I have a date tonight – with Twitter! Every Wednesday evening I spend an hour on Twitter, along with a bunch of other ME/CFS warriors, taking part in ME Awareness Hour. It runs from 8-9pm (London time) every Wednesday evening. You can join in the fun too, we’d love to have more advocates taking part!
We post memes, links to research or media coverage, personal experience, all sorts of things that will help shed some light on what life is like with this debilitating illness. We tweet and retweet for an hour, our hope to to make #MECFS trend on the front page to get the most attention we can. I hope you will join us, even if you only retweet other people’s tweets. Come find me on Twitter at: chronic_hopeful
Every Wednesday evening I take part in an online event called ME Awareness Hour. The event takes place on Twitter and it’s goal is to raise awareness for ME/CFS by tweeting and retweeting posts about life with ME/CFS and any recent scientific publications or media coverage on the illness.
I love being a part of something like this because it gets people’s attention when we work together and make some virtual noise all at the same time. Continue reading
When living with a chronic illness, whether it’s a physiological or psychological condition, it is common to start doubting yourself. Your confidence dwindles as you lose the ability to function the way you once did. You might start to feel useless, helpless and hopeless, but there is so much you can still offer the world!
You have overcome so much already. Every day you wake up is a new victory and a clean page in your story on which you can write the next chapter. You’re brave and strong. Things that healthy people take for granted; their mental clarity, their energy, their physical strength – you fight for every little bit of it that you can find just to get through each day!Continue reading
Sometimes it’s hard to accept that when you’re living with a chronic illness, people fall away, but it is something that commonly happens after a period of time, and it might even be beneficial.
Initially, once people are made aware of your struggles, you might have an outpouring of support and practical help from many around you, but over time, when you don’t improve, most people will inevitably drift away as they are unable to make taking care of you a permanent fixture in their lives. They have their own lives to navigate.
When you’re no longer in the same circles, no longer going out, no longer socialising, you’re no longer in their life unless an effort is consciously made on both sides to stay in touch and make things happen. I have seen this happen over and over again with so many people who fall ill. That’s why I don’t believe you should take it personally, it’s just a fact of life – only a precious few will remain, if you’re lucky.Continue reading
I actually left the house this week! Leaving the house is not something that happens very often when you have a chronic illness as debilitating as ME/CFS. Months can go by without seeing the other side of my front door. I have reached a point where I’m able to walk around the house daily without causing too much payback, but going out is still so utterly draining that it usually takes me days to recover.
This week I was able to leave the house for the first time in months. It’s my mum’s birthday today, but we celebrated a little early as our parents were here for their weekend. We went shopping together for the first time in ages!
It was a gorgeously sunny day, so I got dressed in a pretty floral dress and hopped on my wheelchair where I stayed all day. Knowing how taxing an outing is and how much sensory stimulation affects me, I tried to prepare as best I could:Continue reading