Last year was without a doubt the toughest so far. From finally getting a diagnosis after years of chronic pain to a previous trauma causing PTSD and anxiety, but I survived it.
I started my blog in July 2018 when I was inspired to write a poem to try to understand my illness. It was called Hello Fibro and started off this wonderful journey of discovery. I learnt that by writing everything in simple poetry I could get things off my chest and learn new things about myself, reflecting on past and present experiences.
So many doctors dismissed my pain as growing pains or thinking I was a hypochondriac, eventually I found a good doctor.
Fatigue is another huge part of fibromyalgia. It’s so much more than just being tired and it never goes away. It leads to brain fog which makes me really forgetful all of the time. The best way I can describe it is being hungover on life, only you never had the party or got drunk. I often feel old before my time because of this, and even more so due to the fact I have to prioritise comfort over fashion to make sure I’m as comfortable as possible.
One of my most popular posts was about a term I coined that summarised the way in which those with fibromyalgia have a delayed physical reaction to events, whereby we experience discomfort not straight after a stressful or tiring event but days or even weeks after.
Chronic illness is a lot tougher than I ever thought. Bad days are far too common and it reminds me of the reality if it all. On those days all you can do is rest, and that’s okay. I have picked up tips on how to cope with flare ups over time.
A lot of people say I’m too young to be ill, or they judge me and think I’m lazy. Others don’t believe in fibromyalgia. All I want is for someone to listen. My friends are wonderful and always interested to know more and help. Having good friends is so important but what’s more important is being honest with ourselves about our health, not just physically but also our mental health.
I still manage to work though I sacrifice my social life as a result as I do not have the energy to do both. It is hard to manage a busy schedule but I’m slowly learning. Despite the struggles I try to keep a sense of achievement and I still have dreams, though they have had to adjust somewhat.
I’m learning to take things one day at a time although I still can’t help but feel life is passing me by. I try to see the beauty in life and remind myself every day that I’m still alive. I try to focus on the positives but sometimes it’s hard to stay positive when others doubt you or when you doubt yourself. You shouldn’t judge yourself for resting as your body needs it to recover.
Please know you are stronger than your illness. It is hard to admit your struggle and a good day doesn’t mean you are cured, but sometimes you have to show your pain to others to help them understand and see the truth.
(Guess who is going to Disney World this year!!!!!)