Today the 12th of May 2017 it’s all about ME!
Why is May 12th both International M.E. Awareness day and International Nurses Day? The date chosen for these two days is down to just one very special and significant person ~ Florence Nightingale. 12th May was Florence Nightingales birthday, she was a nurse of great talent, foresight and knowledge, plus it is alleged became unwell later in life with what is now known as ME.
Having these two days together is very apt I think, considering I am both nurse and ME sufferer I have a day where I can celebrate those who care for the sick and also raise awareness about ME.
Our Flo’ was quite the woman, an article on the ME Association website gives a little background about her, which I will abbreviate for you.
Florence was born 197 years ago today in Florence Italy, her parents were wealthy English folk. When she reached womanhood she took up nursing, which she felt was her calling. She was given the name “The Lady of the Lamp” after she cared for British soldiers during the Crimean War.
She has been credited with writing the first comprehensive text for nurses and founded a training school for nursing in London. She was also incredibly clever with numbers too.
A pledge was created in 1893 for nurses by Lystra Gretter along with the Committee for the Farrand Training School For Nurses in Detroit, Michigan. It was called “The Nightingale Pledge”, in honour of Florence Nightingale. The pledge has been modified a little since the original version. Nurses in America recited the pledge at their qualifying “pinning” ceremony. I am unsure about the UK, I know I didn’t recite it when I qualified, so presume it’s a tradition held by American nurses. The original pledge was…
It is said, from 1857 Florence became disabled by poor health. Her ailment is said to have been what we now know to be Myalgic Encephalomeylitis (ME). This is why she has been adopted as the “patron saint” as it were of ME, and why 12th May has become the International Awareness Day for ME.
Before I gained my nursing qualification I nursed my Nanna who lived with us. As she became more frail, she struggled to care for herself. She allowed me to help her in all aspects of daily life and personal care. We grew very close during this time which was a gift and I cared for her until she passed away. I was honoured that she allowed me to be there for her.
Following her passing I started my nursing training and even though I no longer use those skills in a professional capacity they have been enormously useful in my private life caring for family. Years ago, from the age of 14, which is when I started working in nursing homes as well as caring for my Nanna, my mum gave me the nickname “Nurse Nuttley”. She was thrilled when I finally earned my nickname and even though mum has passed we still use her nickname for me whenever my “Nurse Nuttley” persona is needed.
So today I am reminding myself that my nursing qualification has not been wasted. I am still using the skills I learnt today, just not in a hospital setting. I am exceptionally proud of my “nurse” title and so share with you my memory of my nursing days..
Then I share with you the date of my official diagnosis, I was told I have ME following the correct diagnostic criteria, and at every appointment it was referred to as ME, even on the handouts we were given at rehab group therapy. However, annoyingly, although the hospital called it ME, the diagnostic letter says CFS (Chronic Fatigue Syndrome) because that is what the hospital have been told to call it! Sounds petty but I loathe the CFS tag, it is not ME. This needs to change along with many protocols still used to treat the illness.
Incredibly, awareness about this illness, especially within the general medical arena, is still poor. We are still lacking in specialist doctors, nurses, physios, OT’s etc to care for patients. Most of us end up in a general clinics, without the properly trained or informed medical staff to advise us and care for us. However, charities such as Invest in ME Research, TYMES Trust, Let’s Do It For ME and Me Research UK are all doing everything within their power to inform, educate and lobby health care professionals to try and change the facilities and availability for the specialist care we need. This is because if the illness isn’t managed correctly the patients can become significantly worse, which for some is permanent.
So, a few bite size facts for you about ME.
- Currently it is estimated that some 250,000 people in Britain are affected by this illness.
- It goes by the names of Myalgic Encephalopathy/Myalgic Encephalomyelitis (ME), Chronic Fatigue Syndrome (CFS), Post-Viral Fatigue Syndrome (PVFS), Chronic Fatigue Immune Dysfunction Syndrome (CFIDS)
- It can affect people of any sex and age, in some cases in children as young as 2 years old.
- Women are 3 times more likely than men to get it.
- A quarter of sufferers are housebound or bedbound.
- Brain fog is a real and unsettling symptom, it means you struggle to concentrate, find correct words, read, write, listen to music, watch TV, memory problems and struggling to keep up with a conversation. Over stimulation is a real issue combined with brain fog. When I am surrounded by sights, sounds, smells and crowds of people, such as in a shopping centre, then often I become too overwhelmed and have to leave. It is exhausting trying to filter through all the senses and stimulation and often can lead to a relapse and post exertion malaise.
- Post Exertion Malaise (PEM) = this is delayed, often by 24~48 hours exhaustion and exacerbation of symptoms following either physical activity or mental, cognitive activity. For us as family we find cognitive exertion causes worse PEM symptoms than physical. PEM is a highly characteristic clinical and diagnostic feature of ME and considered in some respects to be an illness within an illness. (ME Association)
- This illness affects every system within your body. It is not just exhaustion, it can cause severe joint and muscle pain, swollen lymph glands, sore throats, dizziness, nausea, headaches, low blood pressure, shortness of breath, unrefreshing sleep or insomnia, high heart rate, abdominal/gut issues, sensitivity to light, noise, touch, smells, foods, cognitive issues like those explained earlier ~ these are but a few symptoms but are the most common for sufferers.
So on today, International Nurses Day, I would like to say to all of the nurses worldwide I offer you my heart felt gratitude and utmost respect. I humbly thank you for your dedication, hard work, empathy, strength, humour and commitment to giving us, your patients, the care and support we need in our darkest times. I want to acknowledge that I have the deepest respect for you working in conditions far from ideal, on pay that could be much better. You often face long arduous shifts with very little thanks, sometimes come under abuse, and can be lacking in support, staff numbers and in some cases equipment. So quite simply, thank you for all you do.
Also, for International ME Awareness Day, I share with you this video which explains our journey with the illness, I hope you like it and find it informative and not too boring…
Finally, I would like to thank you for taking the time out of your day to read this blog, it means an awful lot to me that you have. I will leave you with a House MD gif, because I adore House and this tickles my funny bone, plus the final word from our Flo’.