While I talk quite often about having ME/CFS I’ve not dedicated any actual posts to it yet, and people have been asking me for a while to concentrate on some health topics. I promised myself that the next time ME Awareness Month came about Myalgic Encephalomyelitis (ME) also known as Chronic Fatigue Syndrome (CFS).
May is a month of Awareness for ME/CFS with ME Awareness Day falling on the 12th of May. The ME Association runs an ME Awareness Week during the second week of May each year (10th – 16th May for 2021) and Action for ME runs a month wide campaign. This year it’s called #yearsinlockdown, focusing on how people with ME/CFS have spent many years in lockdown. This might sound familiar to my regular readers as I spoke about how last year’s birthday in lockdown was my normal.
Last year I tried to fit this into one week to coincide with the ME Association’s ME awareness week and failed because I was also completing a 30 Day blog challenge at the same time. during this week I’m going to be talking about the condition, how I was diagnosed and how it affects my life on a daily basis. I’ll also be answering any questions that people may have.
Last year when the pandemic started I spoke about how I felt that it was especially important to talk about ME/CFS because there was already a significant amount of people reporting post-viral fatigue. The only post I managed to complete last year was very long, but an extremely important story to share. In it I shared my story, including how a bad flu vaccine led to me suffering from flu that year and as a result, I developed ME/CFS. Way back when the pandemic started I had a chat with my dad and said to him that I was worried about how many people would be left with post-viral fatigue, and possibly ME/CFS after recovering from Covid, just as I had after the flu.
Now a year later many people are suffering from “Long Covid” and my worries have come true. It’s currently being discussed by medical professionals in comparison with ME/CFS as to whether they are in fact one and the same. I’ll be discussing this whole topic later this month with as much information and links so you guys can educate yourself. In the meantime, I’ll be talking about my experience with ME/CFS and how I deal with my symptoms so you can take ideas on board and hopefully find things that work for you 🙂
So this is me doing my part and telling my story. I’ll be including as many references and links to sources as possible, however, I will remind everyone that I am not a medical professional. These are just my personal experiences.
The topics I’ll be covering during ME Awareness month are:
What is ME/CFS?
Let’s start with the basics; what is ME/CFS? Why does it have two names? Are ME and CFS the same thing? What does it mean that someone has said I have chronic fatigue? These questions and more will be answered in this post, including a rundown of the main symptoms and what they actually look and feel like from someone who lives with them.
It took a year and a half for me to get diagnosed with ME/CFS and it was a scary process. I’m going to talk about what happened, what I was tested for and why it took so long.
What changed and how I adapted
When I was first diagnosed with ME/CFS I had one set of symptoms that were immediately apparent, however, over time I’ve realised just how complex the condition is. It’s a neurological condition that manifests physically and it affects every single day of my life. I’m going to talk about how my life dramatically changed and how I had to relearn to live life again, just in a different way.
How I get through the bad days
I get asked a lot about how I cope with things and how I get through the bad days. With 6 other health conditions which all interact with my ME/CFS, I tend to have more bad days than good ones so I’ve got a lot of things that help me through the day. From items that help to communication strategies and mindfulness meditation; this is what works for me and I’m sharing it with you guys. It’s not a foolproof list and some of it may work for you, some might not but it never hurts to try something new.
Over To You
The whole point of this series is to be informative and I’m posting this today to give everyone a chance to drop any questions or suggestions in the comments. No question will be considered wrong or “stupid” so please just ask 🙂 I always go by the opinion that if you never ask you’ll never know. If you would prefer to ask or have your question answered in private you’re welcome to DM on Twitter, PM on Facebook or can use my contact form.
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