It can be quite tricky deciding what to buy your friends with chronic illness because of all the limitations and intolerances we often have. What would be useful and not harmful in their condition?
There are many lists out there, and they're all slightly different depending on the condition they're tailored for, so I'm making a list of the things I would have loved to receive over the years of being housebound.
I have chronic fatigue and chronic pain as my main symptoms and I struggle with sensory over-stimulation and occasionally anxiety, so anybody with ME/CFS or Fibromyalgia and even those with Migraines and Arthritis might appreciate these items.
As anybody with ME/CFS and their carers will know, many doctors and health care practitioners still treat ME as a psychological disorder, when in fact it has been proven to be physiological. Patients have been dismissed for decades, disbelieved, misunderstood and symptoms ignored.
The current treatment recommended for ME/CFS patients is CBT (Cognitive Behaviour Therapy, a type of psychologically based talk therapy) and GET (Graded Exercise Therapy, a controlled exercise program). This came about due to findings that came out of the PACE Trial which has been reviewed recently and found to be based on flawed principles. The whole trial was unscientific and skewed, not at all a sound basis for deciding how to treat ME/CFS.
As you might know by now, I spend every Wednesday evening on Twitter, along with many other ME/CFS warriors, taking part in ME Awareness Hour. It runs from 8-9pm (London time) every Wednesday evening.
We tweet about what life is like with this life draining illness. We tweet and retweet for an hour, hoping to to make our hashtags trend on the front page of Twitter so we can get the most attention possible. I hope you will join us, even if you only retweet other people’s tweets, every bit helps!
It’s easy to get caught up in all the negatives that happen in life. Things don’t go your way, you fall ill, you lose people or your job, you feel sick, there are just so many things that can bring us down, but this is just part of life.
The minute we stop expecting life to be a fairytale and accept reality, that’s the moment we open ourselves up to the truth and the freedom that comes with it. It’s hard to expect perfection at all times. It’s hard on ourselves and on those around us. Nobody can live up to that expectation. Life doesn’t work that way.Continue reading
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