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…
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…
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…
People with ME all suffer at varying degrees, we cannot compare our flares to somebody else’s. What one considers an ME/CFS flare another considers just another regular day with ME. What one person with ME considers a normal day, might be somebody else’s idea of torture. Once thing they all have in common is that everybody’s battle is devastating. We learn to acknowledge and respect everybody’s pain and everybody’s victories, because despite not fully understanding each other’s experiences, we can…
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,…
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…
Sometimes, when we’re living with a chronic illness, no matter how hard we try to do the right thing, we just flare anyway. Most of us have experienced this to some degree. For example, you might wake up in the morning and feel like a ton of bricks are weighing you down into the mattress and every movement is painful and exhausting. You can’t for the life of you remember what you might have done in the days before to…
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…
Natural Health Worldwide (NHW) is a new website that launched on 1 June, 2017. It is a portal which connects patients from all round the World with NHW health practitioners. These practitioners, also from all round the World, can be Medical Doctors, other qualified Health Professionals or Experienced Patients. Each practitioner has an individual webpage where they can describe their qualifications, their experience and what they specialise in. Patients can search the site by type of practitioner and or illness…
Would you like to know how you can reduce the stress that comes from doing life with a chronic illness? When living with a chronic illness it is easy to let all sorts of negative feelings creep in. Guilt, loneliness, fear, frustration, helplessness, these are all common emotions among spoonies, and they’re not the only ones or the worst. But the problem with letting such emotions linger is that they tend to cause havoc in our bodies, often making us…
