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Emily Newton: How fibromyalgia has impacted me

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Category: General Information

Published on Monday, 02 September 2019 08:42

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I was always extremely active as a child and young adult. I’d danced since I was 3 years old and went to stage school at 18. I was used to dancing for 6-8 hours a day and I was always able to push myself physically and mentally. I had always loved meeting new people and experiencing new things. I liked setting myself challenges and working towards something - I was training for a half marathon when I first began to show Fibromyalgia symptoms. I found it incredibly frustrating as I couldn’t understand what was happening to my body. It’s hard to think back to the ‘old me’ as it feels world’s away from the person I am now. I often find myself wishing I could be that person again.

The journey to diagnosis was one of the most confusing, scary parts of my whole experience with Fibromyalgia. I saw numerous doctors (plenty of whom seemed to dismiss my agonising pain and tiredness as ‘nothing to worry about’), I had countless blood tests, doctors’ visits, A&E dashes and plenty of thoughts that It was all in my head. I hadn’t slept properly for months and was signed off of work because I’d pretty much stopped functioning as ‘Emily’ - I was exhausted, in so much pain and I didn’t know where to go next! Luckily, on my next expedition (that’s seriously what leaving the house felt like at this point) to the doctors, I met with a GP who took me seriously. I remember bursting into tears purely because she was actually listening to what I was saying! When I described my symptoms, she immediately mentioned Chronic Fatigue and Fibromyalgia as possibilities. (I spent a good few hours googling them as I’d never heard of either)! She sent me for even more tests to rule out other things and then eventually I was referred to a rheumatologist. The rheumatologist did yet more blood and nerve tests. Eventually after about 1.5-2 years I received the official diagnosis alongside a concoction of medication to try and help ease the symptoms. I was then handed a leaflet and pretty much sent on my way to live with it. At first, I felt relieved that I finally had an ‘official’ label for how awful I was feeling. It didn’t take long for the scared, depressed and hopeless feelings to kick in - the reality soon hit that this was a CHRONIC illness and I may never get better as there is no cure. Mentally, this took a toll on me. I couldn’t help but compare myself to the person I was before. For me, it was (and still is) so hard to accept that I need to slow down, I was used to living my life at 100 miles an hour and now even a shower can take me an hour to recover from. FMA UK were extremely helpful when I was first diagnosed, their social media platforms and information packs helped me greatly as I felt supported and a lot less alone!!

Life now is still very much a learning curve. Each time I have a bad flare up I try to take note of what I could do to avoid the same thing happening in the future but the truth is I still don’t know my limits and I can be extremely stubborn so sometimes I am my own worst enemy! It’s so easy to push myself too hard on my better days and I still find it extremely hard to cancel plans even though I know I am not well enough to do them. I carry a lot of guilt as I constantly feel like I am letting people down and I have found myself becoming withdrawn from social situations that I once used to love. I don’t actually remember the last time I wasn’t in pain or low in energy so I count the ‘normal pain days’ as a blessing. Overall, it’s fair to say I am still very much trying to come to terms with the contrast of my life now but I am trying to build a positive future around the condition - I am currently having therapy (to help with the impact it has had on me mentally), I’ve had CBT therapy to look at ways to pace myself and I’m trying to be kinder to myself (because let’s face it, when your body is putting you through all that pain, it isn’t helpful to be mean to yourself!) I hope that one day Fibromyalgia is treated with the medical importance it deserves because I know first-hand how devastating it can be without the added feeling that you aren’t being taken seriously! In the meantime, I will continue to raise awareness to the condition via my blog www.emilyunfiltered.co.uk - it’s my goal to educate as many people about this condition and to make fellow Fibro Fighters feel less alone!