Those of us with fibro are very aware of the daily challenges we experience and I appreciate that for many, the phrase ‘living fabulously with fibro’ sounds like an oxymoron. We may feel great one day but terrible the next or go through whole periods of time that are more difficult and necessitate more help/support than others. Before I was diagnosed, I was terrified about what was wrong with me and spent day after day Googling my symptoms until the fear of not knowing and the constant speculation became unbearable. Whatever was wrong, I just had to know and knew I would deal with it, whatever it was. I’ll never put myself through that again. Don’t live in fear – you know what’s normal for you and what isn’t and when something isn’t right, deal with it. Having read about others’ experiences, I was lucky I saw a GP who took me seriously from the outset; I don’t think he had much choice though – the pain throughout my body and stiffness of my hands and feet were severe and I went into my appointment armed with a full list of all of my symptoms (pain, stiffness, temperature sensitivity, insomnia, anxiety etc). After blood tests which came back all clear, I was referred to a Rheumatologist who examined me, did more tests, and told me he would have a diagnosis for me within a week. He was as good as his word, emailing me after a week with diagnosis fibromyalgia, put me on Lyrica, and the rest is history…
It’s been six months since the diagnosis and I am still taking Lyrica, although I am currently weaning myself off it. It was a big help at a time when I really needed relief from my symptoms but I hope to get to a point when I don’t need it anymore. I’m very interested in exploring natural methods of maintaining wellness, especially as I am planning a round-the-world the trip and want to be well enough to enjoy my travels. It’s clear that with fibro what works for one person may not work for someone else so my advice to anyone with fibro, or any other chronic condition, is to work out and do whatever works for you.
Here are some things that I’ve been doing to try to live fabulously with fibro:
- Give yourself time
As I wrote in my first blog post, mornings are the worst for me. I usually wake up feeling rubbish and need time to get myself together. The best mornings are those when I don’t have to set an alarm, I get to wake up when my body wants to and I can spend some time in bed getting my thoughts together. I like to have a cheeky mocha, avocado on toast and watch something – loving RuPaul’s Drag Race at the moment, absolutely hilarious. Work days were tougher as I had to get up early but I allocated a ten-minute guilt-free snooze into my wake up time to just lie in bed and think about what I needed to do in the day ahead.
I also accept that it may take me longer to do things than other people. I used to work full-time as a teacher and my priority was to have enough energy to get through my lessons each day. When I get tired, I get brain fog but I had a lot of lesson planning and marking to do which took me longer than it used to. I just did my best and set manageable targets for myself.
I am currently taking a well-being career break to focus on my health, happiness and contemplate future life choices – as I have spent years putting the needs of others before my own. When you have a chronic condition like fibro, self-care is not selfish, it is an absolute necessity.
- Get outside
I definitely have days when all I want to do is keep the curtains closed, stay in bed and block out the world but I know that when I force myself outside I feel better. You can’t beat fresh air and some sun on your face to make you feel more human.
- Listen to your body and plan your day accordingly
This speaks for itself really. On the days I wake up feeling more with it and more energised, I try to get a lot done (although I may pay the price for that the following day…) On those roadkill days when getting out of bed and getting on with the day are achievement enough, then I’ll settle for just surviving the day.
- Try to stay positive
I know, there is nothing worse when you are feeling like you’ve been chewed up, spat out, and you can’t think straight because of the pain you feel than someone telling you to try to stay positive. I could quite happily punch someone in the face if they said that to me on a bad day – but it’s a cliche because it’s true. I feel less pain when I am happier, emotionally in a good place and not stressed about work. Don’t be too hard on yourself, your best is good enough. Don’t terrorise yourself with your thoughts either – I am terrible for doing this! I overthink to the point of brain explosion, I know it’s unhealthy but I can’t always stop myself doing it. What helps me to calm down is asking myself these questions: 1) Does it really matter? 2) Will it matter tomorrow? Next week? Next year? 3) What can you do to change it – if nothing, drop it. Find some way to accept whatever you are stressing over, make your peace with it and let it go. That said, feel free to remove toxic/negative relationships and situations from your life. I have and feel so much better for doing so. Life is hard enough as it is and you need to take care of you.
Do what you love. Find things that excite you and lift your mood – especially important on bad days. I love art, especially street art and sculpture, films (I have been known to watch three films in a day at the cinema!), and travel. I try to find ways to incorporate these passions into my life as much as possible.
- Stay connected – actual contact if you feel up to it, use social media if not.
I am an introvert who needs time on their own to recharge but I know it’s important to maintain strong connections with people who mean a lot to me. It’s how we feel loved, understood and appreciated. However, when I was undiagnosed, scared about what was wrong, I went into crisis mode and kept people at arms length – close but not too close. I didn’t always have the energy to socialise anyway and I didn’t want to be a burden, perceived as that person who is a ‘drainer’, always moaning about their health, looking to other people to make them feel better. To be honest, in trying to survive and be strong, I probably went too far and just isolated myself.
When I knew what was wrong then I felt able to open up, tell people what I’d been going through and the response was great. Not everyone fully understands – it’s difficult to I think when you haven’t experienced it – and I don’t talk about it with everyone as I still don’t want to be seen as a negative moaner but it’s important to have a support network around you, trusted people you can talk to about the bad days as well as good.
I’ve been through a lot but I’m a positive person (most of the time). Fibro has made life different, certainly more challenging and at times unbearable. However, there is more to me than having fibro. I’m speaking out because I would like there to be more awareness and understanding of the condition, for all of us, but I don’t want fibro to define me. I’m determined to live a quality life regardless and want to do good in the world… Keep strong and living fabulously folks!
Take care, Lisa.