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
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
It’s almost noon and I’m still in bed. I just Sat up actually when my sis brought me a nice big mug of decaf with coconut oil and quercetin in. Part of my morning routine now, though I’m starting to wonder whether coffee is one of my histamine triggers, despite being decaf. I might stick to golden tumeric milk instead.
I had been doing so well for so long that I had almost forgotten how bad these flares can get. It can be discouraging when you are reminded so unexpectedly of the horrible passenger you carry with you always.
This ME/CFS might be managed or worked around for a time, but it does come back to show itself from time to time, makes sure you remember it’s still there and just how strong it is.Continue reading
I have spent so much time on the sofa and in my bed again this week. One would think I’d no longer be surprised by this, but I continue to shake my head every time it happens.
It’s the carbohydrate effect.
This current flare is most likely due to the fact that I’m out of ketosis again since trying to deal with my allergies/histamine disorder. I assume I’m no longer fat adapted because, amongst other things, my munchies have returned with a vengeance!
You see, I’ve increased certain carbs (mainly apples and sweet potatoes) which help reduce histamine building up in the body, but by trying to solve one problem (itching, hives) I’m causing another (ME/CFS flare).
It’s a vicious circle, but one has to decide what the priority is and work with that. For me it was the itching. I just couldn’t take it anymore!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
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
I actually left the house this week! Leaving the house is not something that happens very often when you have a chronic illness as debilitating as ME/CFS. Months can go by without seeing the other side of my front door. I have reached a point where I’m able to walk around the house daily without causing too much payback, but going out is still so utterly draining that it usually takes me days to recover.
This week I was able to leave the house for the first time in months. It’s my mum’s birthday today, but we celebrated a little early as our parents were here for their weekend. We went shopping together for the first time in ages!
It was a gorgeously sunny day, so I got dressed in a pretty floral dress and hopped on my wheelchair where I stayed all day. Knowing how taxing an outing is and how much sensory stimulation affects me, I tried to prepare as best I could:Continue reading