And last year, over the school summer holidays, I grabbed my laptop and wrote a book! I didn’t know if I could do it, but I wrote in short bursts and self-published a novel about – guess what… a character who is chronically ill.

It was great therapy, having only received my diagnosis a couple of years beforehand it helped me to process my life so far. But I also wrote it for other people who may have similar experiences and who may feel alone with them. I’d noticed on forums how excited people became if EDS, POTs or similar conditions were mentioned on TV, or in a magazine article. It was validation, and community. So, I wanted to write a novel, not so much about chronic illness, but about somebody who happens to have chronic conditions. It is own voice, and this might sound implausible, but it is also (I hope) funny! Because I never lost myself, or my sense of humour, and I wanted readers to see beyond the illness to the character. To know that behind every diagnosis is a normal person, doing their best to live a normal life.

This month is Ehlers-Danlos Awareness month, this week is ME Awareness Week, and Sunday is Fibromyalgia Awareness day: so I wanted to write a little here about my illnesses, and how living with chronic fatigue (CF) goes hand-in-hand with them. I’ve asked a couple of fellow sufferers (and creatives) to also share their experiences of living with CF and how their various disabilities impact it, and will be sharing those on here as guest posts over the next few days.  

It’s my hope to raise awareness of what living with CF is like, but more than that, to build an empathy around it. It’s our general practitioners, specialists, social networks and family who are the vital support system we rely on, to help us and give us strength when our illnesses threaten to overcome us or worse, become our singular identity. It’s important that this support system is informed, not mislead, and fully-equipped to support sufferers in the best ways possible.

I’ve written a few articles about my disabilities, a couple of which are online: about the pressure to ‘succeed’ at work and the blatant disregard and lack of support for chronic illness sufferers in the workplace; and about the stigma around chronic pain and the toxic hero-worship of ‘recovered’ sufferers. I’ve also participated in a podcast with author and fellow fibromyalgia sufferer, Ever Dundas (which will be publishing sometime in the next month or so) about our experience of living with our illnesses, so do keep your eyes peeled for that too.  

I wanted to use this space to shed a little light on what exactly ME, Ehlers-Danlos Syndrome (EDS) and Fibromyalgia are, what they have in common, and how they affect sufferers. It’s important to highlight that no two people’s experience will be the same: in as much the same way that were are all unique, so is our experience of living with these illnesses, and what may work for one person, might not work for another. I’ll be doing a separate blog later about the various coping techniques I find helpful, and the (many) ways in which I mitigate my symptoms (pacing, anyone?)

ME, Ehlers-Danlos Syndrome and Fibromyalgia

So what is ME (Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome) Ehlers-Danlos Syndrome and Fibromyalgia? Well, as with all of these illnesses, the classification, ‘syndrome’ encompasses a myriad of little-understood symptoms, which can affect sufferers profoundly, or not much at all, depending on the person. Predominantly though, sufferers live with crushing, constant fatigue that isn’t relieved with rest; muscle pain; and difficulty with mental processing, also known as ‘cog-fog.’ Due to the crossover symptoms and occurrences of these illnesses (co-morbidity) it can be hard to identify what’s going on and which illness is responsible for which symptoms.

Testing and Assessment

Ehlers-Danlos has thirteen sub-types, twelve of which can now be tested for, as they have an identified genetic marker. Severity exists on a scale, with Type 3, aka Ehler-Danlos Syndrome or Hypermobility Syndrome as it’s now classified (since March 2019) being the mildest form and the only one without a genetic marker, so far. It’s the type I have. It is assessed via a physical examination and a questionnaire. Fibromyalgia is also assessed by a physical examination, as is ME. It is advised that general practitioners carry out a blood-screening to rule out alternative causes before exploring any of these illnesses as a possible cause. I was checked for low vitamin D3, low B vitamins, low ferratin and my liver function was checked along with my thyroid. All fine, so it was off to the rheumatologist I went.

