Hi, I’m Ellen! Sassy has kindly given me the opportunity to write a bit about ME, (Myalgic Encephalomyelitis), and my mum’s experience of suffering from it. I think it is so important to raise awareness and I have included some tips for anyone who wants to help somebody suffering from the illness.
In 2011 my mum was diagnosed with ME after many months of feeling very ill and numerous doctor and hospital appointments.
What is ME?
It’s not easy to define what ME is due to many different symptoms and theories as to what causes it. Some say it is a neurological disorder, others an immune dysfunction, but much research is still needed.
How ME effects my Mum:
ME effects people differently and can vary in its severity. For my mum, in addition to an overwhelming tiredness she gets body aches, pains, dizziness and nausea. And I’m talking 24/7. It’s like having bad flu every single day to the point where you can’t get out of bed.
One of the hardest things for suffers is the lack of understanding. You can look well on the surface or perhaps be having a good day but that doesn’t mean you’re cured. The next day might be a very different story. It’s much more than just feeling ‘a bit tired’ and can’t be made better by a good night’s sleep!
The stigma around ME:
Many doctors, (though not all!), don’t understand ME, probably due to not knowing the cause of it. Some can be unsympathetic and dismissive. It’s important to find a doctor who understands and supports you as this is the first step in being diagnosed and feeling better.
How to support someone who is suffering with ME:
Depending on the severity, developing ME can completely change your life, in some cases leaving you bed ridden. If you know someone suffering here are some ways you can help:
• Don’t tell them that they just need ‘a good night sleep’ or to take ‘a refreshing walk in the countryside’ to feel better. The only way to manage ME is to allow your body to rest and pace your activities every day.
• My mum can’t easily plan ahead as she never knows whether she will be having a good or bad day so be flexible and understanding. Plans may need to be adapted to include less walking for example.
• Encourage them to take time out each day to rest. This is the main way my mum can manage her illness. If it means having a Spanish style siesta each day, go for it! And don’t let them feel guilty for missing out on things!
• Offer to help with the more mundane life chores e.g cleaning/walking the dog. It means they can save more energy for the fun things!
But it’s not all bad news! When first diagnosed my mum couldn’t even walk from her bedroom to the kitchen and had to spend months in bed. But now she leads a normal yet slower paced life by building in time each day to rest! Most people improve over time and are even cured after 5-10 years. It’s all about balance and staying positive!
In a funny way I think my mums ME has actually bought some positives to her life. She takes a lot more time for herself and has rediscovered hobbies and interests that she’d given up during the usual frenetic pace of life. Now I’m older I look back and realise how hard it must have been, even at her worst she was always there to pick me up from school and cook me dinner and never complained about how ill she was. She’s an amazing mum!
If you have any questions or would like to find out more, come and say hi at www.ohhelloellen.com or on Twitter