May 12th is always a tough day for me, it’s a day where I feel inspired but also reminded of just how much I fight to have a sense of normality in my life. This day is Fibromyalgia and M.E. Awareness day, two similar invisible illnesses that debilitate the lives of those who suffer from them. My best friend lives life with M.E, also known as chronic fatigue syndrome, and I live with fibromyalgia. As today is a day for sharing knowledge, I wanted to write a post about fibro and hopefully help anyone going through similar chronic illnesses.
I must remind you I am not a medical professional. What I share here are my experiences and personal knowledge of what I go through. If you feel you may have a chronic illness, such as fibromyalgia, go and visit your doctor! Seriously, it’s so much better when you’re getting help! If you’re already diagnosed, do not attempt anything you read about online without consulting your doctor.
So what is fibromyalgia?
Quite simply, it’s a long-term condition that causes pain all over the body. Those suffering with fibromyalgia have pain in all four quadrants of their body, in at least 11 of 18 potential tender points – they are specific places on the body that when pressure is applied it causes severe pain.
As well as generalised pain, there are a large number of other symptoms. I find a lot of other posts I come across only list the surface of symptoms which doesn’t really get across how much we deal with, so bare with me on this. Listed here isn’t everything, there will be symptoms that other fibro sufferers have that I don’t know about;
- increased sensitivity to pain
- muscle stiffness
- muscle twitches
- chest pain
- facial/jaw pain
- irregular heart beat, and pain that mimics heart attack
- fatigue (extreme tiredness)
- energy ‘crashes’
- sleep difficulties (insomnia, broken sleep, aplha-eeg syndrome, sleep apnea)
- restless leg syndrome
- difficulty recalling known words
- poor balance and coordination
- tingling and/or burning sensations across the skin
- feeling of something ‘crawling’ on or under the skin
- short-term memory impairment
- forgetfulness and confusion
- difficulty concentrating
- difficulty learning new information
- impaired reading comprehension
- intermittent inability to recognise familiar environment
- IBS (irritable bowel syndrome)
- nausea and cramps
- multiple allergies
- tinnitus (ringing ears)
- sensory overload
- sensitive to environmental changes (light, noise, pressure, smell etc)
- PMS and menstrual issues (heavy and short cycles)
- easier bruising and scarring
- temporary hair loss
Due to the condition there are also a number of ’emotional’ symptoms that are down to potentially both the neurologic impact and the lifestyle impact of fibromyalgia;
- panic attacks
- mood swings and irritability
This is my day-to-day life.
It’s a scary set of symptoms, and a never ending condition of discovery. Every month I find a new issue and read that it’s yet another symptom, or a symptom I thought wasn’t an issue for me suddenly becomes one of the worst issues I have. There’s no getting used to life with a chronic illness, that’s what makes us fighters and survivors!
But…how do you cope?!
I don’t think there is a single person, ill or healthy, that would read about this condition and think it’s easy. Even the ones that think it’s all just in our heads. Whenever I talk to someone about my health the response is always “how do you manage to live day-to-day?”
It’s been a journey, but I have a good life.
It takes a lot of work, but it’s worth it. When you get into your rhythm, life is worth living. The bad days just make you realise there are good days.
It takes listening to your body and acting on what you’re hearing!
- When you’re tired, rest.
- Spread out your housework across a few days instead of attempting it all in one go.
- Don’t do loads just because you’re having a ‘good’ day as you’ll likely pay for it later.
- Get enough sleep and try to have a routine.
- Have down time – go swimming, do yoga, meditate, just sit in a quiet room. Have time to just be with yourself and get in tune with your body and mental state.
It is now 6 years since I was diagnosed with fibromyalgia; I’ve managed to keep a full-time job, I’m a mum to an amazing four year old and my social life isn’t completely ruined. It’s been a journey, but I have a good life. I wrote a blog about living with an invisible disability back in December 2016, where I shared my lifestyle changes for daily life with a condition like fibromyalgia. Six months on and I still stand by those changes, with one addition.
Life with this condition can quickly fall into depression. It’s a lonely world, it constantly changes and you can get hung up on the things you can’t do. Find what you’re passionate for. Make your life beautiful, fascinating, and worth your time. When you have a passion, the tedious stuff becomes easier and sometimes even fun. For me, I love photography. I’ve been a photographer since I was 14, I studied it at university and then my world was flipped upside down. I didn’t continue my degree, I stopped photographing the bands that I had spent the prior six years with and I was consumed by my deteriorating health. It took four years for me to make a change. I kept telling myself I can’t do what I love because I don’t have the energy or reliability to book shoots.
You don’t start training for a marathon by running 26 miles on your first go!
My love for photography didn’t start by me picking up a camera and shooting a vogue-worthy fashion shoot before my teens. I just loved looking at photographs. My dad was a journalist and non-fiction author so I grew up surrounded by his photography of the troubles in Northern Ireland and space shuttle launches in the US, I was fascinated by images in magazines, I loved the boom of technology that took place during my childhood in the 90’s. So I needed to start there again. I’m not the same person as I was when I was ‘healthy’ – I need to relearn who I am. We’re now in the age of mobile internet devices; smartphones, tablets, laptops instead of desktops; whatever your passion is you can find it online, pretty much. I started following more photography profiles on social media, simply enjoying the beauty and the process through someone else. For my birthday this year I bought myself a new camera. When I’m having a good day at the weekend, and the housework is done, then I venture out with my camera. I’m able to take it easy and slowly get back into my passion. This year I have models that want to work with me. I’ve been lucky timing wise and in a month have my first shoot booked – two years after I started this process.
Having something your passionate about gives you something to work towards, something to give you reason for the lifestyle changes aside from just taking the edge off the pain.