Fibromyalgia
 
My experience with NHS is a long, painful one. I think this seems to be the norm, unfortunately, but I will write about this in another post. I was referred to see a rheumatologist on two separate occasions, first when I was diagnosed with fibromyalgia and secondly with Ehler-Danlos Syndrome. They present many of the same symptoms, however fibromyalgia has specific ‘trigger’ points for pain which are part of its classification, keeping it separate from other illness classifications. (I see my illnesses as part of one, big umbrella of symptoms). I have about eleven pairs of these trigger-points (in a mirror-image, either side of your body) which when pressed with medium pressure become very sore, very quickly. Pain will often radiate down the body from these points when triggered, a bit like a musical string. I also suffer from intermittent IBS, migraine, muscle soreness and stiffness, and chronic fatigue, which is exacerbated after exercise (also a symptom of ME). Fibromyalgia = check.

Helpful info: http://www.fmauk.org/
#spoonie #chronicpain #fibromyalgia

Ehlers-Danlos Syndrome

Ehlers-Danlos Syndrome also presents muscle pain, stiffness, headache, IBS, joint pain and chronic fatigue, with the added bonus of Postural Tachycardia Syndrome (POTS). It makes your heart leap out of your chest like a horse at the races every time you stand up or climb stairs or have a coffee (mine was horrendous when my chronic fatigue was at its worst, after I burnt-out spectacularly, two years ago). It makes life extremely difficult and you worry every time you move, your ticker is going to give-out. So yeah, that’s great.
But EDS’ defining classification (like the trigger-points for fibro) is the presence of hypermobility in the joints. This can vary wildly from extreme (joints popping out of their sockets at will, several times a day) to mild (subluxations, cracking joints, and stretchy skin – like what I have). Essentially all three sub-types share a common denominator: poor collagen. We don’t make the right stuff, and we don’t hold together as we should. (I like to think of it as, you’re made with Super-Glue and I’m made with glue-stick, Tesco own-brand). Because of this, our joints are hypermobile and can bend to angles that just shouldn’t work. They don’t protect our muscles, therefore, from over-extending, and they get damaged. Hence the pain and stiffness. It’s important for an EDS sufferer to strengthen their muscles to protect them.  Yoga and stretchy-shenanigans should only be approached under the guidance of an experienced, informed instructor, and only once a base-level of strength has been established. Pilates is your friend.

Helpful info: https://www.ehlers-danlos.org/
#timetodiagnosis #invisiblevisible #EhlersDanlosAwareness

ME

So that brings us to ME; a ‘diagnosis of exclusion’. It presents with all of the above symptoms, but it lacks the defining symptoms of fibro’s trigger-points, or EDS’ hypermobility. And it’s probably the least understood. However, research is picking up with some interesting preliminary findings. It’s a case of playing the waiting game. It comes out of the blue for many, often following infection or trauma. For others there is no discernible cause. Many sufferers are bed-bound, unable to even lift their head. In milder cases, if a sufferer can be physically active, such as walk about, they often experience and extreme level of fatigue which can last for days or trigger a flare-up lasting weeks or months, or in some cases years.     

https://www.actionforme.org.uk/
#MEAwarenessWeek #MillionsMissing

These are serious, life-long illnesses which hugely disable those who live with them. Because they are little understood, a stigma builds up against them, which is damaging to sufferers, to whom support and understanding is a key part of managing a disabled life.

I write openly about my issues with my mental health, and the two are intrinsic to one another. When I’m having a pain flare, or my brain won’t work, my anxiety spirals, and I feel extremely depressed about my health. When it’s a good day, I find my mood is great and I feel positive and hopeful about the future. It’s an exhausting dance that we do, between two ends of a spectrum, daily. Just being chronically ill, and dealing with everything that comes with that, can make everything worse. It’s so important to have a strong community around us. 

To be told you are invalid because of your health (by society, employers, the benefit system) is utterly soul-destroying and it takes an enormous amount of strength to keep moving forward, researching different approaches and treatments, trying to find ways to continue to work (no thanks to our horrendous benefits system, I talk more about this in the upcoming podcast) and generally trying to find the light in every single (often dark) day.

Several celebrities have recently opened up about living with their invisible, chronic illnesses, throwing much needed light onto the difficulties faced by sufferers: and importantly, smashing the stigmas that disabled people can't enjoy full and happy lives, and success. Just look at Lady Gaga, who lives with fibromyalgia, or Selma Blair, who has Multiple Sclerosis, or Natasha Ngan, who has EDS. All successful in their fields, all living day-in-day-out with disabling, chronic illnesses.