"What is it like living with fibromyalgia? Difficult, unpredictable and painful."

13 September 2021

My name is Jess and I’m 32. I was diagnosed with fibromyalgia in 2017 shortly after being diagnosed with rheumatoid arthritis.

Apart from getting a leaflet on the condition at the time of diagnosis, I didn’t really feel like I had many resources to help with my condition. It’s been a lonely journey.

“During lockdown was the first time I can say I understood my condition and how it affects me.”

Although, it's been a tough year for the world with the pandemic, I have to say very selfishly that I've had a great year.

For the first time, I felt like everyone was forced to move at my pace… at the pace of ALL of us suffering from chronic pain conditions.

I felt less pressured to be active and less anxious knowing I wasn’t missing out on anything because everyone else was also just… STILL still.

“I used the down time to focus on my nutrition and physical health.”

Listening to my body has benefited my overall health.

I've been working from home for 18 months and I’ve definitely found a good routine with work. I get to take my time when I wake up, I have the opportunity to stretch out my joints and muscles. This helps to get them warmed up and less achy. Previously, I was rushing out of bed at 6am to get pushed around by strangers on the train.

I've learnt to enjoy my own company by finding things that help me, like working out. These activities have helped to alleviate some of the symptoms of my condition.

“I must admit when it comes to relationships, whether it is platonic or romantic, I still struggle to navigate these.”

There’s a lot to unpack around the topic of relationships, at the root of it all is the fact that it’s hard maintaining any relationship as a sick person.

I think when it comes to romantic relationships, I've built up a defence mechanism as you just don’t know when a person will get bored/tired of dealing with a sick person with a condition that is so unpredictable.

“Exercise has been life changing!”

I've developed a habit of stretching and light exercise to get my day started. I find that I'm a lot more energetic and more likely to come out of the bedroom, which in the past has served as my sanctuary even during the day.

Also, practicing mindfulness/meditation and allowing myself to rest and sleep more during lockdown helped. I have learnt that if I give my body what it needs, which is a lot of rest, a good sleep schedule and the right nutrition, I feel better overall.

“I've stopped explaining myself to anyone who doesn’t make the effort to understand my condition.”

I would love it if everyone I talked to about my condition would just do their own research. I've had a few people do this and it’s the biggest act of love, it showed me that they cared enough.

It's difficult and exhausting trying to explain something that sounds SO made up.

I mean who’s going to believe the girl who's up and full of energy, dancing and working out one day, and then the next day can't turn her body in bed?

Employers are understanding on paper but when you start having regular flare ups and can't work as fast or at all, it becomes this elephant in the room. You sense the energy that everyone is fed up with you, but they can't really tell you. Then you start walking on eggshells and the anxiety starts to creep in, it's just a vicious cycle.

If I had it my way employers would train and educate managers, about different conditions. This would mean that the manager knows how to effectively manage staff with long term health conditions. It would help as difficulties can arise when employers have no clue just how difficult it is to simply turn up to work.

“For me personally, mental health has played a major part in my quality of life.”

Everything starts in the mind and my worst flare ups have always been when I am also unhealthy mentally. When I'm in a good place with my mental health, it's just easier to manage my pain.

Supportive relationships allow me to live my authentic self. This means living comfortably and not having to fake at being well all the time.

I enjoy taking care of myself and seeing the benefits. In a way, I feel healthier now than I did when I wasn’t sick.

I've also come to appreciate that my body is extra incredible! It is looking out for me and when I'm not treating it as well as I should, it lets me know and I appreciate that.

I'm very hopeful. I'm hopeful because in 2017 I never imagined I would ever feel close to normal ever again. I never imagined a life without excessive medications that had me bed ridden. I have found that through simple lifestyle changes, I've managed to reclaim my life and I know it's only going to get better.

“If I could share any advice with others living with arthritis, I would say...”

  1. Please make peace with your body. It is not working against you; in actual fact it's working for you.
  2. Be kind to yourself because none of us asked for this condition, we are simply doing our best.
  3. Find a tribe/community! Who else will understand you better than another spoonie?

We’re here whenever you need us.