Grieving for me because of M.E.

My name is Barb, I had Swine Flu in November 2009 and never made a full recovery. For three years I battled through with post-viral fatigue syndrome and in December 2012 I was diagnosed with Chronic Fatigue Syndrome (CFS) also know as Myalgic Encephalomyelitis (ME).

Prior to that I was living a very busy and active life. I was a single Mum to a teenager with Cystic Fibrosis, dealing with regular hospital appointments in Worcester and Birmingham and a daily treatment regime of medications and physiotherapy. I was volunteering for Citizens Advice locally, working as a gateway assessor, full adviser, training assistant and starting up and running what is now a quarterly, international social media campaign, showcasing the work of Citizens Advice across the world (check out #CABLive on Twitter if you’re interested). I enjoyed walking, swimming, pilates, kick boxing, Zumba and salsa classes; I also organised several large salsa parties in the West Midlands and the South East, raising money for various different charities and I even did a skydive for the Cystic Fibrosis Trust.

Life was good, better than it had been for years and for the first time in a long time I was excited about the future! But in September 2012 that all changed, just days after receiving a national award for my social media work for Citizens Advice, I came down with an acute bout of vertigo and my health went rapidly downhill from there.

This blog is about my journey,  learning how to grieve for me, the person I was, the life I had, the future I was planning and about learning how to accept the new “normal”, how best to manage my symptoms and how to make the most of my life with my current limitations.

If along the way my journey, experiences and words can help or inspire someone else, then, to be honest, it will make going through this ordeal worth it!

 

WHAT IS ME/CFS?

M.E. stands for Myalgic Encephalomyelitis and CFS stands for Chronic Fatigue Syndrome. In my opinion, they are basically different names for the same illness (although there are differing views on this and no concrete answers). In the UK the NHS tends to use the term Chronic Fatigue Syndrome, supposedly with an emphasis on the word syndrome, denoting that it is a collection of many different symptoms. However, in my experience, the word syndrome often drops off the end and Chronic Fatigue sounds like something most healthy people complain of at the end of a busy and stressful week! I have found that telling people I have M.E. gives them a marginally better understanding of the severity of what I am trying to deal with.

Within my blog posts I will cover the different ways in which my M.E. affects me, as it varies from person to person and for each person it can vary from month to month, week to week, day to day, even hour to hour. But here is a brief description of some of the more common symptoms:

“… is characterised by a range of neurological symptoms and signs, muscle pain with intense physical or mental exhaustion, relapses, and specific cognitive disabilities … profound, generalised post-exertional loss of muscle power (fatigability); muscle pain that may include tenderness and swelling; and neurological signs. Patients are also prone to relapses which may take the form of recurrences of the original systemic illness, or fresh episodes of muscle weakness, neurologic changes or well-defined cognitive problems. As with many chronic illnesses, fatigue may be present, but in ME patients the fatigue is reported to be post-exertional, often delayed, and quite unlike the ‘fatigue’ experienced by healthy people.” – M.E. Research UK http://www.meresearch.org.uk/