I have a chronic illness, a condition called Fibromyalgia characterised by widespread pain and other symptoms including fatigue, muscle stiffness, insomnia and memory problems often known as fibro fog. Similar to several other chronic illnesses, fibro is largely invisible. You might see me walking slowly or using a mobility aid, you might think I look pale or tired but largely if you see me out and about and you don’t know me you wouldn’t look twice. Hence why I am writing this.
I was first diagnosed in March 2020 and we all remember what else happened that month. I worked (and still work) in the NHS in an admin role and this marked the beginning of the busiest and hardest time in my career. It was a long time before I could even start to process the diagnosis and what it meant. It has taken me over three years to accept my condition and to start to adapt to it.
The below infographic is from _chronicallyyou_ on Instagram.
Some days are so bad I can barely move. The pain can be in different parts of my body at different times. Onto fatigue. This is a tiredness like nothing on earth. On a bad day I feel like I’m underwater, in lead boots, pushing a pram through quicksand and in a particularly unpleasant twist, I also have trouble sleeping. My energy levels are much lower than most people’s and my recovery rate is slower. Then there’s the fibro fog; forgetfulness and lack of concentration. The other thing is, if I get a new different pain I never know if it will go away in a couple of days or if it’s another new symptom. I don’t know how it might affect my movement or my sleep or everything and I hate that.
I struggle with how vulnerable fibro makes me feel. It makes me clumsier and more prone to falls so if I’m out alone somewhere I can get very anxious and I really resent this loss of independence. I don’t like thinking of myself as disabled but I am and as a good friend said to me, ‘if you have limited spoons, make sure you use them doing things you enjoy.’ As an aside, spoon theory is well known amongst people with chronic illnesses and here’s a good explainer: What’s spoon theory? The metaphor helping people with chronic illnesses and disabilities plan their days – The Brain Charity This advice has helped me accept the need to sometimes use a mobility aid and now with my beautiful neo-stick Amethyst Quartz | Neo-Walk I’m far less embarrassed. In my experience fibro isn’t something I can ‘power through.’ I have to adapt and learn to live with it. Sometimes this means limiting what I do and I hate letting people down.
Accessibility is a big issue and it’s not something you think about until you have to. Recently my lovely husband David and I went to Oxford and stopped at a motorway services where toilets were down two flights of stairs. I opted for the disabled toilet where there’s a note on the door requiring you to get the key from one of the shops, which I did. While I was in there, a cleaner unlocked the door to let someone else in as there was no indication from the outside that the toilet was occupied and they didn’t bother knocking beforehand. The hotel we stayed in was lovely but didn’t have a lift. Quite often chain hotels, like Travelodge and Premier Inn, only have one room classified for disabled people and when you go in them it is obvious they’re designed for wheelchair users and I don’t want to block a space when someone else really needs it. All I need is a ground floor room and it should be easier to at least ask for one when booking a hotel.
Having fibro impacts on every single part of my life and I hope I’ve given a little insight into what it is like to live with. I recently performed a cabaret evening to raise money for Fibromyalgia and if you’d like to contribute, please click on the button below:
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