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 all agree on a few things: ME/CFS is life draining, heavy, isolating, painful, lonely, misunderstood and just plain horrible to deal with. And none of us would ever choose to have it or wish it upon our worst enemy.Continue reading
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, you will find 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.
I often come across people who are losing all hope. They feel so alone in the world, disbelieved or misunderstood, but in reality there is so much support and love available to them if they just reach out or know where to look.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
I am regularly contacted by people who have recently been diagnosed with Post Viral Fatigue or Chronic Fatigue Syndrome. They are often scared, worried and confused, but also hopeful and determined to return to their normal life. Their question is usually the same: what can I do?
Having a diagnosis of PVF or CFS is difficult to deal with because there is so little information out there and often doctors don’t know what to tell you. They haven’t been trained in the management of CFS and are often ill-equipped to give advice to newly diagnosed patients.
In this post, I will outline some of the main points you need to be aware of as a newly diagnosed patient. Things your GP might not tell you. I am not a doctor, but I am a patient, and I have spoken to many other patients with decades of experience in living with this condition.
Doctors call these long-term sufferers “expert patients” and the advice they gave was vital in my initial stages of PVF/CFS. I will summarise that wisdom below in the hopes that it will help many more.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
It’s been a while since I wrote a personal update. I have recently been extremely drained and weak, so haven’t been very social or active online. My primary focus this month was on my itching. I wanted to try to get it under control as it was really getting me down, much more than my ME/CFS does. I was in tears and so very frustrated. The scratching was utterly exhausting and to top it off, I caused myself a massive ME/CFS flare too!Continue reading
Natural Health Worldwide (NHW) is a new website that launched on 1 June, this year. 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/problem.
Appointments are booked through the website and can be conducted by Skype, Facetime, ‘phone or email. This makes the process very convenient and also caters to a forgotten patient population – the housebound and bedridden.Continue reading
I’ve had quite a few people ask what I’m using for pain management. One of my favourite things since falling ill is MSM. It is my one staple since I first heard about it and it’s potential to help the body heal from all sorts of things.
It is sometimes referred to as the “miracle supplement” and also the “beauty mineral” because it is so beneficial in so many areas. One of the reasons for this is that MSM makes our cell walls more permeable, meaning that toxins can be more easily removed and nutrients can more easily be absorbed.Continue reading
Sometimes you don’t notice the weight you’re carrying until you let it go.
This is often such a hard truth to accept, but letting go of that control we try so hard to hold onto can actually be very liberating!
There are many areas in our lives where we crave order and control, but in reality it isn’t up to us and we can save ourselves a lot of pain and suffering if we can learn to let go of our need to control things or have things go the way we had planned.
This is true in our relationships, with our health, our finances and our jobs. We don’t have control over any of it and things will go wrong sometimes, no matter how much you prepare or plan ahead. That is just a fact – life happens. But God is always with us and He makes a way when there seems to be no way. I trust that promise completely.Continue reading