M.E Awareness 2020



ID: Graphic with blue background and the word M.E Awareness 2020

Today begins M.E Awareness Week, which goes from the 11th to 17th of May. Tomorrow, the 12th of May, is M.E Awareness Day. This will be my sixth one since I was diagnosed with M.E & this one will be a quiet one. Last year, I had a full on week awareness wise via Social Media and a trip out to see a local monument be lite up blue to show support.

So in the hopes of raising awareness of a disease most people no nothing about or think is "just being tired all the time", I thought I'd re-post my 2018 awareness article, with a few updated tweaks. It will hopefully give anyone reading this who isn't familiar with the disease a good overview of what M.E is.


What is M.E?

copyright Dragonflies and Dreams via instagram
Myalgic Encephalomyelitis or M.E {also known as Chronic Fatigue Syndrome in some countries} is an incurable, life long, complex, Neuro-immunological disease which, in many cases has been triggered by a viral infection. This infection causes abnormalities like an overactive immune system & this goes on to cause numerous other symptoms. Some of these are so severe that a person can become bed bound, which happens in around 25% of M.E cases. Anyone at any age can get it, M.E doesn't discriminate. I myself lived unknowingly with the disease in its milder form from being about 12 years old and was only diagnosed when my health declined rapidly in my mid to late 20's.


What are the symptoms?

  • Extreme bone crushing fatigue which lasts more than 6 months & not eased by sleep, 
  • Muscle & Joint Pain
  • Post Exertion Malaise or PEM ~ a worsening of symptoms after activity.
  • Brain fog
  • Mental fatigue
  • Lack of concentration
  • Short term memory loss
  • Headaches
  • Dizziness
  • Nausea
  • Lack of Appetite
  • Constant sore throat
  • Swollen glands
  • Flu like symptoms
  • Affects Heart function
  • Affects motor & cognitive skills making it difficult to move, speak, read & write
  • Can cause Infertility
  • Muscle Paralysis
  • Seizures
  • Defective Mitochondria ~ which means the body cannot produce energy like a healthy person's.
  • Defective Immune System
  • Sleep Problems ~ Insomnia/over sleeping
  • Gastrointestinal issues ~ IBS like symptoms
  • Food allergies/intolerance
  • Chemical sensitivity
  • Hyper sensitivity to light, noise, smell & touch
  • Inflammation of the muscles & joints

There are many, many more symptoms of M.E but those are the main ones & the ones I have to deal with. It should also be noted that M.E can also be fatal!


Diagnosis/Treatments/Illness Management

There is no diagnostic test for M.E. It's a case of your Doctor ruling out all other diseases that present with similar symptoms. Only when everything else has been ruled, is M.E considered {and this only if your Doctor knows about it and believes it's a real disease!} Then you have to fit into a criteria of having certain main symptoms of the disease for a prolonged period of time. These include fatigue for 6 months or longer, muscle and/or joint pain and Post Exertion Malaise, just to mention a few.

There is no main treatment for M.E. You aren't diagnosed & then talked through a treatment plan or told your life expectancy. While there is promising research going on for a blood test diagnostic & effective treatments, for Doctors & patients right now, it's all about managing the symptoms since it is incurable. 
copyright Dragonflies and Dreams via instagram

Your treatment "plan" is centred around which symptoms you find the most debilitating and you're  given medication to help with those. Pacing & resting/precautionary rest is the main form of illness management. This means learning to pace out activity {if you are able} with periods of rest in-between to help the body cope and adding in rest periods before you even attempt to do something to try & build up enough energy to cope with the activity. There are also many dietary ways that can help, cutting sugar for example can help with inflammation & any digestive issues or food allergies.
{Always consult your Doctor before making any changes regarding diet}


Is Recovery Possible?

While M.E is a life long chronic illness, some people have found over a period of time {& we're talking years here!} have seen improvements. M.E never leaves you even if you have recovered & depending on how severe you were, will depend on how much you recover & how long it will take you. A person who has recovered from M.E & can now be more active will still have to be careful as over exertion can cause a relapse. The hard reality is that only 5% of all people with M.E reach recovery stage.

The hardest part in trying to work towards recovery is the crashes & flare ups, which can come at anytime. These can often set you back & you have to start the process of building up your energy and strength all over again. Many crashes and flare up are often caused by things that are out of our control; picking up a virus or reacting to a medication badly, plus many other things. You have to learn what works best for you as, although people with M.E share a similar symptom list, M.E is unique in many ways to each person it decides to strike.


If you would like to know more about M.E, because maybe you've never heard of it before, or you're newly diagnosed and wanting more information, a good place to start is by browsing my M.E Awareness Page It contains a number of easy to read graphics.


You might to also find it helpful to check out the following sites, as they are great resources to help you understand M.E:




I also recommend watching the following documentaries as they gave a true picture what M.E is like on a daily basis:




Lastly, I want to share with you the information about Blue Sunday, which is run each year by my amazing friend, Anna. This year, due to the circumstances we currently find ourselves, there is sadly no physical aspect to the Blue Sunday Tea Party ~ the entire event is a virtual one. I've listed all the links below with the information along with Anna's Just Giving Page where she is gratefully accepting donations for the M.E Association.

Anna is also running a give away again this year, which I am providing one of the prizes for via my photography website. So be sure to check out all the information.

Tea Party For M.E Instagram

Blue Sunday Tea Party Facebook Event Page

M.E, Myself and I Blog

Anna's Just Giving Page

If you would like to join in with the Blue Sunday Tea Party, all you need to do is wear something blue. Share a photo of your chosen beverage and treat on your social media or the Blue Sunday Facebook page and use the hashtags #BlueSunday2020 and #TeaPartyForME2020

Personally, I'm not only joining Anna in her virtual tea party but I'm having a family one over Zoom. Then afterwards, I'm holding one on my Animal Crossing New Horizons Island for my AC friends, which I'm really looking forward too.


I know that's a lot of information to take in and there is so much more I could share about M.E but I'll leave it there. Please do check out the links if you want to know more, or if you have any questions, feel free to leave me a comment or send me an email via the "Contact Me" box.

I wish everyone a good M.E Awareness Month/Week/Day.

Take care,

L x

Comments

Popular Posts