We have officially made it to the final instalment of the ‘Living with…’ series. Or so I thought… I have actually decided to turn this into a six part series, so as well as today’s living with M.E/CFS and the previous instalments of Tourette’s, PCOS, UCTD and Fibromyalgia, I have added living with mental health to the list.

So M.E/CFS – Myalgic Encephalopathy/Chronic Fatigue Syndrome according to the NHS website is a long-term illness with a wide range of symptoms – the most common being extreme tiredness. I personally wouldn’t describe this as extreme tiredness, I would more likely use the terms fatigue or exhaustion.

Other symptoms can include: post-exertional malaise, sleep problems, headaches, flu-like symptoms, sore throat, pain, feeling sick, dizziness and difficulty with concentrating, remembering and thinking to name a few.

Like with many chronic conditions people can experience symptoms at different levels of severity from mild to severe, and experience a whole host of different triggers and symptoms. The key point being whilst we may all be battling the same condition, our experiences and limitations will be varied.

When and how I got diagnosed

I was diagnosed with M.E/CFS around the age of 28. Like with my Fibromyalgia diagnosis I was originally dismissed by doctors as being ‘burned’ out from working in a highly stressful job role. I was constantly told I was stressed and that I was just tired, like most of the population. However the fatigue that was in my body and mind felt so much more than what the doctors were saying, I felt so weak and vacant and would spend time in my working day just lying on the desk unable to function. I would have whole weeks off and feel like it made no difference, until I had no choice, but to signed off for months on end. In the end I had no choice but to leave my job altogether.

I was actually diagnosed with M.E/CFS approximately a year – 18 months after my Fibro diagnosis. My M.E/CFS diagnosis was made by a neurologist and off the back of that I was sent to a chronic fatigue clinic.

What I find different with M.E/CFS

In comparison to my other conditions, I find there is more age diversity when it comes to M.E/CFS with people of all ages experiencing the condition. This does make it easier to find others in my age category who I can relate to – which has been difficult with some of my other conditions.

What I wish people knew about M.E/CFS

Probably what most of us wish other people knew – that M.E/CFS is so much more than being tired! Whilst I think in certain avenues especially in recent times, others are becoming more understanding, I think there is still work to be done to challenge this negative perception which can leave people in the community feeling misunderstood and side-lined.

The most difficult thing about living with M.E/CFS

In all honesty there are probably a number of things, I could list as difficult where M.E/CFS are concerned. However, the one that affects me the most at this stage in my life is the inability to plan for life. Out of all my symptoms from all my conditions, fatigue battles alongside one or two others for that top spot of being most difficult. Mainly because it is that one symptom which can fundamentally stop you in your tracks no matter how hard you try. You can have the best made plans, factor in your pacing, pull out your self-management tool kit, but if today is going to be that day of struggle, you don’t get a say.

Fatigue is the thing that stops me from working, socialising, leaving the house and at times being able to talk. It’s the condition you always have to factor in.

What has M.E/CFS taught me?

It has taught me that perfectionism isn’t everything. Once upon a time in my pre-illness days I would have to do everything to a tee. At work I would be the go-to when somebody wanted something doing and knowing it would be done to a high standard. Yet M.E/CFS has taught me these things don’t matter, putting myself under pressure doesn’t matter because when showering is a struggle you realise what is really important. The world doesn’t stop just because I do.

Here we have it my life with M.E/CFS – remember the series isn’t quite over as I will now be adding my mental health (anxiety/OCD) segment. To learn about my other conditions click on the links at the top of this post. xx

New instalment of the series now available: Click the condition to find out more – Mental Health.