CFS/ME & Fibro

International ME/CFS & FM Awareness Day

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Image courtesy of meaware.wordpress.com

My life as a career woman has been over for a couple of years now. I really enjoyed my job – working full-time as a Sales Administrator and also creating marketing ideas for the company. I dressed up for my job; make-up done and hair in place. Now pyjamas are my daily uniform, and I don’t have the energy, or motivation, to put on make-up. Leaving my job was the hardest thing to do. I had always earned my own money since I left school. But now, with work an impossibility, I was to rely on benefits. I felt such a failure.

I had been diagnosed with CFS (Chronic Fatigue Syndrome) and Fibromyalgia. I knew something hadn’t been quite right for a while from having difficulty getting out of an armchair to feeling pain in my muscles and joints. I waived it away with ‘it’s probably a virus.’ But it wasn’t. The symptoms worsened and others arrived to join the list: brain fog, dizziness, memory problems, fatigue that was beyond the relief of sleep. The list grew. I have suffered with depression for many years, so with the increase of symptoms came a mental crash. I felt useless. I couldn’t answer the phone and didn’t want to open the front door. In short I was a mental and physical wreck. I couldn’t see how I was going to get out of it, or if it were ever possible.

It’s been a year and seven months since the diagnosis, although the symptoms started two years before. I’ve had to come to an acceptance of my situation, even though I hate being so ill, although that is no mean feat. It’s meant really slowing down my life to a snail’s pace just to be able to get out of bed in the morning. I can do small tasks for 1-3 days a week, but any more I will end up bed bound. I congratulate myself for the small things I am able to do, things healthy people take for granted – having a bath, doing the washing up, and on a really good day I get the hoover out. You see these chronic illnesses are called ‘fluctuating illnesses.’ That means that no two days are ever alike. One day I might have very little pain, the next I can have brain fog, pain and numerous other symptoms become acute. The symptoms vary from day to day whether I’ve done very little or not. And I can never judge the next day by the day before. This makes life complicated and frustrating. I can’t plan ahead even if I’m very careful and get plenty of rest. My body makes up it’s own mind.

Symptoms vary from from one sufferer to another, so you can’t judge someone’s chronic illness just because you know someone with ME/CFS and/or Fibromyalgia. Everyone one of us are unique and live life the best we can. These chronic illnesses have also been termed as ‘invisible illnesses.’ You can’t see the physical effects, you can’t see the symptoms that have turned our lives upside down. We all have a long list of symptoms. Mine are brain fog (poor concentration), forgetfulness, light sensitivity, noise sensitivity, smell sensitivity, sensitive skin, muscle soreness, chronic pain (particularly in my legs and feet), sore throat, chronic headaches, painful neck glands, sleep disturbance and insomnia, digestive problems, alcohol intolerance, bloating, diarrhoea, dizziness, irregular heartbeat, poor body temperature regulation, depression, shortness of breath, muscle spasms, lack of motivation, restless leg syndrome. It’s like a hypochondriac’s dream isn’t it. But it’s very real. And that list is by no means exhaustive. Others with the condition may have more or differing symptoms – as I said before, each of us are unique.

A sad side-effect of this illness is other people’s response to it. Can you imagine losing friends and family because they think you’re making it up and/or want attention? Being told that it’s all in your head? Being told that you need to get out more? I don’t know of any other illness that prompts such a cold, hard-hearted response. It’s hard enough understanding ME/CFS when you have it, it’s devastating when those you love and care about walk away out of disbelief. Having a chronic illness that cuts you off from life is a lonely place to be, especially when you feel so ignored by those close enough to care. Granted, it’s very difficult for others to understand what this feels like, and to try to put yourself in the shoes of someone who is so ill is very difficult. That’s why people like me support the many organisations that push for understanding of this very complicated chronic illness. So why is it so necessary for us to promote it so much? Approximately 250,000 people in the UK have CFS – men, women and children. And it’s not a new illness either. ME (Myalgic Encephalomyelitis) was coined in 1956 by British researchers. The World Health Organisation (WHO) categorised it as a neurological illness in 1969. So this is a medically recognised condition. And it can affect anyone – even you. It can range from mild symptoms to debilitating. So today (12th May 2014) is ME Awareness Day, and is a great opportunity to learn more about this condition and, if you know someone has this chronic illness, how it affects them. More importantly, it will give you more insight to know how to help them.

For further information, please take a look at the following websites, and thank you for reading.

Action for ME

The ME Association

Association of Young People With ME

Fibromyalgia Association UK

UK Fibromyalgia

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