Sarah, 38, Bath, Avon and Somerset, with
her children Dan aged 14, and Emma aged 10.

“I’ve always been a very physical person, having worked on farms all my life. I’d work seven days a week in all weathers and do everything from lambing and logging to looking after bullocks. I used to suffer bouts of fatigue, and there was a suggestion that I had ME [myalgic encephalopathy, also known as chronic fatigue syndrome, but I always managed to work full-time. I could cope if I slept for 10 hours each night, so I always made sure I went to bed early. 

 

My kids have been fantastic, but it must be so difficult for them to see their mum getting upset, and we don’t do half the things we used to, like going out for the day but then, one day I would be OK but the next I’d be exhausted. Everything became an effort. It was like wading through a muddy field – my legs felt as heavy as lead and I’d shuffle rather than walk. Then my knees began to ache. It was tremendously painful, as though there wasn’t enough elasticity in my joints. I’d lie in bed wondering what was happening to me.

 

Even the simplest things, like driving my children to school, became a massive chore as just holding the steering wheel made my arms ache. Then I began to get a sensation as though hot oil was burning through all my veins. It happened every night and stopped me sleeping. At the same time, every joint in my body was sore. Whichever position I lay in, I felt awful pressure and discomfort. I tried painkillers but they never really took the edge off. 

 

By this time I’d started to go to the doctor quite regularly, which was out of character. Nothing would show up in tests but I kept returning because I needed to find out what was wrong with me. I’d be in tears, telling my GP that I couldn’t carry on. Eventually I was referred to a rheumatologist who diagnosed rheumatoid arthritis, purely on my symptoms, as the disorder doesn’t always show up in blood tests. 

 

I was so relieved that I actually had a recognised condition and the pain wasn’t all in my head, and now there were lots of treatments I could try. The first was steroids, which made me feel wonderfully strong. I was also put on methotrexate tablets, but these made me feel sick so instead I had to inject the drug into my stomach. But then, as the quantity of steroids was reduced, the old sensations began to creep back. 

I tried a series of drugs, such as the anti-inflammatory naproxen, as well as amitriptyline to help me sleep and folic acid to stop the methotrexate making me sick. My mind was willing all the medication to work, and at first I convinced myself that it was. But eventually I had to admit that the drugs weren’t helping. 

 

My medical team were amazing throughout – they tried so hard to ease my suffering.

 

Last November the condition became so bad that I moved was assigned a new rheumatology specialist, who took me off all the medication. I begged her not to, but stopping them finally proved that the drugs hadn’t made any difference.  Soon after that, my specialist diagnosed fibromyalgia – an incurable condition that causes widespread muscle pain and fatigue.

When you have something treatable, like rheumatoid arthritis, you have hope because there is always something new to try. But when you’re told you have something incurable, it’s terribly difficult news to take.

 

My specialist suggested a strict, three-times-a-day exercise regime of walking, swimming or cycling. The idea was to build it up slowly, then carry on for the rest of my life, but when you’re working and have children it’s difficult to fit exercise in. 

 

Most people look at me and think there is absolutely nothing wrong, but so many things are a struggle. When I wake up in the morning, I’m so stiff that even getting out of bed or getting dressed is difficult. By the time I’ve finished doing up a second or third button, my arms are aching so much it’s hard to carry on. My 10-year-old daughter has to help me blow-dry my hair.

 

I’m only able to do light duties on a farm now, but I need to keep working as I have kids to support. Some days I just want to go back to bed – it’s a horrible feeling. I try to keep myself as fit as possible by walking, but after three or four minutes I can feel the muscles in the backs of my legs tense. Still, I try to push through it – you have to keep fighting.

 

Another problem with fibromyalgia, as well as the constant dull ache in your head, is that it makes your thinking very foggy. I’ll forget important things like picking up a friend’s children to take to school. That can be very hard to live with.

 

My kids have been fantastic, but it must be so difficult for them to see their mum getting upset, and we don’t do half the things we used to, like going out for the day. I know they understand that I’m struggling, and they do everything they can to help, but it’s the worst feeling in the world when your children have to look after you instead of you looking after them.

 

Recently I joined a local support group that meets monthly, and it’s the most positive action I’ve ever taken. Previously I’d turn my nose up at things like that as I couldn’t understand the benefits, but as well as getting valuable information and advice from the guest speakers, it’s the most liberating feeling. Before, I’d always feel guilty telling people how I felt – I didn’t want to burden them. But when you go to the group, everyone else is feeling exactly the same as you, so it’s possible to talk openly and honestly. I’ve met some wonderful people and they are helping me along the way.”

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