I work with a lovely lady called Louise. We have never met in person as we started working together at the start of the Covid pandemic and so all of our interactions have been on screen. Despite this, we have got to know each other quite well. Louise is one of the most inspirational people I know and I am proud to call her my friend as well as my colleague. Hopefully one day we will meet in person.
Louise is really hard working, dedicated and caring. She works full-time. She’s a wife and a mother and a keen rugby player. She is (by her own admission) very stubborn. You wouldn’t know by seeing her talk at meetings at work, but she has fibromyalgia.
What is fibromyalgia, many of you might ask. Fibromyalgia is a an autoimmune disease causing pain in various parts of the body. Not only is there (currently) no cure, it’s also degenerative. It is thought to be brought on by stressful life events, including birth, injury, trauma, death of a loved one. All experiences Louise has had.
As she has no medical support from health care professionals and no medication, except pain killers when she gets desperate, Louise knows all about self care.
She was diagnosed about four years ago.
She’d been getting a lot of joint pain and was constantly tired. She went to her GP (thinking it could be arthritis as her nan had a history of arthritis). She had blood tests which showed it was not arthritis causing the pain. She had a CT scan which showed a lot of inflammation which could have been cancer, so that was a worrying time, she told me. She then had a further CT scan with full contrast dye – they inject you with dye in your veins so they can see what is going on. She saw a rheumatologist who pressed her in a lot of places and every one hurt. She was told this is a classic sign of fibromyalgia. It wasn’t explained to her, she was just told that it was to do with her Central Nervous System and was advised to see her GP. Unlike some other conditions, there is no specialist treatment or explanation. Fibromyalgia is an autoimmune condition – there’s a signal that tells your brain when you feel pain – it turns on the pain receptors even if there is nothing causing it. It can be triggered by stress, tiredness, overdoing it or generally feeling ill.
The only drug treatment is amatriptaline (anti psychotic drug) and when she tried it, she discovered that she is allergic to it. The only other treatment she was offered is strong pain killers – which she couldn’t take as they knock you out and at the time, she drove to work.
She told me “It really is all about self care. A lot of it is about your mental attitude. After about a year or so I had a bit of a break down over it as I suddenly realised this wasn’t ever going to go away. I’ve got this for life. I’d read about it and I read stories of people who after a few years were bed ridden and no longer working. I absolutely did not want that to be me. I wasn’t going to let that happen and I wasn’t going to let it win. I did six weeks of Cognitive Behavioural Therapy through the Employment Assistance Programme at work. She gave me some helpful tips to combat anxiety – write down everything that is giving you anxiety, look at the list, for those things that you can do something about, make an action plan and all those that are out of your control, cross them off. There’s absolutely no point worrying about them. You have to train your brain. Anxiety causes the pain. It’s mind over matter. It is my brain causing this so I can also tell my brain to stop being so stupid!”
“I joined the rugby team because I am in pain anyway and rugby is a very physical sport, so it’s an excuse for it, rather than being in pain for no reason.”
“Exercise helps. If I stop, I am in much more pain. I’m fortunate that I have been able to do that. Some people have gone beyond that and can’t. I’m determined that’s not going to be me. I won’t give up unless I have to.”
“I started running during the first lockdown. I definitely recommend exercise. Whatever type of exercise you enjoy, be it walking or team sports or whatever.”
“Be in the moment. In those moments when I am playing rugby I forget all about everything else as I have to fully concentrate on the rugby. I just focus on the task in hand. It’s a release.”
Louise tells me that the biggest challenges for her were coming to terms with it being a life long condition and training her brain to never give up.
She also added that sometimes you have to admit defeat. When the pain is really bad, you have to swallow those pills and have a lie down. “On a bad day, I will log off at 5 and curl up in bed and watch TV and zone out. I rarely have a day off sick.”
Having got to know Louise over the last 18 months and seeing her in action at work, I have to agree. You’ve definitely got this Louise.
Thank you so much to Louise for sharing your story.
For more information about Fibromyalgia visit: http://www.fmauk.org/