I have opened my blog to let other chronic illness bloggers & patients to share their stories. Today, is the first instalment of ‘Confessions of a Zebra’ and Bethan, a 24 years old entertainment manager, shares her story about living with Fibromyalgia. Bethan was diagnosed in April in 2018 but has been suffering with symptoms for around 9 years.
Confessions of a Zebra: #1 Fibomyalgia and Me – Bethan
1.What is Fibromyalgia?
Fibromyalgia is a chronic illness that causes widespread pain over the entire body.
2. What are the main symptoms you suffer from?
I have chronic pain all over body 24/7 and I am easily injured. Other symptoms I have are: chronic fatigue, irritable bowel syndrome, sensitivities to foods, smells, noise and lights.
3. How do you manage Fibromyalgia on a day-to day basis?
- I try to pace myself
- I try to stay positive.
- I am honest with myself about my condition.
4. In what way has the NHS supported you?
The NHS offered me, Tai chi for fibromyalgia course, with a good GP who listens.
5.How was your journey to diagnosis of Fibromyalgia?
It was a long tough journey, seeing at least 10 different GPs over 9 years. The majority of which dismissed the pain as growing pains. Lots of blood tests then when nothing came up from that they would give up.
Lots of doctors thinking I was a hypochondriac, over exaggerating, attention seeking until finally I found a GP who cared and when nothing came up in even more blood tests she referred me to a rheumatologist.
He immediately diagnosed me with fibromyalgia which I had suspected from some time. Although I knew more about it than the rheumatologist and he insisted it will go away on its own and I know after nearly 10 years with it already it will not just go away!
6.What have you learnt about your condition since being diagnosed?
Some days will always be worse, and some will be better, it is more than just pain ans fatigue, it affects every part of your life, it is very misunderstood, and many don’t believe it is real, there is no treatment that suits everyone.
7.How has Fibromyalgia changed your life?
I can’t do as much as I would like to anymore, I tire very easily so can only achieve so much each day. I must plan in rest days to ensure I don’t make it worse. I barely have a social life. I just about have the energy and will to get through work, but that is all I can do. I often feel like my life is on pause while everyone else’s moves forward. Even getting out of bed is near impossible a lot of the time.
8.What perceptions changed since you’ve been diagnosed with Fibromyalgia?
The way people think you are better just because you are smiling and hiding it, trying to get on in your life. I have realized who my true friends are, and they are interested in my illness and try to make things easier for me. The fact that you are judged for what you can’t do not what you can do.
9.What information do you wish you was given when you were diagnosed?
That it won’t just go away, it’s a part of me no matter what and I have to learn to accept it and live with it for the rest of my life.
10.Have you gain any new hobbies since been diagnosed with Fibromyalgia?
Yes, I now love reading and logic puzzles.
11.What emotional support do you have for Fibromyalgia?
I had Cognitive Behavioural Therapy for anxiety and coping with the diagnosis
12.What do you find is the most challenging part about your illness?
You never know how you are going to feel from minute to minute. It makes it hard to plan anything in advance or how to best manage your condition as it is constantly changing.
13. What advice would you give to someone newly diagnosed with Fibromyalgia?
Learn as much as you can, don’t just take others word for it, even professionals. Something that works for someone else might not work for you but give everything a go. You never know. Try not to feel guilty when you can’t do something or if you let someone down as you need to look after yourself first. You must prioritize self-care.
14. What are your plans for the next year?
Carry on at the job I love but try to manage my work life balance better. Continue writing my blog, it really helps me come to terms with my illness and makes me think about it from a different point of view.
Sharing is Caring
To help raise awareness of Fibromyalgia, we would love if you shared Bethans story.
After reading Bethans story I found that Thai Chi is recommended for pain management by the British Medical Journal.
If you are interested in Thai Chi you can find classes near you here.
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If you liked this post, you can read more about Bethans life with Fibromyalgia on
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