Have you ever experienced that moment of intense pain in your eyes and head when you've opened the curtains on a bright and sunny day? Anybody who has experienced a migraine or even a hangover would likely understand what I'm talking about too. Although photophobia or light sensitivity might seem quite common among the general population, it can be quite debilitating when combined with a chronic illness like ME.
Most people struggle with glare and direct sunlight in their eyes, but what you might not realise is that some people with chronic illness actually cannot tolerate any light at all and might have to spend hours, days, weeks or even months in the dark - and it's not just pain in the eyes that they're avoiding!
This summer was a season of great change for our family. After little more than a year in our flat, my dad had found us a lovely big house with a garden and we were packing again. Moving house can be quite stressful for the healthiest of people, so it can really be a nightmare for somebody with a severe chronic illness like ME.
We actually loved our flat, it was enough for my sister and I, it ticked most of the boxes when we were house hunting a year ago, but there wasn't room for the parents when they came over, and it was starting to get crowded.
Have you been searching for graphics to easily share with friends and family what Myalgic Encephalomyelitis is really like? Would you like to share relevant and informative infographics about ME? Find pictures that will give visual impact and get the point across without wasting your energy and time explaining? I'm so excited to introduce ME Awareness Pictures to you today!
ME Awareness Pictures is a community resource where we can collect and share ME awareness pictures from all over the web. In this post I will tell you where you can find them and even how you can help to expand the collection. There is also an opportunity to be a featured ME warrior!
The main focus of this post is to show you in a step-by-step way how you can edit MEpedia. I was very happy to recently discover the MEpedia website, I think it is a wonderful way to bring the community together and make our voices heard. If you have not heard of this wonderful resource yet, do go have a look!
In a nutshell, ME-pedia.org is a knowledge base powered by the patient community. It was founded by MEAction and relies on crowd-sourcing to build an encyclopedia on the history, science and medicine of ME and CFS. Anybody can get involved and help populate the website with relevant content. Yes, even you!
That means patients, carers, charities, scientists and advocates all working together to create one huge bank of information about ME/CFS! A place where anybody can go to find answers, community and support. Brilliant!
It's time for another personal update. Time to reassess and set realistic goals. This month has been so much harder than I anticipated. Somehow I imagined that summer would bring better health and more energy along with sunnier days and warmer temperatures, but it hasn't really. I have spent so much time in bed!
Despite this, there have been some exciting things happening here. Exciting for me anyway, not sure anybody else would define it as such! Haha...
There are many little things that have brought a smile to my heart even though I have been quite weak and flaring lately. It's important to focus on and cherish those little blessings that we so often overlook in the chaos of everyday life. Cultivating an attitude of gratitude. It really makes things easier to handle even if it will never cure our ills or heal our pain, it can certainly make life more pleasant!