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
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 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
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
When living with a chronic illness it is easy to let all sorts of negative feelings creep in. Guilt, loneliness, fear, frustration, these are all common emotions among spoonies, and they’re not the only ones or the worst.
The problem with letting such emotions linger is that they tend to cause havoc in our bodies, often making us more ill. It is important for people with any sort of chronic illness to find ways to reduce stress and negativity if they wish to feel any sort of improvement. Continue reading
Living with a chronic illness like ME/CFS often means that you are housebound and unable to enjoy the outdoor activities you once loved. You might be like me, love nature and going exploring, but your condition has left you stranded in your home.
Although there is no magic cure to get you out and about, there are a few things I have done to help me enjoy nature while I remain indoors. There is a calm and peace that comes from being around trees and plants. Lets see how you might bring some of that nature indoors.Continue reading
Having Chronic Fatigue Syndrome, or any other chronic illness for that matter, can be extremely draining and leave you without much energy to do even the most basic things. How do you cope when you only have enough energy to do one or two things each day?
There are a number of things I started doing (or avoiding) once I realised that I was constantly reaching beyond my limits and actually causing my flare-ups, I will share them here. Continue reading
This might seem like a strange motto for the new year, but before you decide I’ve lost the plot, let me explain: I have Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis or ME/CFS. It’s main characteristic is Post Exertional Malaise (PEM). Feeling really ill, weak and exhausted after any physical, emotional or mental exertion.
This means brushing my teeth, getting excited about a visitor coming or writing this post is exhausting and will have consequences in the form of a variety of symptoms.Continue reading