Category Archives for "Life With M.E."

Why I don’t go to A&E when my ME/CFS flares

Why I don't go to emergency room for ME CFS flares BLOG

I often see people with ME/CFS writing about how they have spent hours in the emergency room only to be completely disappointed, misunderstood or even disbelieved. They go to the emergency room because they are feeling so weak and exhausted that they don’t know where else to go or what to do, they’re scared because they feel so utterly ill. I understand the fear that leads you to that conclusion, it’s scary to lose control of your body, but it’s often an unnecessary risk to your own health. Let me explain why I think so…Continue reading

12 Tips To Help You Adjust After An ME, CFS Or PVFS Diagnosis

A man sleeping next to his dog. Title reads 12 tips to help you adjust to your new normal. Are you struggling to adjust after your ME / CFS diagnosis?

I am regularly contacted by people who have recently been diagnosed with Post Viral Fatigue or Chronic Fatigue Syndrome. They are often scared, worried and confused, but also hopeful and determined to return to their normal life. Their question is usually the same: what can I do?

Having a diagnosis of PVF or CFS is difficult to deal with because there is so little information out there and often doctors don't know what to tell you. They haven't been trained in the management of CFS and are often ill-equipped to give advice to newly diagnosed patients.

In this post, I will outline some of the main points you need to be aware of as a newly diagnosed patient. Things your GP might not tell you. I am not a doctor, but I am a patient, and I have spoken to many other patients with decades of experience in living with this condition.

Doctors call these long-term sufferers "expert patients" and the advice they gave was vital in my initial stages of PVF/CFS. I will summarise that wisdom below in the hopes that it will help many more.

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M.E. Awareness Campaign: The Effects Of Myalgic Encephalomyelitis

A bed with lots of pillows in front of a blue wall. Title reads: The Effects of M.E. awareness campaign featuring quotes from people with M.E.

In ​2017 I created the "​​Effects of ME" campaign for ME Awareness month in May. Quotes ​were collected from patients about how ME affects their daily life and I then used those quotes anonymously to create impactful graphics which the community could share during the online awareness campaigns.

The campaign continues to run to this day, with new quotes ​trickling in all the time. The graphics have been very well received in the M.E. community and ​continue to be shared widely​. People relate to the quotes and it makes expressing their experience so much easier.  I hope you will find this collection useful for your own advocacy efforts too.

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International Day of People with Disabilities: Not All Disabilities Are Visible

Man in a wheelchair with his hand on the wheel. Title reads: Not all disabilities are visible. International day of people with disabilities.

December 3 is International Day of People with Disabilities. It's a great opportunity to raise awareness and make some noise all over the internet (and in real life) if you can manage it. The message I want to get across this year, is that not every disability is visible.

There are many conditions that do not display any outward signs of illness or disability, but they are just as debiitating as any condition you can clearly identify.

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My Many Symptoms Of ME/CFS In 2015

A long list of symptoms, title reads: my symptoms of ME/cfs in 2015. Dozens of fluctuating symptoms.

You might be wondering why on earth I'd write about the symptoms of ME/cfs when everybody knows Chronic Fatigue Syndrome or ME is about always being tired. What most people don't know is that this neurological illness causes dozens of unrelenting symptoms that fluctuate constantly and are quite unpredictable. The very least of these is an unfathomable exhaustion at the slightest exertion!

Fatigue is the least of our worries - let me share with you the list of symptoms that ME patients have to deal with on a daily basis, you might just be surprised at how strong we really are... not at all the lazy, weak, not-trying-hard-enough people that the general population thinks we are! We are warriors fighting constant battles within our own bodies every minute of every day.

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