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
In the chronic illness community, I have found some of the strongest people you will ever come across. They are warriors who fight many battles daily, often against their own bodies or minds, just to get through each day. As much as there is hope and strength, there is also a lot of neglect and isolation. It is natural in these lonely and scary times to feel like giving up.
I often come across people who are losing all hope, but there is so much support and love available to us if we just reach out or know where to look. I hope this post will help you to find the support you need.
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
I often see people with ME/CFS writing about how they have spent hours in the emergency room only to be completely disappointed, misunderstood or even disbelieved. They go to the emergency room because they are feeling so weak and exhausted that they don’t know where else to go or what to do, they’re scared because they feel so utterly ill. I understand the fear that leads you to that conclusion, it’s scary to lose control of your body, but it’s often an unnecessary risk to your own health. Let me explain why I think so…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