When I first got ME/CFS, I was so utterly exhausted, I slept many hours a day and I slept at night too.
Later I was introduced to one of ME's most horrible symptoms: insomnia. It's quite ironic that people think we sleep all day when really we're just utterly exhausted, mentally and physically drained, but unable to sleep, especially at night.
I found myself nodding off in the day, trying hard to stay awake, and then at night when it's finally okay to go to sleep, my body and mind are wide awake and in no mood for rest, buzzing and restless, despite still feeling utterly wrecked.
Christmas has changed so much over the years. From huge family get-togethers, to multinational bring-and-share gatherings of friends, to small meals with just my sister and I in my bedroom, to every combination in between! I think it’s safe to say that we don’t really have a typical Christmas tradition in our family.
This year we had a lovely quiet day at home, just the 4 of us. I was doing okay despite having had a bath the night before, I actually managed to spend most of Christmas upright with my family in the living room!
This post will be a recount of our celebration, but will also include tips on how I coped with the holiday chaos.Continue reading
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.
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 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
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.