My partner, Robin, is really quite fantastic.
I’ve had Fibromyalgia for about six years, but it took a couple of years to get my diagnosis. I know that a lot of people have waited far longer than that, but those two years seemed to go on forever.
I started developing sharp pains in my wrist when I was typing at work. Quickly the pain started to spread. My hands became numb, I had neck and back pain, and before long I had leg pain and an awkward limp. What was initially thought of as pain related to bad posture or Carpal Tunnel Syndrome soon became suspected multiple sclerosis. My GP put me on Diazepam and sent me for an MRI scan of my brain. The results showed no evidence of MS but my GP increased my dosage every couple of weeks, and before I knew it I was in pain but spaced out, anxious, and drinking cans of Red Bull at my desk to keep me awake.
Soon after that I went on long-term sick and I panicked about what was happening to my body. It seemed out of control. I was referred to a neurologist then a rheumatologist, both of whom wanted to hear all about my childhood and my relationship with my parents (which, for the record, is wonderful – they’re awesome) before concluding I needed to see a psychologist who could help me – with what, he wasn’t sure.
The psychologist discharged me after two appointments telling me he could see “no evidence of trauma” and it was around this point I stopped looking to medics for the answers. After many more months, a number of consultants, a pain management clinic and various combinations of medication I eventually received the diagnosis of fibromyalgia and I was sent on my merry way.
My partner, Robin, is really quite fantastic.
I’m very lucky in that I have quite a lot of control over my lifestyle. I don’t have children so I don’t have the responsibilities and commitments that many fibromyalgia patients have to consider. However, I spent most of my twenties with fibromyalgia and I couldn’t do most of the social things I was used to doing. My lifestyle changes often made me feel old, like I was missing out on the fun things my friends were doing
For example, I chose to stay working full time against the advice of one consultant, which meant slashing the amount of socializing I did. Gone were the days of drinks or dinner after work with friends, and my weekend nights out became significantly different. I couldn’t go dancing or to gigs, and sitting in the cinema was incredibly painful. Galleries and shopping trips were out and so I had to find a whole new way to socialize.
Holidays have changed too. I love to explore and my favorite type of holiday is a city break, wandering around the undiscovered cobbled streets of a new European city. I still do that when I can but I factor in lots more time for sitting in cafes than I used to which, let’s be honest, isn’t all bad!
My partner, Robin, is really quite fantastic. He is an incredible cook (much to my relief because I am not!) and having worked in a professional kitchen he is also obsessive about keeping his kitchen clean. It may sound silly, but these practical things are invaluable because I physically struggle with simple kitchen tasks like lifting pans, chopping onions and washing up.
People joke that it’s convenient I’ve got out of the household chores, but other fibromyalgia patients will know how immensely infuriating it is to be sat in a messy house when your mind wants to tidy and your body won’t let you. Robin helps me with the practical side of this but also helps me manage my frustration and the other emotional effects of fibromyalgia.
Robin’s dad has Chronic Fatigue Syndrome (aka ME) and so he is very used to being at home with someone who struggles with the difficulties of daily life. The rest of his family, similarly, never ask me to push myself and they instantly understand exactly what I mean when I say, “I’m not doing too well at the moment.”
On top of that I have my own family who I know without a doubt would take away my pain in a heartbeat, if only they knew how. My experience is new to them so they often talk about me to health professionals, friends and random strangers(!) in the hope they will discover a hidden cure to pass on to me. They talk to me regularly about how I’m doing and what I’m struggling with and they can tell when I’m lying and need more help.
I also have a wonderful group of friends who push me to make sure I’m not pushing myself. One friend brought a bar stool on to the dance floor so I could sit down and be part of the fun on a night out, others regularly change plans at the last minute or go to the less desirable restaurant because it’s closer for me, all to accommodate my pain. They are incredibly understanding and that is completely priceless.
Focus on what you can do, not what you can’t, and take your time. I am the most impatient person I know and if I start something I want to be brilliant at it immediately, so the fact I’m advising you to take your time is hilarious and insanely hypocritical! But it’s true, and I try to remind myself of it all the time. Don’t become a hermit because you can’t live your ‘old’ life. Find new things to do and enjoy. Meet friends somewhere near your house, go for a 10-minute walk each day, or invite people to your house whilst you lie in your PJs and order takeaway. But do things. If you can’t get out, get online. You can still be sociable from the comfort of your sofa.
Finally, we all have bad days. No one will ever be brilliant at coping with this, so make sure you know where to go and who to turn to when you’re struggling. That support network is absolutely key.
I’m most proud of my blog, called A Life Less Physical. I started writing the blog in May 2013 because I was frustrated at not being able to ‘do’ anything for fun. I thought sitting on the sofa and typing was a way to keep me busy at home, but it ended up becoming the thing that forced me to get up and go out.
The purpose of the blog is to share recommendations for fibro-friendly things to do in the hope other fibromyalgia sufferers will get an idea for fun activities that won’t impact their pain levels. Examples include relaxing breaks away, disability friendly music festivals and gigs, weekend day trips, and things to do at home or with friends. When I haven’t blogged about an activity in a couple of weeks, I know I need to get back outdoors and find something new to do.
The blog also has a section on the emotional impact of fibromyalgia. I struggle with anxiety so I often address this in my blog; I also talk about other struggles such as trying to balance pain with work, learning how to relax or coping with the invisibility of the condition. These posts often strike a chord with readers but also help me to address the many thoughts inside my head.
I am really proud of the blog and I hope that in the coming years it will grow. I really wanted to take something positive from my condition and I feel like I’ve done that. The fact that other people read it and get comfort or ideas from it is a wonderful bonus. My blog can be found at: www.alifelessphysical.wordpress.com.
I struggle with anxiety so I often address this in my blog.
I live in South London, England and would love to find like-minded fibro sufferers in my area. I love to focus on the things that make me happy and build these in to my ‘new’ lifestyle, so no matter how bad I am feeling you will always find me in a little restaurant eating something delicious. Tea, cake and ice cream really keep me going.
I am 30 years old and recently bought my very first house in South London. I live with my boyfriend, Robin, and our two cats. I've had Fibromyalgia for six years and am still surprised by new things I learn about the condition as time goes on. I love sharing experiences through my blog, and love to hear about others experiences of living with Fibromyalgia; we can learn so much from each other.
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