Tag Archives for " ME/CFS "

International Day of People with Disabilities: Not All Disabilities Are Visible

Man in a wheelchair with his hand on the wheel. Title reads: Not all disabilities are visible. International day of people with disabilities.

December 3 is International Day of People with Disabilities. It's a great opportunity to raise awareness and make some noise all over the internet (and in real life) if you can manage it. The message I want to get across this year, is that not every disability is visible.

There are many conditions that do not display any outward signs of illness or disability, but they are just as debiitating as any condition you can clearly identify.

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The Long Road To Diagnosis: My First 6 Months of ME/CFS

A country scene with a muddy path in the hills with mountains in the background. Title reads, The long road to diagnosis, my first 6 months of Myalgic Encephalomyelitis.

It all started in 2014. I would occasionally get random, migrating pains in my hips, thighs and arms. It was quite painful and alarming. Because it never hung around long, but just came and vanished quickly, I didn't do anything about it. It wasn't very frequent initially.

By November 2014 I was in constant pain. At this point I went to see my doctors, but they couldn't help me. They did loads of blood tests and couldn't find anything wrong. They were frustrated and had no answers. So they just sent me home with painkillers. Months passed, but the pain didn't.

Background

Let me just set the scene here: I was working full time in a job I absolutely loved. I had a full social life which included hanging out with housemates and my friends from church. It was also a stressful year due to all sorts of external circumstances, including a move into my own flat, an attempted illegal eviction and the loss of my closest friend, but I was making the most of it, enjoyed working and having lots of fun too.

Taking Control Of My Health

I decided to take matters into my own hands. I decided that this undiagnosed pain was simply my body telling me that I needed to get fit and healthy. I wasn't eating too well at that point in life, eating lots of things I should have been avoiding, and I was very overweight. I decided to change my diet to try and improve my health.

I researched food and health issues I knew I had and came up with a diet I thought would be beneficial to my own body. It was very natural and healthy. I later discovered that it was basically something called Paleo. I hadn't heard of it before, but it was great.

I finally started this new lifestyle on the 1 February 2015. Spending the next two months eating clean and doing exercise to lose weight and get fit. Little did I know, I was doing the very thing that would make me worse!

Making Things Worse

I believe that I already had undiagnosed Chronic Fatigue Syndrome and by increasing my exercise and my work load, I actually did more damage. Despite having lost 9kg on my new diet and feeling much better about myself in general, I was getting ill frequently and often had really bad migraines. I started getting really sleepy at work and dosing off by 10am! Not okay.

Realising Something Was Very Wrong

By Easter Sunday I was completely out of it. I had already been in bed for a few days with terrible earache and a horribly sore throat. That's when the shaking started and I knew something was very wrong.

Initial Diagnosis

After another 2 months of doing and redoing blood tests without any clues as to what it could be, it was finally suggested that I might have Post Viral Fatigue Syndrome. I was told it usually goes away after a few weeks, but that in some cases it could last for a few months. I was unhappy with the diagnosis as I knew this was not just fatigue, it was so much more!

I went to Google and was surprised to find that every search result took me to pages about ME/CFS. When I read all the symptoms (there are over 30 common symptoms) I realised that I had almost every one of them! I just never thought they were related. It all started to make sense. I was eventually re-diagnosed with CFS.

Chronic Fatigue Syndrome

Despite the most unfortunate name of this illness, the diagnosis fits my condition perfectly and it has since been confirmed by various people including doctors and psychologists at a Chronic Fatigue Clinic.

By the time I had my confirmation in writing, over 6 months had passed. Unfortunately, this is a very common time frame for diagnosis of ME/CFS as they hope the initial post viral fatigue passes or that they can rule it out by finding something else to diagnose. This is terrible because it means that patients spend the first, crucial months trying to push through and live normally, when they should be resting for a better chance at recovery.

A diagnosis did bring relief, for a while, until I realised there's nothing they can do for me and I was more or less left to manage it on my own. Doctors can prescribe painkillers and antidepressants and they will sometimes refer patients to other specialists for further investigation or confirmation of diagnosis. That's it.

Treatment Options

There is the possibility that Cognitive Behaviour Therapy or Graded Exercise Therapy are prescribed, but neither are a cure and patient recovery rates are below 10% with both of these therapies.

Graded Exercise Therapy has also been known to cause more harm than good.

As a result of much debate and the debunking of the controversial PACE Trials, the NICE guidelines for the treatment of ME/CFS are currently being reviewed. 

I was offered CBT which I attended for 2 years. It did not help me improve, but it did provide some insights and practical advice.

A country scene with a muddy path in the hills with mountains in the background. Title reads, The long road to diagnosis, my first 6 months of Myalgic Encephalomyelitis.

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​What About You​, What Was Your Diagnosis ​Like?

I'd love to hear your story! Feel free to comment below, contact me​ or if you'd like to write a guest post and publish your story on this website, click here.

More About Life With M.E.

Celebrating My Rebirth-day BLOG
A day in the life of ME BLOG
Blog Link-up Dec
A girl sitting on her bed holding a cup of tea, resting her head on her knees. Title reads, I'm okay, seriously. How can I be physically disabled and not depressed? By Chronically hopeful
A country scene with a muddy path in the hills with mountains in the background. Title reads, The long road to diagnosis, my first 6 months of Myalgic Encephalomyelitis.

​Thank You For Stopping By!

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Update: Muscle Wastage And Personal Grooming In ME/CFS

Char in her pyjamas, sitting in the sunshine in the middle of her room. Title reads: muscle wastage and personal grooming, a personal update

​A couple of days ago we had some gorgeous autumn sunshine after a few dark and dreary days. ​I'd just got up and was getting dressed when I realised how warm the sun was and decided to sit right there and collect some sunshine D! The rest was welcome though, dressing is hard with a weakened body.

​I only managed about ten minutes in that chair, but it was lovely and warm. I love the sunshine so much, the warmth really brings a sense of wellbeing and eases the aches a bit. Not looking forward to a long winter, but it will make those sunny moments that much more amazing!

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Reflections On Faith Through Chronic Fatigue And Pain

A bird soaring in the sunset sky. Title reads: Reflections on faith through chronic illness after 18 months of chronic fatigue and pain.

​Today marks 18 months of this ​Chronic Fatigue Syndrome. At least 18 months in this severe housebound state, we imagine I might have had it milder for at least 6 months before this. As a Christian, I find myself reflecting on the role of my faith through chronic illness.

I don't believe God made me ill or that He is testing me. I don't think God works like that. In my view, that would contradict His character of Love. ​Many people who suffer from long term illness and disability question God's love and wonder why they are so unwell. In this post I want to address those questions.

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